Feature

The American Academy of Pediatrics is urging physicians and hospitals to take steps to mitigate the wave of pediatric respiratory illnesses following its unsuccessful bid to have the government declare a national emergency.

Updated guidance from the group outlines measures to optimize resources to manage a surge of patients filling hospital beds, emergency departments, and physicians’ practices.

A separate document from the AAP endorses giving extra doses of palivizumab, a monoclonal antibody used to prevent severe infection in infants at high risk of respiratory syncytial virus (RSV), as long as the illness is prevalent in the community.

Upticks in rates of RSV and influenza, along with a crisis in children’s mental health, prompted the AAP and the Children’s Hospital Association to petition the Biden administration on Nov. 14 to declare an emergency. Such a move would free up extra funding and waivers to allow physicians and hospitals to pool resources, the organizations said.

Despite those challenges, the AAP stressed in its new guidance that routine care, such as immunizations and chronic disease management, “cannot be neglected.”
 

Shifting resources

Officials at some children’s hospitals said that they have already implemented many of the AAP’s recommended measures for providing care during a surge, such as cross-training staff who usually treat adults, expanding telehealth and urgent care, and optimizing the use of ancillary care spaces.

“A lot of this is just reinforcing the things that I think children’s hospitals have been doing,” Lindsay Ragsdale, MD, chief medical officer for Kentucky Children’s Hospital, Lexington, said. “Can we shift adults around? Can we use an adult unit? Can we use an occupied space creatively? We’re really thinking outside the box.”

Andrew Pavia, MD, chief of the division of pediatric infectious diseases at University of Utah Health, Salt Lake City, said large children’s hospitals have been actively sharing practices for handling a surge through various channels, but the new guidance could be a useful “checklist” for small hospitals and physician practices that lack well-developed plans.

The AAP’s suggestions for pediatricians in outpatient settings include stocking up on personal protective equipment, using social media and office staff to increase communication with families, and keeping abreast of wait times at local emergency departments.
 

Addressing a subset of kids

In updated guidance for palivizumab, the AAP noted that earlier-than-usual circulation of RSV prompted pediatricians in some areas to begin administering the drug in the summer and early fall.

Palivizumab is typically given in five consecutive monthly intramuscular injections during RSV season, starting in November. Eligible infants and young children include those born prematurely or who have conditions such as chronic lung disease, hemodynamically significant congenital heart disease, or a suppressed immune system.

The AAP said it supports giving extra doses if RSV activity “persists at high levels in a given region through the fall and winter.” Published studies are sparse but contain “no evidence of increased frequency or severity of adverse events with later doses in a five-dose series nor with doses beyond five doses,” the group added.

The guidance may encourage payers to pick up the tab for extra doses, which are priced at more than $1,800 for cash customers, Dr. Pavia said. However, that recommendation addresses “a pretty small part of the problem overall because the injections are used for a very small subset of kids who are at the highest risk, and more than 80% of hospitalizations for RSV are among healthy kids,” he added.

Dr. Ragsdale and Dr. Pavia have reported no relevant financial relationships.

A version of this article first appeared on Medscape.com.

The American Academy of Pediatrics is urging physicians and hospitals to take steps to mitigate the wave of pediatric respiratory illnesses following its unsuccessful bid to have the government declare a national emergency.

Updated guidance from the group outlines measures to optimize resources to manage a surge of patients filling hospital beds, emergency departments, and physicians’ practices.

A separate document from the AAP endorses giving extra doses of palivizumab, a monoclonal antibody used to prevent severe infection in infants at high risk of respiratory syncytial virus (RSV), as long as the illness is prevalent in the community.

Upticks in rates of RSV and influenza, along with a crisis in children’s mental health, prompted the AAP and the Children’s Hospital Association to petition the Biden administration on Nov. 14 to declare an emergency. Such a move would free up extra funding and waivers to allow physicians and hospitals to pool resources, the organizations said.

Despite those challenges, the AAP stressed in its new guidance that routine care, such as immunizations and chronic disease management, “cannot be neglected.”
 

Shifting resources

Officials at some children’s hospitals said that they have already implemented many of the AAP’s recommended measures for providing care during a surge, such as cross-training staff who usually treat adults, expanding telehealth and urgent care, and optimizing the use of ancillary care spaces.

“A lot of this is just reinforcing the things that I think children’s hospitals have been doing,” Lindsay Ragsdale, MD, chief medical officer for Kentucky Children’s Hospital, Lexington, said. “Can we shift adults around? Can we use an adult unit? Can we use an occupied space creatively? We’re really thinking outside the box.”

Andrew Pavia, MD, chief of the division of pediatric infectious diseases at University of Utah Health, Salt Lake City, said large children’s hospitals have been actively sharing practices for handling a surge through various channels, but the new guidance could be a useful “checklist” for small hospitals and physician practices that lack well-developed plans.

The AAP’s suggestions for pediatricians in outpatient settings include stocking up on personal protective equipment, using social media and office staff to increase communication with families, and keeping abreast of wait times at local emergency departments.
 

Addressing a subset of kids

In updated guidance for palivizumab, the AAP noted that earlier-than-usual circulation of RSV prompted pediatricians in some areas to begin administering the drug in the summer and early fall.

Palivizumab is typically given in five consecutive monthly intramuscular injections during RSV season, starting in November. Eligible infants and young children include those born prematurely or who have conditions such as chronic lung disease, hemodynamically significant congenital heart disease, or a suppressed immune system.

The AAP said it supports giving extra doses if RSV activity “persists at high levels in a given region through the fall and winter.” Published studies are sparse but contain “no evidence of increased frequency or severity of adverse events with later doses in a five-dose series nor with doses beyond five doses,” the group added.

The guidance may encourage payers to pick up the tab for extra doses, which are priced at more than $1,800 for cash customers, Dr. Pavia said. However, that recommendation addresses “a pretty small part of the problem overall because the injections are used for a very small subset of kids who are at the highest risk, and more than 80% of hospitalizations for RSV are among healthy kids,” he added.

Dr. Ragsdale and Dr. Pavia have reported no relevant financial relationships.

A version of this article first appeared on Medscape.com.

The American Academy of Pediatrics is urging physicians and hospitals to take steps to mitigate the wave of pediatric respiratory illnesses following its unsuccessful bid to have the government declare a national emergency.

Updated guidance from the group outlines measures to optimize resources to manage a surge of patients filling hospital beds, emergency departments, and physicians’ practices.

A separate document from the AAP endorses giving extra doses of palivizumab, a monoclonal antibody used to prevent severe infection in infants at high risk of respiratory syncytial virus (RSV), as long as the illness is prevalent in the community.

Upticks in rates of RSV and influenza, along with a crisis in children’s mental health, prompted the AAP and the Children’s Hospital Association to petition the Biden administration on Nov. 14 to declare an emergency. Such a move would free up extra funding and waivers to allow physicians and hospitals to pool resources, the organizations said.

Despite those challenges, the AAP stressed in its new guidance that routine care, such as immunizations and chronic disease management, “cannot be neglected.”
 

Shifting resources

Officials at some children’s hospitals said that they have already implemented many of the AAP’s recommended measures for providing care during a surge, such as cross-training staff who usually treat adults, expanding telehealth and urgent care, and optimizing the use of ancillary care spaces.

“A lot of this is just reinforcing the things that I think children’s hospitals have been doing,” Lindsay Ragsdale, MD, chief medical officer for Kentucky Children’s Hospital, Lexington, said. “Can we shift adults around? Can we use an adult unit? Can we use an occupied space creatively? We’re really thinking outside the box.”

Andrew Pavia, MD, chief of the division of pediatric infectious diseases at University of Utah Health, Salt Lake City, said large children’s hospitals have been actively sharing practices for handling a surge through various channels, but the new guidance could be a useful “checklist” for small hospitals and physician practices that lack well-developed plans.

The AAP’s suggestions for pediatricians in outpatient settings include stocking up on personal protective equipment, using social media and office staff to increase communication with families, and keeping abreast of wait times at local emergency departments.
 

Addressing a subset of kids

In updated guidance for palivizumab, the AAP noted that earlier-than-usual circulation of RSV prompted pediatricians in some areas to begin administering the drug in the summer and early fall.

Palivizumab is typically given in five consecutive monthly intramuscular injections during RSV season, starting in November. Eligible infants and young children include those born prematurely or who have conditions such as chronic lung disease, hemodynamically significant congenital heart disease, or a suppressed immune system.

The AAP said it supports giving extra doses if RSV activity “persists at high levels in a given region through the fall and winter.” Published studies are sparse but contain “no evidence of increased frequency or severity of adverse events with later doses in a five-dose series nor with doses beyond five doses,” the group added.

The guidance may encourage payers to pick up the tab for extra doses, which are priced at more than $1,800 for cash customers, Dr. Pavia said. However, that recommendation addresses “a pretty small part of the problem overall because the injections are used for a very small subset of kids who are at the highest risk, and more than 80% of hospitalizations for RSV are among healthy kids,” he added.

Dr. Ragsdale and Dr. Pavia have reported no relevant financial relationships.

A version of this article first appeared on Medscape.com.

Among the more remarkable legacies of the COVID-19 pandemic is how quickly federal regulators, the health care industry, and consumers moved to make at-home testing a reliable tool for managing a public health crisis.

But that fast-track focus is missing from another, less publicized epidemic: an explosion in sexually transmitted diseases that can cause chronic pain and infertility among infected adults and disable or kill infected newborns. The disparity has amplified calls from researchers, public health advocates, and health care companies urging the federal government to greenlight at-home testing kits that could vastly multiply the number of Americans testing for STDs.

Online shoppers can already choose from more than a dozen self-testing kits, typically ranging in price from $69 to $500, depending on the brand and the variety of infections they can detect.

But, except for HIV tests, the Food and Drug Administration hasn’t approved STD test kits for use outside a medical setting. That leaves consumers unsure about their reliability even as at-home use grows dramatically.

The STD epidemic is “out of control,” said Amesh Adalja, MD, a senior scholar at the Johns Hopkins University Center for Health Security. “We know we are missing diagnoses. We know that contact tracing is happening late or not at all. If we’re really serious about tackling the STD crisis, we have to get more people diagnosed.”

Preliminary data for 2021 showed nearly 2.5 million reported cases of chlamydia, gonorrhea, and syphilis in the United States, according to the Centers for Disease Control and Prevention. Reported cases of syphilis and gonorrhea have been climbing for about a decade. In its most recent prevalence estimate, the agency said that on any given day, one in five Americans are infected with any of eight common STDs.

The push to make at-home testing for STDs as easy and commonplace as at-home COVID and pregnancy testing is coming from several sectors. Public health officials say their overextended staffers can’t handle the staggering need for testing and surveillance. Diagnostic and pharmaceutical companies see a business opportunity in the unmet demand.

The medical science underpinning STD testing is not particularly new or mysterious. Depending on the test, it may involve collecting a urine sample, pricking a finger for blood, or swabbing the mouth, genitals, or anus for discharge or cell samples. Medical centers and community health clinics have performed such testing for decades.

The issue for regulators is whether sampling kits can be reliably adapted for in-home use. Unlike rapid antigen tests for COVID, which produce results in 15-20 minutes, the home STD kits on the market require patients to collect their own samples, and then package and mail them to a lab for analysis.

In the past 3 years, as the pandemic prompted clinics that provide low-cost care to drastically curtail in-person services, a number of public health departments – among them state agencies in Alabama, Alaska, and Maryland – have started mailing free STD test kits to residents. Universities and nonprofits are also spearheading at-home testing efforts.

And dozens of commercial enterprises are jumping into or ramping up direct-to-consumer sales. Everly Health, a digital health company that sells a variety of lab tests online, reported sales for its suite of STD kits grew 120% in the first half of this year compared with the first half of 2021.

CVS Health began selling its own bundled STD kit in October, priced at $99.99. Unlike most home kits, CVS’ version is available in stores.

Hologic, Abbott, and Molecular Testing Labs are among the companies urgently developing tests. And Cue Health, which sells COVID tests, is poised to launch a clinical trial for a rapid home test for chlamydia and gonorrhea that would set a new bar, providing results in about 20 minutes.

Alberto Gutierrez, who formerly led the FDA office that oversees diagnostic tests, said agency officials have been concerned about the reliability of home tests for years. The FDA wants companies to prove that home collection kits are as accurate as those used in clinics, and that samples don’t degrade during shipping.

“The agency doesn’t believe these tests are legally marketed at this point,” said Mr. Gutierrez, a partner at NDA Partners, a consulting firm that advises companies seeking to bring health care products to market.

“CVS should not be selling that test,” he added.

In response to KHN questions, the FDA said it considers home collection kits, which can include swabs, lancets, transport tubes, and chemicals to stabilize the samples, to be devices that require agency review. The FDA “generally does not comment” on whether it plans to take action on any specific case, the statement said.

CVS spokesperson Mary Gattuso said the pharmacy chain is following the law. “We are committed to ensuring the products we offer are safe, work as intended, comply with regulations, and satisfy customers,” Ms. Gattuso said.

Everly Health and other companies described their kits as laboratory-developed tests, akin to the diagnostics some hospitals create for in-house use. And they contend their tests can be legally marketed because their labs have been certified by a different agency, the Centers for Medicare & Medicaid Services.

“The instruments and assays used by the laboratories we use are comparable to – and often the same as – those used by the labs a doctor’s office uses,” said Liz Kwo, MD, chief medical officer at Everly Health. “Our at-home sample collection methods, like dried blood spots and saliva, have been widely used for decades.”

Home collection kits appeal to Uxmal Caldera, 27, of Miami Beach, who prefers to test in the privacy of his home. Mr. Caldera, who doesn’t have a car, said home testing saves him the time and expense of getting to a clinic.

Mr. Caldera has been testing himself for HIV and other STDs every 3 months for more than a year, part of routine monitoring for people taking PrEP, a regimen of daily pills to prevent HIV infection.

“Doing it by yourself is not hard at all,” said Mr. Caldera, who is uninsured but receives the tests free through a community foundation. “The instructions are really clear. I get the results in maybe 4 days. For sure, I would recommend it to other people.”

Leandro Mena, MD, director of the CDC’s division of STD prevention, said he would like to see at-home STD testing become as routine as home pregnancy tests. An estimated 16 million–20 million tests for gonorrhea and chlamydia are performed in the United States each year, Dr. Mena said. Widespread use of at-home STD testing could double or triple that number.

He noted that doctors have years of experience using home collection kits.

The Johns Hopkins Center for Point-of-Care Technologies Research for Sexually Transmitted Diseases has distributed roughly 23,000 at-home STD kits since 2004, said Charlotte Gaydos, DrPH, a principal investigator with the center. The FDA generally allows such use if it’s part of research overseen by medical professionals. The center’s tests are now used by the Alaska health department, as well as Native American tribes in Arizona and Oklahoma.

Dr. Gaydos has published dozens of studies establishing that home collection kits for diseases such as chlamydia and gonorrhea are accurate and easy to use.

“There’s a huge amount of data showing that home testing works,” said Dr. Gaydos.

But Dr. Gaydos noted that her studies have been limited to small sample sizes. She said she doesn’t have the millions of dollars in funding it would take to run the sort of comprehensive trial the FDA typically requires for approval.

Jenny Mahn, director of clinical and sexual health at the National Coalition of STD Directors, said many public health labs are reluctant to handle home kits. “The public health labs won’t touch it without FDA’s blessing.”

Public health clinics often provide STD testing at little to no cost, while health insurance typically covers in-person testing at a private practice. But most consumers pay out-of-pocket for direct-to-consumer kits. Commercial pricing puts them out of reach for many people, particularly teens and young adults, who account for nearly half of STDs.

Adalja said the FDA has a history of moving slowly on home testing. The agency spent 7 years evaluating the first home HIV test it approved, which hit the market in 2012.

“Home testing is the way of the future,” said Laura Lindberg, PhD, a professor of public health at Rutgers University, Piscataway, N.J. “The pandemic opened the door to testing and treatment at home without traveling to a health care provider, and we aren’t going to be able to put the genie back in the bottle.”

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

Among the more remarkable legacies of the COVID-19 pandemic is how quickly federal regulators, the health care industry, and consumers moved to make at-home testing a reliable tool for managing a public health crisis.

But that fast-track focus is missing from another, less publicized epidemic: an explosion in sexually transmitted diseases that can cause chronic pain and infertility among infected adults and disable or kill infected newborns. The disparity has amplified calls from researchers, public health advocates, and health care companies urging the federal government to greenlight at-home testing kits that could vastly multiply the number of Americans testing for STDs.

Online shoppers can already choose from more than a dozen self-testing kits, typically ranging in price from $69 to $500, depending on the brand and the variety of infections they can detect.

But, except for HIV tests, the Food and Drug Administration hasn’t approved STD test kits for use outside a medical setting. That leaves consumers unsure about their reliability even as at-home use grows dramatically.

The STD epidemic is “out of control,” said Amesh Adalja, MD, a senior scholar at the Johns Hopkins University Center for Health Security. “We know we are missing diagnoses. We know that contact tracing is happening late or not at all. If we’re really serious about tackling the STD crisis, we have to get more people diagnosed.”

Preliminary data for 2021 showed nearly 2.5 million reported cases of chlamydia, gonorrhea, and syphilis in the United States, according to the Centers for Disease Control and Prevention. Reported cases of syphilis and gonorrhea have been climbing for about a decade. In its most recent prevalence estimate, the agency said that on any given day, one in five Americans are infected with any of eight common STDs.

The push to make at-home testing for STDs as easy and commonplace as at-home COVID and pregnancy testing is coming from several sectors. Public health officials say their overextended staffers can’t handle the staggering need for testing and surveillance. Diagnostic and pharmaceutical companies see a business opportunity in the unmet demand.

The medical science underpinning STD testing is not particularly new or mysterious. Depending on the test, it may involve collecting a urine sample, pricking a finger for blood, or swabbing the mouth, genitals, or anus for discharge or cell samples. Medical centers and community health clinics have performed such testing for decades.

The issue for regulators is whether sampling kits can be reliably adapted for in-home use. Unlike rapid antigen tests for COVID, which produce results in 15-20 minutes, the home STD kits on the market require patients to collect their own samples, and then package and mail them to a lab for analysis.

In the past 3 years, as the pandemic prompted clinics that provide low-cost care to drastically curtail in-person services, a number of public health departments – among them state agencies in Alabama, Alaska, and Maryland – have started mailing free STD test kits to residents. Universities and nonprofits are also spearheading at-home testing efforts.

And dozens of commercial enterprises are jumping into or ramping up direct-to-consumer sales. Everly Health, a digital health company that sells a variety of lab tests online, reported sales for its suite of STD kits grew 120% in the first half of this year compared with the first half of 2021.

CVS Health began selling its own bundled STD kit in October, priced at $99.99. Unlike most home kits, CVS’ version is available in stores.

Hologic, Abbott, and Molecular Testing Labs are among the companies urgently developing tests. And Cue Health, which sells COVID tests, is poised to launch a clinical trial for a rapid home test for chlamydia and gonorrhea that would set a new bar, providing results in about 20 minutes.

Alberto Gutierrez, who formerly led the FDA office that oversees diagnostic tests, said agency officials have been concerned about the reliability of home tests for years. The FDA wants companies to prove that home collection kits are as accurate as those used in clinics, and that samples don’t degrade during shipping.

“The agency doesn’t believe these tests are legally marketed at this point,” said Mr. Gutierrez, a partner at NDA Partners, a consulting firm that advises companies seeking to bring health care products to market.

“CVS should not be selling that test,” he added.

In response to KHN questions, the FDA said it considers home collection kits, which can include swabs, lancets, transport tubes, and chemicals to stabilize the samples, to be devices that require agency review. The FDA “generally does not comment” on whether it plans to take action on any specific case, the statement said.

CVS spokesperson Mary Gattuso said the pharmacy chain is following the law. “We are committed to ensuring the products we offer are safe, work as intended, comply with regulations, and satisfy customers,” Ms. Gattuso said.

Everly Health and other companies described their kits as laboratory-developed tests, akin to the diagnostics some hospitals create for in-house use. And they contend their tests can be legally marketed because their labs have been certified by a different agency, the Centers for Medicare & Medicaid Services.

“The instruments and assays used by the laboratories we use are comparable to – and often the same as – those used by the labs a doctor’s office uses,” said Liz Kwo, MD, chief medical officer at Everly Health. “Our at-home sample collection methods, like dried blood spots and saliva, have been widely used for decades.”

Home collection kits appeal to Uxmal Caldera, 27, of Miami Beach, who prefers to test in the privacy of his home. Mr. Caldera, who doesn’t have a car, said home testing saves him the time and expense of getting to a clinic.

Mr. Caldera has been testing himself for HIV and other STDs every 3 months for more than a year, part of routine monitoring for people taking PrEP, a regimen of daily pills to prevent HIV infection.

“Doing it by yourself is not hard at all,” said Mr. Caldera, who is uninsured but receives the tests free through a community foundation. “The instructions are really clear. I get the results in maybe 4 days. For sure, I would recommend it to other people.”

Leandro Mena, MD, director of the CDC’s division of STD prevention, said he would like to see at-home STD testing become as routine as home pregnancy tests. An estimated 16 million–20 million tests for gonorrhea and chlamydia are performed in the United States each year, Dr. Mena said. Widespread use of at-home STD testing could double or triple that number.

He noted that doctors have years of experience using home collection kits.

The Johns Hopkins Center for Point-of-Care Technologies Research for Sexually Transmitted Diseases has distributed roughly 23,000 at-home STD kits since 2004, said Charlotte Gaydos, DrPH, a principal investigator with the center. The FDA generally allows such use if it’s part of research overseen by medical professionals. The center’s tests are now used by the Alaska health department, as well as Native American tribes in Arizona and Oklahoma.

Dr. Gaydos has published dozens of studies establishing that home collection kits for diseases such as chlamydia and gonorrhea are accurate and easy to use.

“There’s a huge amount of data showing that home testing works,” said Dr. Gaydos.

But Dr. Gaydos noted that her studies have been limited to small sample sizes. She said she doesn’t have the millions of dollars in funding it would take to run the sort of comprehensive trial the FDA typically requires for approval.

Jenny Mahn, director of clinical and sexual health at the National Coalition of STD Directors, said many public health labs are reluctant to handle home kits. “The public health labs won’t touch it without FDA’s blessing.”

Public health clinics often provide STD testing at little to no cost, while health insurance typically covers in-person testing at a private practice. But most consumers pay out-of-pocket for direct-to-consumer kits. Commercial pricing puts them out of reach for many people, particularly teens and young adults, who account for nearly half of STDs.

Adalja said the FDA has a history of moving slowly on home testing. The agency spent 7 years evaluating the first home HIV test it approved, which hit the market in 2012.

“Home testing is the way of the future,” said Laura Lindberg, PhD, a professor of public health at Rutgers University, Piscataway, N.J. “The pandemic opened the door to testing and treatment at home without traveling to a health care provider, and we aren’t going to be able to put the genie back in the bottle.”

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

Among the more remarkable legacies of the COVID-19 pandemic is how quickly federal regulators, the health care industry, and consumers moved to make at-home testing a reliable tool for managing a public health crisis.

But that fast-track focus is missing from another, less publicized epidemic: an explosion in sexually transmitted diseases that can cause chronic pain and infertility among infected adults and disable or kill infected newborns. The disparity has amplified calls from researchers, public health advocates, and health care companies urging the federal government to greenlight at-home testing kits that could vastly multiply the number of Americans testing for STDs.

Online shoppers can already choose from more than a dozen self-testing kits, typically ranging in price from $69 to $500, depending on the brand and the variety of infections they can detect.

But, except for HIV tests, the Food and Drug Administration hasn’t approved STD test kits for use outside a medical setting. That leaves consumers unsure about their reliability even as at-home use grows dramatically.

The STD epidemic is “out of control,” said Amesh Adalja, MD, a senior scholar at the Johns Hopkins University Center for Health Security. “We know we are missing diagnoses. We know that contact tracing is happening late or not at all. If we’re really serious about tackling the STD crisis, we have to get more people diagnosed.”

Preliminary data for 2021 showed nearly 2.5 million reported cases of chlamydia, gonorrhea, and syphilis in the United States, according to the Centers for Disease Control and Prevention. Reported cases of syphilis and gonorrhea have been climbing for about a decade. In its most recent prevalence estimate, the agency said that on any given day, one in five Americans are infected with any of eight common STDs.

The push to make at-home testing for STDs as easy and commonplace as at-home COVID and pregnancy testing is coming from several sectors. Public health officials say their overextended staffers can’t handle the staggering need for testing and surveillance. Diagnostic and pharmaceutical companies see a business opportunity in the unmet demand.

The medical science underpinning STD testing is not particularly new or mysterious. Depending on the test, it may involve collecting a urine sample, pricking a finger for blood, or swabbing the mouth, genitals, or anus for discharge or cell samples. Medical centers and community health clinics have performed such testing for decades.

The issue for regulators is whether sampling kits can be reliably adapted for in-home use. Unlike rapid antigen tests for COVID, which produce results in 15-20 minutes, the home STD kits on the market require patients to collect their own samples, and then package and mail them to a lab for analysis.

In the past 3 years, as the pandemic prompted clinics that provide low-cost care to drastically curtail in-person services, a number of public health departments – among them state agencies in Alabama, Alaska, and Maryland – have started mailing free STD test kits to residents. Universities and nonprofits are also spearheading at-home testing efforts.

And dozens of commercial enterprises are jumping into or ramping up direct-to-consumer sales. Everly Health, a digital health company that sells a variety of lab tests online, reported sales for its suite of STD kits grew 120% in the first half of this year compared with the first half of 2021.

CVS Health began selling its own bundled STD kit in October, priced at $99.99. Unlike most home kits, CVS’ version is available in stores.

Hologic, Abbott, and Molecular Testing Labs are among the companies urgently developing tests. And Cue Health, which sells COVID tests, is poised to launch a clinical trial for a rapid home test for chlamydia and gonorrhea that would set a new bar, providing results in about 20 minutes.

Alberto Gutierrez, who formerly led the FDA office that oversees diagnostic tests, said agency officials have been concerned about the reliability of home tests for years. The FDA wants companies to prove that home collection kits are as accurate as those used in clinics, and that samples don’t degrade during shipping.

“The agency doesn’t believe these tests are legally marketed at this point,” said Mr. Gutierrez, a partner at NDA Partners, a consulting firm that advises companies seeking to bring health care products to market.

“CVS should not be selling that test,” he added.

In response to KHN questions, the FDA said it considers home collection kits, which can include swabs, lancets, transport tubes, and chemicals to stabilize the samples, to be devices that require agency review. The FDA “generally does not comment” on whether it plans to take action on any specific case, the statement said.

CVS spokesperson Mary Gattuso said the pharmacy chain is following the law. “We are committed to ensuring the products we offer are safe, work as intended, comply with regulations, and satisfy customers,” Ms. Gattuso said.

Everly Health and other companies described their kits as laboratory-developed tests, akin to the diagnostics some hospitals create for in-house use. And they contend their tests can be legally marketed because their labs have been certified by a different agency, the Centers for Medicare & Medicaid Services.

“The instruments and assays used by the laboratories we use are comparable to – and often the same as – those used by the labs a doctor’s office uses,” said Liz Kwo, MD, chief medical officer at Everly Health. “Our at-home sample collection methods, like dried blood spots and saliva, have been widely used for decades.”

Home collection kits appeal to Uxmal Caldera, 27, of Miami Beach, who prefers to test in the privacy of his home. Mr. Caldera, who doesn’t have a car, said home testing saves him the time and expense of getting to a clinic.

Mr. Caldera has been testing himself for HIV and other STDs every 3 months for more than a year, part of routine monitoring for people taking PrEP, a regimen of daily pills to prevent HIV infection.

“Doing it by yourself is not hard at all,” said Mr. Caldera, who is uninsured but receives the tests free through a community foundation. “The instructions are really clear. I get the results in maybe 4 days. For sure, I would recommend it to other people.”

Leandro Mena, MD, director of the CDC’s division of STD prevention, said he would like to see at-home STD testing become as routine as home pregnancy tests. An estimated 16 million–20 million tests for gonorrhea and chlamydia are performed in the United States each year, Dr. Mena said. Widespread use of at-home STD testing could double or triple that number.

He noted that doctors have years of experience using home collection kits.

The Johns Hopkins Center for Point-of-Care Technologies Research for Sexually Transmitted Diseases has distributed roughly 23,000 at-home STD kits since 2004, said Charlotte Gaydos, DrPH, a principal investigator with the center. The FDA generally allows such use if it’s part of research overseen by medical professionals. The center’s tests are now used by the Alaska health department, as well as Native American tribes in Arizona and Oklahoma.

Dr. Gaydos has published dozens of studies establishing that home collection kits for diseases such as chlamydia and gonorrhea are accurate and easy to use.

“There’s a huge amount of data showing that home testing works,” said Dr. Gaydos.

But Dr. Gaydos noted that her studies have been limited to small sample sizes. She said she doesn’t have the millions of dollars in funding it would take to run the sort of comprehensive trial the FDA typically requires for approval.

Jenny Mahn, director of clinical and sexual health at the National Coalition of STD Directors, said many public health labs are reluctant to handle home kits. “The public health labs won’t touch it without FDA’s blessing.”

Public health clinics often provide STD testing at little to no cost, while health insurance typically covers in-person testing at a private practice. But most consumers pay out-of-pocket for direct-to-consumer kits. Commercial pricing puts them out of reach for many people, particularly teens and young adults, who account for nearly half of STDs.

Adalja said the FDA has a history of moving slowly on home testing. The agency spent 7 years evaluating the first home HIV test it approved, which hit the market in 2012.

“Home testing is the way of the future,” said Laura Lindberg, PhD, a professor of public health at Rutgers University, Piscataway, N.J. “The pandemic opened the door to testing and treatment at home without traveling to a health care provider, and we aren’t going to be able to put the genie back in the bottle.”

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

Brain indicators of motor impairment were distinct among children with autism spectrum disorder (ASD), those with developmental coordination disorder (DCD), and controls, in a new study.

Previous research suggests that individuals with ASD overlap in motor impairment with those with DCD. But these two conditions may differ significantly in some areas, as children with ASD tend to show weaker skills in social motor tasks such as imitation, wrote Emil Kilroy, PhD, of the University of Southern California, Los Angeles, and colleagues.

The neurobiological basis of autism remains unknown, despite many research efforts, in part because of the heterogeneity of the disease, said corresponding author Lisa Aziz-Zadeh, PhD, also of the University of Southern California, in an interview.

Comorbidity with other disorders is a strong contributing factor to heterogeneity, and approximately 80% of autistic individuals have motor impairments and meet criteria for a diagnosis of DCD, said Dr. Aziz-Zadeh. “Controlling for other comorbidities, such as developmental coordination disorder, when trying to understand the neural basis of autism is important, so that we can understand which neural circuits are related to [core symptoms of autism] and which ones are related to motor impairments that are comorbid with autism, but not necessarily part of the core symptomology,” she explained. “We focused on white matter pathways here because many researchers now think the underlying basis of autism, besides genetics, is brain connectivity differences.”

In their study published in Scientific Reports, the researchers reviewed data from whole-brain correlational tractography for 22 individuals with autism spectrum disorder, 16 with developmental coordination disorder, and 21 normally developing individuals, who served as the control group. The mean age of the participants was approximately 11 years; the age range was 8-17 years.

Overall, patterns of brain diffusion (movement of fluid, mainly water molecules, in the brain) were significantly different in ASD children, compared with typically developing children.

The ASD group showed significantly reduced diffusivity in the bilateral fronto-parietal cingulum and the left parolfactory cingulum. This finding reflects previous studies suggesting an association between brain patterns in the cingulum area and ASD. But the current study is “the first to identify the fronto-parietal and the parolfactory portions of the cingulum as well as the anterior caudal u-fibers as specific to core ASD symptomatology and not related to motor-related comorbidity,” the researchers wrote.

Differences in brain diffusivity were associated with worse performance on motor skills and behavioral measures for children with ASD and children with DCD, compared with controls.

Motor development was assessed using the Total Movement Assessment Battery for Children-2 (MABC-2) and the Florida Apraxia Battery modified for children (FAB-M). The MABC-2 is among the most common tools for measuring motor skills and identifying clinically relevant motor deficits in children and teens aged 3-16 years. The test includes three subtest scores (manual dexterity, gross-motor aiming and catching, and balance) and a total score. Scores are based on a child’s best performance on each component, and higher scores indicate better functioning. In the new study, The MABC-2 total scores averaged 10.57 for controls, compared with 5.76 in the ASD group, and 4.31 in the DCD group.

Children with ASD differed from the other groups in social measures. Social skills were measured using several tools, including the Social Responsivity Scale (SRS Total), which is a parent-completed survey that includes a total score designed to reflect the severity of social deficits in ASD. It is divided into five subscales for parents to assess a child’s social skill impairment: social awareness, social cognition, social communication, social motivation, and mannerisms. Scores for the SRS are calculated in T-scores, in which a score of 50 represents the mean. T-scores of 59 and below are generally not associated with ASD, and patients with these scores are considered to have low to no symptomatology. Scores on the SRS Total in the new study were 45.95, 77.45, and 55.81 for the controls, ASD group, and DCD group, respectively.
 

Results should raise awareness

“The results were largely predicted in our hypotheses – that we would find specific white matter pathways in autism that would differ from [what we saw in typically developing patients and those with DCD], and that diffusivity in ASD would be related to socioemotional differences,” Dr. Aziz-Zadeh said, in an interview.

“What was surprising was that some pathways that had previously been thought to be different in autism were also compromised in DCD, indicating that they were common to motor deficits which both groups shared, not to core autism symptomology,” she noted.

A message for clinicians from the study is that a dual diagnosis of DCD is often missing in ASD practice, said Dr. Aziz-Zadeh. “Given that approximately 80% of children with ASD have DCD, testing for DCD and addressing potential motor issues should be more common practice,” she said.

Dr. Aziz-Zadeh and colleagues are now investigating relationships between the brain, behavior, and the gut microbiome. “We think that understanding autism from a full-body perspective, examining interactions between the brain and the body, will be an important step in this field,” she emphasized.

The study was limited by several factors, including the small sample size, the use of only right-handed participants, and the use of self-reports by children and parents, the researchers noted. Additionally, they noted that white matter develops at different rates in different age groups, and future studies might consider age as a factor, as well as further behavioral assessments, they said.
 

Small sample size limits conclusions

“Understanding the neuroanatomic differences that may contribute to the core symptoms of ASD is a very important goal for the field, particularly how they relate to other comorbid symptoms and neurodevelopmental disorders,” said Michael Gandal, MD, of the department of psychiatry at the University of Pennsylvania, Philadelphia, and a member of the Lifespan Brain Institute at the Children’s Hospital of Philadelphia, in an interview.

“While this study provides some clues into how structural connectivity may relate to motor coordination in ASD, it will be important to replicate these findings in a much larger sample before we can really appreciate how robust these findings are and how well they generalize to the broader ASD population,” Dr. Gandal emphasized.

The study was supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development. The researchers had no financial conflicts to disclose. Dr. Gandal had no financial conflicts to disclose.

Brain indicators of motor impairment were distinct among children with autism spectrum disorder (ASD), those with developmental coordination disorder (DCD), and controls, in a new study.

Previous research suggests that individuals with ASD overlap in motor impairment with those with DCD. But these two conditions may differ significantly in some areas, as children with ASD tend to show weaker skills in social motor tasks such as imitation, wrote Emil Kilroy, PhD, of the University of Southern California, Los Angeles, and colleagues.

The neurobiological basis of autism remains unknown, despite many research efforts, in part because of the heterogeneity of the disease, said corresponding author Lisa Aziz-Zadeh, PhD, also of the University of Southern California, in an interview.

Comorbidity with other disorders is a strong contributing factor to heterogeneity, and approximately 80% of autistic individuals have motor impairments and meet criteria for a diagnosis of DCD, said Dr. Aziz-Zadeh. “Controlling for other comorbidities, such as developmental coordination disorder, when trying to understand the neural basis of autism is important, so that we can understand which neural circuits are related to [core symptoms of autism] and which ones are related to motor impairments that are comorbid with autism, but not necessarily part of the core symptomology,” she explained. “We focused on white matter pathways here because many researchers now think the underlying basis of autism, besides genetics, is brain connectivity differences.”

In their study published in Scientific Reports, the researchers reviewed data from whole-brain correlational tractography for 22 individuals with autism spectrum disorder, 16 with developmental coordination disorder, and 21 normally developing individuals, who served as the control group. The mean age of the participants was approximately 11 years; the age range was 8-17 years.

Overall, patterns of brain diffusion (movement of fluid, mainly water molecules, in the brain) were significantly different in ASD children, compared with typically developing children.

The ASD group showed significantly reduced diffusivity in the bilateral fronto-parietal cingulum and the left parolfactory cingulum. This finding reflects previous studies suggesting an association between brain patterns in the cingulum area and ASD. But the current study is “the first to identify the fronto-parietal and the parolfactory portions of the cingulum as well as the anterior caudal u-fibers as specific to core ASD symptomatology and not related to motor-related comorbidity,” the researchers wrote.

Differences in brain diffusivity were associated with worse performance on motor skills and behavioral measures for children with ASD and children with DCD, compared with controls.

Motor development was assessed using the Total Movement Assessment Battery for Children-2 (MABC-2) and the Florida Apraxia Battery modified for children (FAB-M). The MABC-2 is among the most common tools for measuring motor skills and identifying clinically relevant motor deficits in children and teens aged 3-16 years. The test includes three subtest scores (manual dexterity, gross-motor aiming and catching, and balance) and a total score. Scores are based on a child’s best performance on each component, and higher scores indicate better functioning. In the new study, The MABC-2 total scores averaged 10.57 for controls, compared with 5.76 in the ASD group, and 4.31 in the DCD group.

Children with ASD differed from the other groups in social measures. Social skills were measured using several tools, including the Social Responsivity Scale (SRS Total), which is a parent-completed survey that includes a total score designed to reflect the severity of social deficits in ASD. It is divided into five subscales for parents to assess a child’s social skill impairment: social awareness, social cognition, social communication, social motivation, and mannerisms. Scores for the SRS are calculated in T-scores, in which a score of 50 represents the mean. T-scores of 59 and below are generally not associated with ASD, and patients with these scores are considered to have low to no symptomatology. Scores on the SRS Total in the new study were 45.95, 77.45, and 55.81 for the controls, ASD group, and DCD group, respectively.
 

Results should raise awareness

“The results were largely predicted in our hypotheses – that we would find specific white matter pathways in autism that would differ from [what we saw in typically developing patients and those with DCD], and that diffusivity in ASD would be related to socioemotional differences,” Dr. Aziz-Zadeh said, in an interview.

“What was surprising was that some pathways that had previously been thought to be different in autism were also compromised in DCD, indicating that they were common to motor deficits which both groups shared, not to core autism symptomology,” she noted.

A message for clinicians from the study is that a dual diagnosis of DCD is often missing in ASD practice, said Dr. Aziz-Zadeh. “Given that approximately 80% of children with ASD have DCD, testing for DCD and addressing potential motor issues should be more common practice,” she said.

Dr. Aziz-Zadeh and colleagues are now investigating relationships between the brain, behavior, and the gut microbiome. “We think that understanding autism from a full-body perspective, examining interactions between the brain and the body, will be an important step in this field,” she emphasized.

The study was limited by several factors, including the small sample size, the use of only right-handed participants, and the use of self-reports by children and parents, the researchers noted. Additionally, they noted that white matter develops at different rates in different age groups, and future studies might consider age as a factor, as well as further behavioral assessments, they said.
 

Small sample size limits conclusions

“Understanding the neuroanatomic differences that may contribute to the core symptoms of ASD is a very important goal for the field, particularly how they relate to other comorbid symptoms and neurodevelopmental disorders,” said Michael Gandal, MD, of the department of psychiatry at the University of Pennsylvania, Philadelphia, and a member of the Lifespan Brain Institute at the Children’s Hospital of Philadelphia, in an interview.

“While this study provides some clues into how structural connectivity may relate to motor coordination in ASD, it will be important to replicate these findings in a much larger sample before we can really appreciate how robust these findings are and how well they generalize to the broader ASD population,” Dr. Gandal emphasized.

The study was supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development. The researchers had no financial conflicts to disclose. Dr. Gandal had no financial conflicts to disclose.

Brain indicators of motor impairment were distinct among children with autism spectrum disorder (ASD), those with developmental coordination disorder (DCD), and controls, in a new study.

Previous research suggests that individuals with ASD overlap in motor impairment with those with DCD. But these two conditions may differ significantly in some areas, as children with ASD tend to show weaker skills in social motor tasks such as imitation, wrote Emil Kilroy, PhD, of the University of Southern California, Los Angeles, and colleagues.

The neurobiological basis of autism remains unknown, despite many research efforts, in part because of the heterogeneity of the disease, said corresponding author Lisa Aziz-Zadeh, PhD, also of the University of Southern California, in an interview.

Comorbidity with other disorders is a strong contributing factor to heterogeneity, and approximately 80% of autistic individuals have motor impairments and meet criteria for a diagnosis of DCD, said Dr. Aziz-Zadeh. “Controlling for other comorbidities, such as developmental coordination disorder, when trying to understand the neural basis of autism is important, so that we can understand which neural circuits are related to [core symptoms of autism] and which ones are related to motor impairments that are comorbid with autism, but not necessarily part of the core symptomology,” she explained. “We focused on white matter pathways here because many researchers now think the underlying basis of autism, besides genetics, is brain connectivity differences.”

In their study published in Scientific Reports, the researchers reviewed data from whole-brain correlational tractography for 22 individuals with autism spectrum disorder, 16 with developmental coordination disorder, and 21 normally developing individuals, who served as the control group. The mean age of the participants was approximately 11 years; the age range was 8-17 years.

Overall, patterns of brain diffusion (movement of fluid, mainly water molecules, in the brain) were significantly different in ASD children, compared with typically developing children.

The ASD group showed significantly reduced diffusivity in the bilateral fronto-parietal cingulum and the left parolfactory cingulum. This finding reflects previous studies suggesting an association between brain patterns in the cingulum area and ASD. But the current study is “the first to identify the fronto-parietal and the parolfactory portions of the cingulum as well as the anterior caudal u-fibers as specific to core ASD symptomatology and not related to motor-related comorbidity,” the researchers wrote.

Differences in brain diffusivity were associated with worse performance on motor skills and behavioral measures for children with ASD and children with DCD, compared with controls.

Motor development was assessed using the Total Movement Assessment Battery for Children-2 (MABC-2) and the Florida Apraxia Battery modified for children (FAB-M). The MABC-2 is among the most common tools for measuring motor skills and identifying clinically relevant motor deficits in children and teens aged 3-16 years. The test includes three subtest scores (manual dexterity, gross-motor aiming and catching, and balance) and a total score. Scores are based on a child’s best performance on each component, and higher scores indicate better functioning. In the new study, The MABC-2 total scores averaged 10.57 for controls, compared with 5.76 in the ASD group, and 4.31 in the DCD group.

Children with ASD differed from the other groups in social measures. Social skills were measured using several tools, including the Social Responsivity Scale (SRS Total), which is a parent-completed survey that includes a total score designed to reflect the severity of social deficits in ASD. It is divided into five subscales for parents to assess a child’s social skill impairment: social awareness, social cognition, social communication, social motivation, and mannerisms. Scores for the SRS are calculated in T-scores, in which a score of 50 represents the mean. T-scores of 59 and below are generally not associated with ASD, and patients with these scores are considered to have low to no symptomatology. Scores on the SRS Total in the new study were 45.95, 77.45, and 55.81 for the controls, ASD group, and DCD group, respectively.
 

Results should raise awareness

“The results were largely predicted in our hypotheses – that we would find specific white matter pathways in autism that would differ from [what we saw in typically developing patients and those with DCD], and that diffusivity in ASD would be related to socioemotional differences,” Dr. Aziz-Zadeh said, in an interview.

“What was surprising was that some pathways that had previously been thought to be different in autism were also compromised in DCD, indicating that they were common to motor deficits which both groups shared, not to core autism symptomology,” she noted.

A message for clinicians from the study is that a dual diagnosis of DCD is often missing in ASD practice, said Dr. Aziz-Zadeh. “Given that approximately 80% of children with ASD have DCD, testing for DCD and addressing potential motor issues should be more common practice,” she said.

Dr. Aziz-Zadeh and colleagues are now investigating relationships between the brain, behavior, and the gut microbiome. “We think that understanding autism from a full-body perspective, examining interactions between the brain and the body, will be an important step in this field,” she emphasized.

The study was limited by several factors, including the small sample size, the use of only right-handed participants, and the use of self-reports by children and parents, the researchers noted. Additionally, they noted that white matter develops at different rates in different age groups, and future studies might consider age as a factor, as well as further behavioral assessments, they said.
 

Small sample size limits conclusions

“Understanding the neuroanatomic differences that may contribute to the core symptoms of ASD is a very important goal for the field, particularly how they relate to other comorbid symptoms and neurodevelopmental disorders,” said Michael Gandal, MD, of the department of psychiatry at the University of Pennsylvania, Philadelphia, and a member of the Lifespan Brain Institute at the Children’s Hospital of Philadelphia, in an interview.

“While this study provides some clues into how structural connectivity may relate to motor coordination in ASD, it will be important to replicate these findings in a much larger sample before we can really appreciate how robust these findings are and how well they generalize to the broader ASD population,” Dr. Gandal emphasized.

The study was supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development. The researchers had no financial conflicts to disclose. Dr. Gandal had no financial conflicts to disclose.

On one of the first days of medical school, Adaira Landry, MD, applied her favorite dark shade of lipstick and headed to her orientation. She was eager to learn about program expectations and connect with fellow aspiring physicians. But when Dr. Landry got there, one of her brand-new peers turned to her and asked, “Why do you wear your lipstick like an angry Black woman?”

“Imagine hearing that,” Dr. Landry, now an emergency medical physician in Boston, says. “It was so hurtful.”

So, what is a “standard-issue doctor” expected to look like? Physicians manage their appearances in myriad ways: through clothes, accessories, hair style, makeup; through a social media presence or lack thereof; in the rhythms and nuances of their interactions with patients and colleagues. These things add up to a professional “persona” – the Latin word for “mask,” or the face on display for the world to see.

Professional personae exist across various industries, but some standards for professionalism in medicine reflect a particularly narrow view of what a physician can or should be. While the health care field itself is diversifying, its guidelines for professionalism appear slower to change, often excluding or frowning upon expressions of individual personality or identity.

“Medicine is run primarily by men. It’s an objective truth,” Dr. Landry says. “Currently and historically, the standard of professionalism, especially in the physical sense, was set by them. As we increase diversity and welcome people bringing their authentic self to work, the prior definitions of professionalism are obviously in need of change.”
 

Split social media personalities

In August 2020, the Journal of Vascular Surgery published a study on the “prevalence of unprofessional social media content among young vascular surgeons.” The content that was deemed “unprofessional” included opinions on political issues like abortion and gun control. Photos of physicians holding alcoholic drinks or wearing “inappropriate/offensive attire,” including underwear, “provocative Halloween costumes,” and “bikinis/swimwear” were also censured. Six men and one woman worked on the study, and three of the male researchers took on the task of seeking out the “unprofessional” photos on social media. The resulting paper was reviewed by an all-male editorial board.

The study sparked immediate backlash and prompted hundreds of health care professionals to post photos of themselves in bathing suits with the hashtag “#medbikini.” The journal then retracted the study and issued an apology on Twitter, recognizing “errors in the design of the study with regards to conscious and unconscious bias.”

The researchers’ original definition of professionalism suggests that physicians should manage their personae even outside of work hours. “I think medicine in general is a very conservative and hierarchical field of study and of work, to say the least,” says Sarah Fraser, MD, a family medicine physician in Nova Scotia, Canada. “There’s this view that we have to have completely separate personal and professional lives, like church and state.”

The #medbikini controversy inspired Dr. Fraser to write an op-ed for the British Medical Journal blog about the flaws of requiring physicians to keep their personal and professional selves separate. The piece referenced Robert Louis Stevenson’s 1886 Gothic novella “The Strange Case of Dr. Jekyll and Mr. Hyde,” in which the respected scientist Dr. Jekyll creates an alter ego so he can express his evil urges without experiencing guilt, punishment, or loss of livelihood. Dr. Fraser likened this story to the pressure physicians feel to shrink or split themselves to squeeze into a narrow definition of professionalism.

But Dr. Landry points out that some elements of expression seen as unprofessional cannot be entirely separated from a physician’s fundamental identity. “For Black women, our daily behaviors and forms of expression that are deemed ‘unprofessional’ are much more subtle than being able to wear a bikini on social media,” she says. “The way we wear our hair, the tone of our voice, the color of our lipstick, the way we wear scrub caps are parts of us that are called into question.”
 

Keeping up appearances

The stereotype of what a doctor should look like starts to shape physicians’ professional personae in medical school. When Jennifer Caputo-Seidler, MD, started medical school in 2008, the dress code requirements for male students were simple: pants, a button-down shirt, a tie. But then there were the rules for women: Hair should be tied back. Minimal makeup. No flashy jewelry. Nothing without sleeves. Neutral colors. High necklines. Low hemlines. “The message I got was that we need to dress like the men in order to be taken seriously and to be seen as professional,” says Dr. Caputo-Seidler, now an assistant professor of medicine at the University of South Florida, Tampa, “and so that’s what I did.”

A 2018 analysis of 78 “draw-a-scientist” studies found that children have overwhelmingly associated scientific fields with men for the last 50 years. Overall, children drew 73% of scientists as men. The drawings grew more gender diverse over time, but even as more women entered scientific fields, both boys and girls continued to draw significantly more male than female scientists.

Not everyone at Dr. Caputo-Seidler’s medical school adhered to the environment’s gendered expectations. One resident she worked with often wore voluminous hairstyles, lipstick, and high heels. Dr. Caputo-Seidler overheard her peers as they gossiped behind the resident’s back, ridiculing the way she looked.

“She was good at her job,” Dr. Caputo-Seidler says. “She knew her patients. She had things down. She was, by all measures, very competent. But when people saw her dressing outside the norm and being forward with her femininity, there was definitely a lot of chatter about it.”

While expectations for a conservative appearance may disproportionately affect women, and particularly women of color, they also affect men who deviate from the norm. “As an LGBTQ+ person working as a ‘professional,’ I have countless stories and moments where I had my professionalism questioned,” Blair Peters, MD, a plastic surgeon and assistant professor at Oregon Health & Science University, Portland, wrote on Twitter. “Why is it ‘unprofessional’ to have colored hair? Why is it ‘unprofessional’ to have a visible tattoo? Why is it ‘unprofessional’ to wear bright colors and patterns?”

Dr. Fraser remembers a fellow medical student who had full-sleeve tattoos on both of his arms. A preceptor made a comment about it to Dr. Fraser, and then instructed the student to cover up his tattoos. “I think that there are scenarios when having tattoos or having different-colored hair or expressing your individual personality could help you even better bond with your patients,” Dr. Fraser says, “especially if you’re, for example, working with youth.”
 

Unmasking health care

Beyond the facets of dress codes and social media posts, the issue of professional personae speaks to the deeper issue of inclusion in medicine. As the field grows increasingly diverse, health care institutions and those they serve may need to expand their definitions of professionalism to include more truthful expressions of who contemporary health care professionals are as people.

Dr. Fraser suggests that the benefits of physicians embracing self-expression – rather than assimilating to an outdated model of professionalism – extend beyond the individual.

“Whether it comes to what you choose to wear to the clinic on a day-to-day basis, or what you choose to share on a social media account, as long as it’s not harming others, then I think that it’s a positive thing to be able to be yourself and express yourself,” she says. “I feel like doctors are expected to have a different personality when we’re at the clinic, and usually it’s more conservative or objective or aloof. But I think that by being open about who we are, we’ll actually help build a trusting relationship with both patients and society.”

A version of this article first appeared on Medscape.com.

On one of the first days of medical school, Adaira Landry, MD, applied her favorite dark shade of lipstick and headed to her orientation. She was eager to learn about program expectations and connect with fellow aspiring physicians. But when Dr. Landry got there, one of her brand-new peers turned to her and asked, “Why do you wear your lipstick like an angry Black woman?”

“Imagine hearing that,” Dr. Landry, now an emergency medical physician in Boston, says. “It was so hurtful.”

So, what is a “standard-issue doctor” expected to look like? Physicians manage their appearances in myriad ways: through clothes, accessories, hair style, makeup; through a social media presence or lack thereof; in the rhythms and nuances of their interactions with patients and colleagues. These things add up to a professional “persona” – the Latin word for “mask,” or the face on display for the world to see.

Professional personae exist across various industries, but some standards for professionalism in medicine reflect a particularly narrow view of what a physician can or should be. While the health care field itself is diversifying, its guidelines for professionalism appear slower to change, often excluding or frowning upon expressions of individual personality or identity.

“Medicine is run primarily by men. It’s an objective truth,” Dr. Landry says. “Currently and historically, the standard of professionalism, especially in the physical sense, was set by them. As we increase diversity and welcome people bringing their authentic self to work, the prior definitions of professionalism are obviously in need of change.”
 

Split social media personalities

In August 2020, the Journal of Vascular Surgery published a study on the “prevalence of unprofessional social media content among young vascular surgeons.” The content that was deemed “unprofessional” included opinions on political issues like abortion and gun control. Photos of physicians holding alcoholic drinks or wearing “inappropriate/offensive attire,” including underwear, “provocative Halloween costumes,” and “bikinis/swimwear” were also censured. Six men and one woman worked on the study, and three of the male researchers took on the task of seeking out the “unprofessional” photos on social media. The resulting paper was reviewed by an all-male editorial board.

The study sparked immediate backlash and prompted hundreds of health care professionals to post photos of themselves in bathing suits with the hashtag “#medbikini.” The journal then retracted the study and issued an apology on Twitter, recognizing “errors in the design of the study with regards to conscious and unconscious bias.”

The researchers’ original definition of professionalism suggests that physicians should manage their personae even outside of work hours. “I think medicine in general is a very conservative and hierarchical field of study and of work, to say the least,” says Sarah Fraser, MD, a family medicine physician in Nova Scotia, Canada. “There’s this view that we have to have completely separate personal and professional lives, like church and state.”

The #medbikini controversy inspired Dr. Fraser to write an op-ed for the British Medical Journal blog about the flaws of requiring physicians to keep their personal and professional selves separate. The piece referenced Robert Louis Stevenson’s 1886 Gothic novella “The Strange Case of Dr. Jekyll and Mr. Hyde,” in which the respected scientist Dr. Jekyll creates an alter ego so he can express his evil urges without experiencing guilt, punishment, or loss of livelihood. Dr. Fraser likened this story to the pressure physicians feel to shrink or split themselves to squeeze into a narrow definition of professionalism.

But Dr. Landry points out that some elements of expression seen as unprofessional cannot be entirely separated from a physician’s fundamental identity. “For Black women, our daily behaviors and forms of expression that are deemed ‘unprofessional’ are much more subtle than being able to wear a bikini on social media,” she says. “The way we wear our hair, the tone of our voice, the color of our lipstick, the way we wear scrub caps are parts of us that are called into question.”
 

Keeping up appearances

The stereotype of what a doctor should look like starts to shape physicians’ professional personae in medical school. When Jennifer Caputo-Seidler, MD, started medical school in 2008, the dress code requirements for male students were simple: pants, a button-down shirt, a tie. But then there were the rules for women: Hair should be tied back. Minimal makeup. No flashy jewelry. Nothing without sleeves. Neutral colors. High necklines. Low hemlines. “The message I got was that we need to dress like the men in order to be taken seriously and to be seen as professional,” says Dr. Caputo-Seidler, now an assistant professor of medicine at the University of South Florida, Tampa, “and so that’s what I did.”

A 2018 analysis of 78 “draw-a-scientist” studies found that children have overwhelmingly associated scientific fields with men for the last 50 years. Overall, children drew 73% of scientists as men. The drawings grew more gender diverse over time, but even as more women entered scientific fields, both boys and girls continued to draw significantly more male than female scientists.

Not everyone at Dr. Caputo-Seidler’s medical school adhered to the environment’s gendered expectations. One resident she worked with often wore voluminous hairstyles, lipstick, and high heels. Dr. Caputo-Seidler overheard her peers as they gossiped behind the resident’s back, ridiculing the way she looked.

“She was good at her job,” Dr. Caputo-Seidler says. “She knew her patients. She had things down. She was, by all measures, very competent. But when people saw her dressing outside the norm and being forward with her femininity, there was definitely a lot of chatter about it.”

While expectations for a conservative appearance may disproportionately affect women, and particularly women of color, they also affect men who deviate from the norm. “As an LGBTQ+ person working as a ‘professional,’ I have countless stories and moments where I had my professionalism questioned,” Blair Peters, MD, a plastic surgeon and assistant professor at Oregon Health & Science University, Portland, wrote on Twitter. “Why is it ‘unprofessional’ to have colored hair? Why is it ‘unprofessional’ to have a visible tattoo? Why is it ‘unprofessional’ to wear bright colors and patterns?”

Dr. Fraser remembers a fellow medical student who had full-sleeve tattoos on both of his arms. A preceptor made a comment about it to Dr. Fraser, and then instructed the student to cover up his tattoos. “I think that there are scenarios when having tattoos or having different-colored hair or expressing your individual personality could help you even better bond with your patients,” Dr. Fraser says, “especially if you’re, for example, working with youth.”
 

Unmasking health care

Beyond the facets of dress codes and social media posts, the issue of professional personae speaks to the deeper issue of inclusion in medicine. As the field grows increasingly diverse, health care institutions and those they serve may need to expand their definitions of professionalism to include more truthful expressions of who contemporary health care professionals are as people.

Dr. Fraser suggests that the benefits of physicians embracing self-expression – rather than assimilating to an outdated model of professionalism – extend beyond the individual.

“Whether it comes to what you choose to wear to the clinic on a day-to-day basis, or what you choose to share on a social media account, as long as it’s not harming others, then I think that it’s a positive thing to be able to be yourself and express yourself,” she says. “I feel like doctors are expected to have a different personality when we’re at the clinic, and usually it’s more conservative or objective or aloof. But I think that by being open about who we are, we’ll actually help build a trusting relationship with both patients and society.”

A version of this article first appeared on Medscape.com.

On one of the first days of medical school, Adaira Landry, MD, applied her favorite dark shade of lipstick and headed to her orientation. She was eager to learn about program expectations and connect with fellow aspiring physicians. But when Dr. Landry got there, one of her brand-new peers turned to her and asked, “Why do you wear your lipstick like an angry Black woman?”

“Imagine hearing that,” Dr. Landry, now an emergency medical physician in Boston, says. “It was so hurtful.”

So, what is a “standard-issue doctor” expected to look like? Physicians manage their appearances in myriad ways: through clothes, accessories, hair style, makeup; through a social media presence or lack thereof; in the rhythms and nuances of their interactions with patients and colleagues. These things add up to a professional “persona” – the Latin word for “mask,” or the face on display for the world to see.

Professional personae exist across various industries, but some standards for professionalism in medicine reflect a particularly narrow view of what a physician can or should be. While the health care field itself is diversifying, its guidelines for professionalism appear slower to change, often excluding or frowning upon expressions of individual personality or identity.

“Medicine is run primarily by men. It’s an objective truth,” Dr. Landry says. “Currently and historically, the standard of professionalism, especially in the physical sense, was set by them. As we increase diversity and welcome people bringing their authentic self to work, the prior definitions of professionalism are obviously in need of change.”
 

Split social media personalities

In August 2020, the Journal of Vascular Surgery published a study on the “prevalence of unprofessional social media content among young vascular surgeons.” The content that was deemed “unprofessional” included opinions on political issues like abortion and gun control. Photos of physicians holding alcoholic drinks or wearing “inappropriate/offensive attire,” including underwear, “provocative Halloween costumes,” and “bikinis/swimwear” were also censured. Six men and one woman worked on the study, and three of the male researchers took on the task of seeking out the “unprofessional” photos on social media. The resulting paper was reviewed by an all-male editorial board.

The study sparked immediate backlash and prompted hundreds of health care professionals to post photos of themselves in bathing suits with the hashtag “#medbikini.” The journal then retracted the study and issued an apology on Twitter, recognizing “errors in the design of the study with regards to conscious and unconscious bias.”

The researchers’ original definition of professionalism suggests that physicians should manage their personae even outside of work hours. “I think medicine in general is a very conservative and hierarchical field of study and of work, to say the least,” says Sarah Fraser, MD, a family medicine physician in Nova Scotia, Canada. “There’s this view that we have to have completely separate personal and professional lives, like church and state.”

The #medbikini controversy inspired Dr. Fraser to write an op-ed for the British Medical Journal blog about the flaws of requiring physicians to keep their personal and professional selves separate. The piece referenced Robert Louis Stevenson’s 1886 Gothic novella “The Strange Case of Dr. Jekyll and Mr. Hyde,” in which the respected scientist Dr. Jekyll creates an alter ego so he can express his evil urges without experiencing guilt, punishment, or loss of livelihood. Dr. Fraser likened this story to the pressure physicians feel to shrink or split themselves to squeeze into a narrow definition of professionalism.

But Dr. Landry points out that some elements of expression seen as unprofessional cannot be entirely separated from a physician’s fundamental identity. “For Black women, our daily behaviors and forms of expression that are deemed ‘unprofessional’ are much more subtle than being able to wear a bikini on social media,” she says. “The way we wear our hair, the tone of our voice, the color of our lipstick, the way we wear scrub caps are parts of us that are called into question.”
 

Keeping up appearances

The stereotype of what a doctor should look like starts to shape physicians’ professional personae in medical school. When Jennifer Caputo-Seidler, MD, started medical school in 2008, the dress code requirements for male students were simple: pants, a button-down shirt, a tie. But then there were the rules for women: Hair should be tied back. Minimal makeup. No flashy jewelry. Nothing without sleeves. Neutral colors. High necklines. Low hemlines. “The message I got was that we need to dress like the men in order to be taken seriously and to be seen as professional,” says Dr. Caputo-Seidler, now an assistant professor of medicine at the University of South Florida, Tampa, “and so that’s what I did.”

A 2018 analysis of 78 “draw-a-scientist” studies found that children have overwhelmingly associated scientific fields with men for the last 50 years. Overall, children drew 73% of scientists as men. The drawings grew more gender diverse over time, but even as more women entered scientific fields, both boys and girls continued to draw significantly more male than female scientists.

Not everyone at Dr. Caputo-Seidler’s medical school adhered to the environment’s gendered expectations. One resident she worked with often wore voluminous hairstyles, lipstick, and high heels. Dr. Caputo-Seidler overheard her peers as they gossiped behind the resident’s back, ridiculing the way she looked.

“She was good at her job,” Dr. Caputo-Seidler says. “She knew her patients. She had things down. She was, by all measures, very competent. But when people saw her dressing outside the norm and being forward with her femininity, there was definitely a lot of chatter about it.”

While expectations for a conservative appearance may disproportionately affect women, and particularly women of color, they also affect men who deviate from the norm. “As an LGBTQ+ person working as a ‘professional,’ I have countless stories and moments where I had my professionalism questioned,” Blair Peters, MD, a plastic surgeon and assistant professor at Oregon Health & Science University, Portland, wrote on Twitter. “Why is it ‘unprofessional’ to have colored hair? Why is it ‘unprofessional’ to have a visible tattoo? Why is it ‘unprofessional’ to wear bright colors and patterns?”

Dr. Fraser remembers a fellow medical student who had full-sleeve tattoos on both of his arms. A preceptor made a comment about it to Dr. Fraser, and then instructed the student to cover up his tattoos. “I think that there are scenarios when having tattoos or having different-colored hair or expressing your individual personality could help you even better bond with your patients,” Dr. Fraser says, “especially if you’re, for example, working with youth.”
 

Unmasking health care

Beyond the facets of dress codes and social media posts, the issue of professional personae speaks to the deeper issue of inclusion in medicine. As the field grows increasingly diverse, health care institutions and those they serve may need to expand their definitions of professionalism to include more truthful expressions of who contemporary health care professionals are as people.

Dr. Fraser suggests that the benefits of physicians embracing self-expression – rather than assimilating to an outdated model of professionalism – extend beyond the individual.

“Whether it comes to what you choose to wear to the clinic on a day-to-day basis, or what you choose to share on a social media account, as long as it’s not harming others, then I think that it’s a positive thing to be able to be yourself and express yourself,” she says. “I feel like doctors are expected to have a different personality when we’re at the clinic, and usually it’s more conservative or objective or aloof. But I think that by being open about who we are, we’ll actually help build a trusting relationship with both patients and society.”

A version of this article first appeared on Medscape.com.

Headlines over the past few weeks are ringing the alarm about earlier and more serious influenza (flu) and respiratory syncytial virus (RSV) outbreaks compared with previous years. Add COVID-19 to the mix and you have a dangerous mash of viruses that have many experts calling for caution and searching for explanations.

RSV and the flu “are certainly getting more attention, and they’re getting more attention for two reasons,” said William Schaffner, MD, professor of preventive medicine and infectious diseases at Vanderbilt University, Nashville, Tenn.

“The first is that they’re both extraordinarily early. The second is that they’re both out there spreading very, very rapidly,” he told this news organization.

RSV usually follows a seasonal pattern with cases peaking in January and February. Both viruses tend to hit different regions of the country at different times, and that’s not the case in 2022.

“This is particularly striking for RSV, which usually doesn’t affect the entire country simultaneously,” Dr. Schaffner said.

“Yes, RSV is causing many more hospitalizations and earlier than any previously recorded season in the U.S.,” according to figures from the Centers for Disease Control and Prevention on RSV hospitalizations, said Kevin Messacar, MD, PhD, associate professor at the University of Colorado at Denver, Aurora, and a pediatric infectious disease specialist at Children’s Hospital Colorado in Aurora.

Although there could be some increase in diagnoses because of increased awareness, the jump in RSV and flu cases “is a real phenomenon for multiple reasons,” said Peter Chin-Hong, MD, professor in the division of infectious diseases at the University of California, San Francisco.

With fewer COVID-related restrictions, people are moving around more. Also, during fall and winter, people tend to gather indoors. Colder temperatures and lower humidity contribute as well, Dr. Chin-Hong said, because “the droplets are just simply lighter.

“I think those are all factors,” he told this news organization.

Paul Auwaerter, MD, agreed that there are likely multiple causes for the unusual timing and severity of RSV and flu this year.

“Change in behaviors is a leading cause,” said the clinical director for the division of infectious diseases at the Johns Hopkins University, Baltimore. More people returning to the workplace and children going to school without masks are examples, he added.

Less exposure to these three viruses also means there was less immune boosting among existing populations, he said. This can lead to “larger susceptible populations, especially infants and younger children, due to the relative absence of circulating virus in past years.”
 

A leading theory

Are we paying a price now for people following the edicts from officials to mask up, stand apart, and take other personal and public health precautions during the COVID-19 pandemic?

It’s possible, but that may not be the whole story.

“When it comes to RSV, I think that theory of isolation, social distancing, mask wearing, and not attending schools is a very valid one,” Dr. Schaffner said. “That’s everybody’s favorite [reason].”

He said he is confident that the jump in RSV cases is being driven by previous COVID public health protections. However, he’s “a little more cautious about influenza, in part because influenza is so variable.

“Like people in influenza say, if you’ve seen one influenza season, you’ve seen one influenza season,” Dr. Schaffner said.

“There’s a lot of debate,” he added. “Nobody can say definitively whether the immune deficit or debt is a consequence of not being stimulated and restimulated by the influenza virus over the past two seasons.”
 

‘A perfect storm’

“Now you kind of have the perfect storm,” Dr. Chin-Hong said. “It’s not a good situation for COVID with the variants that are emerging. For influenza, not having seen a lot of influenza the last 2 years, we’re probably more susceptible to getting infected.”

RSV cases rose during summer 2021, but now the weather is colder, and people are interacting more closely. “And it’s very, very transmissible,” he said.

Dr. Chin-Hong also predicted that “even though we don’t have a lot of COVID now, COVID will probably pick up.”

The rise in RSV was unexpected by some experts. “This early influenza is also a bit of a surprise and may be influenced by the fact that lots of us are going back and seeing each other again close-to-close, face-to-face in many enclosed environments,” Dr. Schaffner said.

He estimated the 2022-2023 flu season started 4-6 weeks early “and it’s taken off like a rocket. It started in the Southeast, quickly went to the Southwest and up the East Coast. Now it’s moving dramatically through the Midwest and will continue. It’s quite sure to hit the West Coast if it isn’t there already.”
 

A phenomenon by any other name

Some are calling the situation an “immunity debt,” while others dub it an “immunity pause” or an “immunity deficit.” Many physicians and immunologists have taken to social media to push back on the term “immunity debt,” saying it’s a mischaracterization that is being used to vilify COVID precautions, such as masking, social distancing, and other protective measures taken during the pandemic.

“I prefer the term ‘immunity gap’ ... which is more established in the epidemiology literature, especially given the politicization of the term ‘immunity debt’ by folks recently,” Dr. Messacar said.

“To me, the immunity gap is a scientific observation, not a political argument,” he added.

In a July 2022 publication in The Lancet, Dr. Messacar and his colleagues stated that “decreased exposure to endemic viruses created an immunity gap – a group of susceptible individuals who avoided infection and therefore lack pathogen-specific immunity to protect against future infection. Decreases in childhood vaccinations with pandemic disruptions to health care delivery contribute to this immunity gap for vaccine-preventable diseases, such as influenza,measles, and polio.”

The researchers noted that because of isolation during the pandemic, older children and newborns are being exposed to RSV for the first time. Returning to birthday parties, playing with friends, and going to school without masks means “children are being exposed to RSV, and that’s likely the reason that RSV is moving early and very, very substantially through this now expanded pool of susceptible children,” Dr. Schaffner said.
 

How likely are coinfections?

With peaks in RSV, flu, and COVID-19 cases each predicted in the coming months, how likely is it that someone could get sick with more than one infection at the same time?

Early in the pandemic, coinfection with COVID and the flu was reported in people at some centers on the West Coast, Dr. Auwaerter said. Now, however, “the unpredictable nature of the Omicron subvariants and the potential for further change, along with the never-before-seen significant lessening of influenza over 2 years, leave little for predictability.

“I do think it is less likely, given the extent of immunity now to SARS-CoV-2 in the population,” Dr. Auwaerter said.

“I most worry about viral coinfections ... in people with suppressed immune systems if we have high community rates of the SARS-CoV-2 and influenza circulating this fall and winter,” he added.

Studies during the pandemic suggest that coinfection with the SARS-CoV-2 virus and another respiratory virus were either rare or nonexistent.

Dr. Schaffner said these findings align with his experience at Vanderbilt University, which is part of a CDC-sponsored network that tracks laboratory-confirmed RSV, flu, and COVID cases among people in the hospital. “Coinfections are, at least to date, very unusual.”

There needs to be an asterisk next to that, Dr. Schaffner added. “Looking back over the last 2 years, we’ve had very little influenza, and we’ve had curtailed RSV seasons. So there hasn’t been a whole lot of opportunity for dual infections to occur.

“So this year may be more revelatory as we go forward,” he said.
 

Future concerns

The future is uncertain, Dr. Messacar and colleagues wrote in The Lancet: “Crucially, the patterns of these returning viral outbreaks have been heterogeneous across locations, populations, and pathogens, making predictions and preparations challenging.”

Dr. Chin-Hong used a horse race analogy to illustrate the situation now and going forward. RSV is the front-running horse, and influenza is running behind but trying to catch up. “And then COVID is the dark horse. It’s trailing the race right now – but all these variants are giving the horse extra supplements.

“And the COVID horse is probably going to be very competitive with the front-runner,” he said.

“We’re just at the beginning of the race right now,” Dr. Chin-Hong said, “so that’s why we’re worried that these three [viruses] will be even more pronounced come later in the year.”

A version of this article first appeared on Medscape.com.

Headlines over the past few weeks are ringing the alarm about earlier and more serious influenza (flu) and respiratory syncytial virus (RSV) outbreaks compared with previous years. Add COVID-19 to the mix and you have a dangerous mash of viruses that have many experts calling for caution and searching for explanations.

RSV and the flu “are certainly getting more attention, and they’re getting more attention for two reasons,” said William Schaffner, MD, professor of preventive medicine and infectious diseases at Vanderbilt University, Nashville, Tenn.

“The first is that they’re both extraordinarily early. The second is that they’re both out there spreading very, very rapidly,” he told this news organization.

RSV usually follows a seasonal pattern with cases peaking in January and February. Both viruses tend to hit different regions of the country at different times, and that’s not the case in 2022.

“This is particularly striking for RSV, which usually doesn’t affect the entire country simultaneously,” Dr. Schaffner said.

“Yes, RSV is causing many more hospitalizations and earlier than any previously recorded season in the U.S.,” according to figures from the Centers for Disease Control and Prevention on RSV hospitalizations, said Kevin Messacar, MD, PhD, associate professor at the University of Colorado at Denver, Aurora, and a pediatric infectious disease specialist at Children’s Hospital Colorado in Aurora.

Although there could be some increase in diagnoses because of increased awareness, the jump in RSV and flu cases “is a real phenomenon for multiple reasons,” said Peter Chin-Hong, MD, professor in the division of infectious diseases at the University of California, San Francisco.

With fewer COVID-related restrictions, people are moving around more. Also, during fall and winter, people tend to gather indoors. Colder temperatures and lower humidity contribute as well, Dr. Chin-Hong said, because “the droplets are just simply lighter.

“I think those are all factors,” he told this news organization.

Paul Auwaerter, MD, agreed that there are likely multiple causes for the unusual timing and severity of RSV and flu this year.

“Change in behaviors is a leading cause,” said the clinical director for the division of infectious diseases at the Johns Hopkins University, Baltimore. More people returning to the workplace and children going to school without masks are examples, he added.

Less exposure to these three viruses also means there was less immune boosting among existing populations, he said. This can lead to “larger susceptible populations, especially infants and younger children, due to the relative absence of circulating virus in past years.”
 

A leading theory

Are we paying a price now for people following the edicts from officials to mask up, stand apart, and take other personal and public health precautions during the COVID-19 pandemic?

It’s possible, but that may not be the whole story.

“When it comes to RSV, I think that theory of isolation, social distancing, mask wearing, and not attending schools is a very valid one,” Dr. Schaffner said. “That’s everybody’s favorite [reason].”

He said he is confident that the jump in RSV cases is being driven by previous COVID public health protections. However, he’s “a little more cautious about influenza, in part because influenza is so variable.

“Like people in influenza say, if you’ve seen one influenza season, you’ve seen one influenza season,” Dr. Schaffner said.

“There’s a lot of debate,” he added. “Nobody can say definitively whether the immune deficit or debt is a consequence of not being stimulated and restimulated by the influenza virus over the past two seasons.”
 

‘A perfect storm’

“Now you kind of have the perfect storm,” Dr. Chin-Hong said. “It’s not a good situation for COVID with the variants that are emerging. For influenza, not having seen a lot of influenza the last 2 years, we’re probably more susceptible to getting infected.”

RSV cases rose during summer 2021, but now the weather is colder, and people are interacting more closely. “And it’s very, very transmissible,” he said.

Dr. Chin-Hong also predicted that “even though we don’t have a lot of COVID now, COVID will probably pick up.”

The rise in RSV was unexpected by some experts. “This early influenza is also a bit of a surprise and may be influenced by the fact that lots of us are going back and seeing each other again close-to-close, face-to-face in many enclosed environments,” Dr. Schaffner said.

He estimated the 2022-2023 flu season started 4-6 weeks early “and it’s taken off like a rocket. It started in the Southeast, quickly went to the Southwest and up the East Coast. Now it’s moving dramatically through the Midwest and will continue. It’s quite sure to hit the West Coast if it isn’t there already.”
 

A phenomenon by any other name

Some are calling the situation an “immunity debt,” while others dub it an “immunity pause” or an “immunity deficit.” Many physicians and immunologists have taken to social media to push back on the term “immunity debt,” saying it’s a mischaracterization that is being used to vilify COVID precautions, such as masking, social distancing, and other protective measures taken during the pandemic.

“I prefer the term ‘immunity gap’ ... which is more established in the epidemiology literature, especially given the politicization of the term ‘immunity debt’ by folks recently,” Dr. Messacar said.

“To me, the immunity gap is a scientific observation, not a political argument,” he added.

In a July 2022 publication in The Lancet, Dr. Messacar and his colleagues stated that “decreased exposure to endemic viruses created an immunity gap – a group of susceptible individuals who avoided infection and therefore lack pathogen-specific immunity to protect against future infection. Decreases in childhood vaccinations with pandemic disruptions to health care delivery contribute to this immunity gap for vaccine-preventable diseases, such as influenza,measles, and polio.”

The researchers noted that because of isolation during the pandemic, older children and newborns are being exposed to RSV for the first time. Returning to birthday parties, playing with friends, and going to school without masks means “children are being exposed to RSV, and that’s likely the reason that RSV is moving early and very, very substantially through this now expanded pool of susceptible children,” Dr. Schaffner said.
 

How likely are coinfections?

With peaks in RSV, flu, and COVID-19 cases each predicted in the coming months, how likely is it that someone could get sick with more than one infection at the same time?

Early in the pandemic, coinfection with COVID and the flu was reported in people at some centers on the West Coast, Dr. Auwaerter said. Now, however, “the unpredictable nature of the Omicron subvariants and the potential for further change, along with the never-before-seen significant lessening of influenza over 2 years, leave little for predictability.

“I do think it is less likely, given the extent of immunity now to SARS-CoV-2 in the population,” Dr. Auwaerter said.

“I most worry about viral coinfections ... in people with suppressed immune systems if we have high community rates of the SARS-CoV-2 and influenza circulating this fall and winter,” he added.

Studies during the pandemic suggest that coinfection with the SARS-CoV-2 virus and another respiratory virus were either rare or nonexistent.

Dr. Schaffner said these findings align with his experience at Vanderbilt University, which is part of a CDC-sponsored network that tracks laboratory-confirmed RSV, flu, and COVID cases among people in the hospital. “Coinfections are, at least to date, very unusual.”

There needs to be an asterisk next to that, Dr. Schaffner added. “Looking back over the last 2 years, we’ve had very little influenza, and we’ve had curtailed RSV seasons. So there hasn’t been a whole lot of opportunity for dual infections to occur.

“So this year may be more revelatory as we go forward,” he said.
 

Future concerns

The future is uncertain, Dr. Messacar and colleagues wrote in The Lancet: “Crucially, the patterns of these returning viral outbreaks have been heterogeneous across locations, populations, and pathogens, making predictions and preparations challenging.”

Dr. Chin-Hong used a horse race analogy to illustrate the situation now and going forward. RSV is the front-running horse, and influenza is running behind but trying to catch up. “And then COVID is the dark horse. It’s trailing the race right now – but all these variants are giving the horse extra supplements.

“And the COVID horse is probably going to be very competitive with the front-runner,” he said.

“We’re just at the beginning of the race right now,” Dr. Chin-Hong said, “so that’s why we’re worried that these three [viruses] will be even more pronounced come later in the year.”

A version of this article first appeared on Medscape.com.

Headlines over the past few weeks are ringing the alarm about earlier and more serious influenza (flu) and respiratory syncytial virus (RSV) outbreaks compared with previous years. Add COVID-19 to the mix and you have a dangerous mash of viruses that have many experts calling for caution and searching for explanations.

RSV and the flu “are certainly getting more attention, and they’re getting more attention for two reasons,” said William Schaffner, MD, professor of preventive medicine and infectious diseases at Vanderbilt University, Nashville, Tenn.

“The first is that they’re both extraordinarily early. The second is that they’re both out there spreading very, very rapidly,” he told this news organization.

RSV usually follows a seasonal pattern with cases peaking in January and February. Both viruses tend to hit different regions of the country at different times, and that’s not the case in 2022.

“This is particularly striking for RSV, which usually doesn’t affect the entire country simultaneously,” Dr. Schaffner said.

“Yes, RSV is causing many more hospitalizations and earlier than any previously recorded season in the U.S.,” according to figures from the Centers for Disease Control and Prevention on RSV hospitalizations, said Kevin Messacar, MD, PhD, associate professor at the University of Colorado at Denver, Aurora, and a pediatric infectious disease specialist at Children’s Hospital Colorado in Aurora.

Although there could be some increase in diagnoses because of increased awareness, the jump in RSV and flu cases “is a real phenomenon for multiple reasons,” said Peter Chin-Hong, MD, professor in the division of infectious diseases at the University of California, San Francisco.

With fewer COVID-related restrictions, people are moving around more. Also, during fall and winter, people tend to gather indoors. Colder temperatures and lower humidity contribute as well, Dr. Chin-Hong said, because “the droplets are just simply lighter.

“I think those are all factors,” he told this news organization.

Paul Auwaerter, MD, agreed that there are likely multiple causes for the unusual timing and severity of RSV and flu this year.

“Change in behaviors is a leading cause,” said the clinical director for the division of infectious diseases at the Johns Hopkins University, Baltimore. More people returning to the workplace and children going to school without masks are examples, he added.

Less exposure to these three viruses also means there was less immune boosting among existing populations, he said. This can lead to “larger susceptible populations, especially infants and younger children, due to the relative absence of circulating virus in past years.”
 

A leading theory

Are we paying a price now for people following the edicts from officials to mask up, stand apart, and take other personal and public health precautions during the COVID-19 pandemic?

It’s possible, but that may not be the whole story.

“When it comes to RSV, I think that theory of isolation, social distancing, mask wearing, and not attending schools is a very valid one,” Dr. Schaffner said. “That’s everybody’s favorite [reason].”

He said he is confident that the jump in RSV cases is being driven by previous COVID public health protections. However, he’s “a little more cautious about influenza, in part because influenza is so variable.

“Like people in influenza say, if you’ve seen one influenza season, you’ve seen one influenza season,” Dr. Schaffner said.

“There’s a lot of debate,” he added. “Nobody can say definitively whether the immune deficit or debt is a consequence of not being stimulated and restimulated by the influenza virus over the past two seasons.”
 

‘A perfect storm’

“Now you kind of have the perfect storm,” Dr. Chin-Hong said. “It’s not a good situation for COVID with the variants that are emerging. For influenza, not having seen a lot of influenza the last 2 years, we’re probably more susceptible to getting infected.”

RSV cases rose during summer 2021, but now the weather is colder, and people are interacting more closely. “And it’s very, very transmissible,” he said.

Dr. Chin-Hong also predicted that “even though we don’t have a lot of COVID now, COVID will probably pick up.”

The rise in RSV was unexpected by some experts. “This early influenza is also a bit of a surprise and may be influenced by the fact that lots of us are going back and seeing each other again close-to-close, face-to-face in many enclosed environments,” Dr. Schaffner said.

He estimated the 2022-2023 flu season started 4-6 weeks early “and it’s taken off like a rocket. It started in the Southeast, quickly went to the Southwest and up the East Coast. Now it’s moving dramatically through the Midwest and will continue. It’s quite sure to hit the West Coast if it isn’t there already.”
 

A phenomenon by any other name

Some are calling the situation an “immunity debt,” while others dub it an “immunity pause” or an “immunity deficit.” Many physicians and immunologists have taken to social media to push back on the term “immunity debt,” saying it’s a mischaracterization that is being used to vilify COVID precautions, such as masking, social distancing, and other protective measures taken during the pandemic.

“I prefer the term ‘immunity gap’ ... which is more established in the epidemiology literature, especially given the politicization of the term ‘immunity debt’ by folks recently,” Dr. Messacar said.

“To me, the immunity gap is a scientific observation, not a political argument,” he added.

In a July 2022 publication in The Lancet, Dr. Messacar and his colleagues stated that “decreased exposure to endemic viruses created an immunity gap – a group of susceptible individuals who avoided infection and therefore lack pathogen-specific immunity to protect against future infection. Decreases in childhood vaccinations with pandemic disruptions to health care delivery contribute to this immunity gap for vaccine-preventable diseases, such as influenza,measles, and polio.”

The researchers noted that because of isolation during the pandemic, older children and newborns are being exposed to RSV for the first time. Returning to birthday parties, playing with friends, and going to school without masks means “children are being exposed to RSV, and that’s likely the reason that RSV is moving early and very, very substantially through this now expanded pool of susceptible children,” Dr. Schaffner said.
 

How likely are coinfections?

With peaks in RSV, flu, and COVID-19 cases each predicted in the coming months, how likely is it that someone could get sick with more than one infection at the same time?

Early in the pandemic, coinfection with COVID and the flu was reported in people at some centers on the West Coast, Dr. Auwaerter said. Now, however, “the unpredictable nature of the Omicron subvariants and the potential for further change, along with the never-before-seen significant lessening of influenza over 2 years, leave little for predictability.

“I do think it is less likely, given the extent of immunity now to SARS-CoV-2 in the population,” Dr. Auwaerter said.

“I most worry about viral coinfections ... in people with suppressed immune systems if we have high community rates of the SARS-CoV-2 and influenza circulating this fall and winter,” he added.

Studies during the pandemic suggest that coinfection with the SARS-CoV-2 virus and another respiratory virus were either rare or nonexistent.

Dr. Schaffner said these findings align with his experience at Vanderbilt University, which is part of a CDC-sponsored network that tracks laboratory-confirmed RSV, flu, and COVID cases among people in the hospital. “Coinfections are, at least to date, very unusual.”

There needs to be an asterisk next to that, Dr. Schaffner added. “Looking back over the last 2 years, we’ve had very little influenza, and we’ve had curtailed RSV seasons. So there hasn’t been a whole lot of opportunity for dual infections to occur.

“So this year may be more revelatory as we go forward,” he said.
 

Future concerns

The future is uncertain, Dr. Messacar and colleagues wrote in The Lancet: “Crucially, the patterns of these returning viral outbreaks have been heterogeneous across locations, populations, and pathogens, making predictions and preparations challenging.”

Dr. Chin-Hong used a horse race analogy to illustrate the situation now and going forward. RSV is the front-running horse, and influenza is running behind but trying to catch up. “And then COVID is the dark horse. It’s trailing the race right now – but all these variants are giving the horse extra supplements.

“And the COVID horse is probably going to be very competitive with the front-runner,” he said.

“We’re just at the beginning of the race right now,” Dr. Chin-Hong said, “so that’s why we’re worried that these three [viruses] will be even more pronounced come later in the year.”

A version of this article first appeared on Medscape.com.

The day before doctors had scheduled Amanda Duffy to give birth, the baby jolted her awake with a kick.

A few hours later, on that bright Sunday in November 2014, she leaned back on a park bench to watch her 19-month-old son Rogen enjoy his final day of being an only child. In that moment of calm, she realized that the kick that morning was the last time she had felt the baby move.

She told herself not to worry. She had heard that babies can slow down toward the end of a pregnancy and remembered reading that sugary snacks and cold fluids can stimulate a baby’s movement. When she got back to the family’s home in suburban Minneapolis, she drank a large glass of ice water and grabbed a few Tootsie Rolls off the kitchen counter.

But something about seeing her husband, Chris, lace up his shoes to leave for a run prompted her to blurt out, “I haven’t felt the baby kick.”

Chris called Amanda’s doctor, and they headed to the hospital to be checked. Once there, a nurse maneuvered a fetal monitor around Amanda’s belly. When she had trouble locating a heartbeat, she remarked that the baby must be tucked in tight. The doctor walked into the room, turned the screen away from Amanda and Chris and began searching. She was sorry, Amanda remembers her telling them, but she could not find a heartbeat.

Amanda let out a guttural scream. She said the doctor quickly performed an internal exam, which detected faint heart activity, then rushed Amanda into an emergency cesarean section.

She woke up to the sound of doctors talking to Chris. She listened but couldn’t bring herself to face the news. Her doctor told her she needed to open her eyes.

Amanda, then 31, couldn’t fathom that her daughter had died. She said her doctors had never discussed stillbirth with her. It was not mentioned in any of the pregnancy materials she had read. She didn’t even know that stillbirth was a possibility.

But every year more than 20,000 pregnancies in the United States end in stillbirth, the death of an expected child at 20 weeks or more. That number has exceeded infant mortality every year for the last 10 years. It’s 15 times the number of babies who, according to the Centers for Disease Control and Prevention, died of Sudden Infant Death Syndrome, or SIDS, in 2020.

The deaths are not inevitable. One study found that nearly one in four U.S. stillbirths may be preventable. For pregnancies that last 37 weeks or more, that research shows, the figure jumps to nearly half. Thousands more babies could potentially be delivered safely every year.

But federal agencies have not prioritized critical stillbirth-focused studies that could lead to fewer deaths. Nearly two decades ago, both the CDC and the National Institutes of Health launched key stillbirth tracking and research studies, but the agencies ended those projects within about a decade. The CDC never analyzed some of the data that was collected.

Unlike with SIDS, a leading cause of infant death, federal officials have failed to launch a national campaign to reduce the risk of stillbirth or adequately raise awareness about it. Placental exams and autopsies, which can sometimes explain why stillbirths happened, are underutilized, in part because parents are not counseled on their benefits.

Federal agencies, state health departments, hospitals and doctors have also done a poor job of educating expectant parents about stillbirth or diligently counseling on fetal movement, despite research showing that patients who have had a stillbirth are more likely to have experienced abnormal fetal movements, including decreased activity. Neither the CDC nor the NIH have consistently promoted guidance telling those who are pregnant to be aware of their babies’ movement in the womb as a way to possibly reduce their risk of stillbirth.

The American College of Obstetricians and Gynecologists, the nation’s leading obstetrics organization, has been slow to update its own guidance to doctors on managing a stillbirth. In 2009, ACOG issued a set of guidelines that included a single paragraph regarding fetal movement. Those guidelines weren’t significantly updated for another 11 years.

Perhaps it’s no surprise that federal goals for reducing stillbirths keep moving in the wrong direction. In 2005, the U.S. stillbirth rate was 6.2 per 1,000 live births. The U.S. Department of Health and Human Services, in an effort to eliminate health disparities and establish a target that was “better than the best racial or ethnic group rate,” set a goal of reducing it to 4.1 for 2010. When that wasn’t met, federal officials changed their approach and set what they called more “science-based” and “realistic” goals, raising the 2020 target to 5.6. The U.S. still fell short. The 2030 goal of 5.7 was so attainable that it was met before the decade started. The 2020 rate, the most current according to the CDC, is 5.74.

By comparison, other wealthy countries have implemented national action plans to prevent stillbirth through awareness, research and care. Among other approaches, those countries have focused on increasing education around stillbirth and the importance of a baby’s movements, reducing rates of smoking and identifying fetuses that grow too slowly in the womb.

The efforts have paid off. The Netherlands, for instance, has reduced its rate of stillbirths at 28 weeks or later by more than half, from 5.2 in 2000 to 2.3 in 2019, according to a study published last year in The Lancet.

Dr. Bob Silver, chair of the obstetrics/gynecology department at University of Utah Health and a leading stillbirth expert, coauthored the study that estimated nearly one in four stillbirths are potentially preventable, a figure he referred to as conservative. He called on federal agencies to declare stillbirth reduction a priority the same way they have done for premature birth and maternal mortality.

“I’d like to see us say we really want to reduce the rate of stillbirth and raise awareness and try to do all of the reasonable things that may contribute to reducing stillbirths that other countries have done,” Silver said.

The lack of comprehensive attention and action has contributed to a stillbirth crisis, shrouded in an acceptance that some babies just die. Compounding the tragedy is a stigma and guilt so crushing that the first words some mothers utter when their lifeless babies are placed in their arms are “I’m sorry.”

In the hospital room, Amanda Duffy finally opened her eyes. She named her daughter Reese Christine, the name she had picked out for her before they found out she had died. She was 8 pounds, 3 ounces and 20 1/2 inches long and was born with her umbilical cord wrapped tightly around her neck twice. The baby was still warm when the nurse placed her in Amanda’s arms. Amanda was struck by how lovely her daughter was. Rosy skin. Chris’ red hair. Rogen’s chubby cheeks.

As Amanda held Reese, Chris hunched over the toilet, vomiting. Later that night, as he lay next to Amanda on the hospital bed, he held his daughter. He hadn’t initially wanted to see her. He worried she would be disfigured or, worse, that she would be beautiful and he would fall apart when he couldn’t take her home.

The nurses taught Amanda and Chris how to grieve and love simultaneously. One nurse told Amanda how cute Reese was and asked if she could hold her. Another placed ice packs in Reese’s swaddle to preserve her body so Amanda could keep holding her. Amanda asked the nurses to tuck cotton balls soaked in an orange scent into Reese’s blanket so the smell would trigger the memory of her daughter. And just as if Reese had been born alive, the nurses took pictures and made prints of her hands and feet.

“I felt such a deep, abiding love for her,” Amanda said. “And I was so proud to be her mom.”

On the way home from the hospital, Amanda broke down at the sight of Reese’s empty car seat. The next few weeks passed in a sleep-filled fog punctuated by intense periods of crying. The smell of oranges wrecked her. Her breast milk coming in was agonizing, physically and emotionally. She wore sports bras stuffed with ice packs to ease the pain and dry up her milk supply. While Rogen was at day care, she sobbed in his bed.

In the months that followed, Amanda and Chris searched for answers and wondered whether their medical team had missed warning signs. Late at night, Amanda turned to Google to find information about stillbirths. She mailed her medical records to a doctor who studies stillbirths, who she said told her that Reese’s death could have been prevented. They briefly discussed legal action against her doctors, but she said a lawyer told her it would be difficult to sue.

Amanda and Chris pinpointed her last two months of pregnancy as the time things started to go wrong. She had been diagnosed with polyhydramnios, meaning there was excess amniotic fluid in the womb. Her doctor had scheduled additional weekly testing.

One of those ultrasounds revealed problems with the blood flow in the umbilical cord. Reese’s cord also appeared to be wrapped around her neck, Amanda said later, but was told that was less of a concern, since it occurs in about 20% of normal deliveries. At another appointment, Amanda’s medical records show, Reese failed the portion of a test that measures fetal breathing movements.

At 37 weeks, Amanda told one of the midwives the baby’s movements felt different, but, she said, the midwife told her that it was common for movements to feel weaker with polyhydramnios. At that point, Amanda felt her baby was safer outside than inside and, her medical records show, she asked to schedule a C-section.

Despite voicing concerns about a change in the baby’s movement and asking to deliver earlier, Amanda said she and her husband were told by her midwife she couldn’t deliver for another two weeks. The doctor “continues to advise 39wks,” her medical records show. Waiting until 39 weeks is usually based on a guideline that deliveries should not happen before then unless a medical condition specifically warrants it, because early delivery can lead to complications.

Amanda would have to wait until 39 weeks and one day because, she said, her doctors didn’t typically do elective deliveries on weekends. Amanda was disappointed but said she trusted her team of doctors and midwives.

“I’m not a pushy person,” she said. “My husband is not a pushy person. That was out of our comfort zone to be, like, ‘What are we waiting for?’ But really what we wanted them to say was ‘We should deliver you.’”

Amanda’s final appointment was a maximum 30-minute-long ultrasound that combined a number of assessments to check amniotic fluid, fetal muscle tone, breathing and body movement. After 29 minutes of inactivity, Amanda said, the baby moved a hand. In the parking lot, Amanda called her mother, crying in relief. Four more days, she told her.

Less than 24 hours before the scheduled C-section, Reese was stillborn.

Four months after her death, Amanda, then a career advisor at the University of Minnesota, and Chris, a public relations specialist, wrote a letter to the University of Minnesota Medical Center, where Amanda had given birth to her dead daughter. They said they had “no ill feelings” toward anyone, but “it pains us to know that her death could’ve been prevented if we would have been sent to labor and delivery following that ultrasound.”

They noted that though they were told that Reese had passed the final ultrasound where she took 29 minutes to move, they had since come to believe that she had failed because, according to national standards, at least three movements were required. They also blamed a strict adherence to the 39-week guideline. And they encouraged the hospital staff to read more on umbilical cord accidents and acute polyhydramnios, which they later learned carries an increased stillbirth risk.

The positive feelings they had from speaking up were replaced by dismay when the hospital responded with a three-paragraph letter, signed by seven doctors and eight nurses. They said they had reexamined each medical decision in her case and concluded they had made “the best decisions medically possible.” They expressed their sympathy and said it was “so very heartwarming that you are trying to turn your tragic loss into something that will benefit others.”

Amanda felt dismissed by the medical team all over again. She didn’t expect them to admit fault, but she said she hoped that they would at least learn from Reese’s death to do things differently in the future. She was angry, and hurt, and knew that she would need to find a new doctor.

A spokesperson for the University of Minnesota Medical School told ProPublica she could not comment on individual patient cases and did not respond to questions about general protocols. “We share the physicians’ condolences,” she wrote, adding that the doctors and the university “are dedicated to delivering high quality, accessible and inclusive health care.”

For many expectant parents, it’s hard to muster the courage to call a doctor about something they’re not even sure is a problem.

“Moms self-censor a lot. No one wants to be that mom that all the doctors are rolling their eyes at because she’s freaking out over nothing,” said Samantha Banerjee, executive director of PUSH for Empowered Pregnancy, a nonprofit based in New York state that works to prevent stillbirths. Banerjee’s daughter, Alana, was stillborn two days before her due date.

In addition to raising awareness that stillbirths can happen even in low-risk pregnancies, PUSH teaches pregnant people how to advocate for themselves. The volunteers advise them to put their requests in writing and not to spend time drinking juice or lying on their side if they are worried about their baby’s lack of movement. In the majority of cases, a call or visit to the hospital reassures them.

But, the group tells parents, if their baby is in distress, calling their doctor can save their life.

Debbie Haine Vijayvergiya is fighting another narrative: that stillbirths are a rare fluke that “just happen.” When her daughter Autumn Joy was born without a heartbeat in 2011, Haine Vijayvergiya said, her doctor told her having a stillborn baby was as rare as being struck by lightning.

She believed him, but then she looked up the odds of a lightning strike and found they are less than one in a million – and most people survive. In 2020, according to the CDC, there was one stillbirth for about every 175 births.

“I’ve spoken to more women than I can count that said, ‘I raised the red flag, and I was sent home. I was told to eat a piece of cake and have some orange juice and lay on my left side,’ only to wake up the next day and their baby is not alive,” said Haine Vijayvergiya, a New Jersey mother and maternal health advocate.

She has fought for more than a decade to pass stillbirth legislation as her daughter’s legacy. Her current undertaking is her most ambitious. The federal Stillbirth Health Improvement and Education (SHINE) for Autumn Act, named after her daughter, would authorize $9 million a year for five years in federal funding for research, better data collection and training for fetal autopsies. But it is currently sitting in the Senate Committee on Health, Education, Labor, and Pensions.

Not all stillbirths are preventable, and medical experts agree more research is needed to determine who is most at risk and which babies can potentially be saved. Complicating matters is the wide range of risk factors, including hypertension and diabetes, smoking, obesity, being pregnant with multiples, being 35 or older and having had a previous stillbirth.

ProPublica reported this summer on how the U.S. botched the rollout of COVID-19 vaccines for pregnant people, who faced an increased risk for stillbirth if they were unvaccinated and contracted the virus, especially during the Delta wave.

Doctors often work to balance the risk of stillbirth with other dangers, particularly an increased chance of being admitted to neonatal intensive care units or even death of the baby if it is born too early. ACOG and the Society for Maternal-Fetal Medicine have issued guidance to try to slow a rise in elective deliveries before 39 weeks and the potential harm that can result. The Joint Commission, a national accrediting organization, began evaluating hospitals in 2010 based on that standard.

A 2019 study found that the risks of stillbirth slightly increased after the rule went into effect, but fewer infants died after birth. Other studies have not found an effect on stillbirths.

Last year, the obstetric groups updated their guidance to allow doctors to consider an early delivery if a woman has anxiety and a history of stillbirth, writing that a previous stillbirth “may” warrant an early delivery for patients who understand and accept the risks. For those who have previously had a stillbirth, one modeling analysis found that 38 weeks is the optimal timing of delivery, considering the increased risk of another stillbirth.

“A woman who has had a previous stillbirth at 37 weeks – one could argue that it’s cruel and unusual punishment to make her go to 39 weeks with her next pregnancy, although that is the current recommendation,” said Dr. Neil Mandsager, a maternal-fetal medicine specialist in Iowa and a medical advisor to a stillbirth prevention nonprofit.

At or after 40 weeks, the risk of stillbirth increases, especially for women 35 or older. Their risk, research shows, is doubled from 39 weeks to 40 and is more than six times as high at 42 weeks. In 2019 and 2020, a combined 1,200 stillbirths occurred between 40 and 42 weeks, according to the most recent CDC data.

Deciding when a patient should deliver entails weighing the risks to the mother and the infant against a possible stillbirth as the pregnancy continues, said Dr. Mark Turrentine, chair of ACOG’s Clinical Consensus Committee-Obstetrics, which helped create the guidance on managing a stillbirth. He said ACOG has addressed stillbirth in other documents and extensively in its 2021 guidance on fetal surveillance and testing, which is done to reduce the risk of stillbirth.

ACOG said it routinely reviewed its guidance on management of stillbirth but was unable to make significant updates “due to the lack of new, evidence-based research.” While prevention is a great concern to ACOG, Turrentine said it’s difficult to know how many stillbirths are preventable.

He said it’s standard practice for doctors to ask about fetal movement, and ACOG updated its guidance after new research became available. Doctors also need to include patients in decision-making and tailor care to them, he said, whether that›s using aspirin in patients at high risk of preeclampsia – a serious high blood pressure condition during pregnancy – or ordering additional tests.

After Reese’s death, Amanda and Chris Duffy wanted to get pregnant again. They sought out an obstetrician-gynecologist who would educate and listen to them. They set up several consultations until they found Dr. Emily Hawes-Van Pelt, who was recommended by another family who had had a stillbirth.

Hawes-Van Pelt cried with Amanda and Chris at their first meeting.

“I told her I was scared to be involved,” Hawes-Van Pelt said. “It’s such a tricky subsequent pregnancy because there’s so much worry and anxiety about the horrible, awful thing happening again.”

Amanda’s fear of delivering another dead baby led to an all-consuming anxiety, but Hawes-Van Pelt supported her when she asked for additional monitoring, testing and an early delivery.

When Hawes-Van Pelt switched practices midway through Amanda’s pregnancy, Amanda followed her. But the new hospital pushed back on the early delivery.

“We intervene early for poorly controlled diabetes,” Hawes-Van Pelt said. “We intervene early for all sorts of medical issues. Anxiety and prior stillbirth are two medical issues that we can intervene earlier for.”

Hawes-Van Pelt said she learned a lot from caring for Amanda, who made her reevaluate some of her own assumptions around stillbirths.

“I had a horrible fear of scaring women unnecessarily, and then realized that I was just not preparing women or educating them because of my own fears around it,” she said. “If you can carry a human being in your body and birth that human being and take care of it, you can hear those words.”

The hospital eventually agreed to let Hawes-Van Pelt schedule Amanda for a 37-week C-section. But after Amanda was again diagnosed with polyhydramnios, she went in for a C-section even earlier. She gave birth in 2015 to a healthy boy she and Chris named Rhett. Two years later, Amanda and Hawes-Van Pelt followed the same pregnancy plan, and she delivered a girl named Maeda Reese. Amanda chose the name because, when said quickly, it sounds like “made of Reese.”

Federal agencies, national organizations and state and city officials have mobilized in recent years to address maternal mortality, when mothers die during pregnancy, at delivery or soon after childbirth. They have focused on improving data collection, passing legislation and creating awareness campaigns that encourage medical professionals and others to listen when women say something doesn›t feel right.

In 2017, ProPublica and NPR documented the U.S. maternal mortality crisis, including alarming racial disparities.

According to CDC data, Black women face nearly three times the risk of maternal mortality. They also are more than twice – and in some states close to three times – as likely to have a stillbirth than white women, meaning not only are Black mothers dying at a disproportionate rate, so are their babies.

Janet Petersen, a state senator from Iowa, said it gives her hope to see how the country has turned its attention to maternal mortality and disparities in health care. She simply cannot understand why stillbirth isn’t being met with the same urgency.

In 2020, the CDC reported 861 mothers died either while pregnant or within six weeks of giving birth. That same year, 20,854 babies were stillborn.

Stillbirth, Petersen said, is a missing piece of the puzzle. Research shows the likelihood of severe maternal complications was more than four times higher for pregnancies that ended in stillbirths, and mothers who died within six weeks of delivery were more likely to have had a stillbirth.

“We see it over and over again that stillbirth is one of the maternal health care issues that continuously gets ignored,” said Petersen, a Democrat.

Petersen was a young legislator in 2003 when her daughter Grace was born still. Devastated, she thought of her grandmother, who lost a baby to stillbirth in 1920, just a few weeks before women got the right to vote.

“I was laying in my hospital bed thinking, ‘How could this still be happening in our country?’” Petersen recalled. “And it seemed, from the medical perspective, that, well, stillbirth happens. We can’t do anything to prevent them.”

Over the next few months, Petersen heard from other mothers who had lost their babies and wanted to spark change. As an elected official, Petersen was in a position to do that. In 2004, she introduced legislation that required the Iowa Department of Public Health to create a stillbirths work group, later securing funding through the CDC to create a stillbirth registry.

But the CDC didn’t renew the funding and never analyzed the data from the registry, though a CDC spokesperson said the Iowa Department of Public Health examined the data. Officials from the department did not respond to requests for comment.

Petersen and her fellow mothers pivoted. After hearing how researchers in Norway were able to increase awareness around fetal movement, they co-founded a nonprofit aimed at doing the same in the U.S.

The group, Healthy Birth Day, created colorful “Count the Kicks” pamphlets – and later an app – teaching pregnant people how to track a baby’s movements and establish what is normal for them. Monitoring a baby’s movements is the earliest and sometimes only indication that something may be wrong, said Emily Price, chief executive officer of Healthy Birth Day. One of the organization’s main messages is for pregnant people to speak up and clinicians to listen.

“Unfortunately, there are still doctors who brush women off or send them home when they come in with a complaint of a change in their baby’s movements,” Price said. “And babies are dying because of it.”

One Indiana county, which recorded 65 stillbirths from 2017 through 2019, reported that 74% had either some chance or a good chance of prevention, according to St. Joseph County Department of Health’s Fetal Infant Mortality Review program. For mothers who experienced decreased fetal movement in the few hours or days before the stillbirth, that estimate jumped to 90%.

Although there is not a scientific consensus that kick counting can prevent stillbirths, national groups, including ACOG, recommend that medical professionals encourage their patients to be aware of fetal movement patterns. ACOG also advises medical professionals to be attentive to a mother’s concerns about reduced movement and address them “in a systematic way.”

One complaint the CDC hears too often, an agency spokesperson said, is that pregnant people and those who gave birth recently find that their concerns are dismissed or ignored. “Listening and taking the concerns of pregnant and recently pregnant people seriously,” she said, “is a simple, yet powerful action to prevent serious health complications and even death.”

The CDC, she said, is “very interested” in expanding its research on stillbirth, which is “a crucial part of the development of any awareness or prevention campaigns.” In addition to working to improve its stillbirth data quality, the agency has funded some pilot programs at the city and state level to better track stillbirths, survey people who have had a stillbirth and research risk factors and causes. The Iowa registry, she said, led the CDC to fund different research projects in Arkansas and Massachusetts, which are ongoing.

In 2009, the CDC acknowledged that fetal mortality remained a “major, but often overlooked, public health problem.” Officials wrote that much of the public health concern had been focused on infant mortality “in part due to lesser awareness of the magnitude of fetal mortality, its causes, and prevention strategies.”

But little has changed over the past 13 years. Echoing its earlier message, the CDC this year declared that “much work remains” and that “stillbirth is not often viewed as a public health issue, so increased awareness is key.”

A spokesperson for the Eunice Kennedy Shriver National Institute of Child Health and Human Development, which is part of the NIH, said the agency has continually funded research on stillbirths, even after one of its key studies ended. The agency, she said, also supports research on conditions that increase the risk of stillbirth.

As a scientific research institute, it does not issue clinical guidelines or recommendations, she said, though it did launch the Safe to Sleep campaign in 1994, two decades after Congress put it in charge of SIDS federal research efforts. That campaign, which educates parents and caregivers on ways to reduce the risk of SIDS, highlights recommendations issued by the American Academy of Pediatrics. She said the agency will continue to collaborate with organizations that raise awareness about stillbirth and other pregnancy complications “to amplify their messages and efforts.”

“NICHD continues to support research on the prevention, causes, frequency, and risk factors of stillbirth,” the spokesperson said in an email. “Our commitment to enhancing understanding of stillbirth and improving outcomes focuses on building the scientific knowledge base.”

But getting laws on the books that could raise awareness around stillbirth – even when they don’t require additional funding – has been a struggle. Petersen and Price are pushing Congress to pass legislation that would add stillbirth research and prevention to the list of activities approved for federal maternal health dollars.

Though the bill doesn’t ask for any additional funding, it has not yet passed.

In addition, the SHINE for Autumn Act breezed through the House of Representatives in December 2021. After Haine Vijayvergiya, the New Jersey mother who has championed it, secured bipartisan support from U.S. Sens. Cory Booker, D-N.J., and Marco Rubio, R-Fla., she thought the most comprehensive stillbirth legislation in U.S. history would finally become law.

Neither bill has sparked controversy.

But months after press releases announced the SHINE legislation and referred to the U.S. stillbirth rate as “unacceptable,” lawmakers and the families they represent are running out of time as this session of Congress prepares to adjourn.

“From the day that the bill was introduced into the Senate,” Haine Vijayvergiya said, “approximately 13,000 babies have been born still.”

Last month, on a brilliant fall day much like the one when Reese was stillborn, Amanda Duffy bent down to kiss her son Rogen’s head before they walked on stage.

She wore a soft blue T-shirt tucked into her jeans that read “Be courageous.” The message was as much for her as it was for the crowd on the National Mall in Washington, D.C., many of them like her, mothers who didn’t know stillbirth happened until it happened to them. Since Reese’s death, she has coached doctors and nurses on improving care for patients who have suffered pregnancy loss. Among her many suggestions, she tells them their first words when a concerned patient reaches out should be “I’m so glad you called.”

A few hundred people had gathered for The Big PUSH to End Preventable Stillbirth, billed as the first-ever march on the issue. As part of an art installation, Amanda wrote a note to Reese: “You’re pretty magical & for that I’m grateful. You’re a change maker and you are so very loved. Love, Mama.” Before she slipped the folded paper into a sea of more than 20,000 baby hats, Rogen added his own message: “Hope you are having a good time – Rogen.”

Reese would have turned 8 this month.

Before Amanda spoke, she took a deep breath and silenced her nerves. She walked onto the stage and called on Congress to pass the stillbirth legislation before it. She didn’t ask. She demanded.

“It’s time to empower pregnant people and their care providers with information that leads to prevention,” she insisted.

With the afternoon sun bearing down, Amanda and Rogen disappeared into the crowd of families marching toward the Capitol. Many carried signs. Some pushed empty strollers. Amanda was still wearing the orange-scented oil she had rubbed on her wrists that morning.

This story was originally published on ProPublica. ProPublica is a nonprofit newsroom that investigates abuses of power. Sign up to receive their biggest stories as soon as they’re published

The day before doctors had scheduled Amanda Duffy to give birth, the baby jolted her awake with a kick.

A few hours later, on that bright Sunday in November 2014, she leaned back on a park bench to watch her 19-month-old son Rogen enjoy his final day of being an only child. In that moment of calm, she realized that the kick that morning was the last time she had felt the baby move.

She told herself not to worry. She had heard that babies can slow down toward the end of a pregnancy and remembered reading that sugary snacks and cold fluids can stimulate a baby’s movement. When she got back to the family’s home in suburban Minneapolis, she drank a large glass of ice water and grabbed a few Tootsie Rolls off the kitchen counter.

But something about seeing her husband, Chris, lace up his shoes to leave for a run prompted her to blurt out, “I haven’t felt the baby kick.”

Chris called Amanda’s doctor, and they headed to the hospital to be checked. Once there, a nurse maneuvered a fetal monitor around Amanda’s belly. When she had trouble locating a heartbeat, she remarked that the baby must be tucked in tight. The doctor walked into the room, turned the screen away from Amanda and Chris and began searching. She was sorry, Amanda remembers her telling them, but she could not find a heartbeat.

Amanda let out a guttural scream. She said the doctor quickly performed an internal exam, which detected faint heart activity, then rushed Amanda into an emergency cesarean section.

She woke up to the sound of doctors talking to Chris. She listened but couldn’t bring herself to face the news. Her doctor told her she needed to open her eyes.

Amanda, then 31, couldn’t fathom that her daughter had died. She said her doctors had never discussed stillbirth with her. It was not mentioned in any of the pregnancy materials she had read. She didn’t even know that stillbirth was a possibility.

But every year more than 20,000 pregnancies in the United States end in stillbirth, the death of an expected child at 20 weeks or more. That number has exceeded infant mortality every year for the last 10 years. It’s 15 times the number of babies who, according to the Centers for Disease Control and Prevention, died of Sudden Infant Death Syndrome, or SIDS, in 2020.

The deaths are not inevitable. One study found that nearly one in four U.S. stillbirths may be preventable. For pregnancies that last 37 weeks or more, that research shows, the figure jumps to nearly half. Thousands more babies could potentially be delivered safely every year.

But federal agencies have not prioritized critical stillbirth-focused studies that could lead to fewer deaths. Nearly two decades ago, both the CDC and the National Institutes of Health launched key stillbirth tracking and research studies, but the agencies ended those projects within about a decade. The CDC never analyzed some of the data that was collected.

Unlike with SIDS, a leading cause of infant death, federal officials have failed to launch a national campaign to reduce the risk of stillbirth or adequately raise awareness about it. Placental exams and autopsies, which can sometimes explain why stillbirths happened, are underutilized, in part because parents are not counseled on their benefits.

Federal agencies, state health departments, hospitals and doctors have also done a poor job of educating expectant parents about stillbirth or diligently counseling on fetal movement, despite research showing that patients who have had a stillbirth are more likely to have experienced abnormal fetal movements, including decreased activity. Neither the CDC nor the NIH have consistently promoted guidance telling those who are pregnant to be aware of their babies’ movement in the womb as a way to possibly reduce their risk of stillbirth.

The American College of Obstetricians and Gynecologists, the nation’s leading obstetrics organization, has been slow to update its own guidance to doctors on managing a stillbirth. In 2009, ACOG issued a set of guidelines that included a single paragraph regarding fetal movement. Those guidelines weren’t significantly updated for another 11 years.

Perhaps it’s no surprise that federal goals for reducing stillbirths keep moving in the wrong direction. In 2005, the U.S. stillbirth rate was 6.2 per 1,000 live births. The U.S. Department of Health and Human Services, in an effort to eliminate health disparities and establish a target that was “better than the best racial or ethnic group rate,” set a goal of reducing it to 4.1 for 2010. When that wasn’t met, federal officials changed their approach and set what they called more “science-based” and “realistic” goals, raising the 2020 target to 5.6. The U.S. still fell short. The 2030 goal of 5.7 was so attainable that it was met before the decade started. The 2020 rate, the most current according to the CDC, is 5.74.

By comparison, other wealthy countries have implemented national action plans to prevent stillbirth through awareness, research and care. Among other approaches, those countries have focused on increasing education around stillbirth and the importance of a baby’s movements, reducing rates of smoking and identifying fetuses that grow too slowly in the womb.

The efforts have paid off. The Netherlands, for instance, has reduced its rate of stillbirths at 28 weeks or later by more than half, from 5.2 in 2000 to 2.3 in 2019, according to a study published last year in The Lancet.

Dr. Bob Silver, chair of the obstetrics/gynecology department at University of Utah Health and a leading stillbirth expert, coauthored the study that estimated nearly one in four stillbirths are potentially preventable, a figure he referred to as conservative. He called on federal agencies to declare stillbirth reduction a priority the same way they have done for premature birth and maternal mortality.

“I’d like to see us say we really want to reduce the rate of stillbirth and raise awareness and try to do all of the reasonable things that may contribute to reducing stillbirths that other countries have done,” Silver said.

The lack of comprehensive attention and action has contributed to a stillbirth crisis, shrouded in an acceptance that some babies just die. Compounding the tragedy is a stigma and guilt so crushing that the first words some mothers utter when their lifeless babies are placed in their arms are “I’m sorry.”

In the hospital room, Amanda Duffy finally opened her eyes. She named her daughter Reese Christine, the name she had picked out for her before they found out she had died. She was 8 pounds, 3 ounces and 20 1/2 inches long and was born with her umbilical cord wrapped tightly around her neck twice. The baby was still warm when the nurse placed her in Amanda’s arms. Amanda was struck by how lovely her daughter was. Rosy skin. Chris’ red hair. Rogen’s chubby cheeks.

As Amanda held Reese, Chris hunched over the toilet, vomiting. Later that night, as he lay next to Amanda on the hospital bed, he held his daughter. He hadn’t initially wanted to see her. He worried she would be disfigured or, worse, that she would be beautiful and he would fall apart when he couldn’t take her home.

The nurses taught Amanda and Chris how to grieve and love simultaneously. One nurse told Amanda how cute Reese was and asked if she could hold her. Another placed ice packs in Reese’s swaddle to preserve her body so Amanda could keep holding her. Amanda asked the nurses to tuck cotton balls soaked in an orange scent into Reese’s blanket so the smell would trigger the memory of her daughter. And just as if Reese had been born alive, the nurses took pictures and made prints of her hands and feet.

“I felt such a deep, abiding love for her,” Amanda said. “And I was so proud to be her mom.”

On the way home from the hospital, Amanda broke down at the sight of Reese’s empty car seat. The next few weeks passed in a sleep-filled fog punctuated by intense periods of crying. The smell of oranges wrecked her. Her breast milk coming in was agonizing, physically and emotionally. She wore sports bras stuffed with ice packs to ease the pain and dry up her milk supply. While Rogen was at day care, she sobbed in his bed.

In the months that followed, Amanda and Chris searched for answers and wondered whether their medical team had missed warning signs. Late at night, Amanda turned to Google to find information about stillbirths. She mailed her medical records to a doctor who studies stillbirths, who she said told her that Reese’s death could have been prevented. They briefly discussed legal action against her doctors, but she said a lawyer told her it would be difficult to sue.

Amanda and Chris pinpointed her last two months of pregnancy as the time things started to go wrong. She had been diagnosed with polyhydramnios, meaning there was excess amniotic fluid in the womb. Her doctor had scheduled additional weekly testing.

One of those ultrasounds revealed problems with the blood flow in the umbilical cord. Reese’s cord also appeared to be wrapped around her neck, Amanda said later, but was told that was less of a concern, since it occurs in about 20% of normal deliveries. At another appointment, Amanda’s medical records show, Reese failed the portion of a test that measures fetal breathing movements.

At 37 weeks, Amanda told one of the midwives the baby’s movements felt different, but, she said, the midwife told her that it was common for movements to feel weaker with polyhydramnios. At that point, Amanda felt her baby was safer outside than inside and, her medical records show, she asked to schedule a C-section.

Despite voicing concerns about a change in the baby’s movement and asking to deliver earlier, Amanda said she and her husband were told by her midwife she couldn’t deliver for another two weeks. The doctor “continues to advise 39wks,” her medical records show. Waiting until 39 weeks is usually based on a guideline that deliveries should not happen before then unless a medical condition specifically warrants it, because early delivery can lead to complications.

Amanda would have to wait until 39 weeks and one day because, she said, her doctors didn’t typically do elective deliveries on weekends. Amanda was disappointed but said she trusted her team of doctors and midwives.

“I’m not a pushy person,” she said. “My husband is not a pushy person. That was out of our comfort zone to be, like, ‘What are we waiting for?’ But really what we wanted them to say was ‘We should deliver you.’”

Amanda’s final appointment was a maximum 30-minute-long ultrasound that combined a number of assessments to check amniotic fluid, fetal muscle tone, breathing and body movement. After 29 minutes of inactivity, Amanda said, the baby moved a hand. In the parking lot, Amanda called her mother, crying in relief. Four more days, she told her.

Less than 24 hours before the scheduled C-section, Reese was stillborn.

Four months after her death, Amanda, then a career advisor at the University of Minnesota, and Chris, a public relations specialist, wrote a letter to the University of Minnesota Medical Center, where Amanda had given birth to her dead daughter. They said they had “no ill feelings” toward anyone, but “it pains us to know that her death could’ve been prevented if we would have been sent to labor and delivery following that ultrasound.”

They noted that though they were told that Reese had passed the final ultrasound where she took 29 minutes to move, they had since come to believe that she had failed because, according to national standards, at least three movements were required. They also blamed a strict adherence to the 39-week guideline. And they encouraged the hospital staff to read more on umbilical cord accidents and acute polyhydramnios, which they later learned carries an increased stillbirth risk.

The positive feelings they had from speaking up were replaced by dismay when the hospital responded with a three-paragraph letter, signed by seven doctors and eight nurses. They said they had reexamined each medical decision in her case and concluded they had made “the best decisions medically possible.” They expressed their sympathy and said it was “so very heartwarming that you are trying to turn your tragic loss into something that will benefit others.”

Amanda felt dismissed by the medical team all over again. She didn’t expect them to admit fault, but she said she hoped that they would at least learn from Reese’s death to do things differently in the future. She was angry, and hurt, and knew that she would need to find a new doctor.

A spokesperson for the University of Minnesota Medical School told ProPublica she could not comment on individual patient cases and did not respond to questions about general protocols. “We share the physicians’ condolences,” she wrote, adding that the doctors and the university “are dedicated to delivering high quality, accessible and inclusive health care.”

For many expectant parents, it’s hard to muster the courage to call a doctor about something they’re not even sure is a problem.

“Moms self-censor a lot. No one wants to be that mom that all the doctors are rolling their eyes at because she’s freaking out over nothing,” said Samantha Banerjee, executive director of PUSH for Empowered Pregnancy, a nonprofit based in New York state that works to prevent stillbirths. Banerjee’s daughter, Alana, was stillborn two days before her due date.

In addition to raising awareness that stillbirths can happen even in low-risk pregnancies, PUSH teaches pregnant people how to advocate for themselves. The volunteers advise them to put their requests in writing and not to spend time drinking juice or lying on their side if they are worried about their baby’s lack of movement. In the majority of cases, a call or visit to the hospital reassures them.

But, the group tells parents, if their baby is in distress, calling their doctor can save their life.

Debbie Haine Vijayvergiya is fighting another narrative: that stillbirths are a rare fluke that “just happen.” When her daughter Autumn Joy was born without a heartbeat in 2011, Haine Vijayvergiya said, her doctor told her having a stillborn baby was as rare as being struck by lightning.

She believed him, but then she looked up the odds of a lightning strike and found they are less than one in a million – and most people survive. In 2020, according to the CDC, there was one stillbirth for about every 175 births.

“I’ve spoken to more women than I can count that said, ‘I raised the red flag, and I was sent home. I was told to eat a piece of cake and have some orange juice and lay on my left side,’ only to wake up the next day and their baby is not alive,” said Haine Vijayvergiya, a New Jersey mother and maternal health advocate.

She has fought for more than a decade to pass stillbirth legislation as her daughter’s legacy. Her current undertaking is her most ambitious. The federal Stillbirth Health Improvement and Education (SHINE) for Autumn Act, named after her daughter, would authorize $9 million a year for five years in federal funding for research, better data collection and training for fetal autopsies. But it is currently sitting in the Senate Committee on Health, Education, Labor, and Pensions.

Not all stillbirths are preventable, and medical experts agree more research is needed to determine who is most at risk and which babies can potentially be saved. Complicating matters is the wide range of risk factors, including hypertension and diabetes, smoking, obesity, being pregnant with multiples, being 35 or older and having had a previous stillbirth.

ProPublica reported this summer on how the U.S. botched the rollout of COVID-19 vaccines for pregnant people, who faced an increased risk for stillbirth if they were unvaccinated and contracted the virus, especially during the Delta wave.

Doctors often work to balance the risk of stillbirth with other dangers, particularly an increased chance of being admitted to neonatal intensive care units or even death of the baby if it is born too early. ACOG and the Society for Maternal-Fetal Medicine have issued guidance to try to slow a rise in elective deliveries before 39 weeks and the potential harm that can result. The Joint Commission, a national accrediting organization, began evaluating hospitals in 2010 based on that standard.

A 2019 study found that the risks of stillbirth slightly increased after the rule went into effect, but fewer infants died after birth. Other studies have not found an effect on stillbirths.

Last year, the obstetric groups updated their guidance to allow doctors to consider an early delivery if a woman has anxiety and a history of stillbirth, writing that a previous stillbirth “may” warrant an early delivery for patients who understand and accept the risks. For those who have previously had a stillbirth, one modeling analysis found that 38 weeks is the optimal timing of delivery, considering the increased risk of another stillbirth.

“A woman who has had a previous stillbirth at 37 weeks – one could argue that it’s cruel and unusual punishment to make her go to 39 weeks with her next pregnancy, although that is the current recommendation,” said Dr. Neil Mandsager, a maternal-fetal medicine specialist in Iowa and a medical advisor to a stillbirth prevention nonprofit.

At or after 40 weeks, the risk of stillbirth increases, especially for women 35 or older. Their risk, research shows, is doubled from 39 weeks to 40 and is more than six times as high at 42 weeks. In 2019 and 2020, a combined 1,200 stillbirths occurred between 40 and 42 weeks, according to the most recent CDC data.

Deciding when a patient should deliver entails weighing the risks to the mother and the infant against a possible stillbirth as the pregnancy continues, said Dr. Mark Turrentine, chair of ACOG’s Clinical Consensus Committee-Obstetrics, which helped create the guidance on managing a stillbirth. He said ACOG has addressed stillbirth in other documents and extensively in its 2021 guidance on fetal surveillance and testing, which is done to reduce the risk of stillbirth.

ACOG said it routinely reviewed its guidance on management of stillbirth but was unable to make significant updates “due to the lack of new, evidence-based research.” While prevention is a great concern to ACOG, Turrentine said it’s difficult to know how many stillbirths are preventable.

He said it’s standard practice for doctors to ask about fetal movement, and ACOG updated its guidance after new research became available. Doctors also need to include patients in decision-making and tailor care to them, he said, whether that›s using aspirin in patients at high risk of preeclampsia – a serious high blood pressure condition during pregnancy – or ordering additional tests.

After Reese’s death, Amanda and Chris Duffy wanted to get pregnant again. They sought out an obstetrician-gynecologist who would educate and listen to them. They set up several consultations until they found Dr. Emily Hawes-Van Pelt, who was recommended by another family who had had a stillbirth.

Hawes-Van Pelt cried with Amanda and Chris at their first meeting.

“I told her I was scared to be involved,” Hawes-Van Pelt said. “It’s such a tricky subsequent pregnancy because there’s so much worry and anxiety about the horrible, awful thing happening again.”

Amanda’s fear of delivering another dead baby led to an all-consuming anxiety, but Hawes-Van Pelt supported her when she asked for additional monitoring, testing and an early delivery.

When Hawes-Van Pelt switched practices midway through Amanda’s pregnancy, Amanda followed her. But the new hospital pushed back on the early delivery.

“We intervene early for poorly controlled diabetes,” Hawes-Van Pelt said. “We intervene early for all sorts of medical issues. Anxiety and prior stillbirth are two medical issues that we can intervene earlier for.”

Hawes-Van Pelt said she learned a lot from caring for Amanda, who made her reevaluate some of her own assumptions around stillbirths.

“I had a horrible fear of scaring women unnecessarily, and then realized that I was just not preparing women or educating them because of my own fears around it,” she said. “If you can carry a human being in your body and birth that human being and take care of it, you can hear those words.”

The hospital eventually agreed to let Hawes-Van Pelt schedule Amanda for a 37-week C-section. But after Amanda was again diagnosed with polyhydramnios, she went in for a C-section even earlier. She gave birth in 2015 to a healthy boy she and Chris named Rhett. Two years later, Amanda and Hawes-Van Pelt followed the same pregnancy plan, and she delivered a girl named Maeda Reese. Amanda chose the name because, when said quickly, it sounds like “made of Reese.”

Federal agencies, national organizations and state and city officials have mobilized in recent years to address maternal mortality, when mothers die during pregnancy, at delivery or soon after childbirth. They have focused on improving data collection, passing legislation and creating awareness campaigns that encourage medical professionals and others to listen when women say something doesn›t feel right.

In 2017, ProPublica and NPR documented the U.S. maternal mortality crisis, including alarming racial disparities.

According to CDC data, Black women face nearly three times the risk of maternal mortality. They also are more than twice – and in some states close to three times – as likely to have a stillbirth than white women, meaning not only are Black mothers dying at a disproportionate rate, so are their babies.

Janet Petersen, a state senator from Iowa, said it gives her hope to see how the country has turned its attention to maternal mortality and disparities in health care. She simply cannot understand why stillbirth isn’t being met with the same urgency.

In 2020, the CDC reported 861 mothers died either while pregnant or within six weeks of giving birth. That same year, 20,854 babies were stillborn.

Stillbirth, Petersen said, is a missing piece of the puzzle. Research shows the likelihood of severe maternal complications was more than four times higher for pregnancies that ended in stillbirths, and mothers who died within six weeks of delivery were more likely to have had a stillbirth.

“We see it over and over again that stillbirth is one of the maternal health care issues that continuously gets ignored,” said Petersen, a Democrat.

Petersen was a young legislator in 2003 when her daughter Grace was born still. Devastated, she thought of her grandmother, who lost a baby to stillbirth in 1920, just a few weeks before women got the right to vote.

“I was laying in my hospital bed thinking, ‘How could this still be happening in our country?’” Petersen recalled. “And it seemed, from the medical perspective, that, well, stillbirth happens. We can’t do anything to prevent them.”

Over the next few months, Petersen heard from other mothers who had lost their babies and wanted to spark change. As an elected official, Petersen was in a position to do that. In 2004, she introduced legislation that required the Iowa Department of Public Health to create a stillbirths work group, later securing funding through the CDC to create a stillbirth registry.

But the CDC didn’t renew the funding and never analyzed the data from the registry, though a CDC spokesperson said the Iowa Department of Public Health examined the data. Officials from the department did not respond to requests for comment.

Petersen and her fellow mothers pivoted. After hearing how researchers in Norway were able to increase awareness around fetal movement, they co-founded a nonprofit aimed at doing the same in the U.S.

The group, Healthy Birth Day, created colorful “Count the Kicks” pamphlets – and later an app – teaching pregnant people how to track a baby’s movements and establish what is normal for them. Monitoring a baby’s movements is the earliest and sometimes only indication that something may be wrong, said Emily Price, chief executive officer of Healthy Birth Day. One of the organization’s main messages is for pregnant people to speak up and clinicians to listen.

“Unfortunately, there are still doctors who brush women off or send them home when they come in with a complaint of a change in their baby’s movements,” Price said. “And babies are dying because of it.”

One Indiana county, which recorded 65 stillbirths from 2017 through 2019, reported that 74% had either some chance or a good chance of prevention, according to St. Joseph County Department of Health’s Fetal Infant Mortality Review program. For mothers who experienced decreased fetal movement in the few hours or days before the stillbirth, that estimate jumped to 90%.

Although there is not a scientific consensus that kick counting can prevent stillbirths, national groups, including ACOG, recommend that medical professionals encourage their patients to be aware of fetal movement patterns. ACOG also advises medical professionals to be attentive to a mother’s concerns about reduced movement and address them “in a systematic way.”

One complaint the CDC hears too often, an agency spokesperson said, is that pregnant people and those who gave birth recently find that their concerns are dismissed or ignored. “Listening and taking the concerns of pregnant and recently pregnant people seriously,” she said, “is a simple, yet powerful action to prevent serious health complications and even death.”

The CDC, she said, is “very interested” in expanding its research on stillbirth, which is “a crucial part of the development of any awareness or prevention campaigns.” In addition to working to improve its stillbirth data quality, the agency has funded some pilot programs at the city and state level to better track stillbirths, survey people who have had a stillbirth and research risk factors and causes. The Iowa registry, she said, led the CDC to fund different research projects in Arkansas and Massachusetts, which are ongoing.

In 2009, the CDC acknowledged that fetal mortality remained a “major, but often overlooked, public health problem.” Officials wrote that much of the public health concern had been focused on infant mortality “in part due to lesser awareness of the magnitude of fetal mortality, its causes, and prevention strategies.”

But little has changed over the past 13 years. Echoing its earlier message, the CDC this year declared that “much work remains” and that “stillbirth is not often viewed as a public health issue, so increased awareness is key.”

A spokesperson for the Eunice Kennedy Shriver National Institute of Child Health and Human Development, which is part of the NIH, said the agency has continually funded research on stillbirths, even after one of its key studies ended. The agency, she said, also supports research on conditions that increase the risk of stillbirth.

As a scientific research institute, it does not issue clinical guidelines or recommendations, she said, though it did launch the Safe to Sleep campaign in 1994, two decades after Congress put it in charge of SIDS federal research efforts. That campaign, which educates parents and caregivers on ways to reduce the risk of SIDS, highlights recommendations issued by the American Academy of Pediatrics. She said the agency will continue to collaborate with organizations that raise awareness about stillbirth and other pregnancy complications “to amplify their messages and efforts.”

“NICHD continues to support research on the prevention, causes, frequency, and risk factors of stillbirth,” the spokesperson said in an email. “Our commitment to enhancing understanding of stillbirth and improving outcomes focuses on building the scientific knowledge base.”

But getting laws on the books that could raise awareness around stillbirth – even when they don’t require additional funding – has been a struggle. Petersen and Price are pushing Congress to pass legislation that would add stillbirth research and prevention to the list of activities approved for federal maternal health dollars.

Though the bill doesn’t ask for any additional funding, it has not yet passed.

In addition, the SHINE for Autumn Act breezed through the House of Representatives in December 2021. After Haine Vijayvergiya, the New Jersey mother who has championed it, secured bipartisan support from U.S. Sens. Cory Booker, D-N.J., and Marco Rubio, R-Fla., she thought the most comprehensive stillbirth legislation in U.S. history would finally become law.

Neither bill has sparked controversy.

But months after press releases announced the SHINE legislation and referred to the U.S. stillbirth rate as “unacceptable,” lawmakers and the families they represent are running out of time as this session of Congress prepares to adjourn.

“From the day that the bill was introduced into the Senate,” Haine Vijayvergiya said, “approximately 13,000 babies have been born still.”

Last month, on a brilliant fall day much like the one when Reese was stillborn, Amanda Duffy bent down to kiss her son Rogen’s head before they walked on stage.

She wore a soft blue T-shirt tucked into her jeans that read “Be courageous.” The message was as much for her as it was for the crowd on the National Mall in Washington, D.C., many of them like her, mothers who didn’t know stillbirth happened until it happened to them. Since Reese’s death, she has coached doctors and nurses on improving care for patients who have suffered pregnancy loss. Among her many suggestions, she tells them their first words when a concerned patient reaches out should be “I’m so glad you called.”

A few hundred people had gathered for The Big PUSH to End Preventable Stillbirth, billed as the first-ever march on the issue. As part of an art installation, Amanda wrote a note to Reese: “You’re pretty magical & for that I’m grateful. You’re a change maker and you are so very loved. Love, Mama.” Before she slipped the folded paper into a sea of more than 20,000 baby hats, Rogen added his own message: “Hope you are having a good time – Rogen.”

Reese would have turned 8 this month.

Before Amanda spoke, she took a deep breath and silenced her nerves. She walked onto the stage and called on Congress to pass the stillbirth legislation before it. She didn’t ask. She demanded.

“It’s time to empower pregnant people and their care providers with information that leads to prevention,” she insisted.

With the afternoon sun bearing down, Amanda and Rogen disappeared into the crowd of families marching toward the Capitol. Many carried signs. Some pushed empty strollers. Amanda was still wearing the orange-scented oil she had rubbed on her wrists that morning.

This story was originally published on ProPublica. ProPublica is a nonprofit newsroom that investigates abuses of power. Sign up to receive their biggest stories as soon as they’re published

The day before doctors had scheduled Amanda Duffy to give birth, the baby jolted her awake with a kick.

A few hours later, on that bright Sunday in November 2014, she leaned back on a park bench to watch her 19-month-old son Rogen enjoy his final day of being an only child. In that moment of calm, she realized that the kick that morning was the last time she had felt the baby move.

She told herself not to worry. She had heard that babies can slow down toward the end of a pregnancy and remembered reading that sugary snacks and cold fluids can stimulate a baby’s movement. When she got back to the family’s home in suburban Minneapolis, she drank a large glass of ice water and grabbed a few Tootsie Rolls off the kitchen counter.

But something about seeing her husband, Chris, lace up his shoes to leave for a run prompted her to blurt out, “I haven’t felt the baby kick.”

Chris called Amanda’s doctor, and they headed to the hospital to be checked. Once there, a nurse maneuvered a fetal monitor around Amanda’s belly. When she had trouble locating a heartbeat, she remarked that the baby must be tucked in tight. The doctor walked into the room, turned the screen away from Amanda and Chris and began searching. She was sorry, Amanda remembers her telling them, but she could not find a heartbeat.

Amanda let out a guttural scream. She said the doctor quickly performed an internal exam, which detected faint heart activity, then rushed Amanda into an emergency cesarean section.

She woke up to the sound of doctors talking to Chris. She listened but couldn’t bring herself to face the news. Her doctor told her she needed to open her eyes.

Amanda, then 31, couldn’t fathom that her daughter had died. She said her doctors had never discussed stillbirth with her. It was not mentioned in any of the pregnancy materials she had read. She didn’t even know that stillbirth was a possibility.

But every year more than 20,000 pregnancies in the United States end in stillbirth, the death of an expected child at 20 weeks or more. That number has exceeded infant mortality every year for the last 10 years. It’s 15 times the number of babies who, according to the Centers for Disease Control and Prevention, died of Sudden Infant Death Syndrome, or SIDS, in 2020.

The deaths are not inevitable. One study found that nearly one in four U.S. stillbirths may be preventable. For pregnancies that last 37 weeks or more, that research shows, the figure jumps to nearly half. Thousands more babies could potentially be delivered safely every year.

But federal agencies have not prioritized critical stillbirth-focused studies that could lead to fewer deaths. Nearly two decades ago, both the CDC and the National Institutes of Health launched key stillbirth tracking and research studies, but the agencies ended those projects within about a decade. The CDC never analyzed some of the data that was collected.

Unlike with SIDS, a leading cause of infant death, federal officials have failed to launch a national campaign to reduce the risk of stillbirth or adequately raise awareness about it. Placental exams and autopsies, which can sometimes explain why stillbirths happened, are underutilized, in part because parents are not counseled on their benefits.

Federal agencies, state health departments, hospitals and doctors have also done a poor job of educating expectant parents about stillbirth or diligently counseling on fetal movement, despite research showing that patients who have had a stillbirth are more likely to have experienced abnormal fetal movements, including decreased activity. Neither the CDC nor the NIH have consistently promoted guidance telling those who are pregnant to be aware of their babies’ movement in the womb as a way to possibly reduce their risk of stillbirth.

The American College of Obstetricians and Gynecologists, the nation’s leading obstetrics organization, has been slow to update its own guidance to doctors on managing a stillbirth. In 2009, ACOG issued a set of guidelines that included a single paragraph regarding fetal movement. Those guidelines weren’t significantly updated for another 11 years.

Perhaps it’s no surprise that federal goals for reducing stillbirths keep moving in the wrong direction. In 2005, the U.S. stillbirth rate was 6.2 per 1,000 live births. The U.S. Department of Health and Human Services, in an effort to eliminate health disparities and establish a target that was “better than the best racial or ethnic group rate,” set a goal of reducing it to 4.1 for 2010. When that wasn’t met, federal officials changed their approach and set what they called more “science-based” and “realistic” goals, raising the 2020 target to 5.6. The U.S. still fell short. The 2030 goal of 5.7 was so attainable that it was met before the decade started. The 2020 rate, the most current according to the CDC, is 5.74.

By comparison, other wealthy countries have implemented national action plans to prevent stillbirth through awareness, research and care. Among other approaches, those countries have focused on increasing education around stillbirth and the importance of a baby’s movements, reducing rates of smoking and identifying fetuses that grow too slowly in the womb.

The efforts have paid off. The Netherlands, for instance, has reduced its rate of stillbirths at 28 weeks or later by more than half, from 5.2 in 2000 to 2.3 in 2019, according to a study published last year in The Lancet.

Dr. Bob Silver, chair of the obstetrics/gynecology department at University of Utah Health and a leading stillbirth expert, coauthored the study that estimated nearly one in four stillbirths are potentially preventable, a figure he referred to as conservative. He called on federal agencies to declare stillbirth reduction a priority the same way they have done for premature birth and maternal mortality.

“I’d like to see us say we really want to reduce the rate of stillbirth and raise awareness and try to do all of the reasonable things that may contribute to reducing stillbirths that other countries have done,” Silver said.

The lack of comprehensive attention and action has contributed to a stillbirth crisis, shrouded in an acceptance that some babies just die. Compounding the tragedy is a stigma and guilt so crushing that the first words some mothers utter when their lifeless babies are placed in their arms are “I’m sorry.”

In the hospital room, Amanda Duffy finally opened her eyes. She named her daughter Reese Christine, the name she had picked out for her before they found out she had died. She was 8 pounds, 3 ounces and 20 1/2 inches long and was born with her umbilical cord wrapped tightly around her neck twice. The baby was still warm when the nurse placed her in Amanda’s arms. Amanda was struck by how lovely her daughter was. Rosy skin. Chris’ red hair. Rogen’s chubby cheeks.

As Amanda held Reese, Chris hunched over the toilet, vomiting. Later that night, as he lay next to Amanda on the hospital bed, he held his daughter. He hadn’t initially wanted to see her. He worried she would be disfigured or, worse, that she would be beautiful and he would fall apart when he couldn’t take her home.

The nurses taught Amanda and Chris how to grieve and love simultaneously. One nurse told Amanda how cute Reese was and asked if she could hold her. Another placed ice packs in Reese’s swaddle to preserve her body so Amanda could keep holding her. Amanda asked the nurses to tuck cotton balls soaked in an orange scent into Reese’s blanket so the smell would trigger the memory of her daughter. And just as if Reese had been born alive, the nurses took pictures and made prints of her hands and feet.

“I felt such a deep, abiding love for her,” Amanda said. “And I was so proud to be her mom.”

On the way home from the hospital, Amanda broke down at the sight of Reese’s empty car seat. The next few weeks passed in a sleep-filled fog punctuated by intense periods of crying. The smell of oranges wrecked her. Her breast milk coming in was agonizing, physically and emotionally. She wore sports bras stuffed with ice packs to ease the pain and dry up her milk supply. While Rogen was at day care, she sobbed in his bed.

In the months that followed, Amanda and Chris searched for answers and wondered whether their medical team had missed warning signs. Late at night, Amanda turned to Google to find information about stillbirths. She mailed her medical records to a doctor who studies stillbirths, who she said told her that Reese’s death could have been prevented. They briefly discussed legal action against her doctors, but she said a lawyer told her it would be difficult to sue.

Amanda and Chris pinpointed her last two months of pregnancy as the time things started to go wrong. She had been diagnosed with polyhydramnios, meaning there was excess amniotic fluid in the womb. Her doctor had scheduled additional weekly testing.

One of those ultrasounds revealed problems with the blood flow in the umbilical cord. Reese’s cord also appeared to be wrapped around her neck, Amanda said later, but was told that was less of a concern, since it occurs in about 20% of normal deliveries. At another appointment, Amanda’s medical records show, Reese failed the portion of a test that measures fetal breathing movements.

At 37 weeks, Amanda told one of the midwives the baby’s movements felt different, but, she said, the midwife told her that it was common for movements to feel weaker with polyhydramnios. At that point, Amanda felt her baby was safer outside than inside and, her medical records show, she asked to schedule a C-section.

Despite voicing concerns about a change in the baby’s movement and asking to deliver earlier, Amanda said she and her husband were told by her midwife she couldn’t deliver for another two weeks. The doctor “continues to advise 39wks,” her medical records show. Waiting until 39 weeks is usually based on a guideline that deliveries should not happen before then unless a medical condition specifically warrants it, because early delivery can lead to complications.

Amanda would have to wait until 39 weeks and one day because, she said, her doctors didn’t typically do elective deliveries on weekends. Amanda was disappointed but said she trusted her team of doctors and midwives.

“I’m not a pushy person,” she said. “My husband is not a pushy person. That was out of our comfort zone to be, like, ‘What are we waiting for?’ But really what we wanted them to say was ‘We should deliver you.’”

Amanda’s final appointment was a maximum 30-minute-long ultrasound that combined a number of assessments to check amniotic fluid, fetal muscle tone, breathing and body movement. After 29 minutes of inactivity, Amanda said, the baby moved a hand. In the parking lot, Amanda called her mother, crying in relief. Four more days, she told her.

Less than 24 hours before the scheduled C-section, Reese was stillborn.

Four months after her death, Amanda, then a career advisor at the University of Minnesota, and Chris, a public relations specialist, wrote a letter to the University of Minnesota Medical Center, where Amanda had given birth to her dead daughter. They said they had “no ill feelings” toward anyone, but “it pains us to know that her death could’ve been prevented if we would have been sent to labor and delivery following that ultrasound.”

They noted that though they were told that Reese had passed the final ultrasound where she took 29 minutes to move, they had since come to believe that she had failed because, according to national standards, at least three movements were required. They also blamed a strict adherence to the 39-week guideline. And they encouraged the hospital staff to read more on umbilical cord accidents and acute polyhydramnios, which they later learned carries an increased stillbirth risk.

The positive feelings they had from speaking up were replaced by dismay when the hospital responded with a three-paragraph letter, signed by seven doctors and eight nurses. They said they had reexamined each medical decision in her case and concluded they had made “the best decisions medically possible.” They expressed their sympathy and said it was “so very heartwarming that you are trying to turn your tragic loss into something that will benefit others.”

Amanda felt dismissed by the medical team all over again. She didn’t expect them to admit fault, but she said she hoped that they would at least learn from Reese’s death to do things differently in the future. She was angry, and hurt, and knew that she would need to find a new doctor.

A spokesperson for the University of Minnesota Medical School told ProPublica she could not comment on individual patient cases and did not respond to questions about general protocols. “We share the physicians’ condolences,” she wrote, adding that the doctors and the university “are dedicated to delivering high quality, accessible and inclusive health care.”

For many expectant parents, it’s hard to muster the courage to call a doctor about something they’re not even sure is a problem.

“Moms self-censor a lot. No one wants to be that mom that all the doctors are rolling their eyes at because she’s freaking out over nothing,” said Samantha Banerjee, executive director of PUSH for Empowered Pregnancy, a nonprofit based in New York state that works to prevent stillbirths. Banerjee’s daughter, Alana, was stillborn two days before her due date.

In addition to raising awareness that stillbirths can happen even in low-risk pregnancies, PUSH teaches pregnant people how to advocate for themselves. The volunteers advise them to put their requests in writing and not to spend time drinking juice or lying on their side if they are worried about their baby’s lack of movement. In the majority of cases, a call or visit to the hospital reassures them.

But, the group tells parents, if their baby is in distress, calling their doctor can save their life.

Debbie Haine Vijayvergiya is fighting another narrative: that stillbirths are a rare fluke that “just happen.” When her daughter Autumn Joy was born without a heartbeat in 2011, Haine Vijayvergiya said, her doctor told her having a stillborn baby was as rare as being struck by lightning.

She believed him, but then she looked up the odds of a lightning strike and found they are less than one in a million – and most people survive. In 2020, according to the CDC, there was one stillbirth for about every 175 births.

“I’ve spoken to more women than I can count that said, ‘I raised the red flag, and I was sent home. I was told to eat a piece of cake and have some orange juice and lay on my left side,’ only to wake up the next day and their baby is not alive,” said Haine Vijayvergiya, a New Jersey mother and maternal health advocate.

She has fought for more than a decade to pass stillbirth legislation as her daughter’s legacy. Her current undertaking is her most ambitious. The federal Stillbirth Health Improvement and Education (SHINE) for Autumn Act, named after her daughter, would authorize $9 million a year for five years in federal funding for research, better data collection and training for fetal autopsies. But it is currently sitting in the Senate Committee on Health, Education, Labor, and Pensions.

Not all stillbirths are preventable, and medical experts agree more research is needed to determine who is most at risk and which babies can potentially be saved. Complicating matters is the wide range of risk factors, including hypertension and diabetes, smoking, obesity, being pregnant with multiples, being 35 or older and having had a previous stillbirth.

ProPublica reported this summer on how the U.S. botched the rollout of COVID-19 vaccines for pregnant people, who faced an increased risk for stillbirth if they were unvaccinated and contracted the virus, especially during the Delta wave.

Doctors often work to balance the risk of stillbirth with other dangers, particularly an increased chance of being admitted to neonatal intensive care units or even death of the baby if it is born too early. ACOG and the Society for Maternal-Fetal Medicine have issued guidance to try to slow a rise in elective deliveries before 39 weeks and the potential harm that can result. The Joint Commission, a national accrediting organization, began evaluating hospitals in 2010 based on that standard.

A 2019 study found that the risks of stillbirth slightly increased after the rule went into effect, but fewer infants died after birth. Other studies have not found an effect on stillbirths.

Last year, the obstetric groups updated their guidance to allow doctors to consider an early delivery if a woman has anxiety and a history of stillbirth, writing that a previous stillbirth “may” warrant an early delivery for patients who understand and accept the risks. For those who have previously had a stillbirth, one modeling analysis found that 38 weeks is the optimal timing of delivery, considering the increased risk of another stillbirth.

“A woman who has had a previous stillbirth at 37 weeks – one could argue that it’s cruel and unusual punishment to make her go to 39 weeks with her next pregnancy, although that is the current recommendation,” said Dr. Neil Mandsager, a maternal-fetal medicine specialist in Iowa and a medical advisor to a stillbirth prevention nonprofit.

At or after 40 weeks, the risk of stillbirth increases, especially for women 35 or older. Their risk, research shows, is doubled from 39 weeks to 40 and is more than six times as high at 42 weeks. In 2019 and 2020, a combined 1,200 stillbirths occurred between 40 and 42 weeks, according to the most recent CDC data.

Deciding when a patient should deliver entails weighing the risks to the mother and the infant against a possible stillbirth as the pregnancy continues, said Dr. Mark Turrentine, chair of ACOG’s Clinical Consensus Committee-Obstetrics, which helped create the guidance on managing a stillbirth. He said ACOG has addressed stillbirth in other documents and extensively in its 2021 guidance on fetal surveillance and testing, which is done to reduce the risk of stillbirth.

ACOG said it routinely reviewed its guidance on management of stillbirth but was unable to make significant updates “due to the lack of new, evidence-based research.” While prevention is a great concern to ACOG, Turrentine said it’s difficult to know how many stillbirths are preventable.

He said it’s standard practice for doctors to ask about fetal movement, and ACOG updated its guidance after new research became available. Doctors also need to include patients in decision-making and tailor care to them, he said, whether that›s using aspirin in patients at high risk of preeclampsia – a serious high blood pressure condition during pregnancy – or ordering additional tests.

After Reese’s death, Amanda and Chris Duffy wanted to get pregnant again. They sought out an obstetrician-gynecologist who would educate and listen to them. They set up several consultations until they found Dr. Emily Hawes-Van Pelt, who was recommended by another family who had had a stillbirth.

Hawes-Van Pelt cried with Amanda and Chris at their first meeting.

“I told her I was scared to be involved,” Hawes-Van Pelt said. “It’s such a tricky subsequent pregnancy because there’s so much worry and anxiety about the horrible, awful thing happening again.”

Amanda’s fear of delivering another dead baby led to an all-consuming anxiety, but Hawes-Van Pelt supported her when she asked for additional monitoring, testing and an early delivery.

When Hawes-Van Pelt switched practices midway through Amanda’s pregnancy, Amanda followed her. But the new hospital pushed back on the early delivery.

“We intervene early for poorly controlled diabetes,” Hawes-Van Pelt said. “We intervene early for all sorts of medical issues. Anxiety and prior stillbirth are two medical issues that we can intervene earlier for.”

Hawes-Van Pelt said she learned a lot from caring for Amanda, who made her reevaluate some of her own assumptions around stillbirths.

“I had a horrible fear of scaring women unnecessarily, and then realized that I was just not preparing women or educating them because of my own fears around it,” she said. “If you can carry a human being in your body and birth that human being and take care of it, you can hear those words.”

The hospital eventually agreed to let Hawes-Van Pelt schedule Amanda for a 37-week C-section. But after Amanda was again diagnosed with polyhydramnios, she went in for a C-section even earlier. She gave birth in 2015 to a healthy boy she and Chris named Rhett. Two years later, Amanda and Hawes-Van Pelt followed the same pregnancy plan, and she delivered a girl named Maeda Reese. Amanda chose the name because, when said quickly, it sounds like “made of Reese.”

Federal agencies, national organizations and state and city officials have mobilized in recent years to address maternal mortality, when mothers die during pregnancy, at delivery or soon after childbirth. They have focused on improving data collection, passing legislation and creating awareness campaigns that encourage medical professionals and others to listen when women say something doesn›t feel right.

In 2017, ProPublica and NPR documented the U.S. maternal mortality crisis, including alarming racial disparities.

According to CDC data, Black women face nearly three times the risk of maternal mortality. They also are more than twice – and in some states close to three times – as likely to have a stillbirth than white women, meaning not only are Black mothers dying at a disproportionate rate, so are their babies.

Janet Petersen, a state senator from Iowa, said it gives her hope to see how the country has turned its attention to maternal mortality and disparities in health care. She simply cannot understand why stillbirth isn’t being met with the same urgency.

In 2020, the CDC reported 861 mothers died either while pregnant or within six weeks of giving birth. That same year, 20,854 babies were stillborn.

Stillbirth, Petersen said, is a missing piece of the puzzle. Research shows the likelihood of severe maternal complications was more than four times higher for pregnancies that ended in stillbirths, and mothers who died within six weeks of delivery were more likely to have had a stillbirth.

“We see it over and over again that stillbirth is one of the maternal health care issues that continuously gets ignored,” said Petersen, a Democrat.

Petersen was a young legislator in 2003 when her daughter Grace was born still. Devastated, she thought of her grandmother, who lost a baby to stillbirth in 1920, just a few weeks before women got the right to vote.

“I was laying in my hospital bed thinking, ‘How could this still be happening in our country?’” Petersen recalled. “And it seemed, from the medical perspective, that, well, stillbirth happens. We can’t do anything to prevent them.”

Over the next few months, Petersen heard from other mothers who had lost their babies and wanted to spark change. As an elected official, Petersen was in a position to do that. In 2004, she introduced legislation that required the Iowa Department of Public Health to create a stillbirths work group, later securing funding through the CDC to create a stillbirth registry.

But the CDC didn’t renew the funding and never analyzed the data from the registry, though a CDC spokesperson said the Iowa Department of Public Health examined the data. Officials from the department did not respond to requests for comment.

Petersen and her fellow mothers pivoted. After hearing how researchers in Norway were able to increase awareness around fetal movement, they co-founded a nonprofit aimed at doing the same in the U.S.

The group, Healthy Birth Day, created colorful “Count the Kicks” pamphlets – and later an app – teaching pregnant people how to track a baby’s movements and establish what is normal for them. Monitoring a baby’s movements is the earliest and sometimes only indication that something may be wrong, said Emily Price, chief executive officer of Healthy Birth Day. One of the organization’s main messages is for pregnant people to speak up and clinicians to listen.

“Unfortunately, there are still doctors who brush women off or send them home when they come in with a complaint of a change in their baby’s movements,” Price said. “And babies are dying because of it.”

One Indiana county, which recorded 65 stillbirths from 2017 through 2019, reported that 74% had either some chance or a good chance of prevention, according to St. Joseph County Department of Health’s Fetal Infant Mortality Review program. For mothers who experienced decreased fetal movement in the few hours or days before the stillbirth, that estimate jumped to 90%.

Although there is not a scientific consensus that kick counting can prevent stillbirths, national groups, including ACOG, recommend that medical professionals encourage their patients to be aware of fetal movement patterns. ACOG also advises medical professionals to be attentive to a mother’s concerns about reduced movement and address them “in a systematic way.”

One complaint the CDC hears too often, an agency spokesperson said, is that pregnant people and those who gave birth recently find that their concerns are dismissed or ignored. “Listening and taking the concerns of pregnant and recently pregnant people seriously,” she said, “is a simple, yet powerful action to prevent serious health complications and even death.”

The CDC, she said, is “very interested” in expanding its research on stillbirth, which is “a crucial part of the development of any awareness or prevention campaigns.” In addition to working to improve its stillbirth data quality, the agency has funded some pilot programs at the city and state level to better track stillbirths, survey people who have had a stillbirth and research risk factors and causes. The Iowa registry, she said, led the CDC to fund different research projects in Arkansas and Massachusetts, which are ongoing.

In 2009, the CDC acknowledged that fetal mortality remained a “major, but often overlooked, public health problem.” Officials wrote that much of the public health concern had been focused on infant mortality “in part due to lesser awareness of the magnitude of fetal mortality, its causes, and prevention strategies.”

But little has changed over the past 13 years. Echoing its earlier message, the CDC this year declared that “much work remains” and that “stillbirth is not often viewed as a public health issue, so increased awareness is key.”

A spokesperson for the Eunice Kennedy Shriver National Institute of Child Health and Human Development, which is part of the NIH, said the agency has continually funded research on stillbirths, even after one of its key studies ended. The agency, she said, also supports research on conditions that increase the risk of stillbirth.

As a scientific research institute, it does not issue clinical guidelines or recommendations, she said, though it did launch the Safe to Sleep campaign in 1994, two decades after Congress put it in charge of SIDS federal research efforts. That campaign, which educates parents and caregivers on ways to reduce the risk of SIDS, highlights recommendations issued by the American Academy of Pediatrics. She said the agency will continue to collaborate with organizations that raise awareness about stillbirth and other pregnancy complications “to amplify their messages and efforts.”

“NICHD continues to support research on the prevention, causes, frequency, and risk factors of stillbirth,” the spokesperson said in an email. “Our commitment to enhancing understanding of stillbirth and improving outcomes focuses on building the scientific knowledge base.”

But getting laws on the books that could raise awareness around stillbirth – even when they don’t require additional funding – has been a struggle. Petersen and Price are pushing Congress to pass legislation that would add stillbirth research and prevention to the list of activities approved for federal maternal health dollars.

Though the bill doesn’t ask for any additional funding, it has not yet passed.

In addition, the SHINE for Autumn Act breezed through the House of Representatives in December 2021. After Haine Vijayvergiya, the New Jersey mother who has championed it, secured bipartisan support from U.S. Sens. Cory Booker, D-N.J., and Marco Rubio, R-Fla., she thought the most comprehensive stillbirth legislation in U.S. history would finally become law.

Neither bill has sparked controversy.

But months after press releases announced the SHINE legislation and referred to the U.S. stillbirth rate as “unacceptable,” lawmakers and the families they represent are running out of time as this session of Congress prepares to adjourn.

“From the day that the bill was introduced into the Senate,” Haine Vijayvergiya said, “approximately 13,000 babies have been born still.”

Last month, on a brilliant fall day much like the one when Reese was stillborn, Amanda Duffy bent down to kiss her son Rogen’s head before they walked on stage.

She wore a soft blue T-shirt tucked into her jeans that read “Be courageous.” The message was as much for her as it was for the crowd on the National Mall in Washington, D.C., many of them like her, mothers who didn’t know stillbirth happened until it happened to them. Since Reese’s death, she has coached doctors and nurses on improving care for patients who have suffered pregnancy loss. Among her many suggestions, she tells them their first words when a concerned patient reaches out should be “I’m so glad you called.”

A few hundred people had gathered for The Big PUSH to End Preventable Stillbirth, billed as the first-ever march on the issue. As part of an art installation, Amanda wrote a note to Reese: “You’re pretty magical & for that I’m grateful. You’re a change maker and you are so very loved. Love, Mama.” Before she slipped the folded paper into a sea of more than 20,000 baby hats, Rogen added his own message: “Hope you are having a good time – Rogen.”

Reese would have turned 8 this month.

Before Amanda spoke, she took a deep breath and silenced her nerves. She walked onto the stage and called on Congress to pass the stillbirth legislation before it. She didn’t ask. She demanded.

“It’s time to empower pregnant people and their care providers with information that leads to prevention,” she insisted.

With the afternoon sun bearing down, Amanda and Rogen disappeared into the crowd of families marching toward the Capitol. Many carried signs. Some pushed empty strollers. Amanda was still wearing the orange-scented oil she had rubbed on her wrists that morning.

This story was originally published on ProPublica. ProPublica is a nonprofit newsroom that investigates abuses of power. Sign up to receive their biggest stories as soon as they’re published

Farshad Fani Marvasti, MD, MPH, is part of a growing movement to fundamentally shift medical education to include training on how to cook healthy meals.

The way he sees it, the stakes couldn’t be higher. He believes doctors need to see food as medicine to be able to stem the tide of chronic disease.

About 6 in 10 adults in the United States live with chronic diseases, according to the Centers for Disease Control and Prevention, costing $4.1 trillion in annual health care costs. Adult obesity rates are rising, as are obesity-related conditions such as heart disease, stroke, type 2 diabetes, and certain types of cancer.

To turn the tide, Dr. Marvasti created a culinary medicine program in 2020 in collaboration with the University of Arizona Cooperative Extension and local chefs.

Dr. Marvasti, who is board certified in family medicine, graduated from the University of Arizona, Phoenix, where he serves as the director of the medical school’s Culinary Medicine Program.

The program offers an elective course for third- and fourth-year medical students, which introduces the evidence-based field of culinary medicine. Dr Marvasti’s goal is for the course to teach students how to use this science and the joy of cooking to improve long-term health outcomes for their patients.

As part of Dr. Marvasti’s program, students learn cooking fundamentals through chef demonstrations and hands-on practice – to teach students how food can be used to prevent and treat many chronic diseases.

One of the dishes students learn to make includes a quinoa salad made with cucumber, onion, bell peppers, corn, cherry tomatoes, beans, garlic, olive oil, and lemon juice. Another recipe includes a healthier take on dessert: Dark chocolate mousse made with three large, ripe avocados, dark chocolate powder, three tablespoons of agave or maple, coconut cream, nondairy milk, salt, and vanilla. Dr. Marvasti and his team are set to build out the existing program to develop additional resources for medically underserved and rural communities in Arizona, according to a statement from the university. These plans will be funded by a $750,000 grant from Novo Nordisk.

“We’re going to develop an open education curriculum to share, so it’s open access to everyone,” said Dr. Marvasti, who is also director of Public Health, Prevention and Health Promotion and an associate professor at the university. “It can be adaptable at the undergraduate, graduate, and postgraduate level.”

Dr. Marvasti and his colleagues at the University of Arizona aren’t alone. In fact, culinary medicine programs are sprouting some serious legs.
 

Culinary medicine programs catch on

Jaclyn Albin, MD, CCMS, an associate professor in the departments of internal medicine and pediatrics at UT Southwestern Medical Center, Dallas, conducted a scoping review of the literature on culinary medicine programs for medical students.* Her purpose was to learn how the programs were structured and how they assessed student knowledge and attitudes regarding nutrition counseling for patients.

Dr. Albin and her colleagues performed an initial literature search between June 1 and Aug. 1, 2020, of papers published between Jan. 1, 2012, and Aug. 1, 2020 – excluding some newer programs such as the one at the University of Arizona. The results of their research were published in Academic Medicine.

Ultimately, the authors identified and examined 34 programs offering medical student–focused culinary medicine courses.

Program instructors typically included a team of physicians, dietitians, chefs, and other professionals, the study found.

Most program participants exclusively taught medical students, though the training years of participants varied among programs, and they included first-, second-, third-, and fourth-year students. Some programs allowed students from outside their respective medical school to participate in the trainings.

As for the formats of the program, most included cohorts of 10-20 students attending multiple 2- to 3-hour sessions over the course of several months. The University of Alabama at Birmingham offers one of the longest courses, which spans 4-5 months, according to the paper. In contrast, the University of Rochester (N.Y.) program offers only a 1-day lab divided into four sessions, with each session lasting about 2 hours.

The culinary medicine programs’ course sessions tended to include a 10- to 30-minute didactic session involving videos, research articles, culinary theories, and other lectures, a 60- to 90-minute hands-on cooking session, and a 30-minute discussion around nutrition, culture, and patient care.

Most programs used pre- and post-program surveys to evaluate outcomes, though results varied between programs, according to the study. While each program evaluation had different metrics, the surveys generally revealed students felt more confident discussing dietary interventions with patients and in their own cooking skills following completion.
 

Course correction

Most of those programs are unfunded or minimally funded, Dr. Albin said.

Her own program, which is immensely popular with medical students, is one she teaches on a volunteer basis.

“I do this for free, in the evenings, because I believe in it,” she said.

Medical school education real estate is limited, so convincing medical schools to add something to the curriculum is difficult, Dr. Albin noted.

But it’s worth it, she said, because nutrition is the underpinning of so many diseases.

“Food is the top risk factor for early death in the U.S.,” Dr. Albin said. “I like to say that five times in a row. People have not digested it.”

During her culinary medicine courses, she also asks her medical students: “Who is comfortable in the kitchen?” Some sheepishly raise their hands, she said. Some don’t. Many don’t know anything about cooking.

Then she teaches students about healthy food and how to make it. As part of her program, medical students are given a pantry starter kit with olive oil and a variety of spices to take home and use.

Some recipes Dr. Albin teaches includes mango chili shrimp salad with lime vinaigrette, eggplant sliders, yellow vegetable curry, and strawberry banana chia pudding.

“If you figure out how to do it for your own busy, everyday life, you are now empowered to tell someone else about it,” she said.
 

A dietitian’s involvement

Milette Siler, RD, LD, CCMS, works with Dr. Albin to educate medical students and patients about food as medicine. A significant chunk of her job involves teaching future doctors what dietitians do.

When the class starts, many students don’t know two of the five basic things dietitians do, Ms. Siler said. By the end of the class, all students know what a dietitian does.

That’s important as students go on to become doctors.

“For us to remove barriers to care, we have to acknowledge most patients’ entry into health care is their physician,” she said. “The dietitian is often a referral. Doctors need to know enough to do no harm.”

Clinicians are often siloed, she said, and the key to better serving patients is partnership, transparency, and relationships. “I think everybody is at a point where everyone is saying what we’re doing isn’t working,” she said. “The American public deserves better, physicians deserve better, and clinicians deserve better.”
 

Popular with students

While the old guard has been slow to embrace the shift, her students have helped drive the growth of the culinary medicine field, Dr. Albin said.

“They are not settling for the inadequacy that somehow the rest of us did,” she continued. “I’m so hopeful for the future of the health system. We have a generation of people who will not stand for neglecting the most vital elements.”

Courtesy Farshad Fani Marvasti, MD, MPH

Lyndon Bui, a second-year medical student at the University of Arizona, Phoenix, is an example of one of these people.

As a member of a culinary medicine interest group on campus, he said, he has learned a lot about the importance of diet for long-term health. This has given him confidence to talk about food and nutrition.

His group does cooking demos at the Phoenix Farmers Market using food from various local vendors. They usually make a salad from local greens and cook seasonal veggies in a stir fry, he said.

They’ve previously made salad with microgreens – young seedlings of edible vegetables and herbs – and pomegranate seeds with a honey mustard vinaigrette, eggplant or cucumber, and hummus on pita bread, as well as almond butter and honey sandwiches, according to the university.

The group also talks with people in the community, answers questions, and learns about community needs.

Mr. Bui’s participation in this group has helped him cultivate a passion for community outreach that he wants to incorporate into his career.

“I feel like I have the knowledge to provide better advice to patients,” he said. “Knowing all these things about food, I feel more comfortable talking about it and more inclined to refer to a dietitian when maybe I wouldn’t have before.”
 

Family physician applauds culinary medicine programs

When Angie Neison, MD, CCMS, went to medical school, she was surprised there wasn’t more education on nutrition.

In fact, on average, physicians receive less than 20 hours of nutrition education, according to the University of Arizona.

Now 15 years into her career as a family physician, Dr. Neison says nutrition is a huge part of her practice. She spends time working to bust myths about nutrition for her patients – including that healthy food is boring and bland, that making it is time consuming, and that healthy food is expensive. She also spends time teaching aspects of culinary medicine to her colleagues – many of whom are well into their careers – so they can better serve their patients.

It’s worth it to spend time learning about nutrition, she said, whether that’s as a medical student in a culinary medicine program or a practicing physician taking additional courses.

Nutrition education in medical school hasn’t been a priority, she said, maybe because there is so much to learn, or maybe because there is no money to be made in prevention.

“If doctors learn it, they are able to better guide patients,” she said.

Correction, 11/29/22: An earlier version of this article misstated Dr. Albin's institution.
 

Farshad Fani Marvasti, MD, MPH, is part of a growing movement to fundamentally shift medical education to include training on how to cook healthy meals.

The way he sees it, the stakes couldn’t be higher. He believes doctors need to see food as medicine to be able to stem the tide of chronic disease.

About 6 in 10 adults in the United States live with chronic diseases, according to the Centers for Disease Control and Prevention, costing $4.1 trillion in annual health care costs. Adult obesity rates are rising, as are obesity-related conditions such as heart disease, stroke, type 2 diabetes, and certain types of cancer.

To turn the tide, Dr. Marvasti created a culinary medicine program in 2020 in collaboration with the University of Arizona Cooperative Extension and local chefs.

Dr. Marvasti, who is board certified in family medicine, graduated from the University of Arizona, Phoenix, where he serves as the director of the medical school’s Culinary Medicine Program.

The program offers an elective course for third- and fourth-year medical students, which introduces the evidence-based field of culinary medicine. Dr Marvasti’s goal is for the course to teach students how to use this science and the joy of cooking to improve long-term health outcomes for their patients.

As part of Dr. Marvasti’s program, students learn cooking fundamentals through chef demonstrations and hands-on practice – to teach students how food can be used to prevent and treat many chronic diseases.

One of the dishes students learn to make includes a quinoa salad made with cucumber, onion, bell peppers, corn, cherry tomatoes, beans, garlic, olive oil, and lemon juice. Another recipe includes a healthier take on dessert: Dark chocolate mousse made with three large, ripe avocados, dark chocolate powder, three tablespoons of agave or maple, coconut cream, nondairy milk, salt, and vanilla. Dr. Marvasti and his team are set to build out the existing program to develop additional resources for medically underserved and rural communities in Arizona, according to a statement from the university. These plans will be funded by a $750,000 grant from Novo Nordisk.

“We’re going to develop an open education curriculum to share, so it’s open access to everyone,” said Dr. Marvasti, who is also director of Public Health, Prevention and Health Promotion and an associate professor at the university. “It can be adaptable at the undergraduate, graduate, and postgraduate level.”

Dr. Marvasti and his colleagues at the University of Arizona aren’t alone. In fact, culinary medicine programs are sprouting some serious legs.
 

Culinary medicine programs catch on

Jaclyn Albin, MD, CCMS, an associate professor in the departments of internal medicine and pediatrics at UT Southwestern Medical Center, Dallas, conducted a scoping review of the literature on culinary medicine programs for medical students.* Her purpose was to learn how the programs were structured and how they assessed student knowledge and attitudes regarding nutrition counseling for patients.

Dr. Albin and her colleagues performed an initial literature search between June 1 and Aug. 1, 2020, of papers published between Jan. 1, 2012, and Aug. 1, 2020 – excluding some newer programs such as the one at the University of Arizona. The results of their research were published in Academic Medicine.

Ultimately, the authors identified and examined 34 programs offering medical student–focused culinary medicine courses.

Program instructors typically included a team of physicians, dietitians, chefs, and other professionals, the study found.

Most program participants exclusively taught medical students, though the training years of participants varied among programs, and they included first-, second-, third-, and fourth-year students. Some programs allowed students from outside their respective medical school to participate in the trainings.

As for the formats of the program, most included cohorts of 10-20 students attending multiple 2- to 3-hour sessions over the course of several months. The University of Alabama at Birmingham offers one of the longest courses, which spans 4-5 months, according to the paper. In contrast, the University of Rochester (N.Y.) program offers only a 1-day lab divided into four sessions, with each session lasting about 2 hours.

The culinary medicine programs’ course sessions tended to include a 10- to 30-minute didactic session involving videos, research articles, culinary theories, and other lectures, a 60- to 90-minute hands-on cooking session, and a 30-minute discussion around nutrition, culture, and patient care.

Most programs used pre- and post-program surveys to evaluate outcomes, though results varied between programs, according to the study. While each program evaluation had different metrics, the surveys generally revealed students felt more confident discussing dietary interventions with patients and in their own cooking skills following completion.
 

Course correction

Most of those programs are unfunded or minimally funded, Dr. Albin said.

Her own program, which is immensely popular with medical students, is one she teaches on a volunteer basis.

“I do this for free, in the evenings, because I believe in it,” she said.

Medical school education real estate is limited, so convincing medical schools to add something to the curriculum is difficult, Dr. Albin noted.

But it’s worth it, she said, because nutrition is the underpinning of so many diseases.

“Food is the top risk factor for early death in the U.S.,” Dr. Albin said. “I like to say that five times in a row. People have not digested it.”

During her culinary medicine courses, she also asks her medical students: “Who is comfortable in the kitchen?” Some sheepishly raise their hands, she said. Some don’t. Many don’t know anything about cooking.

Then she teaches students about healthy food and how to make it. As part of her program, medical students are given a pantry starter kit with olive oil and a variety of spices to take home and use.

Some recipes Dr. Albin teaches includes mango chili shrimp salad with lime vinaigrette, eggplant sliders, yellow vegetable curry, and strawberry banana chia pudding.

“If you figure out how to do it for your own busy, everyday life, you are now empowered to tell someone else about it,” she said.
 

A dietitian’s involvement

Milette Siler, RD, LD, CCMS, works with Dr. Albin to educate medical students and patients about food as medicine. A significant chunk of her job involves teaching future doctors what dietitians do.

When the class starts, many students don’t know two of the five basic things dietitians do, Ms. Siler said. By the end of the class, all students know what a dietitian does.

That’s important as students go on to become doctors.

“For us to remove barriers to care, we have to acknowledge most patients’ entry into health care is their physician,” she said. “The dietitian is often a referral. Doctors need to know enough to do no harm.”

Clinicians are often siloed, she said, and the key to better serving patients is partnership, transparency, and relationships. “I think everybody is at a point where everyone is saying what we’re doing isn’t working,” she said. “The American public deserves better, physicians deserve better, and clinicians deserve better.”
 

Popular with students

While the old guard has been slow to embrace the shift, her students have helped drive the growth of the culinary medicine field, Dr. Albin said.

“They are not settling for the inadequacy that somehow the rest of us did,” she continued. “I’m so hopeful for the future of the health system. We have a generation of people who will not stand for neglecting the most vital elements.”

Courtesy Farshad Fani Marvasti, MD, MPH

Lyndon Bui, a second-year medical student at the University of Arizona, Phoenix, is an example of one of these people.

As a member of a culinary medicine interest group on campus, he said, he has learned a lot about the importance of diet for long-term health. This has given him confidence to talk about food and nutrition.

His group does cooking demos at the Phoenix Farmers Market using food from various local vendors. They usually make a salad from local greens and cook seasonal veggies in a stir fry, he said.

They’ve previously made salad with microgreens – young seedlings of edible vegetables and herbs – and pomegranate seeds with a honey mustard vinaigrette, eggplant or cucumber, and hummus on pita bread, as well as almond butter and honey sandwiches, according to the university.

The group also talks with people in the community, answers questions, and learns about community needs.

Mr. Bui’s participation in this group has helped him cultivate a passion for community outreach that he wants to incorporate into his career.

“I feel like I have the knowledge to provide better advice to patients,” he said. “Knowing all these things about food, I feel more comfortable talking about it and more inclined to refer to a dietitian when maybe I wouldn’t have before.”
 

Family physician applauds culinary medicine programs

When Angie Neison, MD, CCMS, went to medical school, she was surprised there wasn’t more education on nutrition.

In fact, on average, physicians receive less than 20 hours of nutrition education, according to the University of Arizona.

Now 15 years into her career as a family physician, Dr. Neison says nutrition is a huge part of her practice. She spends time working to bust myths about nutrition for her patients – including that healthy food is boring and bland, that making it is time consuming, and that healthy food is expensive. She also spends time teaching aspects of culinary medicine to her colleagues – many of whom are well into their careers – so they can better serve their patients.

It’s worth it to spend time learning about nutrition, she said, whether that’s as a medical student in a culinary medicine program or a practicing physician taking additional courses.

Nutrition education in medical school hasn’t been a priority, she said, maybe because there is so much to learn, or maybe because there is no money to be made in prevention.

“If doctors learn it, they are able to better guide patients,” she said.

Correction, 11/29/22: An earlier version of this article misstated Dr. Albin's institution.
 

Farshad Fani Marvasti, MD, MPH, is part of a growing movement to fundamentally shift medical education to include training on how to cook healthy meals.

The way he sees it, the stakes couldn’t be higher. He believes doctors need to see food as medicine to be able to stem the tide of chronic disease.

About 6 in 10 adults in the United States live with chronic diseases, according to the Centers for Disease Control and Prevention, costing $4.1 trillion in annual health care costs. Adult obesity rates are rising, as are obesity-related conditions such as heart disease, stroke, type 2 diabetes, and certain types of cancer.

To turn the tide, Dr. Marvasti created a culinary medicine program in 2020 in collaboration with the University of Arizona Cooperative Extension and local chefs.

Dr. Marvasti, who is board certified in family medicine, graduated from the University of Arizona, Phoenix, where he serves as the director of the medical school’s Culinary Medicine Program.

The program offers an elective course for third- and fourth-year medical students, which introduces the evidence-based field of culinary medicine. Dr Marvasti’s goal is for the course to teach students how to use this science and the joy of cooking to improve long-term health outcomes for their patients.

As part of Dr. Marvasti’s program, students learn cooking fundamentals through chef demonstrations and hands-on practice – to teach students how food can be used to prevent and treat many chronic diseases.

One of the dishes students learn to make includes a quinoa salad made with cucumber, onion, bell peppers, corn, cherry tomatoes, beans, garlic, olive oil, and lemon juice. Another recipe includes a healthier take on dessert: Dark chocolate mousse made with three large, ripe avocados, dark chocolate powder, three tablespoons of agave or maple, coconut cream, nondairy milk, salt, and vanilla. Dr. Marvasti and his team are set to build out the existing program to develop additional resources for medically underserved and rural communities in Arizona, according to a statement from the university. These plans will be funded by a $750,000 grant from Novo Nordisk.

“We’re going to develop an open education curriculum to share, so it’s open access to everyone,” said Dr. Marvasti, who is also director of Public Health, Prevention and Health Promotion and an associate professor at the university. “It can be adaptable at the undergraduate, graduate, and postgraduate level.”

Dr. Marvasti and his colleagues at the University of Arizona aren’t alone. In fact, culinary medicine programs are sprouting some serious legs.
 

Culinary medicine programs catch on

Jaclyn Albin, MD, CCMS, an associate professor in the departments of internal medicine and pediatrics at UT Southwestern Medical Center, Dallas, conducted a scoping review of the literature on culinary medicine programs for medical students.* Her purpose was to learn how the programs were structured and how they assessed student knowledge and attitudes regarding nutrition counseling for patients.

Dr. Albin and her colleagues performed an initial literature search between June 1 and Aug. 1, 2020, of papers published between Jan. 1, 2012, and Aug. 1, 2020 – excluding some newer programs such as the one at the University of Arizona. The results of their research were published in Academic Medicine.

Ultimately, the authors identified and examined 34 programs offering medical student–focused culinary medicine courses.

Program instructors typically included a team of physicians, dietitians, chefs, and other professionals, the study found.

Most program participants exclusively taught medical students, though the training years of participants varied among programs, and they included first-, second-, third-, and fourth-year students. Some programs allowed students from outside their respective medical school to participate in the trainings.

As for the formats of the program, most included cohorts of 10-20 students attending multiple 2- to 3-hour sessions over the course of several months. The University of Alabama at Birmingham offers one of the longest courses, which spans 4-5 months, according to the paper. In contrast, the University of Rochester (N.Y.) program offers only a 1-day lab divided into four sessions, with each session lasting about 2 hours.

The culinary medicine programs’ course sessions tended to include a 10- to 30-minute didactic session involving videos, research articles, culinary theories, and other lectures, a 60- to 90-minute hands-on cooking session, and a 30-minute discussion around nutrition, culture, and patient care.

Most programs used pre- and post-program surveys to evaluate outcomes, though results varied between programs, according to the study. While each program evaluation had different metrics, the surveys generally revealed students felt more confident discussing dietary interventions with patients and in their own cooking skills following completion.
 

Course correction

Most of those programs are unfunded or minimally funded, Dr. Albin said.

Her own program, which is immensely popular with medical students, is one she teaches on a volunteer basis.

“I do this for free, in the evenings, because I believe in it,” she said.

Medical school education real estate is limited, so convincing medical schools to add something to the curriculum is difficult, Dr. Albin noted.

But it’s worth it, she said, because nutrition is the underpinning of so many diseases.

“Food is the top risk factor for early death in the U.S.,” Dr. Albin said. “I like to say that five times in a row. People have not digested it.”

During her culinary medicine courses, she also asks her medical students: “Who is comfortable in the kitchen?” Some sheepishly raise their hands, she said. Some don’t. Many don’t know anything about cooking.

Then she teaches students about healthy food and how to make it. As part of her program, medical students are given a pantry starter kit with olive oil and a variety of spices to take home and use.

Some recipes Dr. Albin teaches includes mango chili shrimp salad with lime vinaigrette, eggplant sliders, yellow vegetable curry, and strawberry banana chia pudding.

“If you figure out how to do it for your own busy, everyday life, you are now empowered to tell someone else about it,” she said.
 

A dietitian’s involvement

Milette Siler, RD, LD, CCMS, works with Dr. Albin to educate medical students and patients about food as medicine. A significant chunk of her job involves teaching future doctors what dietitians do.

When the class starts, many students don’t know two of the five basic things dietitians do, Ms. Siler said. By the end of the class, all students know what a dietitian does.

That’s important as students go on to become doctors.

“For us to remove barriers to care, we have to acknowledge most patients’ entry into health care is their physician,” she said. “The dietitian is often a referral. Doctors need to know enough to do no harm.”

Clinicians are often siloed, she said, and the key to better serving patients is partnership, transparency, and relationships. “I think everybody is at a point where everyone is saying what we’re doing isn’t working,” she said. “The American public deserves better, physicians deserve better, and clinicians deserve better.”
 

Popular with students

While the old guard has been slow to embrace the shift, her students have helped drive the growth of the culinary medicine field, Dr. Albin said.

“They are not settling for the inadequacy that somehow the rest of us did,” she continued. “I’m so hopeful for the future of the health system. We have a generation of people who will not stand for neglecting the most vital elements.”

Courtesy Farshad Fani Marvasti, MD, MPH

Lyndon Bui, a second-year medical student at the University of Arizona, Phoenix, is an example of one of these people.

As a member of a culinary medicine interest group on campus, he said, he has learned a lot about the importance of diet for long-term health. This has given him confidence to talk about food and nutrition.

His group does cooking demos at the Phoenix Farmers Market using food from various local vendors. They usually make a salad from local greens and cook seasonal veggies in a stir fry, he said.

They’ve previously made salad with microgreens – young seedlings of edible vegetables and herbs – and pomegranate seeds with a honey mustard vinaigrette, eggplant or cucumber, and hummus on pita bread, as well as almond butter and honey sandwiches, according to the university.

The group also talks with people in the community, answers questions, and learns about community needs.

Mr. Bui’s participation in this group has helped him cultivate a passion for community outreach that he wants to incorporate into his career.

“I feel like I have the knowledge to provide better advice to patients,” he said. “Knowing all these things about food, I feel more comfortable talking about it and more inclined to refer to a dietitian when maybe I wouldn’t have before.”
 

Family physician applauds culinary medicine programs

When Angie Neison, MD, CCMS, went to medical school, she was surprised there wasn’t more education on nutrition.

In fact, on average, physicians receive less than 20 hours of nutrition education, according to the University of Arizona.

Now 15 years into her career as a family physician, Dr. Neison says nutrition is a huge part of her practice. She spends time working to bust myths about nutrition for her patients – including that healthy food is boring and bland, that making it is time consuming, and that healthy food is expensive. She also spends time teaching aspects of culinary medicine to her colleagues – many of whom are well into their careers – so they can better serve their patients.

It’s worth it to spend time learning about nutrition, she said, whether that’s as a medical student in a culinary medicine program or a practicing physician taking additional courses.

Nutrition education in medical school hasn’t been a priority, she said, maybe because there is so much to learn, or maybe because there is no money to be made in prevention.

“If doctors learn it, they are able to better guide patients,” she said.

Correction, 11/29/22: An earlier version of this article misstated Dr. Albin's institution.
 

What’s the opposite of an antibiotic?

Everyone knows that LOTME loves a good dichotomy: yin/yang, good/evil, heads/tails, particle/wave, peanut butter/jelly. They’re all great. We’re also big fans of microbiomes, particularly the gut microbiome. But what if we could combine the two? A healthy and nutritious story about the gut microbiome, with a dash of added dichotomy for flavor. Is such a thing even possible? Let’s find out.

Nastya Dulhiier/Unsplash

First, we need an antibiotic, a drug designed to fight bacterial infections. If you’ve got strep throat, otitis media, or bubonic plague, there’s a good chance you will receive an antibiotic. That antibiotic will kill the bad bacteria that are making you sick, but it will also kill a lot of the good bacteria that inhabit your gut microbiome, which results in side effects like bloating and diarrhea.

It comes down to diversity, explained Elisa Marroquin, PhD, of Texas Christian University (Go Horned Frogs!): “In a human community, we need people that have different professions because we don’t all know how to do every single job. And so the same happens with bacteria. We need lots of different gut bacteria that know how to do different things.”

She and her colleagues reviewed 29 studies published over the last 7 years and found a way to preserve the diversity of a human gut microbiome that’s dealing with an antibiotic. Their solution? Prescribe a probiotic.

The way to fight the effects of stopping a bacterial infection is to provide food for what are, basically, other bacterial infections. Antibiotic/probiotic is a prescription for dichotomy, and it means we managed to combine gut microbiomes with a dichotomy. And you didn’t think we could do it.
 

The earphone of hearing aids

It’s estimated that up to 75% of people who need hearing aids don’t wear them. Why? Well, there’s the social stigma about not wanting to appear too old, and then there’s the cost factor.

Antoni Shkraba/Pexels

Is there a cheaper, less stigmatizing option to amplify hearing? The answer, according to otolaryngologist Yen-fu Cheng, MD, of Taipei Veterans General Hospital and associates, is wireless earphones. AirPods, if you want to be brand specific.

Airpods can be on the more expensive side – running about $129 for AirPods 2 and $249 for AirPods Pro – but when compared with premium hearing aids ($10,000), or even basic aids (about $1,500), the Apple products come off inexpensive after all.

The team tested the premium and basic hearing aids against the AirPods 2 and the AirPod Pro using Apple’s Live Listen feature, which helps amplify sound through the company’s wireless earphones and iPhones and was initially designed to assist people with normal hearing in situations such as birdwatching.

The AirPods Pro worked just as well as the basic hearing aid but not quite as well as the premium hearing aid in a quiet setting, while the AirPods 2 performed the worst. When tested in a noisy setting, the AirPods Pro was pretty comparable to the premium hearing aid, as long as the noise came from a lateral direction. Neither of the AirPod models did as well as the hearing aids with head-on noises.

Wireless earbuds may not be the perfect solution from a clinical standpoint, but they’re a good start for people who don’t have access to hearing aids, Dr. Cheng noted.

So who says headphones damage your hearing? They might actually help.
 

Now I lay me down to sleep, I pray the computer my soul to keep

Radiation is the boring hazard of space travel. No one dies in a space horror movie because they’ve been slowly exposed to too much cosmic radiation. It’s always “thrown out the airlock” this and “eaten by a xenomorph” that.

Michael Chiara/Unsplash

Radiation, however, is not something that can be ignored, but it turns out that a potential solution is another science fiction staple: artificial hibernation. Generally in sci-fi, hibernation is a plot convenience to get people from point A to point B in a ship that doesn’t break the laws of physics. Here on Earth, though, it is well known that animals naturally entering a state of torpor during hibernation gain significant resistance to radiation.

The problem, of course, is that humans don’t hibernate, and no matter how hard people who work 100-hour weeks for Elon Musk try, sleeping for months on end is simply something we can’t do. However, a new study shows that it’s possible to induce this torpor state in animals that don’t naturally hibernate. By injecting rats with adenosine 5’-monophosphate monohydrate and keeping them in a room held at 16° C, an international team of scientists successfully induced a synthetic torpor state.

That’s not all they did: The scientists also exposed the hibernating rats to a large dose of radiation approximating that found in deep space. Which isn’t something we’d like to explain to our significant other when we got home from work. “So how was your day?” “Oh, I irradiated a bunch of sleeping rats. … Don’t worry they’re fine!” Which they were. Thanks to the hypoxic and hypothermic state, the tissue was spared damage from the high-energy ion radiation.

Obviously, there’s a big difference between a rat and a human and a lot of work to be done, but the study does show that artificial hibernation is possible. Perhaps one day we’ll be able to fall asleep and wake up light-years away under an alien sky, and we won’t be horrifically mutated or riddled with cancer. If, however, you find yourself in hibernation on your way to Jupiter (or Saturn) to investigate a mysterious black monolith, we suggest sleeping with one eye open and gripping your pillow tight.

What’s the opposite of an antibiotic?

Everyone knows that LOTME loves a good dichotomy: yin/yang, good/evil, heads/tails, particle/wave, peanut butter/jelly. They’re all great. We’re also big fans of microbiomes, particularly the gut microbiome. But what if we could combine the two? A healthy and nutritious story about the gut microbiome, with a dash of added dichotomy for flavor. Is such a thing even possible? Let’s find out.

Nastya Dulhiier/Unsplash

First, we need an antibiotic, a drug designed to fight bacterial infections. If you’ve got strep throat, otitis media, or bubonic plague, there’s a good chance you will receive an antibiotic. That antibiotic will kill the bad bacteria that are making you sick, but it will also kill a lot of the good bacteria that inhabit your gut microbiome, which results in side effects like bloating and diarrhea.

It comes down to diversity, explained Elisa Marroquin, PhD, of Texas Christian University (Go Horned Frogs!): “In a human community, we need people that have different professions because we don’t all know how to do every single job. And so the same happens with bacteria. We need lots of different gut bacteria that know how to do different things.”

She and her colleagues reviewed 29 studies published over the last 7 years and found a way to preserve the diversity of a human gut microbiome that’s dealing with an antibiotic. Their solution? Prescribe a probiotic.

The way to fight the effects of stopping a bacterial infection is to provide food for what are, basically, other bacterial infections. Antibiotic/probiotic is a prescription for dichotomy, and it means we managed to combine gut microbiomes with a dichotomy. And you didn’t think we could do it.
 

The earphone of hearing aids

It’s estimated that up to 75% of people who need hearing aids don’t wear them. Why? Well, there’s the social stigma about not wanting to appear too old, and then there’s the cost factor.

Antoni Shkraba/Pexels

Is there a cheaper, less stigmatizing option to amplify hearing? The answer, according to otolaryngologist Yen-fu Cheng, MD, of Taipei Veterans General Hospital and associates, is wireless earphones. AirPods, if you want to be brand specific.

Airpods can be on the more expensive side – running about $129 for AirPods 2 and $249 for AirPods Pro – but when compared with premium hearing aids ($10,000), or even basic aids (about $1,500), the Apple products come off inexpensive after all.

The team tested the premium and basic hearing aids against the AirPods 2 and the AirPod Pro using Apple’s Live Listen feature, which helps amplify sound through the company’s wireless earphones and iPhones and was initially designed to assist people with normal hearing in situations such as birdwatching.

The AirPods Pro worked just as well as the basic hearing aid but not quite as well as the premium hearing aid in a quiet setting, while the AirPods 2 performed the worst. When tested in a noisy setting, the AirPods Pro was pretty comparable to the premium hearing aid, as long as the noise came from a lateral direction. Neither of the AirPod models did as well as the hearing aids with head-on noises.

Wireless earbuds may not be the perfect solution from a clinical standpoint, but they’re a good start for people who don’t have access to hearing aids, Dr. Cheng noted.

So who says headphones damage your hearing? They might actually help.
 

Now I lay me down to sleep, I pray the computer my soul to keep

Radiation is the boring hazard of space travel. No one dies in a space horror movie because they’ve been slowly exposed to too much cosmic radiation. It’s always “thrown out the airlock” this and “eaten by a xenomorph” that.

Michael Chiara/Unsplash

Radiation, however, is not something that can be ignored, but it turns out that a potential solution is another science fiction staple: artificial hibernation. Generally in sci-fi, hibernation is a plot convenience to get people from point A to point B in a ship that doesn’t break the laws of physics. Here on Earth, though, it is well known that animals naturally entering a state of torpor during hibernation gain significant resistance to radiation.

The problem, of course, is that humans don’t hibernate, and no matter how hard people who work 100-hour weeks for Elon Musk try, sleeping for months on end is simply something we can’t do. However, a new study shows that it’s possible to induce this torpor state in animals that don’t naturally hibernate. By injecting rats with adenosine 5’-monophosphate monohydrate and keeping them in a room held at 16° C, an international team of scientists successfully induced a synthetic torpor state.

That’s not all they did: The scientists also exposed the hibernating rats to a large dose of radiation approximating that found in deep space. Which isn’t something we’d like to explain to our significant other when we got home from work. “So how was your day?” “Oh, I irradiated a bunch of sleeping rats. … Don’t worry they’re fine!” Which they were. Thanks to the hypoxic and hypothermic state, the tissue was spared damage from the high-energy ion radiation.

Obviously, there’s a big difference between a rat and a human and a lot of work to be done, but the study does show that artificial hibernation is possible. Perhaps one day we’ll be able to fall asleep and wake up light-years away under an alien sky, and we won’t be horrifically mutated or riddled with cancer. If, however, you find yourself in hibernation on your way to Jupiter (or Saturn) to investigate a mysterious black monolith, we suggest sleeping with one eye open and gripping your pillow tight.

What’s the opposite of an antibiotic?

Everyone knows that LOTME loves a good dichotomy: yin/yang, good/evil, heads/tails, particle/wave, peanut butter/jelly. They’re all great. We’re also big fans of microbiomes, particularly the gut microbiome. But what if we could combine the two? A healthy and nutritious story about the gut microbiome, with a dash of added dichotomy for flavor. Is such a thing even possible? Let’s find out.

Nastya Dulhiier/Unsplash

First, we need an antibiotic, a drug designed to fight bacterial infections. If you’ve got strep throat, otitis media, or bubonic plague, there’s a good chance you will receive an antibiotic. That antibiotic will kill the bad bacteria that are making you sick, but it will also kill a lot of the good bacteria that inhabit your gut microbiome, which results in side effects like bloating and diarrhea.

It comes down to diversity, explained Elisa Marroquin, PhD, of Texas Christian University (Go Horned Frogs!): “In a human community, we need people that have different professions because we don’t all know how to do every single job. And so the same happens with bacteria. We need lots of different gut bacteria that know how to do different things.”

She and her colleagues reviewed 29 studies published over the last 7 years and found a way to preserve the diversity of a human gut microbiome that’s dealing with an antibiotic. Their solution? Prescribe a probiotic.

The way to fight the effects of stopping a bacterial infection is to provide food for what are, basically, other bacterial infections. Antibiotic/probiotic is a prescription for dichotomy, and it means we managed to combine gut microbiomes with a dichotomy. And you didn’t think we could do it.
 

The earphone of hearing aids

It’s estimated that up to 75% of people who need hearing aids don’t wear them. Why? Well, there’s the social stigma about not wanting to appear too old, and then there’s the cost factor.

Antoni Shkraba/Pexels

Is there a cheaper, less stigmatizing option to amplify hearing? The answer, according to otolaryngologist Yen-fu Cheng, MD, of Taipei Veterans General Hospital and associates, is wireless earphones. AirPods, if you want to be brand specific.

Airpods can be on the more expensive side – running about $129 for AirPods 2 and $249 for AirPods Pro – but when compared with premium hearing aids ($10,000), or even basic aids (about $1,500), the Apple products come off inexpensive after all.

The team tested the premium and basic hearing aids against the AirPods 2 and the AirPod Pro using Apple’s Live Listen feature, which helps amplify sound through the company’s wireless earphones and iPhones and was initially designed to assist people with normal hearing in situations such as birdwatching.

The AirPods Pro worked just as well as the basic hearing aid but not quite as well as the premium hearing aid in a quiet setting, while the AirPods 2 performed the worst. When tested in a noisy setting, the AirPods Pro was pretty comparable to the premium hearing aid, as long as the noise came from a lateral direction. Neither of the AirPod models did as well as the hearing aids with head-on noises.

Wireless earbuds may not be the perfect solution from a clinical standpoint, but they’re a good start for people who don’t have access to hearing aids, Dr. Cheng noted.

So who says headphones damage your hearing? They might actually help.
 

Now I lay me down to sleep, I pray the computer my soul to keep

Radiation is the boring hazard of space travel. No one dies in a space horror movie because they’ve been slowly exposed to too much cosmic radiation. It’s always “thrown out the airlock” this and “eaten by a xenomorph” that.

Michael Chiara/Unsplash

Radiation, however, is not something that can be ignored, but it turns out that a potential solution is another science fiction staple: artificial hibernation. Generally in sci-fi, hibernation is a plot convenience to get people from point A to point B in a ship that doesn’t break the laws of physics. Here on Earth, though, it is well known that animals naturally entering a state of torpor during hibernation gain significant resistance to radiation.

The problem, of course, is that humans don’t hibernate, and no matter how hard people who work 100-hour weeks for Elon Musk try, sleeping for months on end is simply something we can’t do. However, a new study shows that it’s possible to induce this torpor state in animals that don’t naturally hibernate. By injecting rats with adenosine 5’-monophosphate monohydrate and keeping them in a room held at 16° C, an international team of scientists successfully induced a synthetic torpor state.

That’s not all they did: The scientists also exposed the hibernating rats to a large dose of radiation approximating that found in deep space. Which isn’t something we’d like to explain to our significant other when we got home from work. “So how was your day?” “Oh, I irradiated a bunch of sleeping rats. … Don’t worry they’re fine!” Which they were. Thanks to the hypoxic and hypothermic state, the tissue was spared damage from the high-energy ion radiation.

Obviously, there’s a big difference between a rat and a human and a lot of work to be done, but the study does show that artificial hibernation is possible. Perhaps one day we’ll be able to fall asleep and wake up light-years away under an alien sky, and we won’t be horrifically mutated or riddled with cancer. If, however, you find yourself in hibernation on your way to Jupiter (or Saturn) to investigate a mysterious black monolith, we suggest sleeping with one eye open and gripping your pillow tight.

Some experts are encouraging clinicians to see the amoxicillin shortage through pink-colored glasses.

The ongoing shortage, which was first reported in October and was prompted by a surge in demand linked in part to influenza and respiratory syncytial virus (RSV), could be an opportunity for clinicians to refine their prescribing practices and avoid unnecessary and potentially harmful orders for the medication, they say.

Antibiotics are often prescribed to patients who do not need them. In many cases, patients’ symptoms are caused by viral infections, not bacteria, so antibiotics do not help.

Even when symptoms resolve after a patient takes an antibiotic, the drug may have had nothing to do with their improvement.

“Seems like a good time to remind people that the vast majority of respiratory infections are caused by viruses and that antibiotics like amoxicillin do absolutely nothing for them except give people diarrhea. Time to double-down on assessment; use antibiotics only when needed,” Jason Gallagher, PharmD, of Temple University School of Pharmacy in Philadelphia, posted on Twitter.

When antibiotics are not helping, they still may cause harm. Treatment with antibiotics entails risks for antibiotic resistance, infection with Clostridioides difficile, and side effects, such as rashes and – as Dr. Gallagher noted – diarrhea.

“They say ‘never let a good shortage go to waste,’ ” Michael Cosimini, MD, a pediatrician at Oregon Health & Science University, Portland, tweeted about the lack of amoxicillin in October.

Dr. Cosimini offered his thoughts about “improving our amoxicillin prescribing patterns” in pediatrics and encouraged colleagues to do so.

For example, he highlighted guidelines that state that antimicrobial therapy is not routinely required for preschool-aged children with community-acquired pneumonia (CAP) because most cases are caused by viral pathogens.

And trials show that when antibiotics are used for CAP, a shorter treatment duration, such as 5 days, rather than the standard 7-10 days, can be sufficient.

“As physicians, a shortage like this is an opportunity to do our best in the short term, as well as reflect on our current practice and make changes for the better in the long run,” Dr. Cosimini told this news organization.

Amoxicillin is the most commonly prescribed antibiotic in the outpatient setting and is the first choice among antimicrobial agents for common infections, such as otitis media, strep throat, and pneumonia, he said. “We use it frequently, so even small changes could go a long way to improve our prescribing practice,” Dr. Cosimini said.
 

Inappropriate antibiotic prescribing may be common

A 2021 statement on antibiotic stewardship from the American Academy of Pediatrics (AAP) declared that while antibiotics have saved countless lives, they can also cause harm and are frequently used inappropriately.

“One in five pediatric ambulatory visits result in an antibiotic prescription, accounting for nearly 50 million antibiotic prescriptions annually in the United States, at least half of which are considered inappropriate. [Acute respiratory tract infections] account for more than two-thirds of antibiotic prescriptions for children, at least one-third of which are unnecessary,” according to the society.

Outpatient antibiotic stewardship efforts could focus on clinical encounters in which the medications could be avoided altogether, the AAP suggested.

“Examples include antibiotic prescribing for nonspecific upper respiratory infection, bronchiolitis, acute bronchitis, asthma exacerbation, or conjunctivitis,” the group said.

Given the epidemiology of bacterial infections seen in ambulatory care settings that warrant antibiotic therapy, researchers conservatively estimate “that antibiotic prescribing could be safely reduced by 30%,” the statement noted.

That said, treatment decisions are not always clear cut.

“Certain infections in children, such as ear infections and lung infections, can be caused by viruses, bacteria, or both at the same time,” Dr. Cosimini said. “As such, it is very difficult to know which children benefit from which antibiotics.”
 

Watching, waiting, vaccinating

Pediatricians know that many children with ear infections will get better without antibiotics. “Parents should know that their doctor may suggest watching an ear infection without antibiotics, as is the recommendation from the AAP,” Dr. Cosimini said.

Data indicate that doctors are not following this practice as often as they could be, he said.

When antibiotic treatment is needed during the shortage, agents other than amoxicillin suspension can be used.

“Even though amoxicillin suspension is our go-to antibiotic for many infections, there are effective alternative options,” Dr. Cosimini said. “Children’s Hospital of Philadelphia has a good list for doctors looking for alternatives.”

Another approach to reducing the use of antibiotics in the future involves preventing infections through vaccination.

Research shows that routine childhood vaccines may have averted millions of respiratory and ear infections. And because bacterial infections can follow viral infections, the annual flu vaccine and COVID-19 vaccines “are also great tools to reduce antibiotic use,” Dr. Cosimini said.
 

A turn to more toxic options?

The shortage of amoxicillin oral powder for suspension was reported by the Food and Drug Administration and the American Society of Health-System Pharmacists (ASHP) in October.

On Nov. 4, the Society of Infectious Diseases Pharmacists (SIDP) issued a statement on the amoxicillin shortage, noting that increased demand for the drug coincided with a surge in respiratory viral infections, including RSV and influenza, among children.

“Though supportive care is the mainstay of treatment for viral infections, antibiotics may be indicated for the treatment of superimposed bacterial infections, including pneumonia and acute otitis media,” the SIDP statement said. “While alternative antibiotics may be available depending on the indication, many have a broader spectrum of activity, increased toxicity, and excess cost relative to amoxicillin. Furthermore, it is anticipated alternatives may soon become in short supply as well, given increased usage.”

SIDP “encourages the judicious use of antibiotics” and supports watch-and-wait strategies and the use of the shortest effective duration of therapy when appropriate.

Michael Ganio, PharmD, senior director of pharmacy practice and quality for ASHP, monitors around 250 drug shortages at any given time.

The amoxicillin shortage, while not “overly worrisome,” stands out because of how widely the drug is used and the fact that the shortage appears to have been sparked by an increase in demand rather than supply chain or manufacturing quality problems that more typically lead to shortages, he said.

Unlike some other shortages, the amoxicillin shortfall largely does not involve disrupting a medication regimen that someone was already receiving, and substitutions should be available.

“That said, it’s very, very disruptive to parents or a caregiver when you have a sick child who needs an antibiotic and it’s not available,” Dr. Ganio said.
 

Can a poster change practice?

In an unrelated move, the U.S. Agency for Healthcare Research and Quality published new resources and strategies to reduce inappropriate antibiotic use in ambulatory care settings.

One of the tools is a poster that doctors can print and hang in their offices. It states: “We commit to only prescribing antibiotics when they will help you. Taking antibiotics when you do not need them will NOT make you better. You will still feel sick, and the antibiotic may give you a skin rash, diarrhea, or a yeast infection.”

Jeffrey A. Linder, MD, MPH, a general internist and researcher at Northwestern University in Chicago, helped develop some of the approaches to improve prescribing practices in primary care.

Dr. Linder explained on a recent episode of the Freakonomics, M.D. podcast that the poster can be key.

One reason clinicians may prescribe antibiotics inappropriately is because they assume – perhaps erroneously – that patients want and expect them. By addressing the issue up front by displaying the poster, they may be able to “short-circuit” that type of thinking.

A minority of patients do expect antibiotics. “But the vast majority of patients are thinking, ‘I don’t feel well, I want to know what’s going on, and I want to know how to feel better and what’s going to happen.’ ”

For their part, patients can tell their doctors that they want an antibiotic only if they really need it, Dr. Linder said.

A version of this article first appeared on Medscape.com.

Some experts are encouraging clinicians to see the amoxicillin shortage through pink-colored glasses.

The ongoing shortage, which was first reported in October and was prompted by a surge in demand linked in part to influenza and respiratory syncytial virus (RSV), could be an opportunity for clinicians to refine their prescribing practices and avoid unnecessary and potentially harmful orders for the medication, they say.

Antibiotics are often prescribed to patients who do not need them. In many cases, patients’ symptoms are caused by viral infections, not bacteria, so antibiotics do not help.

Even when symptoms resolve after a patient takes an antibiotic, the drug may have had nothing to do with their improvement.

“Seems like a good time to remind people that the vast majority of respiratory infections are caused by viruses and that antibiotics like amoxicillin do absolutely nothing for them except give people diarrhea. Time to double-down on assessment; use antibiotics only when needed,” Jason Gallagher, PharmD, of Temple University School of Pharmacy in Philadelphia, posted on Twitter.

When antibiotics are not helping, they still may cause harm. Treatment with antibiotics entails risks for antibiotic resistance, infection with Clostridioides difficile, and side effects, such as rashes and – as Dr. Gallagher noted – diarrhea.

“They say ‘never let a good shortage go to waste,’ ” Michael Cosimini, MD, a pediatrician at Oregon Health & Science University, Portland, tweeted about the lack of amoxicillin in October.

Dr. Cosimini offered his thoughts about “improving our amoxicillin prescribing patterns” in pediatrics and encouraged colleagues to do so.

For example, he highlighted guidelines that state that antimicrobial therapy is not routinely required for preschool-aged children with community-acquired pneumonia (CAP) because most cases are caused by viral pathogens.

And trials show that when antibiotics are used for CAP, a shorter treatment duration, such as 5 days, rather than the standard 7-10 days, can be sufficient.

“As physicians, a shortage like this is an opportunity to do our best in the short term, as well as reflect on our current practice and make changes for the better in the long run,” Dr. Cosimini told this news organization.

Amoxicillin is the most commonly prescribed antibiotic in the outpatient setting and is the first choice among antimicrobial agents for common infections, such as otitis media, strep throat, and pneumonia, he said. “We use it frequently, so even small changes could go a long way to improve our prescribing practice,” Dr. Cosimini said.
 

Inappropriate antibiotic prescribing may be common

A 2021 statement on antibiotic stewardship from the American Academy of Pediatrics (AAP) declared that while antibiotics have saved countless lives, they can also cause harm and are frequently used inappropriately.

“One in five pediatric ambulatory visits result in an antibiotic prescription, accounting for nearly 50 million antibiotic prescriptions annually in the United States, at least half of which are considered inappropriate. [Acute respiratory tract infections] account for more than two-thirds of antibiotic prescriptions for children, at least one-third of which are unnecessary,” according to the society.

Outpatient antibiotic stewardship efforts could focus on clinical encounters in which the medications could be avoided altogether, the AAP suggested.

“Examples include antibiotic prescribing for nonspecific upper respiratory infection, bronchiolitis, acute bronchitis, asthma exacerbation, or conjunctivitis,” the group said.

Given the epidemiology of bacterial infections seen in ambulatory care settings that warrant antibiotic therapy, researchers conservatively estimate “that antibiotic prescribing could be safely reduced by 30%,” the statement noted.

That said, treatment decisions are not always clear cut.

“Certain infections in children, such as ear infections and lung infections, can be caused by viruses, bacteria, or both at the same time,” Dr. Cosimini said. “As such, it is very difficult to know which children benefit from which antibiotics.”
 

Watching, waiting, vaccinating

Pediatricians know that many children with ear infections will get better without antibiotics. “Parents should know that their doctor may suggest watching an ear infection without antibiotics, as is the recommendation from the AAP,” Dr. Cosimini said.

Data indicate that doctors are not following this practice as often as they could be, he said.

When antibiotic treatment is needed during the shortage, agents other than amoxicillin suspension can be used.

“Even though amoxicillin suspension is our go-to antibiotic for many infections, there are effective alternative options,” Dr. Cosimini said. “Children’s Hospital of Philadelphia has a good list for doctors looking for alternatives.”

Another approach to reducing the use of antibiotics in the future involves preventing infections through vaccination.

Research shows that routine childhood vaccines may have averted millions of respiratory and ear infections. And because bacterial infections can follow viral infections, the annual flu vaccine and COVID-19 vaccines “are also great tools to reduce antibiotic use,” Dr. Cosimini said.
 

A turn to more toxic options?

The shortage of amoxicillin oral powder for suspension was reported by the Food and Drug Administration and the American Society of Health-System Pharmacists (ASHP) in October.

On Nov. 4, the Society of Infectious Diseases Pharmacists (SIDP) issued a statement on the amoxicillin shortage, noting that increased demand for the drug coincided with a surge in respiratory viral infections, including RSV and influenza, among children.

“Though supportive care is the mainstay of treatment for viral infections, antibiotics may be indicated for the treatment of superimposed bacterial infections, including pneumonia and acute otitis media,” the SIDP statement said. “While alternative antibiotics may be available depending on the indication, many have a broader spectrum of activity, increased toxicity, and excess cost relative to amoxicillin. Furthermore, it is anticipated alternatives may soon become in short supply as well, given increased usage.”

SIDP “encourages the judicious use of antibiotics” and supports watch-and-wait strategies and the use of the shortest effective duration of therapy when appropriate.

Michael Ganio, PharmD, senior director of pharmacy practice and quality for ASHP, monitors around 250 drug shortages at any given time.

The amoxicillin shortage, while not “overly worrisome,” stands out because of how widely the drug is used and the fact that the shortage appears to have been sparked by an increase in demand rather than supply chain or manufacturing quality problems that more typically lead to shortages, he said.

Unlike some other shortages, the amoxicillin shortfall largely does not involve disrupting a medication regimen that someone was already receiving, and substitutions should be available.

“That said, it’s very, very disruptive to parents or a caregiver when you have a sick child who needs an antibiotic and it’s not available,” Dr. Ganio said.
 

Can a poster change practice?

In an unrelated move, the U.S. Agency for Healthcare Research and Quality published new resources and strategies to reduce inappropriate antibiotic use in ambulatory care settings.

One of the tools is a poster that doctors can print and hang in their offices. It states: “We commit to only prescribing antibiotics when they will help you. Taking antibiotics when you do not need them will NOT make you better. You will still feel sick, and the antibiotic may give you a skin rash, diarrhea, or a yeast infection.”

Jeffrey A. Linder, MD, MPH, a general internist and researcher at Northwestern University in Chicago, helped develop some of the approaches to improve prescribing practices in primary care.

Dr. Linder explained on a recent episode of the Freakonomics, M.D. podcast that the poster can be key.

One reason clinicians may prescribe antibiotics inappropriately is because they assume – perhaps erroneously – that patients want and expect them. By addressing the issue up front by displaying the poster, they may be able to “short-circuit” that type of thinking.

A minority of patients do expect antibiotics. “But the vast majority of patients are thinking, ‘I don’t feel well, I want to know what’s going on, and I want to know how to feel better and what’s going to happen.’ ”

For their part, patients can tell their doctors that they want an antibiotic only if they really need it, Dr. Linder said.

A version of this article first appeared on Medscape.com.

Some experts are encouraging clinicians to see the amoxicillin shortage through pink-colored glasses.

The ongoing shortage, which was first reported in October and was prompted by a surge in demand linked in part to influenza and respiratory syncytial virus (RSV), could be an opportunity for clinicians to refine their prescribing practices and avoid unnecessary and potentially harmful orders for the medication, they say.

Antibiotics are often prescribed to patients who do not need them. In many cases, patients’ symptoms are caused by viral infections, not bacteria, so antibiotics do not help.

Even when symptoms resolve after a patient takes an antibiotic, the drug may have had nothing to do with their improvement.

“Seems like a good time to remind people that the vast majority of respiratory infections are caused by viruses and that antibiotics like amoxicillin do absolutely nothing for them except give people diarrhea. Time to double-down on assessment; use antibiotics only when needed,” Jason Gallagher, PharmD, of Temple University School of Pharmacy in Philadelphia, posted on Twitter.

When antibiotics are not helping, they still may cause harm. Treatment with antibiotics entails risks for antibiotic resistance, infection with Clostridioides difficile, and side effects, such as rashes and – as Dr. Gallagher noted – diarrhea.

“They say ‘never let a good shortage go to waste,’ ” Michael Cosimini, MD, a pediatrician at Oregon Health & Science University, Portland, tweeted about the lack of amoxicillin in October.

Dr. Cosimini offered his thoughts about “improving our amoxicillin prescribing patterns” in pediatrics and encouraged colleagues to do so.

For example, he highlighted guidelines that state that antimicrobial therapy is not routinely required for preschool-aged children with community-acquired pneumonia (CAP) because most cases are caused by viral pathogens.

And trials show that when antibiotics are used for CAP, a shorter treatment duration, such as 5 days, rather than the standard 7-10 days, can be sufficient.

“As physicians, a shortage like this is an opportunity to do our best in the short term, as well as reflect on our current practice and make changes for the better in the long run,” Dr. Cosimini told this news organization.

Amoxicillin is the most commonly prescribed antibiotic in the outpatient setting and is the first choice among antimicrobial agents for common infections, such as otitis media, strep throat, and pneumonia, he said. “We use it frequently, so even small changes could go a long way to improve our prescribing practice,” Dr. Cosimini said.
 

Inappropriate antibiotic prescribing may be common

A 2021 statement on antibiotic stewardship from the American Academy of Pediatrics (AAP) declared that while antibiotics have saved countless lives, they can also cause harm and are frequently used inappropriately.

“One in five pediatric ambulatory visits result in an antibiotic prescription, accounting for nearly 50 million antibiotic prescriptions annually in the United States, at least half of which are considered inappropriate. [Acute respiratory tract infections] account for more than two-thirds of antibiotic prescriptions for children, at least one-third of which are unnecessary,” according to the society.

Outpatient antibiotic stewardship efforts could focus on clinical encounters in which the medications could be avoided altogether, the AAP suggested.

“Examples include antibiotic prescribing for nonspecific upper respiratory infection, bronchiolitis, acute bronchitis, asthma exacerbation, or conjunctivitis,” the group said.

Given the epidemiology of bacterial infections seen in ambulatory care settings that warrant antibiotic therapy, researchers conservatively estimate “that antibiotic prescribing could be safely reduced by 30%,” the statement noted.

That said, treatment decisions are not always clear cut.

“Certain infections in children, such as ear infections and lung infections, can be caused by viruses, bacteria, or both at the same time,” Dr. Cosimini said. “As such, it is very difficult to know which children benefit from which antibiotics.”
 

Watching, waiting, vaccinating

Pediatricians know that many children with ear infections will get better without antibiotics. “Parents should know that their doctor may suggest watching an ear infection without antibiotics, as is the recommendation from the AAP,” Dr. Cosimini said.

Data indicate that doctors are not following this practice as often as they could be, he said.

When antibiotic treatment is needed during the shortage, agents other than amoxicillin suspension can be used.

“Even though amoxicillin suspension is our go-to antibiotic for many infections, there are effective alternative options,” Dr. Cosimini said. “Children’s Hospital of Philadelphia has a good list for doctors looking for alternatives.”

Another approach to reducing the use of antibiotics in the future involves preventing infections through vaccination.

Research shows that routine childhood vaccines may have averted millions of respiratory and ear infections. And because bacterial infections can follow viral infections, the annual flu vaccine and COVID-19 vaccines “are also great tools to reduce antibiotic use,” Dr. Cosimini said.
 

A turn to more toxic options?

The shortage of amoxicillin oral powder for suspension was reported by the Food and Drug Administration and the American Society of Health-System Pharmacists (ASHP) in October.

On Nov. 4, the Society of Infectious Diseases Pharmacists (SIDP) issued a statement on the amoxicillin shortage, noting that increased demand for the drug coincided with a surge in respiratory viral infections, including RSV and influenza, among children.

“Though supportive care is the mainstay of treatment for viral infections, antibiotics may be indicated for the treatment of superimposed bacterial infections, including pneumonia and acute otitis media,” the SIDP statement said. “While alternative antibiotics may be available depending on the indication, many have a broader spectrum of activity, increased toxicity, and excess cost relative to amoxicillin. Furthermore, it is anticipated alternatives may soon become in short supply as well, given increased usage.”

SIDP “encourages the judicious use of antibiotics” and supports watch-and-wait strategies and the use of the shortest effective duration of therapy when appropriate.

Michael Ganio, PharmD, senior director of pharmacy practice and quality for ASHP, monitors around 250 drug shortages at any given time.

The amoxicillin shortage, while not “overly worrisome,” stands out because of how widely the drug is used and the fact that the shortage appears to have been sparked by an increase in demand rather than supply chain or manufacturing quality problems that more typically lead to shortages, he said.

Unlike some other shortages, the amoxicillin shortfall largely does not involve disrupting a medication regimen that someone was already receiving, and substitutions should be available.

“That said, it’s very, very disruptive to parents or a caregiver when you have a sick child who needs an antibiotic and it’s not available,” Dr. Ganio said.
 

Can a poster change practice?

In an unrelated move, the U.S. Agency for Healthcare Research and Quality published new resources and strategies to reduce inappropriate antibiotic use in ambulatory care settings.

One of the tools is a poster that doctors can print and hang in their offices. It states: “We commit to only prescribing antibiotics when they will help you. Taking antibiotics when you do not need them will NOT make you better. You will still feel sick, and the antibiotic may give you a skin rash, diarrhea, or a yeast infection.”

Jeffrey A. Linder, MD, MPH, a general internist and researcher at Northwestern University in Chicago, helped develop some of the approaches to improve prescribing practices in primary care.

Dr. Linder explained on a recent episode of the Freakonomics, M.D. podcast that the poster can be key.

One reason clinicians may prescribe antibiotics inappropriately is because they assume – perhaps erroneously – that patients want and expect them. By addressing the issue up front by displaying the poster, they may be able to “short-circuit” that type of thinking.

A minority of patients do expect antibiotics. “But the vast majority of patients are thinking, ‘I don’t feel well, I want to know what’s going on, and I want to know how to feel better and what’s going to happen.’ ”

For their part, patients can tell their doctors that they want an antibiotic only if they really need it, Dr. Linder said.

A version of this article first appeared on Medscape.com.

Boston dietitian Katarina Mollo, MEd, RDN, LDN, has virtually no memory of life without celiac disease (CD). Diagnosed at age 4, Dr. Mollo has been on a gluten-free diet for 41 years, which she says has kept her healthy and may also be why she hasn’t developed other autoimmune diseases. It’s also played a part in her thinking about screening patients with CD.

“I think [physicians] should definitely be screening people with celiac disease for autoimmune disorders, especially if they see things like anemia or if a child has dropped on the growth chart and has nutrient deficiencies,” said Dr. Mollo, whose daughter also has the disease. “I would recommend that they see someone who specializes in celiac disease so they can get monitored and have regular follow-up checks for nutrient deficiencies and other autoimmune disorders.”

Dr. Mollo’s views on screening are echoed by many CD specialists and physicians, who cite multiple studies that have found that people with the disease face higher risks for diabetes, thyroid conditions, arthritis, and other autoimmune disorders.

Gastroenterologist Alessio Fasano, MD, with Massachusetts General Hospital, Boston, said there has been a “shift in the paradigm in thinking” about cross-screening for CD and autoimmune disorders. As result, he believes the answer to the question of whether to routinely do so is a no-brainer.

“The bottom line is, if you have CD, it [should be] routine that during your annual follow-ups you check for the possibility of the onset of other autoimmune disease. And people with other autoimmune diseases, like type 1 diabetes, should also be screened for CD because of the comorbidity,” said Dr. Fasano, professor of pediatrics and gastroenterology at Harvard Medical School and professor of nutrition at the Harvard School of Public Health, both in Boston. “This is what we call good clinical practice.”
 

Screening, despite lack of consensus guidelines

Other CD specialists differ on the need for universal cross-screening but agree that, at least in some cases, people with one autoimmune disorder should be tested for others.

Jolanda Denham, MD, a pediatric gastroenterologist affiliated with Nemours Children’s Hospital in Orlando, routinely recommends that her patients with CD be screened for certain autoimmune disorders – such as type 1 diabetes and autoimmune thyroid and liver diseases – even though medical organizations have not developed clear consensus or standard guidelines on cross-screening.

“There currently is no evidence to support the screening of celiac patients for all autoimmune and rheumatologic disorders,” she said. “It is true that celiac disease is an autoimmune disorder, and as such, there is a definite increased risk of these disorders in patients with celiac disease and vice versa.”

Echoing Dr. Denham, New York–based gastroenterologist Benjamin Lebwohl, MD, president of the Society for the Study of Celiac Disease, urges physicians to look beyond consensus guidelines and to err on the side of caution and make the best decisions for their patients on a case-by-case basis.

“Given the increased risk of certain autoimmune conditions in people with celiac disease, it behooves physicians to have a low threshold to evaluate for these conditions if any suggestive symptoms are present,” said Dr. Lebwohl, director of clinical research at the Celiac Disease Center at Columbia University, New York.

“Whether to screen for these conditions among people who are entirely without symptoms is less certain, and there is no consensus on that. But it is reasonable and common to include some basic tests with annual blood work, such as thyroid function and a liver profile, since both autoimmune thyroid disease and autoimmune liver disease can be silent early on and the patient would potentially benefit from identification and treatment of these conditions,” he said.

The American Diabetes Association and the International Society of Pediatric and Adolescent Diabetes do recommend that people with diabetes be screened for CD years after diagnosis, noted Robert Rapaport, MD, a pediatric endocrinologist, with Kravis Children’s Hospital, New York. But in a study published in 2021, he and colleagues found that this wasn’t occurring, which prompted them to recommend yearly screening.

“There is a consensus that in children with type 1 diabetes, we screen them for other autoimmune disorders, specifically for thyroid disease and celiac disease,” said Dr. Rapaport, who is also Emma Elizabeth Sullivan Professor of Pediatric Endocrinology and Diabetes at Icahn School of Medicine at Mount Sinai, New York. “But there is no consensus going the other way – for patients with celiac disease, what other autoimmune conditions they should be screened for.”

This hasn’t kept some doctors from extending cross-screening efforts to their patients.

“At our center, we screen ... for thyroid disease and autoimmune liver disease as part of routine healthcare maintenance for our celiac disease patients. We discuss symptoms of diabetes and send screening with [hemoglobin] A1c for anyone who has symptoms,” said Lui Edwin, MD, a pediatric gastroenterologist with Children’s Hospital Colorado, Aurora, and director of the Colorado Center for Celiac Disease, who delivered a lecture on CD-autoimmune screening at the International Celiac Disease Symposium in October.

“It is definitely worth screening for celiac disease in [those with] other autoimmune disorders,” Dr. Edwin added.

“The symptoms can be very heterogeneous. Diagnosing and treating celiac disease can make a huge impact with respect to symptoms, quality of life, and preventing disease-related complications,” he said.
 

Mounting evidence linking CD to autoimmune disorders

Many studies have linked CD to a variety of other autoimmune disorders. The association could be due to common genetic factors or because CD might lead to such conditions. Researchers have found that people diagnosed with CD later in life are more likely to develop other autoimmune disorders.

Going gluten free has preventive advantages

In a landmark 2012 study, researchers with the Celiac Disease Center at Columbia University stopped short of recommending routine screening for the general public or asymptomatic individuals in high-prevalence groups. But they concluded that more screening of symptomatic individuals – and close relatives – would speed treatment for those with more than one autoimmune disorder.

They also noted that some studies have found that a gluten-free diet might help prevent the development of other autoimmune disorders.

Marisa Gallant Stahl, MD, a gastroenterologist with Children’s Hospital Colorado, agreed that it is important that physicians keep gluten-free diets in mind when determining which patients to cross-screen.

“The literature is mixed, but some studies suggest that treating celiac disease with a gluten-free diet actually augments the treatment and control of other autoimmune disorders [and] adherence to a gluten-free diet does reduce the risk of cancer associated with celiac disease,” she said.

Dr. Denham agreed. “Strict adherence to a gluten-free diet definitely protects against the development of enteropathy-associated T-cell lymphoma but may be protective against non-Hodgkin’s lymphoma and adenocarcinoma of the small intestine as well. All three are associated with long-term nonadherence to a gluten-free diet.”

She also noted that a gluten-free diet may help people with CD manage other autoimmune disorders, which can be complicated by CD.

“Good control of celiac disease will help prevent complications that can worsen symptoms and outcomes of concomitant autoimmune and rheumatologic disorders,” she said.
 

Other factors to consider

Dr. Fasano added that autoimmune disorders can be complicated by CD in cases in which oral medications or healthful foods are not properly absorbed in the intestines.

“For example, with Hashimoto’s disease, if you have hormone replacement with oral treatments and your intestines are not 100% functional because you have inflammation, then you may have a problem [with] the absorption of medications like levothyroxine,” he said.

“It’s the same story with diabetes. You don’t take insulin by mouth, but glucose [control] strongly depends on several factors, mostly what comes from the diet, and if it’s erratic, that can be a problem. ... So, the treatment of autoimmune diseases can be influenced by celiac disease,” he said.

In addition, Dr. Fasano and others believe that people with CD and other autoimmune disorders should be managed by a team of experts who can personalize the care on the basis of specific needs of the individual patient. These should include specialists, dietitians, mental health counselors, and family social workers.

“It has to be a multidisciplinary approach to maintain the good health of an individual,” Dr. Fasano said. “Celiac disease is the quintessential example in which the primary care physician needs to be the quarterback of the team, the patient is active in his or her health, and [specialists] not only deliver personalized care but also preventive intervention, particularly the prevention of comorbidities.”

Financial disclosures for those quoted in this article were not available at the time of publication.

A version of this article first appeared on Medscape.com.

Boston dietitian Katarina Mollo, MEd, RDN, LDN, has virtually no memory of life without celiac disease (CD). Diagnosed at age 4, Dr. Mollo has been on a gluten-free diet for 41 years, which she says has kept her healthy and may also be why she hasn’t developed other autoimmune diseases. It’s also played a part in her thinking about screening patients with CD.

“I think [physicians] should definitely be screening people with celiac disease for autoimmune disorders, especially if they see things like anemia or if a child has dropped on the growth chart and has nutrient deficiencies,” said Dr. Mollo, whose daughter also has the disease. “I would recommend that they see someone who specializes in celiac disease so they can get monitored and have regular follow-up checks for nutrient deficiencies and other autoimmune disorders.”

Dr. Mollo’s views on screening are echoed by many CD specialists and physicians, who cite multiple studies that have found that people with the disease face higher risks for diabetes, thyroid conditions, arthritis, and other autoimmune disorders.

Gastroenterologist Alessio Fasano, MD, with Massachusetts General Hospital, Boston, said there has been a “shift in the paradigm in thinking” about cross-screening for CD and autoimmune disorders. As result, he believes the answer to the question of whether to routinely do so is a no-brainer.

“The bottom line is, if you have CD, it [should be] routine that during your annual follow-ups you check for the possibility of the onset of other autoimmune disease. And people with other autoimmune diseases, like type 1 diabetes, should also be screened for CD because of the comorbidity,” said Dr. Fasano, professor of pediatrics and gastroenterology at Harvard Medical School and professor of nutrition at the Harvard School of Public Health, both in Boston. “This is what we call good clinical practice.”
 

Screening, despite lack of consensus guidelines

Other CD specialists differ on the need for universal cross-screening but agree that, at least in some cases, people with one autoimmune disorder should be tested for others.

Jolanda Denham, MD, a pediatric gastroenterologist affiliated with Nemours Children’s Hospital in Orlando, routinely recommends that her patients with CD be screened for certain autoimmune disorders – such as type 1 diabetes and autoimmune thyroid and liver diseases – even though medical organizations have not developed clear consensus or standard guidelines on cross-screening.

“There currently is no evidence to support the screening of celiac patients for all autoimmune and rheumatologic disorders,” she said. “It is true that celiac disease is an autoimmune disorder, and as such, there is a definite increased risk of these disorders in patients with celiac disease and vice versa.”

Echoing Dr. Denham, New York–based gastroenterologist Benjamin Lebwohl, MD, president of the Society for the Study of Celiac Disease, urges physicians to look beyond consensus guidelines and to err on the side of caution and make the best decisions for their patients on a case-by-case basis.

“Given the increased risk of certain autoimmune conditions in people with celiac disease, it behooves physicians to have a low threshold to evaluate for these conditions if any suggestive symptoms are present,” said Dr. Lebwohl, director of clinical research at the Celiac Disease Center at Columbia University, New York.

“Whether to screen for these conditions among people who are entirely without symptoms is less certain, and there is no consensus on that. But it is reasonable and common to include some basic tests with annual blood work, such as thyroid function and a liver profile, since both autoimmune thyroid disease and autoimmune liver disease can be silent early on and the patient would potentially benefit from identification and treatment of these conditions,” he said.

The American Diabetes Association and the International Society of Pediatric and Adolescent Diabetes do recommend that people with diabetes be screened for CD years after diagnosis, noted Robert Rapaport, MD, a pediatric endocrinologist, with Kravis Children’s Hospital, New York. But in a study published in 2021, he and colleagues found that this wasn’t occurring, which prompted them to recommend yearly screening.

“There is a consensus that in children with type 1 diabetes, we screen them for other autoimmune disorders, specifically for thyroid disease and celiac disease,” said Dr. Rapaport, who is also Emma Elizabeth Sullivan Professor of Pediatric Endocrinology and Diabetes at Icahn School of Medicine at Mount Sinai, New York. “But there is no consensus going the other way – for patients with celiac disease, what other autoimmune conditions they should be screened for.”

This hasn’t kept some doctors from extending cross-screening efforts to their patients.

“At our center, we screen ... for thyroid disease and autoimmune liver disease as part of routine healthcare maintenance for our celiac disease patients. We discuss symptoms of diabetes and send screening with [hemoglobin] A1c for anyone who has symptoms,” said Lui Edwin, MD, a pediatric gastroenterologist with Children’s Hospital Colorado, Aurora, and director of the Colorado Center for Celiac Disease, who delivered a lecture on CD-autoimmune screening at the International Celiac Disease Symposium in October.

“It is definitely worth screening for celiac disease in [those with] other autoimmune disorders,” Dr. Edwin added.

“The symptoms can be very heterogeneous. Diagnosing and treating celiac disease can make a huge impact with respect to symptoms, quality of life, and preventing disease-related complications,” he said.
 

Mounting evidence linking CD to autoimmune disorders

Many studies have linked CD to a variety of other autoimmune disorders. The association could be due to common genetic factors or because CD might lead to such conditions. Researchers have found that people diagnosed with CD later in life are more likely to develop other autoimmune disorders.

Going gluten free has preventive advantages

In a landmark 2012 study, researchers with the Celiac Disease Center at Columbia University stopped short of recommending routine screening for the general public or asymptomatic individuals in high-prevalence groups. But they concluded that more screening of symptomatic individuals – and close relatives – would speed treatment for those with more than one autoimmune disorder.

They also noted that some studies have found that a gluten-free diet might help prevent the development of other autoimmune disorders.

Marisa Gallant Stahl, MD, a gastroenterologist with Children’s Hospital Colorado, agreed that it is important that physicians keep gluten-free diets in mind when determining which patients to cross-screen.

“The literature is mixed, but some studies suggest that treating celiac disease with a gluten-free diet actually augments the treatment and control of other autoimmune disorders [and] adherence to a gluten-free diet does reduce the risk of cancer associated with celiac disease,” she said.

Dr. Denham agreed. “Strict adherence to a gluten-free diet definitely protects against the development of enteropathy-associated T-cell lymphoma but may be protective against non-Hodgkin’s lymphoma and adenocarcinoma of the small intestine as well. All three are associated with long-term nonadherence to a gluten-free diet.”

She also noted that a gluten-free diet may help people with CD manage other autoimmune disorders, which can be complicated by CD.

“Good control of celiac disease will help prevent complications that can worsen symptoms and outcomes of concomitant autoimmune and rheumatologic disorders,” she said.
 

Other factors to consider

Dr. Fasano added that autoimmune disorders can be complicated by CD in cases in which oral medications or healthful foods are not properly absorbed in the intestines.

“For example, with Hashimoto’s disease, if you have hormone replacement with oral treatments and your intestines are not 100% functional because you have inflammation, then you may have a problem [with] the absorption of medications like levothyroxine,” he said.

“It’s the same story with diabetes. You don’t take insulin by mouth, but glucose [control] strongly depends on several factors, mostly what comes from the diet, and if it’s erratic, that can be a problem. ... So, the treatment of autoimmune diseases can be influenced by celiac disease,” he said.

In addition, Dr. Fasano and others believe that people with CD and other autoimmune disorders should be managed by a team of experts who can personalize the care on the basis of specific needs of the individual patient. These should include specialists, dietitians, mental health counselors, and family social workers.

“It has to be a multidisciplinary approach to maintain the good health of an individual,” Dr. Fasano said. “Celiac disease is the quintessential example in which the primary care physician needs to be the quarterback of the team, the patient is active in his or her health, and [specialists] not only deliver personalized care but also preventive intervention, particularly the prevention of comorbidities.”

Financial disclosures for those quoted in this article were not available at the time of publication.

A version of this article first appeared on Medscape.com.

Boston dietitian Katarina Mollo, MEd, RDN, LDN, has virtually no memory of life without celiac disease (CD). Diagnosed at age 4, Dr. Mollo has been on a gluten-free diet for 41 years, which she says has kept her healthy and may also be why she hasn’t developed other autoimmune diseases. It’s also played a part in her thinking about screening patients with CD.

“I think [physicians] should definitely be screening people with celiac disease for autoimmune disorders, especially if they see things like anemia or if a child has dropped on the growth chart and has nutrient deficiencies,” said Dr. Mollo, whose daughter also has the disease. “I would recommend that they see someone who specializes in celiac disease so they can get monitored and have regular follow-up checks for nutrient deficiencies and other autoimmune disorders.”

Dr. Mollo’s views on screening are echoed by many CD specialists and physicians, who cite multiple studies that have found that people with the disease face higher risks for diabetes, thyroid conditions, arthritis, and other autoimmune disorders.

Gastroenterologist Alessio Fasano, MD, with Massachusetts General Hospital, Boston, said there has been a “shift in the paradigm in thinking” about cross-screening for CD and autoimmune disorders. As result, he believes the answer to the question of whether to routinely do so is a no-brainer.

“The bottom line is, if you have CD, it [should be] routine that during your annual follow-ups you check for the possibility of the onset of other autoimmune disease. And people with other autoimmune diseases, like type 1 diabetes, should also be screened for CD because of the comorbidity,” said Dr. Fasano, professor of pediatrics and gastroenterology at Harvard Medical School and professor of nutrition at the Harvard School of Public Health, both in Boston. “This is what we call good clinical practice.”
 

Screening, despite lack of consensus guidelines

Other CD specialists differ on the need for universal cross-screening but agree that, at least in some cases, people with one autoimmune disorder should be tested for others.

Jolanda Denham, MD, a pediatric gastroenterologist affiliated with Nemours Children’s Hospital in Orlando, routinely recommends that her patients with CD be screened for certain autoimmune disorders – such as type 1 diabetes and autoimmune thyroid and liver diseases – even though medical organizations have not developed clear consensus or standard guidelines on cross-screening.

“There currently is no evidence to support the screening of celiac patients for all autoimmune and rheumatologic disorders,” she said. “It is true that celiac disease is an autoimmune disorder, and as such, there is a definite increased risk of these disorders in patients with celiac disease and vice versa.”

Echoing Dr. Denham, New York–based gastroenterologist Benjamin Lebwohl, MD, president of the Society for the Study of Celiac Disease, urges physicians to look beyond consensus guidelines and to err on the side of caution and make the best decisions for their patients on a case-by-case basis.

“Given the increased risk of certain autoimmune conditions in people with celiac disease, it behooves physicians to have a low threshold to evaluate for these conditions if any suggestive symptoms are present,” said Dr. Lebwohl, director of clinical research at the Celiac Disease Center at Columbia University, New York.

“Whether to screen for these conditions among people who are entirely without symptoms is less certain, and there is no consensus on that. But it is reasonable and common to include some basic tests with annual blood work, such as thyroid function and a liver profile, since both autoimmune thyroid disease and autoimmune liver disease can be silent early on and the patient would potentially benefit from identification and treatment of these conditions,” he said.

The American Diabetes Association and the International Society of Pediatric and Adolescent Diabetes do recommend that people with diabetes be screened for CD years after diagnosis, noted Robert Rapaport, MD, a pediatric endocrinologist, with Kravis Children’s Hospital, New York. But in a study published in 2021, he and colleagues found that this wasn’t occurring, which prompted them to recommend yearly screening.

“There is a consensus that in children with type 1 diabetes, we screen them for other autoimmune disorders, specifically for thyroid disease and celiac disease,” said Dr. Rapaport, who is also Emma Elizabeth Sullivan Professor of Pediatric Endocrinology and Diabetes at Icahn School of Medicine at Mount Sinai, New York. “But there is no consensus going the other way – for patients with celiac disease, what other autoimmune conditions they should be screened for.”

This hasn’t kept some doctors from extending cross-screening efforts to their patients.

“At our center, we screen ... for thyroid disease and autoimmune liver disease as part of routine healthcare maintenance for our celiac disease patients. We discuss symptoms of diabetes and send screening with [hemoglobin] A1c for anyone who has symptoms,” said Lui Edwin, MD, a pediatric gastroenterologist with Children’s Hospital Colorado, Aurora, and director of the Colorado Center for Celiac Disease, who delivered a lecture on CD-autoimmune screening at the International Celiac Disease Symposium in October.

“It is definitely worth screening for celiac disease in [those with] other autoimmune disorders,” Dr. Edwin added.

“The symptoms can be very heterogeneous. Diagnosing and treating celiac disease can make a huge impact with respect to symptoms, quality of life, and preventing disease-related complications,” he said.
 

Mounting evidence linking CD to autoimmune disorders

Many studies have linked CD to a variety of other autoimmune disorders. The association could be due to common genetic factors or because CD might lead to such conditions. Researchers have found that people diagnosed with CD later in life are more likely to develop other autoimmune disorders.

Going gluten free has preventive advantages

In a landmark 2012 study, researchers with the Celiac Disease Center at Columbia University stopped short of recommending routine screening for the general public or asymptomatic individuals in high-prevalence groups. But they concluded that more screening of symptomatic individuals – and close relatives – would speed treatment for those with more than one autoimmune disorder.

They also noted that some studies have found that a gluten-free diet might help prevent the development of other autoimmune disorders.

Marisa Gallant Stahl, MD, a gastroenterologist with Children’s Hospital Colorado, agreed that it is important that physicians keep gluten-free diets in mind when determining which patients to cross-screen.

“The literature is mixed, but some studies suggest that treating celiac disease with a gluten-free diet actually augments the treatment and control of other autoimmune disorders [and] adherence to a gluten-free diet does reduce the risk of cancer associated with celiac disease,” she said.

Dr. Denham agreed. “Strict adherence to a gluten-free diet definitely protects against the development of enteropathy-associated T-cell lymphoma but may be protective against non-Hodgkin’s lymphoma and adenocarcinoma of the small intestine as well. All three are associated with long-term nonadherence to a gluten-free diet.”

She also noted that a gluten-free diet may help people with CD manage other autoimmune disorders, which can be complicated by CD.

“Good control of celiac disease will help prevent complications that can worsen symptoms and outcomes of concomitant autoimmune and rheumatologic disorders,” she said.
 

Other factors to consider

Dr. Fasano added that autoimmune disorders can be complicated by CD in cases in which oral medications or healthful foods are not properly absorbed in the intestines.

“For example, with Hashimoto’s disease, if you have hormone replacement with oral treatments and your intestines are not 100% functional because you have inflammation, then you may have a problem [with] the absorption of medications like levothyroxine,” he said.

“It’s the same story with diabetes. You don’t take insulin by mouth, but glucose [control] strongly depends on several factors, mostly what comes from the diet, and if it’s erratic, that can be a problem. ... So, the treatment of autoimmune diseases can be influenced by celiac disease,” he said.

In addition, Dr. Fasano and others believe that people with CD and other autoimmune disorders should be managed by a team of experts who can personalize the care on the basis of specific needs of the individual patient. These should include specialists, dietitians, mental health counselors, and family social workers.

“It has to be a multidisciplinary approach to maintain the good health of an individual,” Dr. Fasano said. “Celiac disease is the quintessential example in which the primary care physician needs to be the quarterback of the team, the patient is active in his or her health, and [specialists] not only deliver personalized care but also preventive intervention, particularly the prevention of comorbidities.”

Financial disclosures for those quoted in this article were not available at the time of publication.

A version of this article first appeared on Medscape.com.