A psychiatrist was treating a couple individually, one of whom was HIV-positive. During a session, the infected partner revealed he was having sex with other men outside the relationship and not using safe sex practices.

“He was being treated for major depression and anxiety at the time,” explained the anonymous psychiatrist.  “I strongly encouraged him to tell his partner, but he was scared of doing so. He stated that they had not been using safe sex practices between the two of them, but he was willing to start at that point.”

At a session with the HIV-negative partner, the psychiatrist inquired about the couple’s current sex practices. The HIV-negative partner reported no changes and said the two continued to have sex without condoms, said the psychiatrist, who shared the experience in Medscape’s Ethics 2020 Survey open-ended questions.

“My dilemma now was whether or not to inform him about his partner’s ‘extracurricular sex behavior,’ the psychiatrist said. “Since he was now at greater risk of contracting HIV, I felt compelled to do something to intervene.”

What would you do in this situation?

Hearing about infidelity while treating two family members is a bothersome ethical quandary for many physicians, according to responses from the Ethics 2020 Report. When asked to share their toughest ethical dilemma, one internist for example, wrote, “I have couples as patients, and it is very challenging if they reveal infidelity or separate/divorce; I cannot reveal info to the spouse, but it makes me very uncomfortable caring for both.” Similarly, an obstetrician-gynecologist wrote about her experience counseling patients who reveal extramarital affairs.

“Women confide deeply with their gynecologist, and although I was not successful in rescuing 100% of them, the majority accepted my counseling and saved their marriages,” the anonymous ob/gyn wrote. “In every case in which my patient was willing to resume her marital relationship, I always ensured that she advised her spouse of the infidelity, and the couple was referred to a qualified provider for marriage counseling.”

When a sexually transmitted infection (STI) comes into play however, physicians describe a deeper level of internal conflict. A family physician wrote her top ethical dilemma was “Cheating spouses and STIs: how do you get the other spouse treated?” An ob-gyn stated that, “disclosure of STI status in couples when this may indicate infidelity,” was a frequent ethical issue in her specialty. Commenters on Medscape’s recent story, “The Secret I’ll Take to my Grave: Doc Reveals,” also raised the uncomfortable topic. One physician recalled a deaf female patient who requested in writing not to test for syphilis and not to discuss the issue with her husband. “Patient knew that she had syphilis, but she did not want her husband to know,” the physician wrote.    

It’s not uncommon for physicians to encounter such scenarios when treating long-term couples, especially in the digital era, said Shannon Dowler, MD, chief medical officer for North Carolina Medicaid and a family physician at the Buncombe County STI Clinic.

“This is definitely something I think we see more of in our age of ‘hookup apps’ and easier access to casual sexual connections than we did before,” said Dr. Dowler, who serves on the CDC Advisory Committee on HIV, Viral Hepatitis, and STD Prevention and Treatment. 

The topic is particularly timely because of the pandemic’s impact on STI testing and the expected rise in sexually transmitted infection rates over the next year, Dr. Dowler notes.

“People weren’t necessarily coming in for routine screening or testing during the pandemic because they didn’t want to take a chance on being exposed to COVID,” she said. “But also, the reagent used for testing for certain types of transmitted infections was in short supply because they use that same reagent for the COVID test. We had shortages of STI testing in many parts of the country. I expect what we’re going to see over the next year are a lot of diagnoses that were missed during the pandemic and a lot of asymptomatic spread.”
 

What do the experts suggest?

Caring for spouses or two partners when an STI is discovered can be challenging for physicians, particularly in small towns where many people know each other, said Kenneth Goodman, PhD, founder and director of the Institute for Bioethics and Health Policy at the University of Miami.

“This can be a real challenge for family physicians and others in a small town,” he said. “If you discover one partner is positive for a sexually transmitted infection and the other is negative, then you’ve got a challenge to manage. The way to do that is to start with moral persuasion, namely you tell your patient, ‘You really need to disclose this. Because when he or she gets it, chances are, you’re going to be the prime suspect.’ “

Dr. Dowler, who practices in an STI clinic, said she once diagnosed a sexually transmitted infection in a patient who was married to one of Dowler’s coworkers. The patient would not allow the partner to be notified, she said. In this case, Dr. Dowler practiced expedited partner therapy (EPT), the clinical practice of treating sex partners of patients diagnosed with chlamydia or gonorrhea by giving the patient prescriptions or medications to take to the partner without having first examined the partner. The practice is legal to some extent in all states, Dr. Dowler said, but some states have different rules about how the practice can be utilized. 

Physicians are obligated to report communicable diseases to their local health department, Dr. Goodman said. The health department would then do contract tracing and be responsible for conveying the STI diagnosis to any relevant parties. Even so, Dr. Goodman said physicians have a moral obligation to strongly encourage patients to divulge the infection to their partner.

“Doctors should work on being persuasive to change behavior,” he said. “Tell your patients to do the right thing and follow up with them. You should tell patients they have a responsibility to disclose a sexually transmitted infection to any of their partners and a responsibility not to have unprotected sex. Doctors can be very powerful advocates for that.”

Dr. Dowler said if she is treating two partners, and one is diagnosed with a sexually transmitted infection, she generally asks the patient for their consent to disclose the diagnosis to the partner. She ensures a witness, usually a nurse, is present when she asks. If consent is refused, Dr. Dowler guides her treatment to be as protective as possible, she said. A helpful resource for patients is Tellyourpartner.org, a website that sends an anonymous text or email about infection exposure and provides guidance on treatment locations and options.

Of course, if the sexually transmitted infection is HIV, another set of rules apply. As of 2021, 35 states have laws that criminalize HIV exposure. Laws vary, but many hold patients criminally liable if they knowingly expose another party to HIV. Many states and some cities also have ‘partner notification’ laws that require health providers to disclose an HIV diagnosis to the patient’s sex partners or to report the names of sex partners to the health department, if known. 

However, case law on a physician’s duty to warn is mixed, and doctors’ responsibility for STI reporting and partner notification is determined by individual states. Making matters more complex is the fact that some states have recently changed their HIV control requirements, Dr. Dowler said. In North Carolina for example, patients living with HIV who have been virally suppressed for 6 months and who are adherent to medications, are no longer in violation of the control measure if they do not disclose their HIV diagnosis to sex partners or if they don’t wear a condom.

“This means physicians would not have to report a virally suppressed, adequately treated HIV-positive patient who is having unprotected sex or take measures to inform any known sex partners of the diagnosis,” she said. “The landscape is constantly changing so physicians have to be vigilant about their state public health statutes. It’s a tricky area. It takes an already complicated topic and makes it just a little more complicated.”
 

Consider drafting a policy

It’s a good idea to have a policy in place at your practice that addresses such ethical dilemmas before they occur, says Michael Heitt, PsyD, a clinical psychologist on the faculty of Loyola University Maryland in Baltimore, and a member of the Maryland Psychological Association’s Ethics Committee. Dr. Heitt developed a model of ethical reasoning called CLEAR Lenses, which stands for Clinical, Legal, Ethical, Administrative, and Risk management. The approach encourages clinicians to identify often competing factors in the decision-making process before choosing a course of action to take.

In the situation of an unfaithful spouse who contracted an STI for example, the physician should consider clinical issues such as the medical likelihood the unaware partner has the STI, and legal issues such as maintaining the confidentiality of all patient information and possible mandated reporting of STI data, Dr. Heitt said. The lenses overlap since confidentiality is also a key ethical issue, and other ethical issues involve the balance of helping the unaware spouse and not harming the infected spouse, he explained. Administrative issues might include how medical records are maintained and whether the physician documents information about patients’ family members in the medical record, while risk management elements may include informed consent, documentation, and consultation. 

“So, if the physician has a policy about how such matters are dealt with, and patients are informed about this when they come to the practice, this can guide the physician much more easily through this sticky situation,” Dr. Heitt said. “Documentation of the decision-making process in the medical record demonstrates the physician’s thought process should it ever be challenged in the future, and consultation with peers (while disguising the identity of the patients, of course) sets a foundation of what a ‘reasonable standard’ might be in such situations.”

There is also the conflict-avoidant approach, Dr. Heitt said, in which the physician could perform “routine” STI testing if the unaware spouse was due for an appointment soon.

“But of course, this is far from avoiding any conflict; it just kicks the can down the road as there will surely be conflict — and plenty of confusion — if the wife tests positive for an STI,” he said. “In most situations, it is usually best to be brave, do the hard work upfront, and deal with the tough situation then, rather than trying to avoid the probable inevitable difficult conversation.”

As for the psychiatrist who was treating the cheating HIV-positive partner, the physician ultimately convinced both patients to come in for a couple’s session. The doctor allowed for a 2-hour timeframe to encourage discussion of any conflicts and unresolved issues, the psychiatrist said. After several more couple’s sessions, it was apparent the HIV-positive partner wanted out of the relationship, according to the psychiatrist’s account. The physician referred them to a couples’ therapist for ongoing treatment.

“During that same session, the HIV positive partner disclosed his recent behaviors and, as a result, they decided not to have further sexual contact until they could explore this further in therapy,” the psychiatrist wrote. “At last communication the couple decided to end the relationship, and the HIV negative partner remained negative.”

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

A psychiatrist was treating a couple individually, one of whom was HIV-positive. During a session, the infected partner revealed he was having sex with other men outside the relationship and not using safe sex practices.

“He was being treated for major depression and anxiety at the time,” explained the anonymous psychiatrist.  “I strongly encouraged him to tell his partner, but he was scared of doing so. He stated that they had not been using safe sex practices between the two of them, but he was willing to start at that point.”

At a session with the HIV-negative partner, the psychiatrist inquired about the couple’s current sex practices. The HIV-negative partner reported no changes and said the two continued to have sex without condoms, said the psychiatrist, who shared the experience in Medscape’s Ethics 2020 Survey open-ended questions.

“My dilemma now was whether or not to inform him about his partner’s ‘extracurricular sex behavior,’ the psychiatrist said. “Since he was now at greater risk of contracting HIV, I felt compelled to do something to intervene.”

What would you do in this situation?

Hearing about infidelity while treating two family members is a bothersome ethical quandary for many physicians, according to responses from the Ethics 2020 Report. When asked to share their toughest ethical dilemma, one internist for example, wrote, “I have couples as patients, and it is very challenging if they reveal infidelity or separate/divorce; I cannot reveal info to the spouse, but it makes me very uncomfortable caring for both.” Similarly, an obstetrician-gynecologist wrote about her experience counseling patients who reveal extramarital affairs.

“Women confide deeply with their gynecologist, and although I was not successful in rescuing 100% of them, the majority accepted my counseling and saved their marriages,” the anonymous ob/gyn wrote. “In every case in which my patient was willing to resume her marital relationship, I always ensured that she advised her spouse of the infidelity, and the couple was referred to a qualified provider for marriage counseling.”

When a sexually transmitted infection (STI) comes into play however, physicians describe a deeper level of internal conflict. A family physician wrote her top ethical dilemma was “Cheating spouses and STIs: how do you get the other spouse treated?” An ob-gyn stated that, “disclosure of STI status in couples when this may indicate infidelity,” was a frequent ethical issue in her specialty. Commenters on Medscape’s recent story, “The Secret I’ll Take to my Grave: Doc Reveals,” also raised the uncomfortable topic. One physician recalled a deaf female patient who requested in writing not to test for syphilis and not to discuss the issue with her husband. “Patient knew that she had syphilis, but she did not want her husband to know,” the physician wrote.    

It’s not uncommon for physicians to encounter such scenarios when treating long-term couples, especially in the digital era, said Shannon Dowler, MD, chief medical officer for North Carolina Medicaid and a family physician at the Buncombe County STI Clinic.

“This is definitely something I think we see more of in our age of ‘hookup apps’ and easier access to casual sexual connections than we did before,” said Dr. Dowler, who serves on the CDC Advisory Committee on HIV, Viral Hepatitis, and STD Prevention and Treatment. 

The topic is particularly timely because of the pandemic’s impact on STI testing and the expected rise in sexually transmitted infection rates over the next year, Dr. Dowler notes.

“People weren’t necessarily coming in for routine screening or testing during the pandemic because they didn’t want to take a chance on being exposed to COVID,” she said. “But also, the reagent used for testing for certain types of transmitted infections was in short supply because they use that same reagent for the COVID test. We had shortages of STI testing in many parts of the country. I expect what we’re going to see over the next year are a lot of diagnoses that were missed during the pandemic and a lot of asymptomatic spread.”
 

What do the experts suggest?

Caring for spouses or two partners when an STI is discovered can be challenging for physicians, particularly in small towns where many people know each other, said Kenneth Goodman, PhD, founder and director of the Institute for Bioethics and Health Policy at the University of Miami.

“This can be a real challenge for family physicians and others in a small town,” he said. “If you discover one partner is positive for a sexually transmitted infection and the other is negative, then you’ve got a challenge to manage. The way to do that is to start with moral persuasion, namely you tell your patient, ‘You really need to disclose this. Because when he or she gets it, chances are, you’re going to be the prime suspect.’ “

Dr. Dowler, who practices in an STI clinic, said she once diagnosed a sexually transmitted infection in a patient who was married to one of Dowler’s coworkers. The patient would not allow the partner to be notified, she said. In this case, Dr. Dowler practiced expedited partner therapy (EPT), the clinical practice of treating sex partners of patients diagnosed with chlamydia or gonorrhea by giving the patient prescriptions or medications to take to the partner without having first examined the partner. The practice is legal to some extent in all states, Dr. Dowler said, but some states have different rules about how the practice can be utilized. 

Physicians are obligated to report communicable diseases to their local health department, Dr. Goodman said. The health department would then do contract tracing and be responsible for conveying the STI diagnosis to any relevant parties. Even so, Dr. Goodman said physicians have a moral obligation to strongly encourage patients to divulge the infection to their partner.

“Doctors should work on being persuasive to change behavior,” he said. “Tell your patients to do the right thing and follow up with them. You should tell patients they have a responsibility to disclose a sexually transmitted infection to any of their partners and a responsibility not to have unprotected sex. Doctors can be very powerful advocates for that.”

Dr. Dowler said if she is treating two partners, and one is diagnosed with a sexually transmitted infection, she generally asks the patient for their consent to disclose the diagnosis to the partner. She ensures a witness, usually a nurse, is present when she asks. If consent is refused, Dr. Dowler guides her treatment to be as protective as possible, she said. A helpful resource for patients is Tellyourpartner.org, a website that sends an anonymous text or email about infection exposure and provides guidance on treatment locations and options.

Of course, if the sexually transmitted infection is HIV, another set of rules apply. As of 2021, 35 states have laws that criminalize HIV exposure. Laws vary, but many hold patients criminally liable if they knowingly expose another party to HIV. Many states and some cities also have ‘partner notification’ laws that require health providers to disclose an HIV diagnosis to the patient’s sex partners or to report the names of sex partners to the health department, if known. 

However, case law on a physician’s duty to warn is mixed, and doctors’ responsibility for STI reporting and partner notification is determined by individual states. Making matters more complex is the fact that some states have recently changed their HIV control requirements, Dr. Dowler said. In North Carolina for example, patients living with HIV who have been virally suppressed for 6 months and who are adherent to medications, are no longer in violation of the control measure if they do not disclose their HIV diagnosis to sex partners or if they don’t wear a condom.

“This means physicians would not have to report a virally suppressed, adequately treated HIV-positive patient who is having unprotected sex or take measures to inform any known sex partners of the diagnosis,” she said. “The landscape is constantly changing so physicians have to be vigilant about their state public health statutes. It’s a tricky area. It takes an already complicated topic and makes it just a little more complicated.”
 

Consider drafting a policy

It’s a good idea to have a policy in place at your practice that addresses such ethical dilemmas before they occur, says Michael Heitt, PsyD, a clinical psychologist on the faculty of Loyola University Maryland in Baltimore, and a member of the Maryland Psychological Association’s Ethics Committee. Dr. Heitt developed a model of ethical reasoning called CLEAR Lenses, which stands for Clinical, Legal, Ethical, Administrative, and Risk management. The approach encourages clinicians to identify often competing factors in the decision-making process before choosing a course of action to take.

In the situation of an unfaithful spouse who contracted an STI for example, the physician should consider clinical issues such as the medical likelihood the unaware partner has the STI, and legal issues such as maintaining the confidentiality of all patient information and possible mandated reporting of STI data, Dr. Heitt said. The lenses overlap since confidentiality is also a key ethical issue, and other ethical issues involve the balance of helping the unaware spouse and not harming the infected spouse, he explained. Administrative issues might include how medical records are maintained and whether the physician documents information about patients’ family members in the medical record, while risk management elements may include informed consent, documentation, and consultation. 

“So, if the physician has a policy about how such matters are dealt with, and patients are informed about this when they come to the practice, this can guide the physician much more easily through this sticky situation,” Dr. Heitt said. “Documentation of the decision-making process in the medical record demonstrates the physician’s thought process should it ever be challenged in the future, and consultation with peers (while disguising the identity of the patients, of course) sets a foundation of what a ‘reasonable standard’ might be in such situations.”

There is also the conflict-avoidant approach, Dr. Heitt said, in which the physician could perform “routine” STI testing if the unaware spouse was due for an appointment soon.

“But of course, this is far from avoiding any conflict; it just kicks the can down the road as there will surely be conflict — and plenty of confusion — if the wife tests positive for an STI,” he said. “In most situations, it is usually best to be brave, do the hard work upfront, and deal with the tough situation then, rather than trying to avoid the probable inevitable difficult conversation.”

As for the psychiatrist who was treating the cheating HIV-positive partner, the physician ultimately convinced both patients to come in for a couple’s session. The doctor allowed for a 2-hour timeframe to encourage discussion of any conflicts and unresolved issues, the psychiatrist said. After several more couple’s sessions, it was apparent the HIV-positive partner wanted out of the relationship, according to the psychiatrist’s account. The physician referred them to a couples’ therapist for ongoing treatment.

“During that same session, the HIV positive partner disclosed his recent behaviors and, as a result, they decided not to have further sexual contact until they could explore this further in therapy,” the psychiatrist wrote. “At last communication the couple decided to end the relationship, and the HIV negative partner remained negative.”

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

A psychiatrist was treating a couple individually, one of whom was HIV-positive. During a session, the infected partner revealed he was having sex with other men outside the relationship and not using safe sex practices.

“He was being treated for major depression and anxiety at the time,” explained the anonymous psychiatrist.  “I strongly encouraged him to tell his partner, but he was scared of doing so. He stated that they had not been using safe sex practices between the two of them, but he was willing to start at that point.”

At a session with the HIV-negative partner, the psychiatrist inquired about the couple’s current sex practices. The HIV-negative partner reported no changes and said the two continued to have sex without condoms, said the psychiatrist, who shared the experience in Medscape’s Ethics 2020 Survey open-ended questions.

“My dilemma now was whether or not to inform him about his partner’s ‘extracurricular sex behavior,’ the psychiatrist said. “Since he was now at greater risk of contracting HIV, I felt compelled to do something to intervene.”

What would you do in this situation?

Hearing about infidelity while treating two family members is a bothersome ethical quandary for many physicians, according to responses from the Ethics 2020 Report. When asked to share their toughest ethical dilemma, one internist for example, wrote, “I have couples as patients, and it is very challenging if they reveal infidelity or separate/divorce; I cannot reveal info to the spouse, but it makes me very uncomfortable caring for both.” Similarly, an obstetrician-gynecologist wrote about her experience counseling patients who reveal extramarital affairs.

“Women confide deeply with their gynecologist, and although I was not successful in rescuing 100% of them, the majority accepted my counseling and saved their marriages,” the anonymous ob/gyn wrote. “In every case in which my patient was willing to resume her marital relationship, I always ensured that she advised her spouse of the infidelity, and the couple was referred to a qualified provider for marriage counseling.”

When a sexually transmitted infection (STI) comes into play however, physicians describe a deeper level of internal conflict. A family physician wrote her top ethical dilemma was “Cheating spouses and STIs: how do you get the other spouse treated?” An ob-gyn stated that, “disclosure of STI status in couples when this may indicate infidelity,” was a frequent ethical issue in her specialty. Commenters on Medscape’s recent story, “The Secret I’ll Take to my Grave: Doc Reveals,” also raised the uncomfortable topic. One physician recalled a deaf female patient who requested in writing not to test for syphilis and not to discuss the issue with her husband. “Patient knew that she had syphilis, but she did not want her husband to know,” the physician wrote.    

It’s not uncommon for physicians to encounter such scenarios when treating long-term couples, especially in the digital era, said Shannon Dowler, MD, chief medical officer for North Carolina Medicaid and a family physician at the Buncombe County STI Clinic.

“This is definitely something I think we see more of in our age of ‘hookup apps’ and easier access to casual sexual connections than we did before,” said Dr. Dowler, who serves on the CDC Advisory Committee on HIV, Viral Hepatitis, and STD Prevention and Treatment. 

The topic is particularly timely because of the pandemic’s impact on STI testing and the expected rise in sexually transmitted infection rates over the next year, Dr. Dowler notes.

“People weren’t necessarily coming in for routine screening or testing during the pandemic because they didn’t want to take a chance on being exposed to COVID,” she said. “But also, the reagent used for testing for certain types of transmitted infections was in short supply because they use that same reagent for the COVID test. We had shortages of STI testing in many parts of the country. I expect what we’re going to see over the next year are a lot of diagnoses that were missed during the pandemic and a lot of asymptomatic spread.”
 

What do the experts suggest?

Caring for spouses or two partners when an STI is discovered can be challenging for physicians, particularly in small towns where many people know each other, said Kenneth Goodman, PhD, founder and director of the Institute for Bioethics and Health Policy at the University of Miami.

“This can be a real challenge for family physicians and others in a small town,” he said. “If you discover one partner is positive for a sexually transmitted infection and the other is negative, then you’ve got a challenge to manage. The way to do that is to start with moral persuasion, namely you tell your patient, ‘You really need to disclose this. Because when he or she gets it, chances are, you’re going to be the prime suspect.’ “

Dr. Dowler, who practices in an STI clinic, said she once diagnosed a sexually transmitted infection in a patient who was married to one of Dowler’s coworkers. The patient would not allow the partner to be notified, she said. In this case, Dr. Dowler practiced expedited partner therapy (EPT), the clinical practice of treating sex partners of patients diagnosed with chlamydia or gonorrhea by giving the patient prescriptions or medications to take to the partner without having first examined the partner. The practice is legal to some extent in all states, Dr. Dowler said, but some states have different rules about how the practice can be utilized. 

Physicians are obligated to report communicable diseases to their local health department, Dr. Goodman said. The health department would then do contract tracing and be responsible for conveying the STI diagnosis to any relevant parties. Even so, Dr. Goodman said physicians have a moral obligation to strongly encourage patients to divulge the infection to their partner.

“Doctors should work on being persuasive to change behavior,” he said. “Tell your patients to do the right thing and follow up with them. You should tell patients they have a responsibility to disclose a sexually transmitted infection to any of their partners and a responsibility not to have unprotected sex. Doctors can be very powerful advocates for that.”

Dr. Dowler said if she is treating two partners, and one is diagnosed with a sexually transmitted infection, she generally asks the patient for their consent to disclose the diagnosis to the partner. She ensures a witness, usually a nurse, is present when she asks. If consent is refused, Dr. Dowler guides her treatment to be as protective as possible, she said. A helpful resource for patients is Tellyourpartner.org, a website that sends an anonymous text or email about infection exposure and provides guidance on treatment locations and options.

Of course, if the sexually transmitted infection is HIV, another set of rules apply. As of 2021, 35 states have laws that criminalize HIV exposure. Laws vary, but many hold patients criminally liable if they knowingly expose another party to HIV. Many states and some cities also have ‘partner notification’ laws that require health providers to disclose an HIV diagnosis to the patient’s sex partners or to report the names of sex partners to the health department, if known. 

However, case law on a physician’s duty to warn is mixed, and doctors’ responsibility for STI reporting and partner notification is determined by individual states. Making matters more complex is the fact that some states have recently changed their HIV control requirements, Dr. Dowler said. In North Carolina for example, patients living with HIV who have been virally suppressed for 6 months and who are adherent to medications, are no longer in violation of the control measure if they do not disclose their HIV diagnosis to sex partners or if they don’t wear a condom.

“This means physicians would not have to report a virally suppressed, adequately treated HIV-positive patient who is having unprotected sex or take measures to inform any known sex partners of the diagnosis,” she said. “The landscape is constantly changing so physicians have to be vigilant about their state public health statutes. It’s a tricky area. It takes an already complicated topic and makes it just a little more complicated.”
 

Consider drafting a policy

It’s a good idea to have a policy in place at your practice that addresses such ethical dilemmas before they occur, says Michael Heitt, PsyD, a clinical psychologist on the faculty of Loyola University Maryland in Baltimore, and a member of the Maryland Psychological Association’s Ethics Committee. Dr. Heitt developed a model of ethical reasoning called CLEAR Lenses, which stands for Clinical, Legal, Ethical, Administrative, and Risk management. The approach encourages clinicians to identify often competing factors in the decision-making process before choosing a course of action to take.

In the situation of an unfaithful spouse who contracted an STI for example, the physician should consider clinical issues such as the medical likelihood the unaware partner has the STI, and legal issues such as maintaining the confidentiality of all patient information and possible mandated reporting of STI data, Dr. Heitt said. The lenses overlap since confidentiality is also a key ethical issue, and other ethical issues involve the balance of helping the unaware spouse and not harming the infected spouse, he explained. Administrative issues might include how medical records are maintained and whether the physician documents information about patients’ family members in the medical record, while risk management elements may include informed consent, documentation, and consultation. 

“So, if the physician has a policy about how such matters are dealt with, and patients are informed about this when they come to the practice, this can guide the physician much more easily through this sticky situation,” Dr. Heitt said. “Documentation of the decision-making process in the medical record demonstrates the physician’s thought process should it ever be challenged in the future, and consultation with peers (while disguising the identity of the patients, of course) sets a foundation of what a ‘reasonable standard’ might be in such situations.”

There is also the conflict-avoidant approach, Dr. Heitt said, in which the physician could perform “routine” STI testing if the unaware spouse was due for an appointment soon.

“But of course, this is far from avoiding any conflict; it just kicks the can down the road as there will surely be conflict — and plenty of confusion — if the wife tests positive for an STI,” he said. “In most situations, it is usually best to be brave, do the hard work upfront, and deal with the tough situation then, rather than trying to avoid the probable inevitable difficult conversation.”

As for the psychiatrist who was treating the cheating HIV-positive partner, the physician ultimately convinced both patients to come in for a couple’s session. The doctor allowed for a 2-hour timeframe to encourage discussion of any conflicts and unresolved issues, the psychiatrist said. After several more couple’s sessions, it was apparent the HIV-positive partner wanted out of the relationship, according to the psychiatrist’s account. The physician referred them to a couples’ therapist for ongoing treatment.

“During that same session, the HIV positive partner disclosed his recent behaviors and, as a result, they decided not to have further sexual contact until they could explore this further in therapy,” the psychiatrist wrote. “At last communication the couple decided to end the relationship, and the HIV negative partner remained negative.”

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

Douglas Flora, MD, an oncologist with St. Elizabeth Healthcare, in Edgewood, Ky., considers himself a deep empath. It’s one reason he became an oncologist.

But when he was diagnosed with kidney cancer in 2017, he was shocked at the places his brain took him. His mind fast-forwarded through treatment options, statistical probabilities, and anguish over his wife and children.

“It’s a very surreal experience,” Dr. Flora said. “In 20 seconds, you go from diagnostics to, ‘What videos will I have to film for my babies?’ “

He could be having a wonderful evening surrounded by friends, music, and beer. Then he would go to the restroom and the realization of what was lurking inside his would body hit him like a brick.

“It’s like the scene in the Harry Potter movies where the Dementors fly over,” he explained. “Everything feels dark. There’s no hope. Everything you thought was good is gone.”

Oncologists counsel patients through life-threatening diagnoses and frightening decisions every day, so one might think they’d be ready to confront their own diagnosis, treatment, and mortality better than anyone. But that’s not always the case.

So, what happens when oncology practitioners trade their white coat for a hospital gown? Does their expertise equip them to navigate their diagnosis and treatment better than their patients? How does the emotional toll of their personal cancer journey change the way they interact with their patients?
 

Navigating the diagnosis and treatment

In January 2017, Karen Hendershott, MD, a breast surgical oncologist, felt a lump in her armpit while taking a shower. The blunt force of her fate came into view in an instant: It was almost certainly a locally advanced breast cancer that had spread to her lymph nodes and would require surgery, radiotherapy, and chemotherapy.

She said a few unprintable words and headed to work at St. Mary’s Hospital, in Tucson, Ariz., where her assumptions were confirmed.

Taylor Riall, MD, PhD, also suspected cancer.

Last December, Dr. Riall, a general surgeon and surgical oncologist at the University of Arizona Cancer Center, in Tucson, developed a persistent cough. An x-ray revealed a mass in her lung. Initially, she was misdiagnosed with a fungal infection and was given medication that made her skin peel off.

Doctors advised Dr. Riall to monitor her condition for another 6 months. But her knowledge of oncology made her think cancer, so she insisted on more tests. In June 2021, a biopsy confirmed she had lung cancer.

Having oncology expertise helped Dr. Riall and Dr. Hendershott recognize the signs of cancer and push for a diagnosis. But there are also downsides to being hyper-informed, Dr. Hendershott, said.

“I think sometimes knowing everything at once is harder vs. giving yourself time to wrap your mind around this and do it in baby steps,” she explained. “There weren’t any baby steps here.”

Still, oncology practitioners who are diagnosed with cancer are navigating a familiar landscape and are often buoyed by a support network of expert colleagues. That makes a huge difference psychologically, explained Shenitha Edwards, a pharmacy technician at Cancer Specialists of North Florida, in Jacksonville, who was diagnosed with breast cancer in July.

“I felt stronger and a little more ready to fight because I had resources, whereas my patients sometimes do not,” Ms. Edwards said. “I was connected with a lot of people who could help me make informed decisions, so I didn’t have to walk so much in fear.”

It can also prepare practitioners to make bold treatment choices. In Dr. Riall’s case, surgeons were reluctant to excise her tumor because they would have to remove the entire upper lobe of her lung, and she is a marathoner and triathlete. Still, because of her surgical oncology experience, Dr. Riall didn’t flinch at the prospect of a major operation.

“I was, like, ‘Look, just take it out.’ I’m less afraid to have cancer than I am to not know and let it grow,” said Dr. Riall, whose Peloton name is WhoNeeds2Lungs.

Similarly, Dr. Hendershott’s experience gave her the assurance to pursue a more intense strategy. “Because I had a really candid understanding of the risks and what the odds looked like, it helped me be more comfortable with a more aggressive approach,” she said. “There wasn’t a doubt in my mind, particularly [having] a 10-year-old child, that I wanted to do everything I could, and even do a couple of things that were still in clinical trials.”

Almost paradoxically, Mark Lewis’ oncology training gave him the courage to risk watching and waiting after finding benign growths in his parathyroid and malignant tumors in his pancreas. Dr. Lewis monitored the tumors amassing in his pancreas for 8 years. When some grew so large they threatened to metastasize to his liver, he underwent the Whipple procedure to remove the head of the pancreas, part of the small intestine, and the gallbladder.

“It was a bit of a gamble, but one that paid off and allowed me to get my career off the ground and have another child,” said Dr. Lewis, a gastrointestinal oncologist at Intermountain Healthcare, in Salt Lake City. Treating patients for nearly a decade also showed him how fortunate he was to have a slow-growing, operable cancer. That gratitude, he said, gave him mental strength to endure the ordeal.

Whether taking a more aggressive or minimalist approach to their own care, each practitioner’s decision was deeply personal and deeply informed by their oncology expertise.

Although research on this question is scarce, studies show that differences in end-of-life care may occur. According to a 2016 study published in JAMA, physicians choose significantly less intensive end-stage care in three of five categories — undergoing surgery, being admitted to the intensive care unit (ICU), and dying in the hospital — than the general U.S. population. The reason, the researchers posited, is because doctors know these eleventh-hour interventions are typically brutal and futile.

But these differences were fairly small, and a 2019 study published in JAMA Open Network found the opposite: Physicians with cancer were more likely to die in an ICU and receive chemotherapy in the last 6 months of life, suggesting a more aggressive approach to end-of-life care.

When it comes to their own long-term or curative cancer care, oncologists generally don’t seem to approach treatment differently than their patients. In a 2015 study, researchers compared two groups of people with early breast cancer — 46 physicians and 230 well-educated, nonmedically qualified patients — and found no differences in the choices the groups made about whether to undergo mastectomy, chemotherapy, radiotherapy, or breast reconstruction.

Still, no amount of oncology expertise can fully prepare a person for the emotional crucible of cancer.
 

“A very surreal experience”

Although the fear can become less intense and more manageable over time, it may never truly go away.

At first, despair dragged Flora into an abyss for 6 hours a night, then overcame him 10 times a day, then gripped him briefly at random moments. Four years later and cancer-free, the dread still returns.

Hendershott cried every time she got into her car and contemplated her prognosis. Now 47, she has about a 60% chance of being alive in 15 years, and the fear still hits her.

“I think it’s hard to understand the moments of sheer terror that you have at 2 AM when you’re confronting your own mortality,” she said. “The implications that has not just for you but more importantly for the people that you love and want to protect. That just kind of washes over you in waves that you don’t have much control over.”

Cancer, Riall felt, had smashed her life, but she figured out a way to help herself cope. Severe blood loss, chest tubes, and tests and needles ad nauseum left Riall feeling excruciatingly exhausted after her surgery and delayed her return to work. At the same time, she was passed over for a promotion. Frustrated and dejected, she took comfort in the memory of doing Kintsugi with her surgery residents. The Japanese art form involves shattering pottery with a hammer, fitting the fragments back together, and painting the cracks gold.

“My instinct as a surgeon is to pick up those pieces and put them back together so nobody sees it’s broken,” she reflected. But as a patient, she learned that an important part of recovery is to allow yourself to sit in a broken state and feel angry, miserable, and betrayed by your body. And then examine your shattered priorities and consider how you want to reassemble them.

For Barbara Buttin, MD, a gynecologic oncologist at Cancer Treatment Centers of America, in Chicago, Illinois, it wasn’t cancer that almost took her life. Rather, a near-death experience and life-threatening diagnosis made her a better, more empathetic cancer doctor — a refrain echoed by many oncologist-patients. Confronting her own mortality crystallized what matters in life. She uses that understanding to make sure she understands what matters to her patients ― what they care about most, what their greatest fear is, what is going to keep them up at night.
 

“We’re part of the same club”

Ultimately, when oncology practitioners become patients, it balances the in-control and vulnerable, the rational and emotional. And their patients respond positively.

In fall 2020, oncology nurse Jenn Adams, RN, turned 40 and underwent her first mammogram. Unexpectedly, it revealed invasive stage I cancer that would require a double mastectomy, chemotherapy, and a year of immunotherapy. A week after her diagnosis, she was scheduled to start a new job at Cancer Clinic, in Bryan, Tex. So, she asked her manager if she could become a patient and an employee.

Ms. Adams worked 5 days a week, but every Thursday at 2 PM, she sat next to her patients while her coworkers became her nurses. Her chemo port was implanted, she lost her hair, and she felt terrible along with her patients. “It just created this incredible bond,” said the mother of three.

Having cancer, Dr. Flora said, “was completely different than I had imagined. When I thought I was walking with [my patients] in the depths of their caves, I wasn’t even visiting their caves.” But, he added, it has also “let me connect with [patients] on a deeper level because we’re part of the same club. You can see their body language change when I share that. They almost relax, like, ‘Oh, this guy gets it. He does understand how terrified I am.’ And I do.”

When Dr. Flora’s patients are scanned, he gives them their results immediately, because he knows what it’s like to wait on tenterhooks. He tells his patients to text him anytime they’re afraid or depressed, which he admits isn’t great for his own mental health but believes is worth it.

Likewise, Dr. Hendershott can hold out her shoulder-length locks to reassure a crying patient that hair does grow back after chemo. She can describe her experience with hormone-blocking pills to allay the fears of a pharmaceutical skeptic.

This role equalizer fosters so much empathy that doctors sometimes find themselves being helped by their patients. When one of Dr. Flora’s patients heard he had cancer, she sent him an email that began. “A wise doctor once told me....” and repeated the advice he’d given her years before.

Dr. Lewis has a special bond with his patients because people who have pancreatic neuroendocrine tumors seek him out for treatment. “I’m getting to take care of people who, on some level, are like my kindred spirits,” he said. “So, I get to see their coping mechanisms and how they do.”

Ms. Edwards told some of her patients about her breast cancer diagnosis, and now they give each other high-fives and share words of encouragement. “I made it a big thing of mine to associate my patients as my family,” she said. “If you’ve learned to embrace love and love people, there’s nothing you wouldn’t do for people. I’ve chosen that to be my practice when I’m dealing with all of my patients.”

Ms. Adams is on a similar mission. She joined a group of moms with cancer so she can receive guidance and then become a guide for others. “I feel like that’s what I want to be at my cancer practice,” she said, “so [my patients] have someone to say, ‘I’m gonna walk alongside you because I’ve been there.’ “

That transformation has made all the heartbreaking moments worth it, Ms. Adams said. “I love the oncology nurse that I get to be now because of my diagnosis. I don’t love the diagnosis. But I love the way it’s changed what I do.”

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

Douglas Flora, MD, an oncologist with St. Elizabeth Healthcare, in Edgewood, Ky., considers himself a deep empath. It’s one reason he became an oncologist.

But when he was diagnosed with kidney cancer in 2017, he was shocked at the places his brain took him. His mind fast-forwarded through treatment options, statistical probabilities, and anguish over his wife and children.

“It’s a very surreal experience,” Dr. Flora said. “In 20 seconds, you go from diagnostics to, ‘What videos will I have to film for my babies?’ “

He could be having a wonderful evening surrounded by friends, music, and beer. Then he would go to the restroom and the realization of what was lurking inside his would body hit him like a brick.

“It’s like the scene in the Harry Potter movies where the Dementors fly over,” he explained. “Everything feels dark. There’s no hope. Everything you thought was good is gone.”

Oncologists counsel patients through life-threatening diagnoses and frightening decisions every day, so one might think they’d be ready to confront their own diagnosis, treatment, and mortality better than anyone. But that’s not always the case.

So, what happens when oncology practitioners trade their white coat for a hospital gown? Does their expertise equip them to navigate their diagnosis and treatment better than their patients? How does the emotional toll of their personal cancer journey change the way they interact with their patients?
 

Navigating the diagnosis and treatment

In January 2017, Karen Hendershott, MD, a breast surgical oncologist, felt a lump in her armpit while taking a shower. The blunt force of her fate came into view in an instant: It was almost certainly a locally advanced breast cancer that had spread to her lymph nodes and would require surgery, radiotherapy, and chemotherapy.

She said a few unprintable words and headed to work at St. Mary’s Hospital, in Tucson, Ariz., where her assumptions were confirmed.

Taylor Riall, MD, PhD, also suspected cancer.

Last December, Dr. Riall, a general surgeon and surgical oncologist at the University of Arizona Cancer Center, in Tucson, developed a persistent cough. An x-ray revealed a mass in her lung. Initially, she was misdiagnosed with a fungal infection and was given medication that made her skin peel off.

Doctors advised Dr. Riall to monitor her condition for another 6 months. But her knowledge of oncology made her think cancer, so she insisted on more tests. In June 2021, a biopsy confirmed she had lung cancer.

Having oncology expertise helped Dr. Riall and Dr. Hendershott recognize the signs of cancer and push for a diagnosis. But there are also downsides to being hyper-informed, Dr. Hendershott, said.

“I think sometimes knowing everything at once is harder vs. giving yourself time to wrap your mind around this and do it in baby steps,” she explained. “There weren’t any baby steps here.”

Still, oncology practitioners who are diagnosed with cancer are navigating a familiar landscape and are often buoyed by a support network of expert colleagues. That makes a huge difference psychologically, explained Shenitha Edwards, a pharmacy technician at Cancer Specialists of North Florida, in Jacksonville, who was diagnosed with breast cancer in July.

“I felt stronger and a little more ready to fight because I had resources, whereas my patients sometimes do not,” Ms. Edwards said. “I was connected with a lot of people who could help me make informed decisions, so I didn’t have to walk so much in fear.”

It can also prepare practitioners to make bold treatment choices. In Dr. Riall’s case, surgeons were reluctant to excise her tumor because they would have to remove the entire upper lobe of her lung, and she is a marathoner and triathlete. Still, because of her surgical oncology experience, Dr. Riall didn’t flinch at the prospect of a major operation.

“I was, like, ‘Look, just take it out.’ I’m less afraid to have cancer than I am to not know and let it grow,” said Dr. Riall, whose Peloton name is WhoNeeds2Lungs.

Similarly, Dr. Hendershott’s experience gave her the assurance to pursue a more intense strategy. “Because I had a really candid understanding of the risks and what the odds looked like, it helped me be more comfortable with a more aggressive approach,” she said. “There wasn’t a doubt in my mind, particularly [having] a 10-year-old child, that I wanted to do everything I could, and even do a couple of things that were still in clinical trials.”

Almost paradoxically, Mark Lewis’ oncology training gave him the courage to risk watching and waiting after finding benign growths in his parathyroid and malignant tumors in his pancreas. Dr. Lewis monitored the tumors amassing in his pancreas for 8 years. When some grew so large they threatened to metastasize to his liver, he underwent the Whipple procedure to remove the head of the pancreas, part of the small intestine, and the gallbladder.

“It was a bit of a gamble, but one that paid off and allowed me to get my career off the ground and have another child,” said Dr. Lewis, a gastrointestinal oncologist at Intermountain Healthcare, in Salt Lake City. Treating patients for nearly a decade also showed him how fortunate he was to have a slow-growing, operable cancer. That gratitude, he said, gave him mental strength to endure the ordeal.

Whether taking a more aggressive or minimalist approach to their own care, each practitioner’s decision was deeply personal and deeply informed by their oncology expertise.

Although research on this question is scarce, studies show that differences in end-of-life care may occur. According to a 2016 study published in JAMA, physicians choose significantly less intensive end-stage care in three of five categories — undergoing surgery, being admitted to the intensive care unit (ICU), and dying in the hospital — than the general U.S. population. The reason, the researchers posited, is because doctors know these eleventh-hour interventions are typically brutal and futile.

But these differences were fairly small, and a 2019 study published in JAMA Open Network found the opposite: Physicians with cancer were more likely to die in an ICU and receive chemotherapy in the last 6 months of life, suggesting a more aggressive approach to end-of-life care.

When it comes to their own long-term or curative cancer care, oncologists generally don’t seem to approach treatment differently than their patients. In a 2015 study, researchers compared two groups of people with early breast cancer — 46 physicians and 230 well-educated, nonmedically qualified patients — and found no differences in the choices the groups made about whether to undergo mastectomy, chemotherapy, radiotherapy, or breast reconstruction.

Still, no amount of oncology expertise can fully prepare a person for the emotional crucible of cancer.
 

“A very surreal experience”

Although the fear can become less intense and more manageable over time, it may never truly go away.

At first, despair dragged Flora into an abyss for 6 hours a night, then overcame him 10 times a day, then gripped him briefly at random moments. Four years later and cancer-free, the dread still returns.

Hendershott cried every time she got into her car and contemplated her prognosis. Now 47, she has about a 60% chance of being alive in 15 years, and the fear still hits her.

“I think it’s hard to understand the moments of sheer terror that you have at 2 AM when you’re confronting your own mortality,” she said. “The implications that has not just for you but more importantly for the people that you love and want to protect. That just kind of washes over you in waves that you don’t have much control over.”

Cancer, Riall felt, had smashed her life, but she figured out a way to help herself cope. Severe blood loss, chest tubes, and tests and needles ad nauseum left Riall feeling excruciatingly exhausted after her surgery and delayed her return to work. At the same time, she was passed over for a promotion. Frustrated and dejected, she took comfort in the memory of doing Kintsugi with her surgery residents. The Japanese art form involves shattering pottery with a hammer, fitting the fragments back together, and painting the cracks gold.

“My instinct as a surgeon is to pick up those pieces and put them back together so nobody sees it’s broken,” she reflected. But as a patient, she learned that an important part of recovery is to allow yourself to sit in a broken state and feel angry, miserable, and betrayed by your body. And then examine your shattered priorities and consider how you want to reassemble them.

For Barbara Buttin, MD, a gynecologic oncologist at Cancer Treatment Centers of America, in Chicago, Illinois, it wasn’t cancer that almost took her life. Rather, a near-death experience and life-threatening diagnosis made her a better, more empathetic cancer doctor — a refrain echoed by many oncologist-patients. Confronting her own mortality crystallized what matters in life. She uses that understanding to make sure she understands what matters to her patients ― what they care about most, what their greatest fear is, what is going to keep them up at night.
 

“We’re part of the same club”

Ultimately, when oncology practitioners become patients, it balances the in-control and vulnerable, the rational and emotional. And their patients respond positively.

In fall 2020, oncology nurse Jenn Adams, RN, turned 40 and underwent her first mammogram. Unexpectedly, it revealed invasive stage I cancer that would require a double mastectomy, chemotherapy, and a year of immunotherapy. A week after her diagnosis, she was scheduled to start a new job at Cancer Clinic, in Bryan, Tex. So, she asked her manager if she could become a patient and an employee.

Ms. Adams worked 5 days a week, but every Thursday at 2 PM, she sat next to her patients while her coworkers became her nurses. Her chemo port was implanted, she lost her hair, and she felt terrible along with her patients. “It just created this incredible bond,” said the mother of three.

Having cancer, Dr. Flora said, “was completely different than I had imagined. When I thought I was walking with [my patients] in the depths of their caves, I wasn’t even visiting their caves.” But, he added, it has also “let me connect with [patients] on a deeper level because we’re part of the same club. You can see their body language change when I share that. They almost relax, like, ‘Oh, this guy gets it. He does understand how terrified I am.’ And I do.”

When Dr. Flora’s patients are scanned, he gives them their results immediately, because he knows what it’s like to wait on tenterhooks. He tells his patients to text him anytime they’re afraid or depressed, which he admits isn’t great for his own mental health but believes is worth it.

Likewise, Dr. Hendershott can hold out her shoulder-length locks to reassure a crying patient that hair does grow back after chemo. She can describe her experience with hormone-blocking pills to allay the fears of a pharmaceutical skeptic.

This role equalizer fosters so much empathy that doctors sometimes find themselves being helped by their patients. When one of Dr. Flora’s patients heard he had cancer, she sent him an email that began. “A wise doctor once told me....” and repeated the advice he’d given her years before.

Dr. Lewis has a special bond with his patients because people who have pancreatic neuroendocrine tumors seek him out for treatment. “I’m getting to take care of people who, on some level, are like my kindred spirits,” he said. “So, I get to see their coping mechanisms and how they do.”

Ms. Edwards told some of her patients about her breast cancer diagnosis, and now they give each other high-fives and share words of encouragement. “I made it a big thing of mine to associate my patients as my family,” she said. “If you’ve learned to embrace love and love people, there’s nothing you wouldn’t do for people. I’ve chosen that to be my practice when I’m dealing with all of my patients.”

Ms. Adams is on a similar mission. She joined a group of moms with cancer so she can receive guidance and then become a guide for others. “I feel like that’s what I want to be at my cancer practice,” she said, “so [my patients] have someone to say, ‘I’m gonna walk alongside you because I’ve been there.’ “

That transformation has made all the heartbreaking moments worth it, Ms. Adams said. “I love the oncology nurse that I get to be now because of my diagnosis. I don’t love the diagnosis. But I love the way it’s changed what I do.”

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

Douglas Flora, MD, an oncologist with St. Elizabeth Healthcare, in Edgewood, Ky., considers himself a deep empath. It’s one reason he became an oncologist.

But when he was diagnosed with kidney cancer in 2017, he was shocked at the places his brain took him. His mind fast-forwarded through treatment options, statistical probabilities, and anguish over his wife and children.

“It’s a very surreal experience,” Dr. Flora said. “In 20 seconds, you go from diagnostics to, ‘What videos will I have to film for my babies?’ “

He could be having a wonderful evening surrounded by friends, music, and beer. Then he would go to the restroom and the realization of what was lurking inside his would body hit him like a brick.

“It’s like the scene in the Harry Potter movies where the Dementors fly over,” he explained. “Everything feels dark. There’s no hope. Everything you thought was good is gone.”

Oncologists counsel patients through life-threatening diagnoses and frightening decisions every day, so one might think they’d be ready to confront their own diagnosis, treatment, and mortality better than anyone. But that’s not always the case.

So, what happens when oncology practitioners trade their white coat for a hospital gown? Does their expertise equip them to navigate their diagnosis and treatment better than their patients? How does the emotional toll of their personal cancer journey change the way they interact with their patients?
 

Navigating the diagnosis and treatment

In January 2017, Karen Hendershott, MD, a breast surgical oncologist, felt a lump in her armpit while taking a shower. The blunt force of her fate came into view in an instant: It was almost certainly a locally advanced breast cancer that had spread to her lymph nodes and would require surgery, radiotherapy, and chemotherapy.

She said a few unprintable words and headed to work at St. Mary’s Hospital, in Tucson, Ariz., where her assumptions were confirmed.

Taylor Riall, MD, PhD, also suspected cancer.

Last December, Dr. Riall, a general surgeon and surgical oncologist at the University of Arizona Cancer Center, in Tucson, developed a persistent cough. An x-ray revealed a mass in her lung. Initially, she was misdiagnosed with a fungal infection and was given medication that made her skin peel off.

Doctors advised Dr. Riall to monitor her condition for another 6 months. But her knowledge of oncology made her think cancer, so she insisted on more tests. In June 2021, a biopsy confirmed she had lung cancer.

Having oncology expertise helped Dr. Riall and Dr. Hendershott recognize the signs of cancer and push for a diagnosis. But there are also downsides to being hyper-informed, Dr. Hendershott, said.

“I think sometimes knowing everything at once is harder vs. giving yourself time to wrap your mind around this and do it in baby steps,” she explained. “There weren’t any baby steps here.”

Still, oncology practitioners who are diagnosed with cancer are navigating a familiar landscape and are often buoyed by a support network of expert colleagues. That makes a huge difference psychologically, explained Shenitha Edwards, a pharmacy technician at Cancer Specialists of North Florida, in Jacksonville, who was diagnosed with breast cancer in July.

“I felt stronger and a little more ready to fight because I had resources, whereas my patients sometimes do not,” Ms. Edwards said. “I was connected with a lot of people who could help me make informed decisions, so I didn’t have to walk so much in fear.”

It can also prepare practitioners to make bold treatment choices. In Dr. Riall’s case, surgeons were reluctant to excise her tumor because they would have to remove the entire upper lobe of her lung, and she is a marathoner and triathlete. Still, because of her surgical oncology experience, Dr. Riall didn’t flinch at the prospect of a major operation.

“I was, like, ‘Look, just take it out.’ I’m less afraid to have cancer than I am to not know and let it grow,” said Dr. Riall, whose Peloton name is WhoNeeds2Lungs.

Similarly, Dr. Hendershott’s experience gave her the assurance to pursue a more intense strategy. “Because I had a really candid understanding of the risks and what the odds looked like, it helped me be more comfortable with a more aggressive approach,” she said. “There wasn’t a doubt in my mind, particularly [having] a 10-year-old child, that I wanted to do everything I could, and even do a couple of things that were still in clinical trials.”

Almost paradoxically, Mark Lewis’ oncology training gave him the courage to risk watching and waiting after finding benign growths in his parathyroid and malignant tumors in his pancreas. Dr. Lewis monitored the tumors amassing in his pancreas for 8 years. When some grew so large they threatened to metastasize to his liver, he underwent the Whipple procedure to remove the head of the pancreas, part of the small intestine, and the gallbladder.

“It was a bit of a gamble, but one that paid off and allowed me to get my career off the ground and have another child,” said Dr. Lewis, a gastrointestinal oncologist at Intermountain Healthcare, in Salt Lake City. Treating patients for nearly a decade also showed him how fortunate he was to have a slow-growing, operable cancer. That gratitude, he said, gave him mental strength to endure the ordeal.

Whether taking a more aggressive or minimalist approach to their own care, each practitioner’s decision was deeply personal and deeply informed by their oncology expertise.

Although research on this question is scarce, studies show that differences in end-of-life care may occur. According to a 2016 study published in JAMA, physicians choose significantly less intensive end-stage care in three of five categories — undergoing surgery, being admitted to the intensive care unit (ICU), and dying in the hospital — than the general U.S. population. The reason, the researchers posited, is because doctors know these eleventh-hour interventions are typically brutal and futile.

But these differences were fairly small, and a 2019 study published in JAMA Open Network found the opposite: Physicians with cancer were more likely to die in an ICU and receive chemotherapy in the last 6 months of life, suggesting a more aggressive approach to end-of-life care.

When it comes to their own long-term or curative cancer care, oncologists generally don’t seem to approach treatment differently than their patients. In a 2015 study, researchers compared two groups of people with early breast cancer — 46 physicians and 230 well-educated, nonmedically qualified patients — and found no differences in the choices the groups made about whether to undergo mastectomy, chemotherapy, radiotherapy, or breast reconstruction.

Still, no amount of oncology expertise can fully prepare a person for the emotional crucible of cancer.
 

“A very surreal experience”

Although the fear can become less intense and more manageable over time, it may never truly go away.

At first, despair dragged Flora into an abyss for 6 hours a night, then overcame him 10 times a day, then gripped him briefly at random moments. Four years later and cancer-free, the dread still returns.

Hendershott cried every time she got into her car and contemplated her prognosis. Now 47, she has about a 60% chance of being alive in 15 years, and the fear still hits her.

“I think it’s hard to understand the moments of sheer terror that you have at 2 AM when you’re confronting your own mortality,” she said. “The implications that has not just for you but more importantly for the people that you love and want to protect. That just kind of washes over you in waves that you don’t have much control over.”

Cancer, Riall felt, had smashed her life, but she figured out a way to help herself cope. Severe blood loss, chest tubes, and tests and needles ad nauseum left Riall feeling excruciatingly exhausted after her surgery and delayed her return to work. At the same time, she was passed over for a promotion. Frustrated and dejected, she took comfort in the memory of doing Kintsugi with her surgery residents. The Japanese art form involves shattering pottery with a hammer, fitting the fragments back together, and painting the cracks gold.

“My instinct as a surgeon is to pick up those pieces and put them back together so nobody sees it’s broken,” she reflected. But as a patient, she learned that an important part of recovery is to allow yourself to sit in a broken state and feel angry, miserable, and betrayed by your body. And then examine your shattered priorities and consider how you want to reassemble them.

For Barbara Buttin, MD, a gynecologic oncologist at Cancer Treatment Centers of America, in Chicago, Illinois, it wasn’t cancer that almost took her life. Rather, a near-death experience and life-threatening diagnosis made her a better, more empathetic cancer doctor — a refrain echoed by many oncologist-patients. Confronting her own mortality crystallized what matters in life. She uses that understanding to make sure she understands what matters to her patients ― what they care about most, what their greatest fear is, what is going to keep them up at night.
 

“We’re part of the same club”

Ultimately, when oncology practitioners become patients, it balances the in-control and vulnerable, the rational and emotional. And their patients respond positively.

In fall 2020, oncology nurse Jenn Adams, RN, turned 40 and underwent her first mammogram. Unexpectedly, it revealed invasive stage I cancer that would require a double mastectomy, chemotherapy, and a year of immunotherapy. A week after her diagnosis, she was scheduled to start a new job at Cancer Clinic, in Bryan, Tex. So, she asked her manager if she could become a patient and an employee.

Ms. Adams worked 5 days a week, but every Thursday at 2 PM, she sat next to her patients while her coworkers became her nurses. Her chemo port was implanted, she lost her hair, and she felt terrible along with her patients. “It just created this incredible bond,” said the mother of three.

Having cancer, Dr. Flora said, “was completely different than I had imagined. When I thought I was walking with [my patients] in the depths of their caves, I wasn’t even visiting their caves.” But, he added, it has also “let me connect with [patients] on a deeper level because we’re part of the same club. You can see their body language change when I share that. They almost relax, like, ‘Oh, this guy gets it. He does understand how terrified I am.’ And I do.”

When Dr. Flora’s patients are scanned, he gives them their results immediately, because he knows what it’s like to wait on tenterhooks. He tells his patients to text him anytime they’re afraid or depressed, which he admits isn’t great for his own mental health but believes is worth it.

Likewise, Dr. Hendershott can hold out her shoulder-length locks to reassure a crying patient that hair does grow back after chemo. She can describe her experience with hormone-blocking pills to allay the fears of a pharmaceutical skeptic.

This role equalizer fosters so much empathy that doctors sometimes find themselves being helped by their patients. When one of Dr. Flora’s patients heard he had cancer, she sent him an email that began. “A wise doctor once told me....” and repeated the advice he’d given her years before.

Dr. Lewis has a special bond with his patients because people who have pancreatic neuroendocrine tumors seek him out for treatment. “I’m getting to take care of people who, on some level, are like my kindred spirits,” he said. “So, I get to see their coping mechanisms and how they do.”

Ms. Edwards told some of her patients about her breast cancer diagnosis, and now they give each other high-fives and share words of encouragement. “I made it a big thing of mine to associate my patients as my family,” she said. “If you’ve learned to embrace love and love people, there’s nothing you wouldn’t do for people. I’ve chosen that to be my practice when I’m dealing with all of my patients.”

Ms. Adams is on a similar mission. She joined a group of moms with cancer so she can receive guidance and then become a guide for others. “I feel like that’s what I want to be at my cancer practice,” she said, “so [my patients] have someone to say, ‘I’m gonna walk alongside you because I’ve been there.’ “

That transformation has made all the heartbreaking moments worth it, Ms. Adams said. “I love the oncology nurse that I get to be now because of my diagnosis. I don’t love the diagnosis. But I love the way it’s changed what I do.”

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

This story was originally published on ProPublica and was co-published with NPR.

When Mai Yang is looking for a patient, she travels light. She dresses deliberately — not too formal, so she won’t be mistaken for a police officer; not too casual, so people will look past her tiny 4-foot-10 stature and youthful face and trust her with sensitive health information. Always, she wears closed-toed shoes, “just in case I need to run.”

Yang carries a stack of cards issued by the Centers for Disease Control and Prevention that show what happens when the Treponema pallidum bacteria invades a patient’s body. There’s a photo of an angry red sore on a penis. There’s one of a tongue, marred by mucus-lined lesions. And there’s one of a newborn baby, its belly, torso and thighs dotted in a rash, its mouth open, as if caught midcry.

It was because of the prospect of one such baby that Yang found herself walking through a homeless encampment on a blazing July day in Huron, Calif., an hour’s drive southwest of her office at the Fresno County Department of Public Health. She was looking for a pregnant woman named Angelica, whose visit to a community clinic had triggered a report to the health department’s sexually transmitted disease program. Angelica had tested positive for syphilis. If she was not treated, her baby could end up like the one in the picture or worse — there was a 40% chance the baby would die.

Ms. Yang knew, though, that if she helped Angelica get treated with three weekly shots of penicillin at least 30 days before she gave birth, it was likely that the infection would be wiped out and her baby would be born without any symptoms at all. Every case of congenital syphilis, when a baby is born with the disease, is avoidable. Each is considered a “sentinel event,” a warning that the public health system is failing.

The alarms are now clamoring. In the United States, more than 129,800 syphilis cases were recorded in 2019, double the case count of five years prior. In the same time period, cases of congenital syphilis quadrupled: 1,870 babies were born with the disease; 128 died. Case counts from 2020 are still being finalized, but the CDC has said that reported cases of congenital syphilis have already exceeded the prior year. Black, Hispanic, and Native American babies are disproportionately at risk.

There was a time, not too long ago, when CDC officials thought they could eliminate the centuries-old scourge from the United States, for adults and babies. But the effort lost steam and cases soon crept up again. Syphilis is not an outlier. The United States goes through what former CDC director Dr. Tom Frieden calls “a deadly cycle of panic and neglect” in which emergencies propel officials to scramble and throw money at a problem — whether that’s Ebola, Zika, or COVID-19. Then, as fear ebbs, so does the attention and motivation to finish the task.

The last fraction of cases can be the hardest to solve, whether that’s eradicating a bug or getting vaccines into arms, yet too often, that’s exactly when political attention gets diverted to the next alarm. The result: The hardest to reach and most vulnerable populations are the ones left suffering, after everyone else looks away.

Ms. Yang first received Angelica’s lab report on June 17. The address listed was a P.O. box, and the phone number belonged to her sister, who said Angelica was living in Huron. That was a piece of luck: Huron is tiny; the city spans just 1.6 square miles. On her first visit, a worker at the Alamo Motel said she knew Angelica and directed Ms. Yang to a nearby homeless encampment. Angelica wasn’t there, so Ms. Yang returned a second time, bringing one of the health department nurses who could serve as an interpreter.

They made their way to the barren patch of land behind Huron Valley Foods, the local grocery store, where people took shelter in makeshift lean-tos composed of cardboard boxes, scrap wood ,and scavenged furniture, draped with sheets that served as ceilings and curtains. Yang stopped outside one of the structures, calling a greeting.

“Hi, I’m from the health department, I’m looking for Angelica.”

The nurse echoed her in Spanish.

Angelica emerged, squinting in the sunlight. Ms. Yang couldn’t tell if she was visibly pregnant yet, as her body was obscured by an oversized shirt. The two women were about the same age: Ms. Yang 26 and Angelica 27. Ms. Yang led her away from the tent, so they could speak privately. Angelica seemed reticent, surprised by the sudden appearance of the two health officers. “You’re not in trouble,” Ms. Yang said, before revealing the results of her blood test.

Angelica had never heard of syphilis.

“Have you been to prenatal care?”

Angelica shook her head. The local clinic had referred her to an obstetrician in Hanford, a 30-minute drive away. She had no car. She also mentioned that she didn’t intend to raise her baby; her two oldest children lived with her mother, and this one likely would, too.

Ms. Yang pulled out the CDC cards, showing them to Angelica and asking if she had experienced any of the symptoms illustrated. No, Angelica said, her lips pursed with disgust.

“Right now you still feel healthy, but this bacteria is still in your body,” Ms. Yang pressed. “You need to get the infection treated to prevent further health complications to yourself and your baby.”

The community clinic was just across the street. “Can we walk you over to the clinic and make sure you get seen so we can get this taken care of?”

Angelica demurred. She said she hadn’t showered for a week and wanted to wash up first. She said she’d go later.

Ms. Yang tried once more to extract a promise: “What time do you think you’ll go?”

“Today, for sure.”

Syphilis is called The Great Imitator: It can look like any number of diseases. In its first stage, the only evidence of infection is a painless sore at the bacteria’s point of entry. Weeks later, as the bacteria multiplies, skin rashes bloom on the palms of the hands and bottoms of the feet. Other traits of this stage include fever, headaches, muscle aches, sore throat, and fatigue. These symptoms eventually disappear and the patient progresses into the latent phase, which betrays no external signs. But if left untreated, after a decade or more, syphilis will reemerge in up to 30% of patients, capable of wreaking horror on a wide range of organ systems. Dr. Marion Sims, president of the American Medical Association in 1876, called it a “terrible scourge, which begins with lamb-like mildness and ends with lion-like rage that ruthlessly destroys everything in its way.”

The corkscrew-shaped bacteria can infiltrate the nervous system at any stage of the infection. Ms. Yang is haunted by her memory of interviewing a young man whose dementia was so severe that he didn’t know why he was in the hospital or how old he was. And regardless of symptoms or stage, the bacteria can penetrate the placenta to infect a fetus. Even in these cases the infection is unpredictable: Many babies are born with normal physical features, but others can have deformed bones or damaged brains, and they can struggle to hear, see, or breathe.

From its earliest days, syphilis has been shrouded in stigma. The first recorded outbreak was in the late 15th century, when Charles VIII led the French army to invade Naples. Italian physicians described French soldiers covered with pustules, dying from a sexually transmitted disease. As the affliction spread, Italians called it the French Disease. The French blamed the Neopolitans. It was also called the German, Polish, or Spanish disease, depending on which neighbor one wanted to blame. Even its name bears the taint of divine judgement: It comes from a 16th-century poem that tells of a shepherd, Syphilus, who offended the god Apollo and was punished with a hideous disease.

By 1937 in America, when former Surgeon General Thomas Parran wrote the book “Shadow on the Land,” he estimated some 680,000 people were under treatment for syphilis; about 60,000 babies were being born annually with congenital syphilis. There was no cure, and the stigma was so strong that public health officials feared even properly documenting cases.

Thanks to Dr. Parran’s ardent advocacy, Congress in 1938 passed the National Venereal Disease Control Act, which created grants for states to set up clinics and support testing and treatment. Other than a short-lived funding effort during World War I, this was the first coordinated federal push to respond to the disease.

Around the same time, the Public Health Service launched an effort to record the natural history of syphilis. Situated in Tuskegee, Ala., the infamous study recruited 600 black men. By the early 1940s, penicillin became widely available and was found to be a reliable cure, but the treatment was withheld from the study participants. Outrage over the ethical violations would cast a stain across syphilis research for decades to come and fuel generations of mistrust in the medical system among Black Americans that continues to this day.

With the introduction of penicillin, cases began to plummet. Twice, the CDC has announced efforts to wipe out the disease — once in the 1960s and again in 1999.

In the latest effort, the CDC announced that the United States had “a unique opportunity to eliminate syphilis within its borders,” thanks to historically low rates, with 80% of counties reporting zero cases. The concentration of cases in the South “identifies communities in which there is a fundamental failure of public health capacity,” the agency noted, adding that elimination — which it defined as fewer than 1,000 cases a year — would “decrease one of our most glaring racial disparities in health.”

Two years after the campaign began, cases started climbing, first among gay men and later, heterosexuals. Cases in women started accelerating in 2013, followed shortly by increasing numbers of babies born with syphilis.The reasons for failure are complex; people relaxed safer sex practices after the advent of potent HIV combination therapies, increased methamphetamine use drove riskier behavior and an explosion of online dating made it hard to track and test sexual partners, according to Dr. Ina Park, medical director of the California Prevention Training Center at the University of California San Francisco.

But federal and state public health efforts were hamstrung from the get-go. In 1999, the CDC said it would need about $35 million to $39 million in new federal funds annually for at least five years to eliminate syphilis. The agency got less than half of what it asked for, according to Jo Valentine, former program coordinator of the CDC’s Syphilis Elimination Effort. As cases rose, the CDC modified its goals in 2006 from 0.4 primary and secondary syphilis cases per 100,000 in population to 2.2 cases per 100,000. By 2013, as elimination seemed less and less viable, the CDC changed its focus to ending congenital syphilis only.

Since then, funding has remained anemic. From 2015 to 2020, the CDC’s budget for preventing sexually transmitted infections grew by 2.2%. Taking inflation into account, that’s a 7.4% reduction in purchasing power. In the same period, cases of syphilis, gonorrhea and chlamydia — the three STDs that have federally funded control programs — increased by nearly 30%.

“We have a long history of nearly eradicating something, then changing our attention, and seeing a resurgence in numbers,” said David Harvey, executive director of the National Coalition of STD Directors. “We have more congenital syphilis cases today in America than we ever had pediatric AIDS at the height of the AIDS epidemic. It’s heartbreaking.”

Adriane Casalotti, chief of government and public affairs at the National Association of County and City Health Officials, warns that the United States should not be surprised to see case counts continue to climb. “The bugs don’t go away,” she said. “They’re just waiting for the next opportunity, when you’re not paying attention.”

Ms. Yang waited until the end of the day, then called the clinic to see if Angelica had gone for her shot. She had not. Ms. Yang would have to block off another half day to visit Huron again, but she had three dozen other cases to deal with.

States in the South and West have seen the highest syphilis rates in recent years. In 2017, 64 babies in Fresno County were born with syphilis at a rate of 440 babies per 100,000 live births — about 19 times the national rate. While the county had managed to lower case counts in the two years that followed, the pandemic threatened to unravel that progress, forcing STD staffers to do COVID-19 contact tracing, pausing field visits to find infected people, and scaring patients from seeking care. Ms. Yang’s colleague handled three cases of stillbirth in 2020; in each, the woman was never diagnosed with syphilis because she feared catching the coronavirus and skipped prenatal care.

Ms. Yang, whose caseload peaked at 70 during a COVID-19 surge, knew she would not be able handle them all as thoroughly as she’d like to. “When I was being mentored by another investigator, he said: ‘You’re not a superhero. You can’t save everybody,’” she said. She prioritizes men who have sex with men, because there’s a higher prevalence of syphilis in that population, and pregnant people, because of the horrific consequences for babies.

The job of a disease intervention specialist isn’t for everyone: It means meeting patients whenever and wherever they are available — in the mop closet of a bus station, in a quiet parking lot — to inform them about the disease, to extract names of sex partners and to encourage treatment. Patients are often reluctant to talk. They can get belligerent, upset that “the government” has their personal information or shattered at the thought that a partner is likely cheating on them. Salaries typically start in the low $40,000s.

Jena Adams, Ms. Yang’s supervisor, has eight investigators working on HIV and syphilis. In the middle of 2020, she lost two and replaced them only recently. “It’s been exhausting,” Ms. Adams said. She has only one specialist who is trained to take blood samples in the field, crucial for guaranteeing that the partners of those who test positive for syphilis also get tested. Ms. Adams wants to get phlebotomy training for the rest of her staff, but it’s $2,000 per person. The department also doesn’t have anyone who can administer penicillin injections in the field; that would have been key when Ms. Yang met Angelica. For a while, a nurse who worked in the tuberculosis program would ride along to give penicillin shots on a volunteer basis. Then he, too, left the health department.

Much of the resources in public health trickle down from the CDC, which distributes money to states, which then parcel it out to counties. The CDC gets its budget from Congress, which tells the agency, by line item, exactly how much money it can spend to fight a disease or virus, in an uncommonly specific manner not seen in many other agencies. The decisions are often politically driven and can be detached from actual health needs.

When the House and Senate appropriations committees meet to decide how much the CDC will get for each line item, they are barraged by lobbyists for individual disease interests. Stephanie Arnold Pang, senior director of policy and government relations at the National Coalition of STD Directors, can pick out the groups by sight: breast cancer wears pink, Alzheimer’s goes in purple, multiple sclerosis comes in orange, HIV in red. STD prevention advocates, like herself, don a green ribbon, but they’re far outnumbered.

And unlike diseases that might already be familiar to lawmakers, or have patient and family spokespeople who can tell their own powerful stories, syphilis doesn’t have many willing poster children. “Congressmen don’t wake up one day and say, ‘Oh hey, there’s congenital syphilis in my jurisdiction.’ You have to raise awareness,” Arnold Pang said. It can be hard jockeying for a meeting. “Some offices might say, ‘I don’t have time for you because we’ve just seen HIV.’ ... Sometimes, it feels like you’re talking into a void.”

The consequences of the political nature of public health funding have become more obvious during the coronavirus pandemic. The 2014 Ebola epidemic was seen as a “global wakeup call” that the world wasn’t prepared for a major pandemic, yet in 2018, the CDC scaled back its epidemic prevention work as money ran out. “If you’ve got to choose between Alzheimer’s research and stopping an outbreak that may not happen? Stopping an outbreak that might not happen doesn’t do well,” said Dr. Frieden, the former CDC director. “The CDC needs to have more money and more flexible money. Otherwise, we’re going to be in this situation long term.”

In May 2021, President Joe Biden’s administration announced it would set aside $7.4 billion over the next five years to hire and train public health workers, including $1.1 billion for more disease intervention specialists like Ms. Yang. Public health officials are thrilled to have the chance to expand their workforce, but some worry the time horizon may be too short. “We’ve seen this movie before, right?” Dr. Frieden said. “Everyone gets concerned when there’s an outbreak, and when that outbreak stops, the headlines stop, and an economic downturn happens, the budget gets cut.”

Fresno’s STD clinic was shuttered in 2010 amid the Great Recession. Many others have vanished since the passage of the Affordable Care Act. Health leaders thought “by magically beefing up the primary care system, that we would do a better job of catching STIs and treating them,” said Mr. Harvey, the executive director of the National Coalition of STD Directors. That hasn’t worked out; people want access to anonymous services, and primary care doctors often don’t have STDs top of mind. The coalition is lobbying Congress for funding to support STD clinical services, proposing a three-year demonstration project funded at $600 million.

It’s one of Ms. Adams’ dreams to see Fresno’s STD clinic restored as it was. “You could come in for an HIV test and get other STDs checked,” she said. “And if a patient is positive, you can give a first injection on the spot.”

On Aug. 12, Ms. Yang set out for Huron again, speeding past groves of almond trees and fields of grapes in the department’s white Chevy Cruze. She brought along a colleague, Jorge Sevilla, who had recently transferred to the STD program from COVID-19 contact tracing. Ms. Yang was anxious to find Angelica again. “She’s probably in her second trimester now,” she said.

They found her outside of a pale yellow house a few blocks from the homeless encampment; the owner was letting her stay in a shed tucked in the corner of the dirt yard. This time, it was evident that she was pregnant. Ms. Yang noted that Angelica was wearing a wig; hair loss is a symptom of syphilis.

“Do you remember me?” Ms. Yang asked.

Angelica nodded. She didn’t seem surprised to see Ms. Yang again. (I came along, and Mr. Sevilla explained who I was and that I was writing about syphilis and the people affected by it. Angelica signed a release for me to report about her case, and she said she had no problem with me writing about her or even using her full name. ProPublica chose to only print her first name.)

“How are you doing? How’s the baby?”

“Bien.”

“So the last time we talked, we were going to have you go to United Healthcare Center to get treatment. Have you gone since?”

Angelica shook her head.

“We brought some gift cards...” Mr. Sevilla started in Spanish. The department uses them as incentives for completing injections. But Angelica was already shaking her head. The nearest Walmart was the next town over.

Ms. Yang turned to her partner. “Tell her: So the reason why we’re coming out here again is because we really need her to go in for treatment. ... We really are concerned for the baby’s health especially since she’s had the infection for quite a while.”

Angelica listened while Mr. Sevilla interpreted, her eyes on the ground. Then she looked up. “Orita?” she asked. Right now?

“I’ll walk with you,” Ms. Yang offered. Angelica shook her head. “She said she wants to shower first before she goes over there,” Mr. Sevilla said.

Ms. Yang made a face. “She said that to me last time.” Ms. Yang offered to wait, but Angelica didn’t want the health officers to linger by the house. She said she would meet them by the clinic in 15 minutes.

Ms. Yang was reluctant to let her go but again had no other option. She and Mr. Sevilla drove to the clinic, then stood on the corner of the parking lot, staring down the road.

Talk to the pediatricians, obstetricians, and families on the front lines of the congenital syphilis surge and it becomes clear why Ms. Yang and others are trying so desperately to prevent cases. Dr. J. B. Cantey, associate professor in pediatrics at UT Health San Antonio, remembers a baby girl born at 25 weeks gestation who weighed a pound and a half. Syphilis had spread through her bones and lungs. She spent five months in the neonatal intensive care unit, breathing through a ventilator, and was still eating through a tube when she was discharged.

Then, there are the miscarriages, the stillbirths and the inconsolable parents. Dr. Irene Stafford, an associate professor and maternal-fetal medicine specialist at UT Health in Houston, cannot forget a patient who came in at 36 weeks for a routine checkup, pregnant with her first child. Dr. Stafford realized that there was no heartbeat. “She could see on my face that something was really wrong,” Dr. Stafford recalled. She had to let the patient know that syphilis had killed her baby. “She was hysterical, just bawling,” Dr. Stafford said. “I’ve seen people’s families ripped apart and I’ve seen beautiful babies die.” Fewer than 10% of patients who experience a stillbirth are tested for syphilis, suggesting that cases are underdiagnosed.

A Texas grandmother named Solidad Odunuga offers a glimpse into what the future could hold for Angelica’s mother, who may wind up raising her baby.

In February of last year, Ms. Odunuga got a call from the Lyndon B. Johnson Hospital in Houston. A nurse told her that her daughter was about to give birth and that child protective services had been called. Ms. Odunuga had lost contact with her daughter, who struggled with homelessness and substance abuse. She arrived in time to see her grandson delivered, premature at 30 weeks old, weighing 2.7 pounds. He tested positive for syphilis.

When a child protective worker asked Ms. Odunuga to take custody of the infant, she felt a wave of dread. “I was in denial,” she recalled. “I did not plan to be a mom again.” The baby’s medical problems were daunting: “Global developmental delays ... concerns for visual impairments ... high risk of cerebral palsy,” read a note from the doctor at the time.

Still, Ms. Odunuga visited her grandson every day for three months, driving to the NICU from her job at the University of Houston. “I’d put him in my shirt to keep him warm and hold him there.” She fell in love. She named him Emmanuel.

Once Emmanuel was discharged, Ms. Odunuga realized she had no choice but to quit her job. While Medicaid covered the costs of Emmanuel’s treatment, it was on her to care for him. From infancy, Emmanuel’s life has been a whirlwind of constant therapy. Today, at 20 months old, Odunuga brings him to physical, occupational, speech, and developmental therapy, each a different appointment on a different day of the week.

Emmanuel has thrived beyond what his doctors predicted, toddling so fast that Ms. Odunuga can’t look away for a minute and beaming as he waves his favorite toy phone. Yet he still suffers from gagging issues, which means Ms. Odunuga can’t feed him any solid foods. Liquid gets into his lungs when he aspirates; it has led to pneumonia three times. Emmanuel has a special stroller that helps keep his head in a position that won’t aggravate his persistent reflux, but Odunuga said she still has to pull over on the side of the road sometimes when she hears him projectile vomiting from the backseat.

The days are endless. Once she puts Emmanuel to bed, Ms. Odunuga starts planning the next day’s appointments. “I’ve had to cry alone, scream out alone,” she said. “Sometimes I wake up and think, Is this real? And then I hear him in the next room.”

Putting aside the challenge of eliminating syphilis entirely, everyone agrees it’s both doable and necessary to prevent newborn cases. “There was a crisis in perinatal HIV almost 30 years ago and people stood up and said this is not OK — it’s not acceptable for babies to be born in that condition. ... [We] brought it down from 1,700 babies born each year with perinatal HIV to less than 40 per year today,” said Virginia Bowen, an epidemiologist at the CDC. “Now here we are with a slightly different condition. We can also stand up and say, ‘This is not acceptable.’” Belarus, Bermuda, Cuba, Malaysia, Thailand, and Sri Lanka are among countries recognized by the World Health Organization for eliminating congenital syphilis.

Success starts with filling gaps across the health care system.

For almost a century, public health experts have advocated for testing pregnant patients more than once for syphilis in order to catch the infection. But policies nationwide still don’t reflect this best practice. Six states have no prenatal screening requirement at all. Even in states that require three tests, public health officials say that many physicians aren’t aware of the requirements. Dr. Stafford, the maternal-fetal medicine specialist in Houston, says she’s tired of hearing her own peers in medicine tell her, “Oh, syphilis is a problem?”

It costs public health departments less than 25 cents a dose to buy penicillin, but for a private practice, it’s more than $1,000, according to Dr. Park of the University of California San Francisco. “There’s no incentive for a private physician to stock a dose that could expire before it’s used, so they often don’t have it. So a woman comes in, they say, ‘We’ll send you to the emergency department or health department to get it,’ then [the patients] don’t show up.”

A vaccine would be invaluable for preventing spread among people at high risk for reinfection. But there is none. Scientists only recently figured out how to grow the bacteria in the lab, prompting grants from the National Institutes of Health to fund research into a vaccine. Dr. Justin Radolf, a researcher at the University of Connecticut School of Medicine, said he hopes his team will have a vaccine candidate by the end of its five-year grant. But it’ll likely take years more to find a manufacturer and run human trials.

Public health agencies also need to recognize that many of the hurdles to getting pregnant people treated involve access to care, economic stability, safe housing and transportation. In Fresno, Ms. Adams has been working on ways her department can collaborate with mental health services. Recently, one of her disease intervention specialists managed to get a pregnant woman treated with penicillin shots and, at the patient’s request, connected her with an addiction treatment center.

Gaining a patient’s cooperation means seeing them as complex humans instead of just a case to solve. “There may be past traumas with the health care system,” said Cynthia Deverson, project manager of the Houston Fetal Infant Morbidity Review. “There’s the fear of being discovered if she’s doing something illegal to survive. ... She may need to be in a certain place at a certain time so she can get something to eat, or maybe it’s the only time of the day that’s safe for her to sleep. They’re not going to tell you that. Yes, they understand there’s a problem, but it’s not an immediate threat, maybe they don’t feel bad yet, so obviously this is not urgent. ...

“What helps to gain trust is consistency,” she said. “Literally, it’s seeing that [disease specialist] constantly, daily. ... The woman can see that you’re not going to harm her, you’re saying, ‘I’m here at this time if you need me.’”

Ms. Yang stood outside the clinic, waiting for Angelica to show up, baking in the 90-degree heat. Her feelings ranged from irritation — Why didn’t she just go? I’d have more energy for other cases — to an appreciation for the parts of Angelica’s story that she didn’t know — She’s in survival mode. I need to be more patient.

Fifteen minutes ticked by, then 20.

“OK,” Ms. Yang announced. “We’re going back.”

She asked Sevilla if he would be OK if they drove Angelica to the clinic; they technically weren’t supposed to because of coronavirus precautions, but Ms. Yang wasn’t sure she could convince Angelica to walk. Mr. Sevilla gave her the thumbs up.

When they pulled up, they saw Angelica sitting in the backyard, chatting with a friend. She now wore a fresh T-shirt and had shoes on her feet. Angelica sat silently in the back seat as Ms. Yang drove to the clinic. A few minutes later, they pulled up to the parking lot.

Finally, Ms. Yang thought. We got her here.

The clinic was packed with people waiting for COVID-19 tests and vaccinations. A worker there had previously told Ms. Yang that a walk-in would be fine, but a receptionist now said they were too busy to treat Angelica. She would have to return.

Ms. Yang felt a surge of frustration, sensing that her hard-fought opportunity was slipping away. She tried to talk to the nurse supervisor, but he wasn’t available. She tried to leave the gift cards at the office to reward Angelica if she came, but the receptionist said she couldn’t hold them. While Ms. Yang negotiated, Mr. Sevilla sat with Angelica in the car, waiting.

Finally, Ms. Yang accepted this was yet another thing she couldn’t control.

She drove Angelica back to the yellow house. As they arrived, she tried once more to impress on her just how important it was to get treated, asking Mr. Sevilla to interpret. “We don’t want it to get any more serious, because she can go blind, she could go deaf, she could lose her baby.”

Angelica already had the door halfway open.

“So on a scale from one to 10, how important is this to get treated?” Ms. Yang asked.

“Ten,” Angelica said. Ms. Yang reminded her of the appointment that afternoon. Then Angelica stepped out and returned to the dusty yard.

Ms. Yang lingered for a moment, watching Angelica go. Then she turned the car back onto the highway and set off toward Fresno, knowing, already, that she’d be back.

Postscript: A reporter visited Huron twice more in the months that followed, including once independently to try to interview Angelica, but she wasn’t in town. Ms. Yang has visited Huron twice more as well — six times in total thus far. In October, a couple of men at the yellow house said Angelica was still in town, still pregnant. Ms. Yang and Mr. Sevilla spent an hour driving around, talking to residents, hoping to catch Angelica. But she was nowhere to be found.

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This story was originally published on ProPublica and was co-published with NPR.

When Mai Yang is looking for a patient, she travels light. She dresses deliberately — not too formal, so she won’t be mistaken for a police officer; not too casual, so people will look past her tiny 4-foot-10 stature and youthful face and trust her with sensitive health information. Always, she wears closed-toed shoes, “just in case I need to run.”

Yang carries a stack of cards issued by the Centers for Disease Control and Prevention that show what happens when the Treponema pallidum bacteria invades a patient’s body. There’s a photo of an angry red sore on a penis. There’s one of a tongue, marred by mucus-lined lesions. And there’s one of a newborn baby, its belly, torso and thighs dotted in a rash, its mouth open, as if caught midcry.

It was because of the prospect of one such baby that Yang found herself walking through a homeless encampment on a blazing July day in Huron, Calif., an hour’s drive southwest of her office at the Fresno County Department of Public Health. She was looking for a pregnant woman named Angelica, whose visit to a community clinic had triggered a report to the health department’s sexually transmitted disease program. Angelica had tested positive for syphilis. If she was not treated, her baby could end up like the one in the picture or worse — there was a 40% chance the baby would die.

Ms. Yang knew, though, that if she helped Angelica get treated with three weekly shots of penicillin at least 30 days before she gave birth, it was likely that the infection would be wiped out and her baby would be born without any symptoms at all. Every case of congenital syphilis, when a baby is born with the disease, is avoidable. Each is considered a “sentinel event,” a warning that the public health system is failing.

The alarms are now clamoring. In the United States, more than 129,800 syphilis cases were recorded in 2019, double the case count of five years prior. In the same time period, cases of congenital syphilis quadrupled: 1,870 babies were born with the disease; 128 died. Case counts from 2020 are still being finalized, but the CDC has said that reported cases of congenital syphilis have already exceeded the prior year. Black, Hispanic, and Native American babies are disproportionately at risk.

There was a time, not too long ago, when CDC officials thought they could eliminate the centuries-old scourge from the United States, for adults and babies. But the effort lost steam and cases soon crept up again. Syphilis is not an outlier. The United States goes through what former CDC director Dr. Tom Frieden calls “a deadly cycle of panic and neglect” in which emergencies propel officials to scramble and throw money at a problem — whether that’s Ebola, Zika, or COVID-19. Then, as fear ebbs, so does the attention and motivation to finish the task.

The last fraction of cases can be the hardest to solve, whether that’s eradicating a bug or getting vaccines into arms, yet too often, that’s exactly when political attention gets diverted to the next alarm. The result: The hardest to reach and most vulnerable populations are the ones left suffering, after everyone else looks away.

Ms. Yang first received Angelica’s lab report on June 17. The address listed was a P.O. box, and the phone number belonged to her sister, who said Angelica was living in Huron. That was a piece of luck: Huron is tiny; the city spans just 1.6 square miles. On her first visit, a worker at the Alamo Motel said she knew Angelica and directed Ms. Yang to a nearby homeless encampment. Angelica wasn’t there, so Ms. Yang returned a second time, bringing one of the health department nurses who could serve as an interpreter.

They made their way to the barren patch of land behind Huron Valley Foods, the local grocery store, where people took shelter in makeshift lean-tos composed of cardboard boxes, scrap wood ,and scavenged furniture, draped with sheets that served as ceilings and curtains. Yang stopped outside one of the structures, calling a greeting.

“Hi, I’m from the health department, I’m looking for Angelica.”

The nurse echoed her in Spanish.

Angelica emerged, squinting in the sunlight. Ms. Yang couldn’t tell if she was visibly pregnant yet, as her body was obscured by an oversized shirt. The two women were about the same age: Ms. Yang 26 and Angelica 27. Ms. Yang led her away from the tent, so they could speak privately. Angelica seemed reticent, surprised by the sudden appearance of the two health officers. “You’re not in trouble,” Ms. Yang said, before revealing the results of her blood test.

Angelica had never heard of syphilis.

“Have you been to prenatal care?”

Angelica shook her head. The local clinic had referred her to an obstetrician in Hanford, a 30-minute drive away. She had no car. She also mentioned that she didn’t intend to raise her baby; her two oldest children lived with her mother, and this one likely would, too.

Ms. Yang pulled out the CDC cards, showing them to Angelica and asking if she had experienced any of the symptoms illustrated. No, Angelica said, her lips pursed with disgust.

“Right now you still feel healthy, but this bacteria is still in your body,” Ms. Yang pressed. “You need to get the infection treated to prevent further health complications to yourself and your baby.”

The community clinic was just across the street. “Can we walk you over to the clinic and make sure you get seen so we can get this taken care of?”

Angelica demurred. She said she hadn’t showered for a week and wanted to wash up first. She said she’d go later.

Ms. Yang tried once more to extract a promise: “What time do you think you’ll go?”

“Today, for sure.”

Syphilis is called The Great Imitator: It can look like any number of diseases. In its first stage, the only evidence of infection is a painless sore at the bacteria’s point of entry. Weeks later, as the bacteria multiplies, skin rashes bloom on the palms of the hands and bottoms of the feet. Other traits of this stage include fever, headaches, muscle aches, sore throat, and fatigue. These symptoms eventually disappear and the patient progresses into the latent phase, which betrays no external signs. But if left untreated, after a decade or more, syphilis will reemerge in up to 30% of patients, capable of wreaking horror on a wide range of organ systems. Dr. Marion Sims, president of the American Medical Association in 1876, called it a “terrible scourge, which begins with lamb-like mildness and ends with lion-like rage that ruthlessly destroys everything in its way.”

The corkscrew-shaped bacteria can infiltrate the nervous system at any stage of the infection. Ms. Yang is haunted by her memory of interviewing a young man whose dementia was so severe that he didn’t know why he was in the hospital or how old he was. And regardless of symptoms or stage, the bacteria can penetrate the placenta to infect a fetus. Even in these cases the infection is unpredictable: Many babies are born with normal physical features, but others can have deformed bones or damaged brains, and they can struggle to hear, see, or breathe.

From its earliest days, syphilis has been shrouded in stigma. The first recorded outbreak was in the late 15th century, when Charles VIII led the French army to invade Naples. Italian physicians described French soldiers covered with pustules, dying from a sexually transmitted disease. As the affliction spread, Italians called it the French Disease. The French blamed the Neopolitans. It was also called the German, Polish, or Spanish disease, depending on which neighbor one wanted to blame. Even its name bears the taint of divine judgement: It comes from a 16th-century poem that tells of a shepherd, Syphilus, who offended the god Apollo and was punished with a hideous disease.

By 1937 in America, when former Surgeon General Thomas Parran wrote the book “Shadow on the Land,” he estimated some 680,000 people were under treatment for syphilis; about 60,000 babies were being born annually with congenital syphilis. There was no cure, and the stigma was so strong that public health officials feared even properly documenting cases.

Thanks to Dr. Parran’s ardent advocacy, Congress in 1938 passed the National Venereal Disease Control Act, which created grants for states to set up clinics and support testing and treatment. Other than a short-lived funding effort during World War I, this was the first coordinated federal push to respond to the disease.

Around the same time, the Public Health Service launched an effort to record the natural history of syphilis. Situated in Tuskegee, Ala., the infamous study recruited 600 black men. By the early 1940s, penicillin became widely available and was found to be a reliable cure, but the treatment was withheld from the study participants. Outrage over the ethical violations would cast a stain across syphilis research for decades to come and fuel generations of mistrust in the medical system among Black Americans that continues to this day.

With the introduction of penicillin, cases began to plummet. Twice, the CDC has announced efforts to wipe out the disease — once in the 1960s and again in 1999.

In the latest effort, the CDC announced that the United States had “a unique opportunity to eliminate syphilis within its borders,” thanks to historically low rates, with 80% of counties reporting zero cases. The concentration of cases in the South “identifies communities in which there is a fundamental failure of public health capacity,” the agency noted, adding that elimination — which it defined as fewer than 1,000 cases a year — would “decrease one of our most glaring racial disparities in health.”

Two years after the campaign began, cases started climbing, first among gay men and later, heterosexuals. Cases in women started accelerating in 2013, followed shortly by increasing numbers of babies born with syphilis.The reasons for failure are complex; people relaxed safer sex practices after the advent of potent HIV combination therapies, increased methamphetamine use drove riskier behavior and an explosion of online dating made it hard to track and test sexual partners, according to Dr. Ina Park, medical director of the California Prevention Training Center at the University of California San Francisco.

But federal and state public health efforts were hamstrung from the get-go. In 1999, the CDC said it would need about $35 million to $39 million in new federal funds annually for at least five years to eliminate syphilis. The agency got less than half of what it asked for, according to Jo Valentine, former program coordinator of the CDC’s Syphilis Elimination Effort. As cases rose, the CDC modified its goals in 2006 from 0.4 primary and secondary syphilis cases per 100,000 in population to 2.2 cases per 100,000. By 2013, as elimination seemed less and less viable, the CDC changed its focus to ending congenital syphilis only.

Since then, funding has remained anemic. From 2015 to 2020, the CDC’s budget for preventing sexually transmitted infections grew by 2.2%. Taking inflation into account, that’s a 7.4% reduction in purchasing power. In the same period, cases of syphilis, gonorrhea and chlamydia — the three STDs that have federally funded control programs — increased by nearly 30%.

“We have a long history of nearly eradicating something, then changing our attention, and seeing a resurgence in numbers,” said David Harvey, executive director of the National Coalition of STD Directors. “We have more congenital syphilis cases today in America than we ever had pediatric AIDS at the height of the AIDS epidemic. It’s heartbreaking.”

Adriane Casalotti, chief of government and public affairs at the National Association of County and City Health Officials, warns that the United States should not be surprised to see case counts continue to climb. “The bugs don’t go away,” she said. “They’re just waiting for the next opportunity, when you’re not paying attention.”

Ms. Yang waited until the end of the day, then called the clinic to see if Angelica had gone for her shot. She had not. Ms. Yang would have to block off another half day to visit Huron again, but she had three dozen other cases to deal with.

States in the South and West have seen the highest syphilis rates in recent years. In 2017, 64 babies in Fresno County were born with syphilis at a rate of 440 babies per 100,000 live births — about 19 times the national rate. While the county had managed to lower case counts in the two years that followed, the pandemic threatened to unravel that progress, forcing STD staffers to do COVID-19 contact tracing, pausing field visits to find infected people, and scaring patients from seeking care. Ms. Yang’s colleague handled three cases of stillbirth in 2020; in each, the woman was never diagnosed with syphilis because she feared catching the coronavirus and skipped prenatal care.

Ms. Yang, whose caseload peaked at 70 during a COVID-19 surge, knew she would not be able handle them all as thoroughly as she’d like to. “When I was being mentored by another investigator, he said: ‘You’re not a superhero. You can’t save everybody,’” she said. She prioritizes men who have sex with men, because there’s a higher prevalence of syphilis in that population, and pregnant people, because of the horrific consequences for babies.

The job of a disease intervention specialist isn’t for everyone: It means meeting patients whenever and wherever they are available — in the mop closet of a bus station, in a quiet parking lot — to inform them about the disease, to extract names of sex partners and to encourage treatment. Patients are often reluctant to talk. They can get belligerent, upset that “the government” has their personal information or shattered at the thought that a partner is likely cheating on them. Salaries typically start in the low $40,000s.

Jena Adams, Ms. Yang’s supervisor, has eight investigators working on HIV and syphilis. In the middle of 2020, she lost two and replaced them only recently. “It’s been exhausting,” Ms. Adams said. She has only one specialist who is trained to take blood samples in the field, crucial for guaranteeing that the partners of those who test positive for syphilis also get tested. Ms. Adams wants to get phlebotomy training for the rest of her staff, but it’s $2,000 per person. The department also doesn’t have anyone who can administer penicillin injections in the field; that would have been key when Ms. Yang met Angelica. For a while, a nurse who worked in the tuberculosis program would ride along to give penicillin shots on a volunteer basis. Then he, too, left the health department.

Much of the resources in public health trickle down from the CDC, which distributes money to states, which then parcel it out to counties. The CDC gets its budget from Congress, which tells the agency, by line item, exactly how much money it can spend to fight a disease or virus, in an uncommonly specific manner not seen in many other agencies. The decisions are often politically driven and can be detached from actual health needs.

When the House and Senate appropriations committees meet to decide how much the CDC will get for each line item, they are barraged by lobbyists for individual disease interests. Stephanie Arnold Pang, senior director of policy and government relations at the National Coalition of STD Directors, can pick out the groups by sight: breast cancer wears pink, Alzheimer’s goes in purple, multiple sclerosis comes in orange, HIV in red. STD prevention advocates, like herself, don a green ribbon, but they’re far outnumbered.

And unlike diseases that might already be familiar to lawmakers, or have patient and family spokespeople who can tell their own powerful stories, syphilis doesn’t have many willing poster children. “Congressmen don’t wake up one day and say, ‘Oh hey, there’s congenital syphilis in my jurisdiction.’ You have to raise awareness,” Arnold Pang said. It can be hard jockeying for a meeting. “Some offices might say, ‘I don’t have time for you because we’ve just seen HIV.’ ... Sometimes, it feels like you’re talking into a void.”

The consequences of the political nature of public health funding have become more obvious during the coronavirus pandemic. The 2014 Ebola epidemic was seen as a “global wakeup call” that the world wasn’t prepared for a major pandemic, yet in 2018, the CDC scaled back its epidemic prevention work as money ran out. “If you’ve got to choose between Alzheimer’s research and stopping an outbreak that may not happen? Stopping an outbreak that might not happen doesn’t do well,” said Dr. Frieden, the former CDC director. “The CDC needs to have more money and more flexible money. Otherwise, we’re going to be in this situation long term.”

In May 2021, President Joe Biden’s administration announced it would set aside $7.4 billion over the next five years to hire and train public health workers, including $1.1 billion for more disease intervention specialists like Ms. Yang. Public health officials are thrilled to have the chance to expand their workforce, but some worry the time horizon may be too short. “We’ve seen this movie before, right?” Dr. Frieden said. “Everyone gets concerned when there’s an outbreak, and when that outbreak stops, the headlines stop, and an economic downturn happens, the budget gets cut.”

Fresno’s STD clinic was shuttered in 2010 amid the Great Recession. Many others have vanished since the passage of the Affordable Care Act. Health leaders thought “by magically beefing up the primary care system, that we would do a better job of catching STIs and treating them,” said Mr. Harvey, the executive director of the National Coalition of STD Directors. That hasn’t worked out; people want access to anonymous services, and primary care doctors often don’t have STDs top of mind. The coalition is lobbying Congress for funding to support STD clinical services, proposing a three-year demonstration project funded at $600 million.

It’s one of Ms. Adams’ dreams to see Fresno’s STD clinic restored as it was. “You could come in for an HIV test and get other STDs checked,” she said. “And if a patient is positive, you can give a first injection on the spot.”

On Aug. 12, Ms. Yang set out for Huron again, speeding past groves of almond trees and fields of grapes in the department’s white Chevy Cruze. She brought along a colleague, Jorge Sevilla, who had recently transferred to the STD program from COVID-19 contact tracing. Ms. Yang was anxious to find Angelica again. “She’s probably in her second trimester now,” she said.

They found her outside of a pale yellow house a few blocks from the homeless encampment; the owner was letting her stay in a shed tucked in the corner of the dirt yard. This time, it was evident that she was pregnant. Ms. Yang noted that Angelica was wearing a wig; hair loss is a symptom of syphilis.

“Do you remember me?” Ms. Yang asked.

Angelica nodded. She didn’t seem surprised to see Ms. Yang again. (I came along, and Mr. Sevilla explained who I was and that I was writing about syphilis and the people affected by it. Angelica signed a release for me to report about her case, and she said she had no problem with me writing about her or even using her full name. ProPublica chose to only print her first name.)

“How are you doing? How’s the baby?”

“Bien.”

“So the last time we talked, we were going to have you go to United Healthcare Center to get treatment. Have you gone since?”

Angelica shook her head.

“We brought some gift cards...” Mr. Sevilla started in Spanish. The department uses them as incentives for completing injections. But Angelica was already shaking her head. The nearest Walmart was the next town over.

Ms. Yang turned to her partner. “Tell her: So the reason why we’re coming out here again is because we really need her to go in for treatment. ... We really are concerned for the baby’s health especially since she’s had the infection for quite a while.”

Angelica listened while Mr. Sevilla interpreted, her eyes on the ground. Then she looked up. “Orita?” she asked. Right now?

“I’ll walk with you,” Ms. Yang offered. Angelica shook her head. “She said she wants to shower first before she goes over there,” Mr. Sevilla said.

Ms. Yang made a face. “She said that to me last time.” Ms. Yang offered to wait, but Angelica didn’t want the health officers to linger by the house. She said she would meet them by the clinic in 15 minutes.

Ms. Yang was reluctant to let her go but again had no other option. She and Mr. Sevilla drove to the clinic, then stood on the corner of the parking lot, staring down the road.

Talk to the pediatricians, obstetricians, and families on the front lines of the congenital syphilis surge and it becomes clear why Ms. Yang and others are trying so desperately to prevent cases. Dr. J. B. Cantey, associate professor in pediatrics at UT Health San Antonio, remembers a baby girl born at 25 weeks gestation who weighed a pound and a half. Syphilis had spread through her bones and lungs. She spent five months in the neonatal intensive care unit, breathing through a ventilator, and was still eating through a tube when she was discharged.

Then, there are the miscarriages, the stillbirths and the inconsolable parents. Dr. Irene Stafford, an associate professor and maternal-fetal medicine specialist at UT Health in Houston, cannot forget a patient who came in at 36 weeks for a routine checkup, pregnant with her first child. Dr. Stafford realized that there was no heartbeat. “She could see on my face that something was really wrong,” Dr. Stafford recalled. She had to let the patient know that syphilis had killed her baby. “She was hysterical, just bawling,” Dr. Stafford said. “I’ve seen people’s families ripped apart and I’ve seen beautiful babies die.” Fewer than 10% of patients who experience a stillbirth are tested for syphilis, suggesting that cases are underdiagnosed.

A Texas grandmother named Solidad Odunuga offers a glimpse into what the future could hold for Angelica’s mother, who may wind up raising her baby.

In February of last year, Ms. Odunuga got a call from the Lyndon B. Johnson Hospital in Houston. A nurse told her that her daughter was about to give birth and that child protective services had been called. Ms. Odunuga had lost contact with her daughter, who struggled with homelessness and substance abuse. She arrived in time to see her grandson delivered, premature at 30 weeks old, weighing 2.7 pounds. He tested positive for syphilis.

When a child protective worker asked Ms. Odunuga to take custody of the infant, she felt a wave of dread. “I was in denial,” she recalled. “I did not plan to be a mom again.” The baby’s medical problems were daunting: “Global developmental delays ... concerns for visual impairments ... high risk of cerebral palsy,” read a note from the doctor at the time.

Still, Ms. Odunuga visited her grandson every day for three months, driving to the NICU from her job at the University of Houston. “I’d put him in my shirt to keep him warm and hold him there.” She fell in love. She named him Emmanuel.

Once Emmanuel was discharged, Ms. Odunuga realized she had no choice but to quit her job. While Medicaid covered the costs of Emmanuel’s treatment, it was on her to care for him. From infancy, Emmanuel’s life has been a whirlwind of constant therapy. Today, at 20 months old, Odunuga brings him to physical, occupational, speech, and developmental therapy, each a different appointment on a different day of the week.

Emmanuel has thrived beyond what his doctors predicted, toddling so fast that Ms. Odunuga can’t look away for a minute and beaming as he waves his favorite toy phone. Yet he still suffers from gagging issues, which means Ms. Odunuga can’t feed him any solid foods. Liquid gets into his lungs when he aspirates; it has led to pneumonia three times. Emmanuel has a special stroller that helps keep his head in a position that won’t aggravate his persistent reflux, but Odunuga said she still has to pull over on the side of the road sometimes when she hears him projectile vomiting from the backseat.

The days are endless. Once she puts Emmanuel to bed, Ms. Odunuga starts planning the next day’s appointments. “I’ve had to cry alone, scream out alone,” she said. “Sometimes I wake up and think, Is this real? And then I hear him in the next room.”

Putting aside the challenge of eliminating syphilis entirely, everyone agrees it’s both doable and necessary to prevent newborn cases. “There was a crisis in perinatal HIV almost 30 years ago and people stood up and said this is not OK — it’s not acceptable for babies to be born in that condition. ... [We] brought it down from 1,700 babies born each year with perinatal HIV to less than 40 per year today,” said Virginia Bowen, an epidemiologist at the CDC. “Now here we are with a slightly different condition. We can also stand up and say, ‘This is not acceptable.’” Belarus, Bermuda, Cuba, Malaysia, Thailand, and Sri Lanka are among countries recognized by the World Health Organization for eliminating congenital syphilis.

Success starts with filling gaps across the health care system.

For almost a century, public health experts have advocated for testing pregnant patients more than once for syphilis in order to catch the infection. But policies nationwide still don’t reflect this best practice. Six states have no prenatal screening requirement at all. Even in states that require three tests, public health officials say that many physicians aren’t aware of the requirements. Dr. Stafford, the maternal-fetal medicine specialist in Houston, says she’s tired of hearing her own peers in medicine tell her, “Oh, syphilis is a problem?”

It costs public health departments less than 25 cents a dose to buy penicillin, but for a private practice, it’s more than $1,000, according to Dr. Park of the University of California San Francisco. “There’s no incentive for a private physician to stock a dose that could expire before it’s used, so they often don’t have it. So a woman comes in, they say, ‘We’ll send you to the emergency department or health department to get it,’ then [the patients] don’t show up.”

A vaccine would be invaluable for preventing spread among people at high risk for reinfection. But there is none. Scientists only recently figured out how to grow the bacteria in the lab, prompting grants from the National Institutes of Health to fund research into a vaccine. Dr. Justin Radolf, a researcher at the University of Connecticut School of Medicine, said he hopes his team will have a vaccine candidate by the end of its five-year grant. But it’ll likely take years more to find a manufacturer and run human trials.

Public health agencies also need to recognize that many of the hurdles to getting pregnant people treated involve access to care, economic stability, safe housing and transportation. In Fresno, Ms. Adams has been working on ways her department can collaborate with mental health services. Recently, one of her disease intervention specialists managed to get a pregnant woman treated with penicillin shots and, at the patient’s request, connected her with an addiction treatment center.

Gaining a patient’s cooperation means seeing them as complex humans instead of just a case to solve. “There may be past traumas with the health care system,” said Cynthia Deverson, project manager of the Houston Fetal Infant Morbidity Review. “There’s the fear of being discovered if she’s doing something illegal to survive. ... She may need to be in a certain place at a certain time so she can get something to eat, or maybe it’s the only time of the day that’s safe for her to sleep. They’re not going to tell you that. Yes, they understand there’s a problem, but it’s not an immediate threat, maybe they don’t feel bad yet, so obviously this is not urgent. ...

“What helps to gain trust is consistency,” she said. “Literally, it’s seeing that [disease specialist] constantly, daily. ... The woman can see that you’re not going to harm her, you’re saying, ‘I’m here at this time if you need me.’”

Ms. Yang stood outside the clinic, waiting for Angelica to show up, baking in the 90-degree heat. Her feelings ranged from irritation — Why didn’t she just go? I’d have more energy for other cases — to an appreciation for the parts of Angelica’s story that she didn’t know — She’s in survival mode. I need to be more patient.

Fifteen minutes ticked by, then 20.

“OK,” Ms. Yang announced. “We’re going back.”

She asked Sevilla if he would be OK if they drove Angelica to the clinic; they technically weren’t supposed to because of coronavirus precautions, but Ms. Yang wasn’t sure she could convince Angelica to walk. Mr. Sevilla gave her the thumbs up.

When they pulled up, they saw Angelica sitting in the backyard, chatting with a friend. She now wore a fresh T-shirt and had shoes on her feet. Angelica sat silently in the back seat as Ms. Yang drove to the clinic. A few minutes later, they pulled up to the parking lot.

Finally, Ms. Yang thought. We got her here.

The clinic was packed with people waiting for COVID-19 tests and vaccinations. A worker there had previously told Ms. Yang that a walk-in would be fine, but a receptionist now said they were too busy to treat Angelica. She would have to return.

Ms. Yang felt a surge of frustration, sensing that her hard-fought opportunity was slipping away. She tried to talk to the nurse supervisor, but he wasn’t available. She tried to leave the gift cards at the office to reward Angelica if she came, but the receptionist said she couldn’t hold them. While Ms. Yang negotiated, Mr. Sevilla sat with Angelica in the car, waiting.

Finally, Ms. Yang accepted this was yet another thing she couldn’t control.

She drove Angelica back to the yellow house. As they arrived, she tried once more to impress on her just how important it was to get treated, asking Mr. Sevilla to interpret. “We don’t want it to get any more serious, because she can go blind, she could go deaf, she could lose her baby.”

Angelica already had the door halfway open.

“So on a scale from one to 10, how important is this to get treated?” Ms. Yang asked.

“Ten,” Angelica said. Ms. Yang reminded her of the appointment that afternoon. Then Angelica stepped out and returned to the dusty yard.

Ms. Yang lingered for a moment, watching Angelica go. Then she turned the car back onto the highway and set off toward Fresno, knowing, already, that she’d be back.

Postscript: A reporter visited Huron twice more in the months that followed, including once independently to try to interview Angelica, but she wasn’t in town. Ms. Yang has visited Huron twice more as well — six times in total thus far. In October, a couple of men at the yellow house said Angelica was still in town, still pregnant. Ms. Yang and Mr. Sevilla spent an hour driving around, talking to residents, hoping to catch Angelica. But she was nowhere to be found.

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This story was originally published on ProPublica and was co-published with NPR.

When Mai Yang is looking for a patient, she travels light. She dresses deliberately — not too formal, so she won’t be mistaken for a police officer; not too casual, so people will look past her tiny 4-foot-10 stature and youthful face and trust her with sensitive health information. Always, she wears closed-toed shoes, “just in case I need to run.”

Yang carries a stack of cards issued by the Centers for Disease Control and Prevention that show what happens when the Treponema pallidum bacteria invades a patient’s body. There’s a photo of an angry red sore on a penis. There’s one of a tongue, marred by mucus-lined lesions. And there’s one of a newborn baby, its belly, torso and thighs dotted in a rash, its mouth open, as if caught midcry.

It was because of the prospect of one such baby that Yang found herself walking through a homeless encampment on a blazing July day in Huron, Calif., an hour’s drive southwest of her office at the Fresno County Department of Public Health. She was looking for a pregnant woman named Angelica, whose visit to a community clinic had triggered a report to the health department’s sexually transmitted disease program. Angelica had tested positive for syphilis. If she was not treated, her baby could end up like the one in the picture or worse — there was a 40% chance the baby would die.

Ms. Yang knew, though, that if she helped Angelica get treated with three weekly shots of penicillin at least 30 days before she gave birth, it was likely that the infection would be wiped out and her baby would be born without any symptoms at all. Every case of congenital syphilis, when a baby is born with the disease, is avoidable. Each is considered a “sentinel event,” a warning that the public health system is failing.

The alarms are now clamoring. In the United States, more than 129,800 syphilis cases were recorded in 2019, double the case count of five years prior. In the same time period, cases of congenital syphilis quadrupled: 1,870 babies were born with the disease; 128 died. Case counts from 2020 are still being finalized, but the CDC has said that reported cases of congenital syphilis have already exceeded the prior year. Black, Hispanic, and Native American babies are disproportionately at risk.

There was a time, not too long ago, when CDC officials thought they could eliminate the centuries-old scourge from the United States, for adults and babies. But the effort lost steam and cases soon crept up again. Syphilis is not an outlier. The United States goes through what former CDC director Dr. Tom Frieden calls “a deadly cycle of panic and neglect” in which emergencies propel officials to scramble and throw money at a problem — whether that’s Ebola, Zika, or COVID-19. Then, as fear ebbs, so does the attention and motivation to finish the task.

The last fraction of cases can be the hardest to solve, whether that’s eradicating a bug or getting vaccines into arms, yet too often, that’s exactly when political attention gets diverted to the next alarm. The result: The hardest to reach and most vulnerable populations are the ones left suffering, after everyone else looks away.

Ms. Yang first received Angelica’s lab report on June 17. The address listed was a P.O. box, and the phone number belonged to her sister, who said Angelica was living in Huron. That was a piece of luck: Huron is tiny; the city spans just 1.6 square miles. On her first visit, a worker at the Alamo Motel said she knew Angelica and directed Ms. Yang to a nearby homeless encampment. Angelica wasn’t there, so Ms. Yang returned a second time, bringing one of the health department nurses who could serve as an interpreter.

They made their way to the barren patch of land behind Huron Valley Foods, the local grocery store, where people took shelter in makeshift lean-tos composed of cardboard boxes, scrap wood ,and scavenged furniture, draped with sheets that served as ceilings and curtains. Yang stopped outside one of the structures, calling a greeting.

“Hi, I’m from the health department, I’m looking for Angelica.”

The nurse echoed her in Spanish.

Angelica emerged, squinting in the sunlight. Ms. Yang couldn’t tell if she was visibly pregnant yet, as her body was obscured by an oversized shirt. The two women were about the same age: Ms. Yang 26 and Angelica 27. Ms. Yang led her away from the tent, so they could speak privately. Angelica seemed reticent, surprised by the sudden appearance of the two health officers. “You’re not in trouble,” Ms. Yang said, before revealing the results of her blood test.

Angelica had never heard of syphilis.

“Have you been to prenatal care?”

Angelica shook her head. The local clinic had referred her to an obstetrician in Hanford, a 30-minute drive away. She had no car. She also mentioned that she didn’t intend to raise her baby; her two oldest children lived with her mother, and this one likely would, too.

Ms. Yang pulled out the CDC cards, showing them to Angelica and asking if she had experienced any of the symptoms illustrated. No, Angelica said, her lips pursed with disgust.

“Right now you still feel healthy, but this bacteria is still in your body,” Ms. Yang pressed. “You need to get the infection treated to prevent further health complications to yourself and your baby.”

The community clinic was just across the street. “Can we walk you over to the clinic and make sure you get seen so we can get this taken care of?”

Angelica demurred. She said she hadn’t showered for a week and wanted to wash up first. She said she’d go later.

Ms. Yang tried once more to extract a promise: “What time do you think you’ll go?”

“Today, for sure.”

Syphilis is called The Great Imitator: It can look like any number of diseases. In its first stage, the only evidence of infection is a painless sore at the bacteria’s point of entry. Weeks later, as the bacteria multiplies, skin rashes bloom on the palms of the hands and bottoms of the feet. Other traits of this stage include fever, headaches, muscle aches, sore throat, and fatigue. These symptoms eventually disappear and the patient progresses into the latent phase, which betrays no external signs. But if left untreated, after a decade or more, syphilis will reemerge in up to 30% of patients, capable of wreaking horror on a wide range of organ systems. Dr. Marion Sims, president of the American Medical Association in 1876, called it a “terrible scourge, which begins with lamb-like mildness and ends with lion-like rage that ruthlessly destroys everything in its way.”

The corkscrew-shaped bacteria can infiltrate the nervous system at any stage of the infection. Ms. Yang is haunted by her memory of interviewing a young man whose dementia was so severe that he didn’t know why he was in the hospital or how old he was. And regardless of symptoms or stage, the bacteria can penetrate the placenta to infect a fetus. Even in these cases the infection is unpredictable: Many babies are born with normal physical features, but others can have deformed bones or damaged brains, and they can struggle to hear, see, or breathe.

From its earliest days, syphilis has been shrouded in stigma. The first recorded outbreak was in the late 15th century, when Charles VIII led the French army to invade Naples. Italian physicians described French soldiers covered with pustules, dying from a sexually transmitted disease. As the affliction spread, Italians called it the French Disease. The French blamed the Neopolitans. It was also called the German, Polish, or Spanish disease, depending on which neighbor one wanted to blame. Even its name bears the taint of divine judgement: It comes from a 16th-century poem that tells of a shepherd, Syphilus, who offended the god Apollo and was punished with a hideous disease.

By 1937 in America, when former Surgeon General Thomas Parran wrote the book “Shadow on the Land,” he estimated some 680,000 people were under treatment for syphilis; about 60,000 babies were being born annually with congenital syphilis. There was no cure, and the stigma was so strong that public health officials feared even properly documenting cases.

Thanks to Dr. Parran’s ardent advocacy, Congress in 1938 passed the National Venereal Disease Control Act, which created grants for states to set up clinics and support testing and treatment. Other than a short-lived funding effort during World War I, this was the first coordinated federal push to respond to the disease.

Around the same time, the Public Health Service launched an effort to record the natural history of syphilis. Situated in Tuskegee, Ala., the infamous study recruited 600 black men. By the early 1940s, penicillin became widely available and was found to be a reliable cure, but the treatment was withheld from the study participants. Outrage over the ethical violations would cast a stain across syphilis research for decades to come and fuel generations of mistrust in the medical system among Black Americans that continues to this day.

With the introduction of penicillin, cases began to plummet. Twice, the CDC has announced efforts to wipe out the disease — once in the 1960s and again in 1999.

In the latest effort, the CDC announced that the United States had “a unique opportunity to eliminate syphilis within its borders,” thanks to historically low rates, with 80% of counties reporting zero cases. The concentration of cases in the South “identifies communities in which there is a fundamental failure of public health capacity,” the agency noted, adding that elimination — which it defined as fewer than 1,000 cases a year — would “decrease one of our most glaring racial disparities in health.”

Two years after the campaign began, cases started climbing, first among gay men and later, heterosexuals. Cases in women started accelerating in 2013, followed shortly by increasing numbers of babies born with syphilis.The reasons for failure are complex; people relaxed safer sex practices after the advent of potent HIV combination therapies, increased methamphetamine use drove riskier behavior and an explosion of online dating made it hard to track and test sexual partners, according to Dr. Ina Park, medical director of the California Prevention Training Center at the University of California San Francisco.

But federal and state public health efforts were hamstrung from the get-go. In 1999, the CDC said it would need about $35 million to $39 million in new federal funds annually for at least five years to eliminate syphilis. The agency got less than half of what it asked for, according to Jo Valentine, former program coordinator of the CDC’s Syphilis Elimination Effort. As cases rose, the CDC modified its goals in 2006 from 0.4 primary and secondary syphilis cases per 100,000 in population to 2.2 cases per 100,000. By 2013, as elimination seemed less and less viable, the CDC changed its focus to ending congenital syphilis only.

Since then, funding has remained anemic. From 2015 to 2020, the CDC’s budget for preventing sexually transmitted infections grew by 2.2%. Taking inflation into account, that’s a 7.4% reduction in purchasing power. In the same period, cases of syphilis, gonorrhea and chlamydia — the three STDs that have federally funded control programs — increased by nearly 30%.

“We have a long history of nearly eradicating something, then changing our attention, and seeing a resurgence in numbers,” said David Harvey, executive director of the National Coalition of STD Directors. “We have more congenital syphilis cases today in America than we ever had pediatric AIDS at the height of the AIDS epidemic. It’s heartbreaking.”

Adriane Casalotti, chief of government and public affairs at the National Association of County and City Health Officials, warns that the United States should not be surprised to see case counts continue to climb. “The bugs don’t go away,” she said. “They’re just waiting for the next opportunity, when you’re not paying attention.”

Ms. Yang waited until the end of the day, then called the clinic to see if Angelica had gone for her shot. She had not. Ms. Yang would have to block off another half day to visit Huron again, but she had three dozen other cases to deal with.

States in the South and West have seen the highest syphilis rates in recent years. In 2017, 64 babies in Fresno County were born with syphilis at a rate of 440 babies per 100,000 live births — about 19 times the national rate. While the county had managed to lower case counts in the two years that followed, the pandemic threatened to unravel that progress, forcing STD staffers to do COVID-19 contact tracing, pausing field visits to find infected people, and scaring patients from seeking care. Ms. Yang’s colleague handled three cases of stillbirth in 2020; in each, the woman was never diagnosed with syphilis because she feared catching the coronavirus and skipped prenatal care.

Ms. Yang, whose caseload peaked at 70 during a COVID-19 surge, knew she would not be able handle them all as thoroughly as she’d like to. “When I was being mentored by another investigator, he said: ‘You’re not a superhero. You can’t save everybody,’” she said. She prioritizes men who have sex with men, because there’s a higher prevalence of syphilis in that population, and pregnant people, because of the horrific consequences for babies.

The job of a disease intervention specialist isn’t for everyone: It means meeting patients whenever and wherever they are available — in the mop closet of a bus station, in a quiet parking lot — to inform them about the disease, to extract names of sex partners and to encourage treatment. Patients are often reluctant to talk. They can get belligerent, upset that “the government” has their personal information or shattered at the thought that a partner is likely cheating on them. Salaries typically start in the low $40,000s.

Jena Adams, Ms. Yang’s supervisor, has eight investigators working on HIV and syphilis. In the middle of 2020, she lost two and replaced them only recently. “It’s been exhausting,” Ms. Adams said. She has only one specialist who is trained to take blood samples in the field, crucial for guaranteeing that the partners of those who test positive for syphilis also get tested. Ms. Adams wants to get phlebotomy training for the rest of her staff, but it’s $2,000 per person. The department also doesn’t have anyone who can administer penicillin injections in the field; that would have been key when Ms. Yang met Angelica. For a while, a nurse who worked in the tuberculosis program would ride along to give penicillin shots on a volunteer basis. Then he, too, left the health department.

Much of the resources in public health trickle down from the CDC, which distributes money to states, which then parcel it out to counties. The CDC gets its budget from Congress, which tells the agency, by line item, exactly how much money it can spend to fight a disease or virus, in an uncommonly specific manner not seen in many other agencies. The decisions are often politically driven and can be detached from actual health needs.

When the House and Senate appropriations committees meet to decide how much the CDC will get for each line item, they are barraged by lobbyists for individual disease interests. Stephanie Arnold Pang, senior director of policy and government relations at the National Coalition of STD Directors, can pick out the groups by sight: breast cancer wears pink, Alzheimer’s goes in purple, multiple sclerosis comes in orange, HIV in red. STD prevention advocates, like herself, don a green ribbon, but they’re far outnumbered.

And unlike diseases that might already be familiar to lawmakers, or have patient and family spokespeople who can tell their own powerful stories, syphilis doesn’t have many willing poster children. “Congressmen don’t wake up one day and say, ‘Oh hey, there’s congenital syphilis in my jurisdiction.’ You have to raise awareness,” Arnold Pang said. It can be hard jockeying for a meeting. “Some offices might say, ‘I don’t have time for you because we’ve just seen HIV.’ ... Sometimes, it feels like you’re talking into a void.”

The consequences of the political nature of public health funding have become more obvious during the coronavirus pandemic. The 2014 Ebola epidemic was seen as a “global wakeup call” that the world wasn’t prepared for a major pandemic, yet in 2018, the CDC scaled back its epidemic prevention work as money ran out. “If you’ve got to choose between Alzheimer’s research and stopping an outbreak that may not happen? Stopping an outbreak that might not happen doesn’t do well,” said Dr. Frieden, the former CDC director. “The CDC needs to have more money and more flexible money. Otherwise, we’re going to be in this situation long term.”

In May 2021, President Joe Biden’s administration announced it would set aside $7.4 billion over the next five years to hire and train public health workers, including $1.1 billion for more disease intervention specialists like Ms. Yang. Public health officials are thrilled to have the chance to expand their workforce, but some worry the time horizon may be too short. “We’ve seen this movie before, right?” Dr. Frieden said. “Everyone gets concerned when there’s an outbreak, and when that outbreak stops, the headlines stop, and an economic downturn happens, the budget gets cut.”

Fresno’s STD clinic was shuttered in 2010 amid the Great Recession. Many others have vanished since the passage of the Affordable Care Act. Health leaders thought “by magically beefing up the primary care system, that we would do a better job of catching STIs and treating them,” said Mr. Harvey, the executive director of the National Coalition of STD Directors. That hasn’t worked out; people want access to anonymous services, and primary care doctors often don’t have STDs top of mind. The coalition is lobbying Congress for funding to support STD clinical services, proposing a three-year demonstration project funded at $600 million.

It’s one of Ms. Adams’ dreams to see Fresno’s STD clinic restored as it was. “You could come in for an HIV test and get other STDs checked,” she said. “And if a patient is positive, you can give a first injection on the spot.”

On Aug. 12, Ms. Yang set out for Huron again, speeding past groves of almond trees and fields of grapes in the department’s white Chevy Cruze. She brought along a colleague, Jorge Sevilla, who had recently transferred to the STD program from COVID-19 contact tracing. Ms. Yang was anxious to find Angelica again. “She’s probably in her second trimester now,” she said.

They found her outside of a pale yellow house a few blocks from the homeless encampment; the owner was letting her stay in a shed tucked in the corner of the dirt yard. This time, it was evident that she was pregnant. Ms. Yang noted that Angelica was wearing a wig; hair loss is a symptom of syphilis.

“Do you remember me?” Ms. Yang asked.

Angelica nodded. She didn’t seem surprised to see Ms. Yang again. (I came along, and Mr. Sevilla explained who I was and that I was writing about syphilis and the people affected by it. Angelica signed a release for me to report about her case, and she said she had no problem with me writing about her or even using her full name. ProPublica chose to only print her first name.)

“How are you doing? How’s the baby?”

“Bien.”

“So the last time we talked, we were going to have you go to United Healthcare Center to get treatment. Have you gone since?”

Angelica shook her head.

“We brought some gift cards...” Mr. Sevilla started in Spanish. The department uses them as incentives for completing injections. But Angelica was already shaking her head. The nearest Walmart was the next town over.

Ms. Yang turned to her partner. “Tell her: So the reason why we’re coming out here again is because we really need her to go in for treatment. ... We really are concerned for the baby’s health especially since she’s had the infection for quite a while.”

Angelica listened while Mr. Sevilla interpreted, her eyes on the ground. Then she looked up. “Orita?” she asked. Right now?

“I’ll walk with you,” Ms. Yang offered. Angelica shook her head. “She said she wants to shower first before she goes over there,” Mr. Sevilla said.

Ms. Yang made a face. “She said that to me last time.” Ms. Yang offered to wait, but Angelica didn’t want the health officers to linger by the house. She said she would meet them by the clinic in 15 minutes.

Ms. Yang was reluctant to let her go but again had no other option. She and Mr. Sevilla drove to the clinic, then stood on the corner of the parking lot, staring down the road.

Talk to the pediatricians, obstetricians, and families on the front lines of the congenital syphilis surge and it becomes clear why Ms. Yang and others are trying so desperately to prevent cases. Dr. J. B. Cantey, associate professor in pediatrics at UT Health San Antonio, remembers a baby girl born at 25 weeks gestation who weighed a pound and a half. Syphilis had spread through her bones and lungs. She spent five months in the neonatal intensive care unit, breathing through a ventilator, and was still eating through a tube when she was discharged.

Then, there are the miscarriages, the stillbirths and the inconsolable parents. Dr. Irene Stafford, an associate professor and maternal-fetal medicine specialist at UT Health in Houston, cannot forget a patient who came in at 36 weeks for a routine checkup, pregnant with her first child. Dr. Stafford realized that there was no heartbeat. “She could see on my face that something was really wrong,” Dr. Stafford recalled. She had to let the patient know that syphilis had killed her baby. “She was hysterical, just bawling,” Dr. Stafford said. “I’ve seen people’s families ripped apart and I’ve seen beautiful babies die.” Fewer than 10% of patients who experience a stillbirth are tested for syphilis, suggesting that cases are underdiagnosed.

A Texas grandmother named Solidad Odunuga offers a glimpse into what the future could hold for Angelica’s mother, who may wind up raising her baby.

In February of last year, Ms. Odunuga got a call from the Lyndon B. Johnson Hospital in Houston. A nurse told her that her daughter was about to give birth and that child protective services had been called. Ms. Odunuga had lost contact with her daughter, who struggled with homelessness and substance abuse. She arrived in time to see her grandson delivered, premature at 30 weeks old, weighing 2.7 pounds. He tested positive for syphilis.

When a child protective worker asked Ms. Odunuga to take custody of the infant, she felt a wave of dread. “I was in denial,” she recalled. “I did not plan to be a mom again.” The baby’s medical problems were daunting: “Global developmental delays ... concerns for visual impairments ... high risk of cerebral palsy,” read a note from the doctor at the time.

Still, Ms. Odunuga visited her grandson every day for three months, driving to the NICU from her job at the University of Houston. “I’d put him in my shirt to keep him warm and hold him there.” She fell in love. She named him Emmanuel.

Once Emmanuel was discharged, Ms. Odunuga realized she had no choice but to quit her job. While Medicaid covered the costs of Emmanuel’s treatment, it was on her to care for him. From infancy, Emmanuel’s life has been a whirlwind of constant therapy. Today, at 20 months old, Odunuga brings him to physical, occupational, speech, and developmental therapy, each a different appointment on a different day of the week.

Emmanuel has thrived beyond what his doctors predicted, toddling so fast that Ms. Odunuga can’t look away for a minute and beaming as he waves his favorite toy phone. Yet he still suffers from gagging issues, which means Ms. Odunuga can’t feed him any solid foods. Liquid gets into his lungs when he aspirates; it has led to pneumonia three times. Emmanuel has a special stroller that helps keep his head in a position that won’t aggravate his persistent reflux, but Odunuga said she still has to pull over on the side of the road sometimes when she hears him projectile vomiting from the backseat.

The days are endless. Once she puts Emmanuel to bed, Ms. Odunuga starts planning the next day’s appointments. “I’ve had to cry alone, scream out alone,” she said. “Sometimes I wake up and think, Is this real? And then I hear him in the next room.”

Putting aside the challenge of eliminating syphilis entirely, everyone agrees it’s both doable and necessary to prevent newborn cases. “There was a crisis in perinatal HIV almost 30 years ago and people stood up and said this is not OK — it’s not acceptable for babies to be born in that condition. ... [We] brought it down from 1,700 babies born each year with perinatal HIV to less than 40 per year today,” said Virginia Bowen, an epidemiologist at the CDC. “Now here we are with a slightly different condition. We can also stand up and say, ‘This is not acceptable.’” Belarus, Bermuda, Cuba, Malaysia, Thailand, and Sri Lanka are among countries recognized by the World Health Organization for eliminating congenital syphilis.

Success starts with filling gaps across the health care system.

For almost a century, public health experts have advocated for testing pregnant patients more than once for syphilis in order to catch the infection. But policies nationwide still don’t reflect this best practice. Six states have no prenatal screening requirement at all. Even in states that require three tests, public health officials say that many physicians aren’t aware of the requirements. Dr. Stafford, the maternal-fetal medicine specialist in Houston, says she’s tired of hearing her own peers in medicine tell her, “Oh, syphilis is a problem?”

It costs public health departments less than 25 cents a dose to buy penicillin, but for a private practice, it’s more than $1,000, according to Dr. Park of the University of California San Francisco. “There’s no incentive for a private physician to stock a dose that could expire before it’s used, so they often don’t have it. So a woman comes in, they say, ‘We’ll send you to the emergency department or health department to get it,’ then [the patients] don’t show up.”

A vaccine would be invaluable for preventing spread among people at high risk for reinfection. But there is none. Scientists only recently figured out how to grow the bacteria in the lab, prompting grants from the National Institutes of Health to fund research into a vaccine. Dr. Justin Radolf, a researcher at the University of Connecticut School of Medicine, said he hopes his team will have a vaccine candidate by the end of its five-year grant. But it’ll likely take years more to find a manufacturer and run human trials.

Public health agencies also need to recognize that many of the hurdles to getting pregnant people treated involve access to care, economic stability, safe housing and transportation. In Fresno, Ms. Adams has been working on ways her department can collaborate with mental health services. Recently, one of her disease intervention specialists managed to get a pregnant woman treated with penicillin shots and, at the patient’s request, connected her with an addiction treatment center.

Gaining a patient’s cooperation means seeing them as complex humans instead of just a case to solve. “There may be past traumas with the health care system,” said Cynthia Deverson, project manager of the Houston Fetal Infant Morbidity Review. “There’s the fear of being discovered if she’s doing something illegal to survive. ... She may need to be in a certain place at a certain time so she can get something to eat, or maybe it’s the only time of the day that’s safe for her to sleep. They’re not going to tell you that. Yes, they understand there’s a problem, but it’s not an immediate threat, maybe they don’t feel bad yet, so obviously this is not urgent. ...

“What helps to gain trust is consistency,” she said. “Literally, it’s seeing that [disease specialist] constantly, daily. ... The woman can see that you’re not going to harm her, you’re saying, ‘I’m here at this time if you need me.’”

Ms. Yang stood outside the clinic, waiting for Angelica to show up, baking in the 90-degree heat. Her feelings ranged from irritation — Why didn’t she just go? I’d have more energy for other cases — to an appreciation for the parts of Angelica’s story that she didn’t know — She’s in survival mode. I need to be more patient.

Fifteen minutes ticked by, then 20.

“OK,” Ms. Yang announced. “We’re going back.”

She asked Sevilla if he would be OK if they drove Angelica to the clinic; they technically weren’t supposed to because of coronavirus precautions, but Ms. Yang wasn’t sure she could convince Angelica to walk. Mr. Sevilla gave her the thumbs up.

When they pulled up, they saw Angelica sitting in the backyard, chatting with a friend. She now wore a fresh T-shirt and had shoes on her feet. Angelica sat silently in the back seat as Ms. Yang drove to the clinic. A few minutes later, they pulled up to the parking lot.

Finally, Ms. Yang thought. We got her here.

The clinic was packed with people waiting for COVID-19 tests and vaccinations. A worker there had previously told Ms. Yang that a walk-in would be fine, but a receptionist now said they were too busy to treat Angelica. She would have to return.

Ms. Yang felt a surge of frustration, sensing that her hard-fought opportunity was slipping away. She tried to talk to the nurse supervisor, but he wasn’t available. She tried to leave the gift cards at the office to reward Angelica if she came, but the receptionist said she couldn’t hold them. While Ms. Yang negotiated, Mr. Sevilla sat with Angelica in the car, waiting.

Finally, Ms. Yang accepted this was yet another thing she couldn’t control.

She drove Angelica back to the yellow house. As they arrived, she tried once more to impress on her just how important it was to get treated, asking Mr. Sevilla to interpret. “We don’t want it to get any more serious, because she can go blind, she could go deaf, she could lose her baby.”

Angelica already had the door halfway open.

“So on a scale from one to 10, how important is this to get treated?” Ms. Yang asked.

“Ten,” Angelica said. Ms. Yang reminded her of the appointment that afternoon. Then Angelica stepped out and returned to the dusty yard.

Ms. Yang lingered for a moment, watching Angelica go. Then she turned the car back onto the highway and set off toward Fresno, knowing, already, that she’d be back.

Postscript: A reporter visited Huron twice more in the months that followed, including once independently to try to interview Angelica, but she wasn’t in town. Ms. Yang has visited Huron twice more as well — six times in total thus far. In October, a couple of men at the yellow house said Angelica was still in town, still pregnant. Ms. Yang and Mr. Sevilla spent an hour driving around, talking to residents, hoping to catch Angelica. But she was nowhere to be found.

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Uncontrolled growth isn’t the only way cancers wreak havoc on the human body. These aggregations of freely dividing cells also release chemicals that can cause damage from a distance. But pinning down how they harm faraway healthy tissues isn’t straightforward.

Fortunately, biologists can turn to the tiny fruit fly to address some of these questions: This insect’s body is not as complex as ours in many ways, but we share important genes and organ functions.

Fruit flies already are a crucial and inexpensive animal for genetics research. Because their life span is about 7 weeks, investigators can track the effects of mutations across several generations in a short period. The animals also are proving useful for learning how chemicals released by malignant tumors can harm tissues in the body that are not near the cancer.

One recent lesson from the fruit flies involves the blood-brain barrier, which determines which molecules gain access to the brain. Researchers at the University of California, Berkeley, have found that malignant tumors in the tiny insects release interleukin 6 (IL-6), an inflammatory chemical that disrupts this important barrier. The investigators showed that the tumors act similarly in mice.

When the scientists blocked the effects of IL-6, both the fruit flies and the mice lived longer. Even if cancer cells persisted, damage related to IL-6 could be diminished.

Fruit flies and mice are only distant relatives of each other and of humans, and the relevance of this discovery to human cancers has not been established. One hurdle is that IL-6 has many important, normal functions related to health. Researchers need to learn how to target only its unwanted blood-brain barrier effects.

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

Uncontrolled growth isn’t the only way cancers wreak havoc on the human body. These aggregations of freely dividing cells also release chemicals that can cause damage from a distance. But pinning down how they harm faraway healthy tissues isn’t straightforward.

Fortunately, biologists can turn to the tiny fruit fly to address some of these questions: This insect’s body is not as complex as ours in many ways, but we share important genes and organ functions.

Fruit flies already are a crucial and inexpensive animal for genetics research. Because their life span is about 7 weeks, investigators can track the effects of mutations across several generations in a short period. The animals also are proving useful for learning how chemicals released by malignant tumors can harm tissues in the body that are not near the cancer.

One recent lesson from the fruit flies involves the blood-brain barrier, which determines which molecules gain access to the brain. Researchers at the University of California, Berkeley, have found that malignant tumors in the tiny insects release interleukin 6 (IL-6), an inflammatory chemical that disrupts this important barrier. The investigators showed that the tumors act similarly in mice.

When the scientists blocked the effects of IL-6, both the fruit flies and the mice lived longer. Even if cancer cells persisted, damage related to IL-6 could be diminished.

Fruit flies and mice are only distant relatives of each other and of humans, and the relevance of this discovery to human cancers has not been established. One hurdle is that IL-6 has many important, normal functions related to health. Researchers need to learn how to target only its unwanted blood-brain barrier effects.

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

Uncontrolled growth isn’t the only way cancers wreak havoc on the human body. These aggregations of freely dividing cells also release chemicals that can cause damage from a distance. But pinning down how they harm faraway healthy tissues isn’t straightforward.

Fortunately, biologists can turn to the tiny fruit fly to address some of these questions: This insect’s body is not as complex as ours in many ways, but we share important genes and organ functions.

Fruit flies already are a crucial and inexpensive animal for genetics research. Because their life span is about 7 weeks, investigators can track the effects of mutations across several generations in a short period. The animals also are proving useful for learning how chemicals released by malignant tumors can harm tissues in the body that are not near the cancer.

One recent lesson from the fruit flies involves the blood-brain barrier, which determines which molecules gain access to the brain. Researchers at the University of California, Berkeley, have found that malignant tumors in the tiny insects release interleukin 6 (IL-6), an inflammatory chemical that disrupts this important barrier. The investigators showed that the tumors act similarly in mice.

When the scientists blocked the effects of IL-6, both the fruit flies and the mice lived longer. Even if cancer cells persisted, damage related to IL-6 could be diminished.

Fruit flies and mice are only distant relatives of each other and of humans, and the relevance of this discovery to human cancers has not been established. One hurdle is that IL-6 has many important, normal functions related to health. Researchers need to learn how to target only its unwanted blood-brain barrier effects.

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

The physician-patient relationship is a key factor in preventing litigation following cutaneous laser surgery, according to Mathew M. Avram, MD, JD.

merznatalia/Thinkstock

“Numerous studies indicate that good communication and rapport are the most important means to avoid a lawsuit,” Dr. Avram, director of laser, cosmetics, and dermatologic surgery at Massachusetts General Hospital, Boston, said during a virtual course on laser and aesthetic skin therapy. “It is helpful to say that the outcome was not optimal or what you were anticipating. Communicate your plan [for the complication] clearly and honestly to your patient. The patient may not understand the severity of the complication. If they don’t, they will either leave it alone or they will go elsewhere and may receive poor care.” He added that in New England, “we have some stoic patients who may say ‘I don’t want to bother the doctor’ or ‘It’s my fault for having the procedure done.’ ”

Establishing effective communication with patients from the outset is good practice, he continued, because 75% of physicians in low-risk specialties will face a malpractice claim by age 65. Nearly a decade ago Dr. Avram, H. Ray Jalian, MD, and Chris Jalian, JD, published results from a national legal database analysis identifying common errors and risk factors for litigation in cutaneous surgery. Their search yielded 1,807 documents with 174 unique legal claims involving injury from a cutaneous laser treatment, from 1985 to 2012. The most common litigated procedures were laser hair removal, rejuvenation (mostly related to intense pulsed-light treatments), and laser treatment of leg veins, while the most common injuries sustained were burns, scars, and pigmentary changes. The most common causes of legal action were lack of informed consent and fraud.

Among the 120 cases with public decisions, cases favored the plaintiff 51% of the time. “That’s unusual,” said Dr. Avram, president of American Society for Dermatologic Surgery. “Usually, physicians do better, but I think the fact that they’re cosmetic cases probably shades things a little bit.” The median monetary award was $350,000 and ranged from $5,000 to $2,145,000. The two largest judgments were for improper use of topical anesthesia that led to deaths of patients in laser hair removal cases.

In a separate analysis, the same authors searched an online national database to identify the incidence of medical professional liability claims resulting from cutaneous laser surgery performed by nonphysician operators (NPOs) from 1999 to 2012. Among the 175 cases identified, 43% involved an NPO. “In fact, the cases involving NPOs exploded over a 4-year period; they grew from 36% in 2008 of cases to 78% in 2011,” Dr. Avram said. “This was even more true for laser hair removal.”

The practice setting turned out to be a factor. Only 23% of NPO litigation involving laser procedures arose in medical office settings, while 77% of cases involving NPOs were performed outside of traditional medical settings such as in salons and medical spas – mostly for laser hair removal. “We updated this information by examining the setting for nonphysician operator litigation between 2012 and 2017 and found that 66% of cases involving NPOs were performed outside of a traditional medical setting, while 34% of NPO litigation arose in medical office settings,” Dr. Avram said during the meeting, which was named What’s the Truth? and sponsored by Harvard Medical School, Massachusetts General Hospital, and the Wellman Center for Photomedicine. “That’s close to a 2 to 1 ratio.”

In an analysis of medical professional liability claims involving Mohs surgery from 1989 to 2011, 26 of the 42 cases identified involved a primary defendant who was not a Mohs surgeon. In the 26 cases, the most common reasons for lawsuits were failure or delay of diagnosis of a skin cancer, cosmetic outcome issues, lack of informed consent, and delay or failure to refer to a Mohs surgeon. Of the cases that involved Mohs surgeons, the most common causes were lack of proper informed consent and cosmetic outcome issues, but “these cases were overwhelmingly decided in favor of the surgeons,” said Dr. Avram, one of the study authors.

On a related note, Dr. Avram underscored the importance of biopsy-site photography, “because patients and physicians misidentify biopsy sites too commonly,” he said. In a single-center study of 34 biopsy sites of cutaneous head and neck malignancies, patients misidentified the biopsy site 4-7 weeks out in 29% of the cases. Blinded dermatologists and the patient misidentified the biopsy site in 12% of the cases. “Good biopsy site photography should be mandatory in your practice,” he advised.

Clinicians can avoid cutaneous laser surgery complications only by not treating patients. “Complications and side effects are inevitable; you need to know your limits,” he said. “Even in skilled hands, if you treat enough patients, you will encounter challenging side effects. Do not perform a procedure that might produce a side effect that you cannot recognize and treat.”

The best way to avoid complications is to trust your eyes – not the laser – since the same device made by the same manufacturer may produce highly different outputs at the same setting (see J Am Acad Dermatol. 2016;74[5]:807-19).

“Moreover, lasers can produce much different energies after they have been serviced,” Dr. Avram said. “Do not memorize settings. Do not blindly replicate recommended settings from a colleague or a device manufacturer,” he advised. “Some devices are not externally calibrated. Therefore, the settings on one device may not translate the same way to yours. Often, device manufacturers underplay the settings. Safe and unsafe laser endpoints and close observation are the best means to avoiding clinical complications. That means you follow clinical endpoints, not fluences. The key clinical finding is the endpoint, not the energy setting.”

Temporary and expected side effects include erythema, edema, and purpura. “With these it’s just handholding and unlikely to lead to any legal consequences,” he continued. “With temporary hyperpigmentation that can occur with laser hair removal, time is one your side, because typically this will resolve before any litigation progresses. Permanent side effects from lasers and light sources and injectables are a different issue, things like permanent hypopigmentation, depigmentation, and scarring. These are most likely to produce liability.”

In Dr. Avram’s opinion, complications are best handled with widespread communication. “There is a temptation to avoid a patient with a poor outcome or side effect,” he said. “This is bad medicine and rightfully angers your patient and increases the risk of a lawsuit. [Resist] the temptation to avoid showing a poor outcome to a colleague. Many complications can be significantly improved or cleared with timely and appropriate interventions. You should always document your efforts.”

Dr. Avram disclosed that he has received consulting fees from Allergan and Galderma. He is a member of the scientific advisory board for Allergan and Soliton, is an investigator for Endo, and holds stock options in La Jolla NanoMedical Inc.

[email protected]

The physician-patient relationship is a key factor in preventing litigation following cutaneous laser surgery, according to Mathew M. Avram, MD, JD.

merznatalia/Thinkstock

“Numerous studies indicate that good communication and rapport are the most important means to avoid a lawsuit,” Dr. Avram, director of laser, cosmetics, and dermatologic surgery at Massachusetts General Hospital, Boston, said during a virtual course on laser and aesthetic skin therapy. “It is helpful to say that the outcome was not optimal or what you were anticipating. Communicate your plan [for the complication] clearly and honestly to your patient. The patient may not understand the severity of the complication. If they don’t, they will either leave it alone or they will go elsewhere and may receive poor care.” He added that in New England, “we have some stoic patients who may say ‘I don’t want to bother the doctor’ or ‘It’s my fault for having the procedure done.’ ”

Establishing effective communication with patients from the outset is good practice, he continued, because 75% of physicians in low-risk specialties will face a malpractice claim by age 65. Nearly a decade ago Dr. Avram, H. Ray Jalian, MD, and Chris Jalian, JD, published results from a national legal database analysis identifying common errors and risk factors for litigation in cutaneous surgery. Their search yielded 1,807 documents with 174 unique legal claims involving injury from a cutaneous laser treatment, from 1985 to 2012. The most common litigated procedures were laser hair removal, rejuvenation (mostly related to intense pulsed-light treatments), and laser treatment of leg veins, while the most common injuries sustained were burns, scars, and pigmentary changes. The most common causes of legal action were lack of informed consent and fraud.

Among the 120 cases with public decisions, cases favored the plaintiff 51% of the time. “That’s unusual,” said Dr. Avram, president of American Society for Dermatologic Surgery. “Usually, physicians do better, but I think the fact that they’re cosmetic cases probably shades things a little bit.” The median monetary award was $350,000 and ranged from $5,000 to $2,145,000. The two largest judgments were for improper use of topical anesthesia that led to deaths of patients in laser hair removal cases.

In a separate analysis, the same authors searched an online national database to identify the incidence of medical professional liability claims resulting from cutaneous laser surgery performed by nonphysician operators (NPOs) from 1999 to 2012. Among the 175 cases identified, 43% involved an NPO. “In fact, the cases involving NPOs exploded over a 4-year period; they grew from 36% in 2008 of cases to 78% in 2011,” Dr. Avram said. “This was even more true for laser hair removal.”

The practice setting turned out to be a factor. Only 23% of NPO litigation involving laser procedures arose in medical office settings, while 77% of cases involving NPOs were performed outside of traditional medical settings such as in salons and medical spas – mostly for laser hair removal. “We updated this information by examining the setting for nonphysician operator litigation between 2012 and 2017 and found that 66% of cases involving NPOs were performed outside of a traditional medical setting, while 34% of NPO litigation arose in medical office settings,” Dr. Avram said during the meeting, which was named What’s the Truth? and sponsored by Harvard Medical School, Massachusetts General Hospital, and the Wellman Center for Photomedicine. “That’s close to a 2 to 1 ratio.”

In an analysis of medical professional liability claims involving Mohs surgery from 1989 to 2011, 26 of the 42 cases identified involved a primary defendant who was not a Mohs surgeon. In the 26 cases, the most common reasons for lawsuits were failure or delay of diagnosis of a skin cancer, cosmetic outcome issues, lack of informed consent, and delay or failure to refer to a Mohs surgeon. Of the cases that involved Mohs surgeons, the most common causes were lack of proper informed consent and cosmetic outcome issues, but “these cases were overwhelmingly decided in favor of the surgeons,” said Dr. Avram, one of the study authors.

On a related note, Dr. Avram underscored the importance of biopsy-site photography, “because patients and physicians misidentify biopsy sites too commonly,” he said. In a single-center study of 34 biopsy sites of cutaneous head and neck malignancies, patients misidentified the biopsy site 4-7 weeks out in 29% of the cases. Blinded dermatologists and the patient misidentified the biopsy site in 12% of the cases. “Good biopsy site photography should be mandatory in your practice,” he advised.

Clinicians can avoid cutaneous laser surgery complications only by not treating patients. “Complications and side effects are inevitable; you need to know your limits,” he said. “Even in skilled hands, if you treat enough patients, you will encounter challenging side effects. Do not perform a procedure that might produce a side effect that you cannot recognize and treat.”

The best way to avoid complications is to trust your eyes – not the laser – since the same device made by the same manufacturer may produce highly different outputs at the same setting (see J Am Acad Dermatol. 2016;74[5]:807-19).

“Moreover, lasers can produce much different energies after they have been serviced,” Dr. Avram said. “Do not memorize settings. Do not blindly replicate recommended settings from a colleague or a device manufacturer,” he advised. “Some devices are not externally calibrated. Therefore, the settings on one device may not translate the same way to yours. Often, device manufacturers underplay the settings. Safe and unsafe laser endpoints and close observation are the best means to avoiding clinical complications. That means you follow clinical endpoints, not fluences. The key clinical finding is the endpoint, not the energy setting.”

Temporary and expected side effects include erythema, edema, and purpura. “With these it’s just handholding and unlikely to lead to any legal consequences,” he continued. “With temporary hyperpigmentation that can occur with laser hair removal, time is one your side, because typically this will resolve before any litigation progresses. Permanent side effects from lasers and light sources and injectables are a different issue, things like permanent hypopigmentation, depigmentation, and scarring. These are most likely to produce liability.”

In Dr. Avram’s opinion, complications are best handled with widespread communication. “There is a temptation to avoid a patient with a poor outcome or side effect,” he said. “This is bad medicine and rightfully angers your patient and increases the risk of a lawsuit. [Resist] the temptation to avoid showing a poor outcome to a colleague. Many complications can be significantly improved or cleared with timely and appropriate interventions. You should always document your efforts.”

Dr. Avram disclosed that he has received consulting fees from Allergan and Galderma. He is a member of the scientific advisory board for Allergan and Soliton, is an investigator for Endo, and holds stock options in La Jolla NanoMedical Inc.

[email protected]

The physician-patient relationship is a key factor in preventing litigation following cutaneous laser surgery, according to Mathew M. Avram, MD, JD.

merznatalia/Thinkstock

“Numerous studies indicate that good communication and rapport are the most important means to avoid a lawsuit,” Dr. Avram, director of laser, cosmetics, and dermatologic surgery at Massachusetts General Hospital, Boston, said during a virtual course on laser and aesthetic skin therapy. “It is helpful to say that the outcome was not optimal or what you were anticipating. Communicate your plan [for the complication] clearly and honestly to your patient. The patient may not understand the severity of the complication. If they don’t, they will either leave it alone or they will go elsewhere and may receive poor care.” He added that in New England, “we have some stoic patients who may say ‘I don’t want to bother the doctor’ or ‘It’s my fault for having the procedure done.’ ”

Establishing effective communication with patients from the outset is good practice, he continued, because 75% of physicians in low-risk specialties will face a malpractice claim by age 65. Nearly a decade ago Dr. Avram, H. Ray Jalian, MD, and Chris Jalian, JD, published results from a national legal database analysis identifying common errors and risk factors for litigation in cutaneous surgery. Their search yielded 1,807 documents with 174 unique legal claims involving injury from a cutaneous laser treatment, from 1985 to 2012. The most common litigated procedures were laser hair removal, rejuvenation (mostly related to intense pulsed-light treatments), and laser treatment of leg veins, while the most common injuries sustained were burns, scars, and pigmentary changes. The most common causes of legal action were lack of informed consent and fraud.

Among the 120 cases with public decisions, cases favored the plaintiff 51% of the time. “That’s unusual,” said Dr. Avram, president of American Society for Dermatologic Surgery. “Usually, physicians do better, but I think the fact that they’re cosmetic cases probably shades things a little bit.” The median monetary award was $350,000 and ranged from $5,000 to $2,145,000. The two largest judgments were for improper use of topical anesthesia that led to deaths of patients in laser hair removal cases.

In a separate analysis, the same authors searched an online national database to identify the incidence of medical professional liability claims resulting from cutaneous laser surgery performed by nonphysician operators (NPOs) from 1999 to 2012. Among the 175 cases identified, 43% involved an NPO. “In fact, the cases involving NPOs exploded over a 4-year period; they grew from 36% in 2008 of cases to 78% in 2011,” Dr. Avram said. “This was even more true for laser hair removal.”

The practice setting turned out to be a factor. Only 23% of NPO litigation involving laser procedures arose in medical office settings, while 77% of cases involving NPOs were performed outside of traditional medical settings such as in salons and medical spas – mostly for laser hair removal. “We updated this information by examining the setting for nonphysician operator litigation between 2012 and 2017 and found that 66% of cases involving NPOs were performed outside of a traditional medical setting, while 34% of NPO litigation arose in medical office settings,” Dr. Avram said during the meeting, which was named What’s the Truth? and sponsored by Harvard Medical School, Massachusetts General Hospital, and the Wellman Center for Photomedicine. “That’s close to a 2 to 1 ratio.”

In an analysis of medical professional liability claims involving Mohs surgery from 1989 to 2011, 26 of the 42 cases identified involved a primary defendant who was not a Mohs surgeon. In the 26 cases, the most common reasons for lawsuits were failure or delay of diagnosis of a skin cancer, cosmetic outcome issues, lack of informed consent, and delay or failure to refer to a Mohs surgeon. Of the cases that involved Mohs surgeons, the most common causes were lack of proper informed consent and cosmetic outcome issues, but “these cases were overwhelmingly decided in favor of the surgeons,” said Dr. Avram, one of the study authors.

On a related note, Dr. Avram underscored the importance of biopsy-site photography, “because patients and physicians misidentify biopsy sites too commonly,” he said. In a single-center study of 34 biopsy sites of cutaneous head and neck malignancies, patients misidentified the biopsy site 4-7 weeks out in 29% of the cases. Blinded dermatologists and the patient misidentified the biopsy site in 12% of the cases. “Good biopsy site photography should be mandatory in your practice,” he advised.

Clinicians can avoid cutaneous laser surgery complications only by not treating patients. “Complications and side effects are inevitable; you need to know your limits,” he said. “Even in skilled hands, if you treat enough patients, you will encounter challenging side effects. Do not perform a procedure that might produce a side effect that you cannot recognize and treat.”

The best way to avoid complications is to trust your eyes – not the laser – since the same device made by the same manufacturer may produce highly different outputs at the same setting (see J Am Acad Dermatol. 2016;74[5]:807-19).

“Moreover, lasers can produce much different energies after they have been serviced,” Dr. Avram said. “Do not memorize settings. Do not blindly replicate recommended settings from a colleague or a device manufacturer,” he advised. “Some devices are not externally calibrated. Therefore, the settings on one device may not translate the same way to yours. Often, device manufacturers underplay the settings. Safe and unsafe laser endpoints and close observation are the best means to avoiding clinical complications. That means you follow clinical endpoints, not fluences. The key clinical finding is the endpoint, not the energy setting.”

Temporary and expected side effects include erythema, edema, and purpura. “With these it’s just handholding and unlikely to lead to any legal consequences,” he continued. “With temporary hyperpigmentation that can occur with laser hair removal, time is one your side, because typically this will resolve before any litigation progresses. Permanent side effects from lasers and light sources and injectables are a different issue, things like permanent hypopigmentation, depigmentation, and scarring. These are most likely to produce liability.”

In Dr. Avram’s opinion, complications are best handled with widespread communication. “There is a temptation to avoid a patient with a poor outcome or side effect,” he said. “This is bad medicine and rightfully angers your patient and increases the risk of a lawsuit. [Resist] the temptation to avoid showing a poor outcome to a colleague. Many complications can be significantly improved or cleared with timely and appropriate interventions. You should always document your efforts.”

Dr. Avram disclosed that he has received consulting fees from Allergan and Galderma. He is a member of the scientific advisory board for Allergan and Soliton, is an investigator for Endo, and holds stock options in La Jolla NanoMedical Inc.

[email protected]

On Nov. 2, the Centers for Disease Control and Prevention endorsed vaccination with the Pfizer/BioNTech COVID-19 vaccine for children aged 5-11 years. What are some best practices for meeting the challenges of immunizing this younger age group?

This news organization spoke to several pediatric experts to get answers.

More than 6 million children and adolescents (up to age 18 years) in the United States have been infected with SARS-CoV-2. Children represent about 17% of all cases, and an estimated 0.1%-2% of infected children end up hospitalized, according to Oct. 28 data from the American Academy of Pediatrics.

Physicians and other health care practitioners are gearing up for what could be an influx of patients. “Pediatricians are standing by to talk with families about the vaccine and to administer the vaccine to children as soon as possible,” Lee Savio Beers, MD, FAAP, president of the AAP, said in a statement.

In this Q&A, this news organization asked for additional advice from Sara “Sally” Goza, MD, a pediatrician in Fayetteville, Georgia, and immediate past president of the AAP; Peter Hotez, MD, PhD, dean of the National School of Tropical Medicine at Baylor College of Medicine and codirector of the Texas Children’s Hospital Center for Vaccine Development, both in Houston; and Danielle M. Zerr, MD, professor and chief of the division of pediatric infectious disease at the University of Washington, Seattle, and medical director of infection prevention at Seattle Children’s Hospital.
 

Q: How are smaller pediatric practices and solo practitioners going to handle the additional vaccinations?

Dr. Goza: It’s a scheduling challenge with this rollout and all the people who want it and want it right now. They’re going to want it this week.

I’ve actually had some children asking their moms: “When can I get it? When can I get it?” It’s been very interesting – they are chomping at the bit.

If I give the vaccine to a patient this week, in 3 weeks the second dose will be right around Thanksgiving. No one in my office is going to want to be here to give the shot on Thanksgiving, and no patient is going to want to come in on Thanksgiving weekend. So I’m trying to delay those parents – saying, let’s do it next week. That way we’re not messing up a holiday.

Children are going to need two doses, and they won’t be fully protected until 2 weeks after their second dose. So they won’t get full protection for Thanksgiving, but they will have full protection for Christmas.

I know there are a lot of pediatricians who have preordered the vaccine. I know in our office they sent us an email ... to let us know our vaccines are being shipped. So I think a lot of pediatricians are going to have the vaccine.
 

Q: How should pediatricians counsel parents who are fearful or hesitant?

Dr. Hotez: It’s important to emphasize the severity of the 2021 summer Delta epidemic in children. We need to get beyond this false narrative that COVID only produces a mild disease in children. It’s caused thousands of pediatric hospitalizations, not to mention long COVID.

Dr. Zerr: It is key to find out what concerns parents have and then focus on answering their specific questions. It is helpful to emphasize the safety and efficacy of the vaccine and to explain the rigorous processes that the vaccine went through to receive Food and Drug Administration approval.
 

Q: How should pediatricians counter any misinformation/disinformation out there about the COVID-19 vaccines?

Dr. Goza: The most important thing is not to discount what they are saying. Don’t say: “That’s crazy” or “That’s not true.” Don’t roll your eyes and say: “Really, you’re going to believe all that?”

Instead, have a conversation with them about why we think that is not true, or why we know that’s not true. We really have to have that relationship and ask: “Well, what are your concerns?” And then really counter (any misinformation) with facts, with science, and based on your experience.
 

Q: Do the data presented to the FDA and the CDC about the safety and effectiveness of the COVID-19 vaccine for 5- to 11-year-olds seem robust to you?

Dr. Zerr: Yes, and data collection will be ongoing.

Dr. Hotez: I’ve only seen what’s publicly available so far, and it seems to support moving forward with emergency use authorization. The only shortfall is the size, roughly 2,200 children, which would not be of sufficient size to detect a rare safety signal.
 

Q: Do previous controversies around pediatric vaccines (for example, the MMR vaccine and autism) give pediatricians some background and experience so they can address any pushback on the COVID-19 vaccines?

Dr. Goza: Pediatricians have been dealing with vaccine hesitancy for a while now, ever since the MMR and autism controversy started. Even before then, there were certain groups of people who didn’t want vaccines.

We’ve really worked hard at helping teach pediatricians how to deal with the misinformation, how to counter it, and how to help parents understand the vaccines are safe and effective – and that they save lives.

That (experience) will help us in some ways. Unfortunately, there is more misinformation out there – there is almost a concerted effort on misinformation. It’s big.

Pediatricians will do everything we can, but we need help countering it. We need the misinformation to quit getting spread on social media. We can talk one on one with patients and families, but if all they are hearing on social media is the misinformation, it’s really hard.
 

Q: Are pediatricians, especially solo practitioners or pediatricians at smaller practices, going to face challenges with multidose vials and not wasting vaccine product?

Dr. Goza: I’m at a small practice. We have 3.5 FTEs (full-time equivalents) of MDs and three FTEs of nurse practitioners. So we’re not that big – about six providers.

You know, it is a challenge. We’re not going to buy the super-duper freezer, and we’re not going to be able to store these vaccines for a long period of time.

So when we order, we need smaller amounts. For the 12- to 18-year-olds, [maximum storage] was 45 days. Now for the 5- to 11-year-olds, we’re going to be able to store the vaccine in the refrigerator for 10 weeks, which gives us more leeway there.

We try to do all of vaccinations on 1 day, so we know how many people are coming in, and we are not going to waste too many doses.

Our Department of Public Health in Georgia has said: “We want these vaccines in the arms of kids, and if you have to waste some doses, don’t worry about it.” But it’s a 10-dose vial. It’s going to be hard for me to open it up for one child. I just don’t like wasting anything like this.

Our main goal is to get this vaccine in to the arms of children whose parents want it.
 

Q: What are some additional sources of information for pediatricians?

Dr. Zerr: There are a lot of great resources on vaccine hesitancy from reputable sources, including these from the CDC and from the National Academies of Sciences, Engineering, and Medicine:

• Building Confidence With OVID-19 Vaccines
• How to Talk With Parents About COVID-19 Vaccination
• Strategies for Building Confidence in the COVID-19 Vaccines
• Communication Strategies for Building Confidence in COVID-19 Vaccines: Addressing Variants and Childhood Vaccinations

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

On Nov. 2, the Centers for Disease Control and Prevention endorsed vaccination with the Pfizer/BioNTech COVID-19 vaccine for children aged 5-11 years. What are some best practices for meeting the challenges of immunizing this younger age group?

This news organization spoke to several pediatric experts to get answers.

More than 6 million children and adolescents (up to age 18 years) in the United States have been infected with SARS-CoV-2. Children represent about 17% of all cases, and an estimated 0.1%-2% of infected children end up hospitalized, according to Oct. 28 data from the American Academy of Pediatrics.

Physicians and other health care practitioners are gearing up for what could be an influx of patients. “Pediatricians are standing by to talk with families about the vaccine and to administer the vaccine to children as soon as possible,” Lee Savio Beers, MD, FAAP, president of the AAP, said in a statement.

In this Q&A, this news organization asked for additional advice from Sara “Sally” Goza, MD, a pediatrician in Fayetteville, Georgia, and immediate past president of the AAP; Peter Hotez, MD, PhD, dean of the National School of Tropical Medicine at Baylor College of Medicine and codirector of the Texas Children’s Hospital Center for Vaccine Development, both in Houston; and Danielle M. Zerr, MD, professor and chief of the division of pediatric infectious disease at the University of Washington, Seattle, and medical director of infection prevention at Seattle Children’s Hospital.
 

Q: How are smaller pediatric practices and solo practitioners going to handle the additional vaccinations?

Dr. Goza: It’s a scheduling challenge with this rollout and all the people who want it and want it right now. They’re going to want it this week.

I’ve actually had some children asking their moms: “When can I get it? When can I get it?” It’s been very interesting – they are chomping at the bit.

If I give the vaccine to a patient this week, in 3 weeks the second dose will be right around Thanksgiving. No one in my office is going to want to be here to give the shot on Thanksgiving, and no patient is going to want to come in on Thanksgiving weekend. So I’m trying to delay those parents – saying, let’s do it next week. That way we’re not messing up a holiday.

Children are going to need two doses, and they won’t be fully protected until 2 weeks after their second dose. So they won’t get full protection for Thanksgiving, but they will have full protection for Christmas.

I know there are a lot of pediatricians who have preordered the vaccine. I know in our office they sent us an email ... to let us know our vaccines are being shipped. So I think a lot of pediatricians are going to have the vaccine.
 

Q: How should pediatricians counsel parents who are fearful or hesitant?

Dr. Hotez: It’s important to emphasize the severity of the 2021 summer Delta epidemic in children. We need to get beyond this false narrative that COVID only produces a mild disease in children. It’s caused thousands of pediatric hospitalizations, not to mention long COVID.

Dr. Zerr: It is key to find out what concerns parents have and then focus on answering their specific questions. It is helpful to emphasize the safety and efficacy of the vaccine and to explain the rigorous processes that the vaccine went through to receive Food and Drug Administration approval.
 

Q: How should pediatricians counter any misinformation/disinformation out there about the COVID-19 vaccines?

Dr. Goza: The most important thing is not to discount what they are saying. Don’t say: “That’s crazy” or “That’s not true.” Don’t roll your eyes and say: “Really, you’re going to believe all that?”

Instead, have a conversation with them about why we think that is not true, or why we know that’s not true. We really have to have that relationship and ask: “Well, what are your concerns?” And then really counter (any misinformation) with facts, with science, and based on your experience.
 

Q: Do the data presented to the FDA and the CDC about the safety and effectiveness of the COVID-19 vaccine for 5- to 11-year-olds seem robust to you?

Dr. Zerr: Yes, and data collection will be ongoing.

Dr. Hotez: I’ve only seen what’s publicly available so far, and it seems to support moving forward with emergency use authorization. The only shortfall is the size, roughly 2,200 children, which would not be of sufficient size to detect a rare safety signal.
 

Q: Do previous controversies around pediatric vaccines (for example, the MMR vaccine and autism) give pediatricians some background and experience so they can address any pushback on the COVID-19 vaccines?

Dr. Goza: Pediatricians have been dealing with vaccine hesitancy for a while now, ever since the MMR and autism controversy started. Even before then, there were certain groups of people who didn’t want vaccines.

We’ve really worked hard at helping teach pediatricians how to deal with the misinformation, how to counter it, and how to help parents understand the vaccines are safe and effective – and that they save lives.

That (experience) will help us in some ways. Unfortunately, there is more misinformation out there – there is almost a concerted effort on misinformation. It’s big.

Pediatricians will do everything we can, but we need help countering it. We need the misinformation to quit getting spread on social media. We can talk one on one with patients and families, but if all they are hearing on social media is the misinformation, it’s really hard.
 

Q: Are pediatricians, especially solo practitioners or pediatricians at smaller practices, going to face challenges with multidose vials and not wasting vaccine product?

Dr. Goza: I’m at a small practice. We have 3.5 FTEs (full-time equivalents) of MDs and three FTEs of nurse practitioners. So we’re not that big – about six providers.

You know, it is a challenge. We’re not going to buy the super-duper freezer, and we’re not going to be able to store these vaccines for a long period of time.

So when we order, we need smaller amounts. For the 12- to 18-year-olds, [maximum storage] was 45 days. Now for the 5- to 11-year-olds, we’re going to be able to store the vaccine in the refrigerator for 10 weeks, which gives us more leeway there.

We try to do all of vaccinations on 1 day, so we know how many people are coming in, and we are not going to waste too many doses.

Our Department of Public Health in Georgia has said: “We want these vaccines in the arms of kids, and if you have to waste some doses, don’t worry about it.” But it’s a 10-dose vial. It’s going to be hard for me to open it up for one child. I just don’t like wasting anything like this.

Our main goal is to get this vaccine in to the arms of children whose parents want it.
 

Q: What are some additional sources of information for pediatricians?

Dr. Zerr: There are a lot of great resources on vaccine hesitancy from reputable sources, including these from the CDC and from the National Academies of Sciences, Engineering, and Medicine:

• Building Confidence With OVID-19 Vaccines
• How to Talk With Parents About COVID-19 Vaccination
• Strategies for Building Confidence in the COVID-19 Vaccines
• Communication Strategies for Building Confidence in COVID-19 Vaccines: Addressing Variants and Childhood Vaccinations

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

On Nov. 2, the Centers for Disease Control and Prevention endorsed vaccination with the Pfizer/BioNTech COVID-19 vaccine for children aged 5-11 years. What are some best practices for meeting the challenges of immunizing this younger age group?

This news organization spoke to several pediatric experts to get answers.

More than 6 million children and adolescents (up to age 18 years) in the United States have been infected with SARS-CoV-2. Children represent about 17% of all cases, and an estimated 0.1%-2% of infected children end up hospitalized, according to Oct. 28 data from the American Academy of Pediatrics.

Physicians and other health care practitioners are gearing up for what could be an influx of patients. “Pediatricians are standing by to talk with families about the vaccine and to administer the vaccine to children as soon as possible,” Lee Savio Beers, MD, FAAP, president of the AAP, said in a statement.

In this Q&A, this news organization asked for additional advice from Sara “Sally” Goza, MD, a pediatrician in Fayetteville, Georgia, and immediate past president of the AAP; Peter Hotez, MD, PhD, dean of the National School of Tropical Medicine at Baylor College of Medicine and codirector of the Texas Children’s Hospital Center for Vaccine Development, both in Houston; and Danielle M. Zerr, MD, professor and chief of the division of pediatric infectious disease at the University of Washington, Seattle, and medical director of infection prevention at Seattle Children’s Hospital.
 

Q: How are smaller pediatric practices and solo practitioners going to handle the additional vaccinations?

Dr. Goza: It’s a scheduling challenge with this rollout and all the people who want it and want it right now. They’re going to want it this week.

I’ve actually had some children asking their moms: “When can I get it? When can I get it?” It’s been very interesting – they are chomping at the bit.

If I give the vaccine to a patient this week, in 3 weeks the second dose will be right around Thanksgiving. No one in my office is going to want to be here to give the shot on Thanksgiving, and no patient is going to want to come in on Thanksgiving weekend. So I’m trying to delay those parents – saying, let’s do it next week. That way we’re not messing up a holiday.

Children are going to need two doses, and they won’t be fully protected until 2 weeks after their second dose. So they won’t get full protection for Thanksgiving, but they will have full protection for Christmas.

I know there are a lot of pediatricians who have preordered the vaccine. I know in our office they sent us an email ... to let us know our vaccines are being shipped. So I think a lot of pediatricians are going to have the vaccine.
 

Q: How should pediatricians counsel parents who are fearful or hesitant?

Dr. Hotez: It’s important to emphasize the severity of the 2021 summer Delta epidemic in children. We need to get beyond this false narrative that COVID only produces a mild disease in children. It’s caused thousands of pediatric hospitalizations, not to mention long COVID.

Dr. Zerr: It is key to find out what concerns parents have and then focus on answering their specific questions. It is helpful to emphasize the safety and efficacy of the vaccine and to explain the rigorous processes that the vaccine went through to receive Food and Drug Administration approval.
 

Q: How should pediatricians counter any misinformation/disinformation out there about the COVID-19 vaccines?

Dr. Goza: The most important thing is not to discount what they are saying. Don’t say: “That’s crazy” or “That’s not true.” Don’t roll your eyes and say: “Really, you’re going to believe all that?”

Instead, have a conversation with them about why we think that is not true, or why we know that’s not true. We really have to have that relationship and ask: “Well, what are your concerns?” And then really counter (any misinformation) with facts, with science, and based on your experience.
 

Q: Do the data presented to the FDA and the CDC about the safety and effectiveness of the COVID-19 vaccine for 5- to 11-year-olds seem robust to you?

Dr. Zerr: Yes, and data collection will be ongoing.

Dr. Hotez: I’ve only seen what’s publicly available so far, and it seems to support moving forward with emergency use authorization. The only shortfall is the size, roughly 2,200 children, which would not be of sufficient size to detect a rare safety signal.
 

Q: Do previous controversies around pediatric vaccines (for example, the MMR vaccine and autism) give pediatricians some background and experience so they can address any pushback on the COVID-19 vaccines?

Dr. Goza: Pediatricians have been dealing with vaccine hesitancy for a while now, ever since the MMR and autism controversy started. Even before then, there were certain groups of people who didn’t want vaccines.

We’ve really worked hard at helping teach pediatricians how to deal with the misinformation, how to counter it, and how to help parents understand the vaccines are safe and effective – and that they save lives.

That (experience) will help us in some ways. Unfortunately, there is more misinformation out there – there is almost a concerted effort on misinformation. It’s big.

Pediatricians will do everything we can, but we need help countering it. We need the misinformation to quit getting spread on social media. We can talk one on one with patients and families, but if all they are hearing on social media is the misinformation, it’s really hard.
 

Q: Are pediatricians, especially solo practitioners or pediatricians at smaller practices, going to face challenges with multidose vials and not wasting vaccine product?

Dr. Goza: I’m at a small practice. We have 3.5 FTEs (full-time equivalents) of MDs and three FTEs of nurse practitioners. So we’re not that big – about six providers.

You know, it is a challenge. We’re not going to buy the super-duper freezer, and we’re not going to be able to store these vaccines for a long period of time.

So when we order, we need smaller amounts. For the 12- to 18-year-olds, [maximum storage] was 45 days. Now for the 5- to 11-year-olds, we’re going to be able to store the vaccine in the refrigerator for 10 weeks, which gives us more leeway there.

We try to do all of vaccinations on 1 day, so we know how many people are coming in, and we are not going to waste too many doses.

Our Department of Public Health in Georgia has said: “We want these vaccines in the arms of kids, and if you have to waste some doses, don’t worry about it.” But it’s a 10-dose vial. It’s going to be hard for me to open it up for one child. I just don’t like wasting anything like this.

Our main goal is to get this vaccine in to the arms of children whose parents want it.
 

Q: What are some additional sources of information for pediatricians?

Dr. Zerr: There are a lot of great resources on vaccine hesitancy from reputable sources, including these from the CDC and from the National Academies of Sciences, Engineering, and Medicine:

• Building Confidence With OVID-19 Vaccines
• How to Talk With Parents About COVID-19 Vaccination
• Strategies for Building Confidence in the COVID-19 Vaccines
• Communication Strategies for Building Confidence in COVID-19 Vaccines: Addressing Variants and Childhood Vaccinations

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

Adding anti-inflammatory corticosteroids to antibiotics for certain pediatric throat and ocular infections may have some benefit, according to results from two recent database studies, but their benefit remains unclear.

Using steroids in this setting is a practice many pediatricians consider, although no clear guidance exists.

Drawing on data from a registry of 51 free-standing children’s hospitals in the Pediatric Health Information System (PHIS), and published online in Pediatrics, the analyses looked, respectively, at retro- and parapharyngeal abscesses (RPAs/PPAs) and acute orbital cellulitis.
 

Throat abscesses

In the first study, pediatrician Pratichi K. Goenka, MD, of Cohen Children’s Medical Center–Northwell Health and an assistant professor at Hofstra University, both in New Hyde Park, N.Y., and colleagues reported on the effect of systemic corticosteroids on several outcomes in RPAs/PPAs in 2,259 well-matched patients. The patients, aged 2 months to 8 years, were treated at 46 hospitals during the period from January 2016 to December 2019.

The data revealed that the 582 (25.8%) who received steroids had a significantly lower rate of surgical drainage, the study’s primary endpoint (odds ratio, 0.28; 95% confidence interval, 0.22-0.36). There was no difference, however, in length of hospital stay (rate ratio, 0.97; 95% CI, 0.92-1.02).

Those in the steroid group also had lower overall hospital costs and were less likely to be given opioid medications for pain. They were, however, more likely to undergo repeat CT imaging and also had a higher 7-day ED revisit rate but no increase in readmission 30 days after discharge: 4% versus 3% in the nonsteroid group (P = .29).

“As hospitalists, we share the care of young children with RPAs and PPAs with our otolaryngology colleagues. The primary therapy is antibiotics but there was no clear guidance on the next step, and the current literature had no answers as to how systemic corticosteroids might impact the care of these children,” Dr. Goenka said in an interview. “So we wanted to leverage the PHIS data to better understand the association with the need for surgery and length of stay. Surgery is painful and often involves IV administration of opioid painkillers. It’s something we may be able to avoid if we can optimize medical treatment.”

Pending results from randomized trials, what immediate impact could these registry findings have? “We hope that physicians will think about the best initial medical treatment plan for these children,” Dr. Goenka said. ”Given these data, I would be more likely to incorporate steroids early on in medical treatment.”

She emphasized, however, that before routine adoption prospective studies are needed to clearly identify which patients will have a strong benefit and which will not benefit. “That is the nuanced discussion that will happen with more prospective work.”

Dr. Goenka and associates explained that the rising incidence of RPAs and PPAs over the past 20 years has been attributed to more cases of tonsillitis because of a shift away from tonsillectomies, as well as the changing epidemiology of methicillin-resistant Staphylococcus aureus.

In an accompanying editorial, Ellen R. Wald, MD, and Jens C. Eickhoff, PhD, of the University of Wisconsin–Madison, stated that the use of corticosteroids in bacterial meningitis is often cited as an example of the benefits of steroids in infection. “The specific rationale for use of corticosteroids is [their] anti-inflammatory effects, which may result in decreases of swelling and/ or edema to facilitate drainage, perfusion, reduction in pain, and healing.”

They cautioned, however, that the pharmacologic effects of steroids are myriad and complicated, and include potential masking of the clinical course of disease, thereby delaying appropriate therapy for unrecognized deterioration, as well potential immunosuppression.
 

Acute orbital cellulitis

In the second retrospective analysis, a group led by pediatrician Maria Anna Leszczynska, MD, of Johns Hopkins All Children’s Hospital in Baltimore, analyzed a retrospective PHIS cohort of 5,645 children younger than 18 years with a primary diagnosis of orbital cellulitis treated at 51 hospitals from January 2007 to December 2018.

Of these, 1,347 (24%) received steroids, but, contrary to earlier reports, the data showed no reduction in length of stay associated with these drugs after adjustment for age, meningitis, abscess, or vision issues (e_beta, 1.01; 95% CI, 0.97-1.06). Corticosteroid exposure was, however, associated with operative episodes after 2 days’ hospitalization (OR, 2.05; 95% CI, 1.29-3.27) and 30-day readmission (OR, 2.40; 95% CI, 1.52-3.78).

“Among children hospitalized for orbital cellulitis, we did not observe the reduction in LOS [length of stay] for patients prescribed systemic corticosteroids as described previously in the literature,” the authors wrote.

In terms of surgical procedures, 52.0% of corticosteroid recipients versus 14.0% of nonrecipients underwent surgery (P < .001), and more were hospitalized in the pediatric ICU (4.4% vs 2.6%; P < .001).

According to the editorialists: “Both observations suggest that children who received steroids may have been a sicker group of patients.”

Dr. Wald and Dr. Eickhoff pointed out that the effect of steroids is ultimately unclear because of the retrospective study’s inherent potential for bias because of unobserved confounders. Were steroids prescribed more often when children were perceived to be sicker with more severe disease, or did these medications cause worse outcomes?

The authors agreed that the study could not determine causality. “Although we used all available markers of disease severity, there does not exist a validated disease severity clinical score for pediatric orbital cellulitis,” they wrote.

According to Ricardo A. Quinonez, MD, an associate professor of pediatrics and division and service chief of pediatric hospital medicine at Baylor College of Medicine and Texas Children’s Hospital, both in Houston, “orbital cellulitis is a not very common thing in children so we don’t treat many patients with this. But having said that, there is usually some debate among providers about whether to use steroids.”

Some centers use them routinely for central nervous system and eye infections or extensions of sinusitis, he said, but there is variability in the prescribing of corticosteroids. “There’s ongoing discussion as to whether they‘re as helpful in orbital cellulitis as they are in similar conditions,” Dr. Quinonez said in an interview. “At our institution we don’t typically prescribe them – not never but not routinely. Children who are sicker tend to get steroids, as they do in other conditions.”

In the context of PPA as in the first study, he added, “I think the evidence favoring the use of steroids in infections that affect the airway is stronger, and their use is definitely more prevalent in those instances.”

While both PHIS analyses suggested some benefit from steroids, he continued, some children may not benefit and there may be harms. “The evidence is still mostly retrospective and observational with no multicenter randomized controlled data. Without those data the evidence is difficult to interpret and subject to all the biases that observational and retrospective data is subject to and the current evidence should not lead physicians to change their practice until controlled, randomized evidence is available.”

The editorialists concurred with the study authors and Dr. Quinonez that large, controlled, prospective clinical trials are needed to ascertain the effect of steroids and to standardize the approach to diagnosis and management. “Use of administrative databases are not optimal to answer questions related to outcome,” they wrote.

The study by Dr. Goenka and associates received no external funding; the study by Dr. Leszczynska and associates also received no external funding. None of the authors declared potential competing interests. Dr. Quinonez had no competing interests to declare. Dr. Wald and Dr. Eickhoff disclosed no competing interests with regard to their editorial.

Adding anti-inflammatory corticosteroids to antibiotics for certain pediatric throat and ocular infections may have some benefit, according to results from two recent database studies, but their benefit remains unclear.

Using steroids in this setting is a practice many pediatricians consider, although no clear guidance exists.

Drawing on data from a registry of 51 free-standing children’s hospitals in the Pediatric Health Information System (PHIS), and published online in Pediatrics, the analyses looked, respectively, at retro- and parapharyngeal abscesses (RPAs/PPAs) and acute orbital cellulitis.
 

Throat abscesses

In the first study, pediatrician Pratichi K. Goenka, MD, of Cohen Children’s Medical Center–Northwell Health and an assistant professor at Hofstra University, both in New Hyde Park, N.Y., and colleagues reported on the effect of systemic corticosteroids on several outcomes in RPAs/PPAs in 2,259 well-matched patients. The patients, aged 2 months to 8 years, were treated at 46 hospitals during the period from January 2016 to December 2019.

The data revealed that the 582 (25.8%) who received steroids had a significantly lower rate of surgical drainage, the study’s primary endpoint (odds ratio, 0.28; 95% confidence interval, 0.22-0.36). There was no difference, however, in length of hospital stay (rate ratio, 0.97; 95% CI, 0.92-1.02).

Those in the steroid group also had lower overall hospital costs and were less likely to be given opioid medications for pain. They were, however, more likely to undergo repeat CT imaging and also had a higher 7-day ED revisit rate but no increase in readmission 30 days after discharge: 4% versus 3% in the nonsteroid group (P = .29).

“As hospitalists, we share the care of young children with RPAs and PPAs with our otolaryngology colleagues. The primary therapy is antibiotics but there was no clear guidance on the next step, and the current literature had no answers as to how systemic corticosteroids might impact the care of these children,” Dr. Goenka said in an interview. “So we wanted to leverage the PHIS data to better understand the association with the need for surgery and length of stay. Surgery is painful and often involves IV administration of opioid painkillers. It’s something we may be able to avoid if we can optimize medical treatment.”

Pending results from randomized trials, what immediate impact could these registry findings have? “We hope that physicians will think about the best initial medical treatment plan for these children,” Dr. Goenka said. ”Given these data, I would be more likely to incorporate steroids early on in medical treatment.”

She emphasized, however, that before routine adoption prospective studies are needed to clearly identify which patients will have a strong benefit and which will not benefit. “That is the nuanced discussion that will happen with more prospective work.”

Dr. Goenka and associates explained that the rising incidence of RPAs and PPAs over the past 20 years has been attributed to more cases of tonsillitis because of a shift away from tonsillectomies, as well as the changing epidemiology of methicillin-resistant Staphylococcus aureus.

In an accompanying editorial, Ellen R. Wald, MD, and Jens C. Eickhoff, PhD, of the University of Wisconsin–Madison, stated that the use of corticosteroids in bacterial meningitis is often cited as an example of the benefits of steroids in infection. “The specific rationale for use of corticosteroids is [their] anti-inflammatory effects, which may result in decreases of swelling and/ or edema to facilitate drainage, perfusion, reduction in pain, and healing.”

They cautioned, however, that the pharmacologic effects of steroids are myriad and complicated, and include potential masking of the clinical course of disease, thereby delaying appropriate therapy for unrecognized deterioration, as well potential immunosuppression.
 

Acute orbital cellulitis

In the second retrospective analysis, a group led by pediatrician Maria Anna Leszczynska, MD, of Johns Hopkins All Children’s Hospital in Baltimore, analyzed a retrospective PHIS cohort of 5,645 children younger than 18 years with a primary diagnosis of orbital cellulitis treated at 51 hospitals from January 2007 to December 2018.

Of these, 1,347 (24%) received steroids, but, contrary to earlier reports, the data showed no reduction in length of stay associated with these drugs after adjustment for age, meningitis, abscess, or vision issues (e_beta, 1.01; 95% CI, 0.97-1.06). Corticosteroid exposure was, however, associated with operative episodes after 2 days’ hospitalization (OR, 2.05; 95% CI, 1.29-3.27) and 30-day readmission (OR, 2.40; 95% CI, 1.52-3.78).

“Among children hospitalized for orbital cellulitis, we did not observe the reduction in LOS [length of stay] for patients prescribed systemic corticosteroids as described previously in the literature,” the authors wrote.

In terms of surgical procedures, 52.0% of corticosteroid recipients versus 14.0% of nonrecipients underwent surgery (P < .001), and more were hospitalized in the pediatric ICU (4.4% vs 2.6%; P < .001).

According to the editorialists: “Both observations suggest that children who received steroids may have been a sicker group of patients.”

Dr. Wald and Dr. Eickhoff pointed out that the effect of steroids is ultimately unclear because of the retrospective study’s inherent potential for bias because of unobserved confounders. Were steroids prescribed more often when children were perceived to be sicker with more severe disease, or did these medications cause worse outcomes?

The authors agreed that the study could not determine causality. “Although we used all available markers of disease severity, there does not exist a validated disease severity clinical score for pediatric orbital cellulitis,” they wrote.

According to Ricardo A. Quinonez, MD, an associate professor of pediatrics and division and service chief of pediatric hospital medicine at Baylor College of Medicine and Texas Children’s Hospital, both in Houston, “orbital cellulitis is a not very common thing in children so we don’t treat many patients with this. But having said that, there is usually some debate among providers about whether to use steroids.”

Some centers use them routinely for central nervous system and eye infections or extensions of sinusitis, he said, but there is variability in the prescribing of corticosteroids. “There’s ongoing discussion as to whether they‘re as helpful in orbital cellulitis as they are in similar conditions,” Dr. Quinonez said in an interview. “At our institution we don’t typically prescribe them – not never but not routinely. Children who are sicker tend to get steroids, as they do in other conditions.”

In the context of PPA as in the first study, he added, “I think the evidence favoring the use of steroids in infections that affect the airway is stronger, and their use is definitely more prevalent in those instances.”

While both PHIS analyses suggested some benefit from steroids, he continued, some children may not benefit and there may be harms. “The evidence is still mostly retrospective and observational with no multicenter randomized controlled data. Without those data the evidence is difficult to interpret and subject to all the biases that observational and retrospective data is subject to and the current evidence should not lead physicians to change their practice until controlled, randomized evidence is available.”

The editorialists concurred with the study authors and Dr. Quinonez that large, controlled, prospective clinical trials are needed to ascertain the effect of steroids and to standardize the approach to diagnosis and management. “Use of administrative databases are not optimal to answer questions related to outcome,” they wrote.

The study by Dr. Goenka and associates received no external funding; the study by Dr. Leszczynska and associates also received no external funding. None of the authors declared potential competing interests. Dr. Quinonez had no competing interests to declare. Dr. Wald and Dr. Eickhoff disclosed no competing interests with regard to their editorial.

Adding anti-inflammatory corticosteroids to antibiotics for certain pediatric throat and ocular infections may have some benefit, according to results from two recent database studies, but their benefit remains unclear.

Using steroids in this setting is a practice many pediatricians consider, although no clear guidance exists.

Drawing on data from a registry of 51 free-standing children’s hospitals in the Pediatric Health Information System (PHIS), and published online in Pediatrics, the analyses looked, respectively, at retro- and parapharyngeal abscesses (RPAs/PPAs) and acute orbital cellulitis.
 

Throat abscesses

In the first study, pediatrician Pratichi K. Goenka, MD, of Cohen Children’s Medical Center–Northwell Health and an assistant professor at Hofstra University, both in New Hyde Park, N.Y., and colleagues reported on the effect of systemic corticosteroids on several outcomes in RPAs/PPAs in 2,259 well-matched patients. The patients, aged 2 months to 8 years, were treated at 46 hospitals during the period from January 2016 to December 2019.

The data revealed that the 582 (25.8%) who received steroids had a significantly lower rate of surgical drainage, the study’s primary endpoint (odds ratio, 0.28; 95% confidence interval, 0.22-0.36). There was no difference, however, in length of hospital stay (rate ratio, 0.97; 95% CI, 0.92-1.02).

Those in the steroid group also had lower overall hospital costs and were less likely to be given opioid medications for pain. They were, however, more likely to undergo repeat CT imaging and also had a higher 7-day ED revisit rate but no increase in readmission 30 days after discharge: 4% versus 3% in the nonsteroid group (P = .29).

“As hospitalists, we share the care of young children with RPAs and PPAs with our otolaryngology colleagues. The primary therapy is antibiotics but there was no clear guidance on the next step, and the current literature had no answers as to how systemic corticosteroids might impact the care of these children,” Dr. Goenka said in an interview. “So we wanted to leverage the PHIS data to better understand the association with the need for surgery and length of stay. Surgery is painful and often involves IV administration of opioid painkillers. It’s something we may be able to avoid if we can optimize medical treatment.”

Pending results from randomized trials, what immediate impact could these registry findings have? “We hope that physicians will think about the best initial medical treatment plan for these children,” Dr. Goenka said. ”Given these data, I would be more likely to incorporate steroids early on in medical treatment.”

She emphasized, however, that before routine adoption prospective studies are needed to clearly identify which patients will have a strong benefit and which will not benefit. “That is the nuanced discussion that will happen with more prospective work.”

Dr. Goenka and associates explained that the rising incidence of RPAs and PPAs over the past 20 years has been attributed to more cases of tonsillitis because of a shift away from tonsillectomies, as well as the changing epidemiology of methicillin-resistant Staphylococcus aureus.

In an accompanying editorial, Ellen R. Wald, MD, and Jens C. Eickhoff, PhD, of the University of Wisconsin–Madison, stated that the use of corticosteroids in bacterial meningitis is often cited as an example of the benefits of steroids in infection. “The specific rationale for use of corticosteroids is [their] anti-inflammatory effects, which may result in decreases of swelling and/ or edema to facilitate drainage, perfusion, reduction in pain, and healing.”

They cautioned, however, that the pharmacologic effects of steroids are myriad and complicated, and include potential masking of the clinical course of disease, thereby delaying appropriate therapy for unrecognized deterioration, as well potential immunosuppression.
 

Acute orbital cellulitis

In the second retrospective analysis, a group led by pediatrician Maria Anna Leszczynska, MD, of Johns Hopkins All Children’s Hospital in Baltimore, analyzed a retrospective PHIS cohort of 5,645 children younger than 18 years with a primary diagnosis of orbital cellulitis treated at 51 hospitals from January 2007 to December 2018.

Of these, 1,347 (24%) received steroids, but, contrary to earlier reports, the data showed no reduction in length of stay associated with these drugs after adjustment for age, meningitis, abscess, or vision issues (e_beta, 1.01; 95% CI, 0.97-1.06). Corticosteroid exposure was, however, associated with operative episodes after 2 days’ hospitalization (OR, 2.05; 95% CI, 1.29-3.27) and 30-day readmission (OR, 2.40; 95% CI, 1.52-3.78).

“Among children hospitalized for orbital cellulitis, we did not observe the reduction in LOS [length of stay] for patients prescribed systemic corticosteroids as described previously in the literature,” the authors wrote.

In terms of surgical procedures, 52.0% of corticosteroid recipients versus 14.0% of nonrecipients underwent surgery (P < .001), and more were hospitalized in the pediatric ICU (4.4% vs 2.6%; P < .001).

According to the editorialists: “Both observations suggest that children who received steroids may have been a sicker group of patients.”

Dr. Wald and Dr. Eickhoff pointed out that the effect of steroids is ultimately unclear because of the retrospective study’s inherent potential for bias because of unobserved confounders. Were steroids prescribed more often when children were perceived to be sicker with more severe disease, or did these medications cause worse outcomes?

The authors agreed that the study could not determine causality. “Although we used all available markers of disease severity, there does not exist a validated disease severity clinical score for pediatric orbital cellulitis,” they wrote.

According to Ricardo A. Quinonez, MD, an associate professor of pediatrics and division and service chief of pediatric hospital medicine at Baylor College of Medicine and Texas Children’s Hospital, both in Houston, “orbital cellulitis is a not very common thing in children so we don’t treat many patients with this. But having said that, there is usually some debate among providers about whether to use steroids.”

Some centers use them routinely for central nervous system and eye infections or extensions of sinusitis, he said, but there is variability in the prescribing of corticosteroids. “There’s ongoing discussion as to whether they‘re as helpful in orbital cellulitis as they are in similar conditions,” Dr. Quinonez said in an interview. “At our institution we don’t typically prescribe them – not never but not routinely. Children who are sicker tend to get steroids, as they do in other conditions.”

In the context of PPA as in the first study, he added, “I think the evidence favoring the use of steroids in infections that affect the airway is stronger, and their use is definitely more prevalent in those instances.”

While both PHIS analyses suggested some benefit from steroids, he continued, some children may not benefit and there may be harms. “The evidence is still mostly retrospective and observational with no multicenter randomized controlled data. Without those data the evidence is difficult to interpret and subject to all the biases that observational and retrospective data is subject to and the current evidence should not lead physicians to change their practice until controlled, randomized evidence is available.”

The editorialists concurred with the study authors and Dr. Quinonez that large, controlled, prospective clinical trials are needed to ascertain the effect of steroids and to standardize the approach to diagnosis and management. “Use of administrative databases are not optimal to answer questions related to outcome,” they wrote.

The study by Dr. Goenka and associates received no external funding; the study by Dr. Leszczynska and associates also received no external funding. None of the authors declared potential competing interests. Dr. Quinonez had no competing interests to declare. Dr. Wald and Dr. Eickhoff disclosed no competing interests with regard to their editorial.

The Diagnosis: Calcinosis Cutis Due to Systemic Sclerosis Sine Scleroderma

Laboratory evaluation was notable for high titers of antinuclear antibodies (>1/320; reference range, 0–1/80) and positive anticentromere antibodies. There were no other relevant laboratory findings; phosphocalcic metabolism was within normal limits, and urinary sediment was normal. Biopsy of the edge of the ulcer revealed basophilic material compatible with calcium deposits. In a 3D volume rendering reconstruction from the lower limb scanner, grouped calcifications were observed in subcutaneous cellular tissue near the ulcer (Figure). The patient had a restrictive ventilatory pattern observed in a pulmonary function test. An esophageal motility study was normal.

The patient was diagnosed with systemic sclerosis sine scleroderma (ssSSc) type II because she met the 4 criteria established by Poormoghim et al¹ : (1) Raynaud phenomenon or a peripheral vascular equivalent (ie, digital pitting scars, digital-tip ulcers, digital-tip gangrene, abnormal nail fold capillaries); (2) positive antinuclear antibodies; (3) distal esophageal hypomotility, small bowel hypomotility, pulmonary interstitial fibrosis, primary pulmonary arterial hypertension (without fibrosis), cardiac involvement typical of scleroderma, or renal failure; and (4) no other defined connective tissue or other disease as a cause of the prior conditions.

Systemic sclerosis is a chronic disease characterized by progressive fibrosis of the skin and other internal organs—especially the lungs, kidneys, digestive tract, and heart—as well as generalized vascular dysfunction. Cutaneous induration is its hallmark; however, up to 10% of affected patients have ssSSc.² This entity is characterized by the total or partial absence of cutaneous manifestations of systemic sclerosis with the occurrence of internal organ involvement and serologic abnormalities. There are 3 types of ssSSc depending on the grade of skin involvement. Type I is characterized by the lack of any typical cutaneous stigmata of the disease. Type II is without sclerodactyly but can coexist with other cutaneous findings such as calcifications, telangiectases, or pitting scars. Type III is characterized clinically by internal organ involvement, typical of systemic sclerosis, that has appeared before skin changes.²

An abnormal deposit of calcium in the cutaneous and subcutaneous tissue is called calcinosis cutis. There are 5 subtypes of calcinosis cutis: dystrophic, metastatic, idiopathic, iatrogenic, and calciphylaxis. Dystrophic skin calcifications may appear in patients with connective tissue diseases such as dermatomyositis or systemic sclerosis.³ Up to 25% of patients with systemic sclerosis can develop calcinosis cutis due to local tissue damage, with normal phosphocalcic metabolism.³

Calcinosis cutis is more common in patients with systemic sclerosis and positive anticentromere antibodies.⁴ The calcifications usually are located in areas that are subject to repeated trauma, such as the fingers or arms, though other locations have been described such as cervical, paraspinal, or on the hips.^5,6 Our patient developed calcifications on both legs, which represent atypical areas for this process.

Dermatomyositis also can present with calcinosis cutis. There are 4 patterns of calcification: superficial nodulelike calcified masses; deep calcified masses; deep sheetlike calcifications within the fascial planes; and a rare, diffuse, superficial lacy and reticular calcification that involves almost the entire body surface area.⁷ Patients with calcinosis cutis secondary to dermatomyositis usually develop proximal muscle weakness, high titers of creatine kinase, heliotrope rash, or interstitial lung disease with specific antibodies.

Calciphylaxis is a serious disorder involving the calcification of dermal and subcutaneous arterioles and capillaries. It presents with painful cutaneous areas of necrosis.

Venous ulcers also can present with secondary dystrophic calcification due to local tissue damage. These patients usually have cutaneous signs of chronic venous insufficiency. Our patient denied prior trauma to the area; therefore, a traumatic ulcer with secondary calcification was ruled out.

The most concerning complication of calcinosis cutis is the development of ulcers, which occurred in 154 of 316 calcinoses (48.7%) in patients with systemic sclerosis and secondary calcifications.⁸ These ulcers can cause disabling pain or become superinfected, as in our patient.

There currently is no drug capable of removing dystrophic calcifications, but diltiazem, minocycline, or colchicine can reduce their size and prevent their progression. In the event of neurologic compromise or intractable pain, the treatment of choice is surgical removal of the calcification.⁹ Curettage, intralesional sodium thiosulfate, and intravenous sodium thiosulfate also have been suggested as therapeutic options.¹⁰ Antibiotic treatment was carried out in our patient, which controlled the superinfection of the ulcers. Diltiazem also was started, with stabilization of the calcium deposits without a reduction in their size.

There are few studies evaluating the presence of nondigital ulcers in patients with systemic sclerosis. Shanmugam et al¹¹ calculated a 4% (N=249) prevalence of ulcers in the lower limbs of systemic sclerosis patients. In a study by Bohelay et al¹² of 45 patients, the estimated prevalence of lower limb ulcers was 12.8%, and the etiologies consisted of 22 cases of venous insufficiency (49%), 21 cases of ischemic causes (47%), and 2 cases of other causes (4%).

We present the case of a woman with ssSSc who developed dystrophic calcinosis cutis in atypical areas with secondary ulceration and superinfection. The skin usually plays a key role in the diagnosis of systemic sclerosis, as sclerodactyly and the characteristic generalized skin induration stand out in affected individuals. Although our patient was diagnosed with ssSSc, her skin manifestations also were crucial for the diagnosis, as she had ulcers on the lower limbs.

The Diagnosis: Calcinosis Cutis Due to Systemic Sclerosis Sine Scleroderma

Laboratory evaluation was notable for high titers of antinuclear antibodies (>1/320; reference range, 0–1/80) and positive anticentromere antibodies. There were no other relevant laboratory findings; phosphocalcic metabolism was within normal limits, and urinary sediment was normal. Biopsy of the edge of the ulcer revealed basophilic material compatible with calcium deposits. In a 3D volume rendering reconstruction from the lower limb scanner, grouped calcifications were observed in subcutaneous cellular tissue near the ulcer (Figure). The patient had a restrictive ventilatory pattern observed in a pulmonary function test. An esophageal motility study was normal.

The patient was diagnosed with systemic sclerosis sine scleroderma (ssSSc) type II because she met the 4 criteria established by Poormoghim et al¹ : (1) Raynaud phenomenon or a peripheral vascular equivalent (ie, digital pitting scars, digital-tip ulcers, digital-tip gangrene, abnormal nail fold capillaries); (2) positive antinuclear antibodies; (3) distal esophageal hypomotility, small bowel hypomotility, pulmonary interstitial fibrosis, primary pulmonary arterial hypertension (without fibrosis), cardiac involvement typical of scleroderma, or renal failure; and (4) no other defined connective tissue or other disease as a cause of the prior conditions.

Systemic sclerosis is a chronic disease characterized by progressive fibrosis of the skin and other internal organs—especially the lungs, kidneys, digestive tract, and heart—as well as generalized vascular dysfunction. Cutaneous induration is its hallmark; however, up to 10% of affected patients have ssSSc.² This entity is characterized by the total or partial absence of cutaneous manifestations of systemic sclerosis with the occurrence of internal organ involvement and serologic abnormalities. There are 3 types of ssSSc depending on the grade of skin involvement. Type I is characterized by the lack of any typical cutaneous stigmata of the disease. Type II is without sclerodactyly but can coexist with other cutaneous findings such as calcifications, telangiectases, or pitting scars. Type III is characterized clinically by internal organ involvement, typical of systemic sclerosis, that has appeared before skin changes.²

An abnormal deposit of calcium in the cutaneous and subcutaneous tissue is called calcinosis cutis. There are 5 subtypes of calcinosis cutis: dystrophic, metastatic, idiopathic, iatrogenic, and calciphylaxis. Dystrophic skin calcifications may appear in patients with connective tissue diseases such as dermatomyositis or systemic sclerosis.³ Up to 25% of patients with systemic sclerosis can develop calcinosis cutis due to local tissue damage, with normal phosphocalcic metabolism.³

Calcinosis cutis is more common in patients with systemic sclerosis and positive anticentromere antibodies.⁴ The calcifications usually are located in areas that are subject to repeated trauma, such as the fingers or arms, though other locations have been described such as cervical, paraspinal, or on the hips.^5,6 Our patient developed calcifications on both legs, which represent atypical areas for this process.

Dermatomyositis also can present with calcinosis cutis. There are 4 patterns of calcification: superficial nodulelike calcified masses; deep calcified masses; deep sheetlike calcifications within the fascial planes; and a rare, diffuse, superficial lacy and reticular calcification that involves almost the entire body surface area.⁷ Patients with calcinosis cutis secondary to dermatomyositis usually develop proximal muscle weakness, high titers of creatine kinase, heliotrope rash, or interstitial lung disease with specific antibodies.

Calciphylaxis is a serious disorder involving the calcification of dermal and subcutaneous arterioles and capillaries. It presents with painful cutaneous areas of necrosis.

Venous ulcers also can present with secondary dystrophic calcification due to local tissue damage. These patients usually have cutaneous signs of chronic venous insufficiency. Our patient denied prior trauma to the area; therefore, a traumatic ulcer with secondary calcification was ruled out.

The most concerning complication of calcinosis cutis is the development of ulcers, which occurred in 154 of 316 calcinoses (48.7%) in patients with systemic sclerosis and secondary calcifications.⁸ These ulcers can cause disabling pain or become superinfected, as in our patient.

There currently is no drug capable of removing dystrophic calcifications, but diltiazem, minocycline, or colchicine can reduce their size and prevent their progression. In the event of neurologic compromise or intractable pain, the treatment of choice is surgical removal of the calcification.⁹ Curettage, intralesional sodium thiosulfate, and intravenous sodium thiosulfate also have been suggested as therapeutic options.¹⁰ Antibiotic treatment was carried out in our patient, which controlled the superinfection of the ulcers. Diltiazem also was started, with stabilization of the calcium deposits without a reduction in their size.

There are few studies evaluating the presence of nondigital ulcers in patients with systemic sclerosis. Shanmugam et al¹¹ calculated a 4% (N=249) prevalence of ulcers in the lower limbs of systemic sclerosis patients. In a study by Bohelay et al¹² of 45 patients, the estimated prevalence of lower limb ulcers was 12.8%, and the etiologies consisted of 22 cases of venous insufficiency (49%), 21 cases of ischemic causes (47%), and 2 cases of other causes (4%).

We present the case of a woman with ssSSc who developed dystrophic calcinosis cutis in atypical areas with secondary ulceration and superinfection. The skin usually plays a key role in the diagnosis of systemic sclerosis, as sclerodactyly and the characteristic generalized skin induration stand out in affected individuals. Although our patient was diagnosed with ssSSc, her skin manifestations also were crucial for the diagnosis, as she had ulcers on the lower limbs.

The Diagnosis: Calcinosis Cutis Due to Systemic Sclerosis Sine Scleroderma

Laboratory evaluation was notable for high titers of antinuclear antibodies (>1/320; reference range, 0–1/80) and positive anticentromere antibodies. There were no other relevant laboratory findings; phosphocalcic metabolism was within normal limits, and urinary sediment was normal. Biopsy of the edge of the ulcer revealed basophilic material compatible with calcium deposits. In a 3D volume rendering reconstruction from the lower limb scanner, grouped calcifications were observed in subcutaneous cellular tissue near the ulcer (Figure). The patient had a restrictive ventilatory pattern observed in a pulmonary function test. An esophageal motility study was normal.

The patient was diagnosed with systemic sclerosis sine scleroderma (ssSSc) type II because she met the 4 criteria established by Poormoghim et al¹ : (1) Raynaud phenomenon or a peripheral vascular equivalent (ie, digital pitting scars, digital-tip ulcers, digital-tip gangrene, abnormal nail fold capillaries); (2) positive antinuclear antibodies; (3) distal esophageal hypomotility, small bowel hypomotility, pulmonary interstitial fibrosis, primary pulmonary arterial hypertension (without fibrosis), cardiac involvement typical of scleroderma, or renal failure; and (4) no other defined connective tissue or other disease as a cause of the prior conditions.

Systemic sclerosis is a chronic disease characterized by progressive fibrosis of the skin and other internal organs—especially the lungs, kidneys, digestive tract, and heart—as well as generalized vascular dysfunction. Cutaneous induration is its hallmark; however, up to 10% of affected patients have ssSSc.² This entity is characterized by the total or partial absence of cutaneous manifestations of systemic sclerosis with the occurrence of internal organ involvement and serologic abnormalities. There are 3 types of ssSSc depending on the grade of skin involvement. Type I is characterized by the lack of any typical cutaneous stigmata of the disease. Type II is without sclerodactyly but can coexist with other cutaneous findings such as calcifications, telangiectases, or pitting scars. Type III is characterized clinically by internal organ involvement, typical of systemic sclerosis, that has appeared before skin changes.²

An abnormal deposit of calcium in the cutaneous and subcutaneous tissue is called calcinosis cutis. There are 5 subtypes of calcinosis cutis: dystrophic, metastatic, idiopathic, iatrogenic, and calciphylaxis. Dystrophic skin calcifications may appear in patients with connective tissue diseases such as dermatomyositis or systemic sclerosis.³ Up to 25% of patients with systemic sclerosis can develop calcinosis cutis due to local tissue damage, with normal phosphocalcic metabolism.³

Calcinosis cutis is more common in patients with systemic sclerosis and positive anticentromere antibodies.⁴ The calcifications usually are located in areas that are subject to repeated trauma, such as the fingers or arms, though other locations have been described such as cervical, paraspinal, or on the hips.^5,6 Our patient developed calcifications on both legs, which represent atypical areas for this process.

Dermatomyositis also can present with calcinosis cutis. There are 4 patterns of calcification: superficial nodulelike calcified masses; deep calcified masses; deep sheetlike calcifications within the fascial planes; and a rare, diffuse, superficial lacy and reticular calcification that involves almost the entire body surface area.⁷ Patients with calcinosis cutis secondary to dermatomyositis usually develop proximal muscle weakness, high titers of creatine kinase, heliotrope rash, or interstitial lung disease with specific antibodies.

Calciphylaxis is a serious disorder involving the calcification of dermal and subcutaneous arterioles and capillaries. It presents with painful cutaneous areas of necrosis.

Venous ulcers also can present with secondary dystrophic calcification due to local tissue damage. These patients usually have cutaneous signs of chronic venous insufficiency. Our patient denied prior trauma to the area; therefore, a traumatic ulcer with secondary calcification was ruled out.

The most concerning complication of calcinosis cutis is the development of ulcers, which occurred in 154 of 316 calcinoses (48.7%) in patients with systemic sclerosis and secondary calcifications.⁸ These ulcers can cause disabling pain or become superinfected, as in our patient.

There currently is no drug capable of removing dystrophic calcifications, but diltiazem, minocycline, or colchicine can reduce their size and prevent their progression. In the event of neurologic compromise or intractable pain, the treatment of choice is surgical removal of the calcification.⁹ Curettage, intralesional sodium thiosulfate, and intravenous sodium thiosulfate also have been suggested as therapeutic options.¹⁰ Antibiotic treatment was carried out in our patient, which controlled the superinfection of the ulcers. Diltiazem also was started, with stabilization of the calcium deposits without a reduction in their size.

There are few studies evaluating the presence of nondigital ulcers in patients with systemic sclerosis. Shanmugam et al¹¹ calculated a 4% (N=249) prevalence of ulcers in the lower limbs of systemic sclerosis patients. In a study by Bohelay et al¹² of 45 patients, the estimated prevalence of lower limb ulcers was 12.8%, and the etiologies consisted of 22 cases of venous insufficiency (49%), 21 cases of ischemic causes (47%), and 2 cases of other causes (4%).

We present the case of a woman with ssSSc who developed dystrophic calcinosis cutis in atypical areas with secondary ulceration and superinfection. The skin usually plays a key role in the diagnosis of systemic sclerosis, as sclerodactyly and the characteristic generalized skin induration stand out in affected individuals. Although our patient was diagnosed with ssSSc, her skin manifestations also were crucial for the diagnosis, as she had ulcers on the lower limbs.

Financial hardship remains prevalent among pregnant and postpartum women, despite the implementation of the Affordable Care Act (ACA), according to new findings published in JAMA Network Open.

Nearly a quarter (24%) of pregnant and postpartum women reported having unmet health care needs, 60% had health care unaffordability, and 54% reported general financial stress. Notably, the type of insurance was associated with the ability to afford health care.

Those with private insurance, along with women with lower incomes, were more likely to experience unaffordable health care, compared to those covered by public insurance or who had higher incomes.

Senior study author Michelle H. Moniz, MD, assistant professor in the department of obstetrics and gynecology at the University of Michigan, Ann Arbor, was surprised by multiple study findings. “The prevalence of financial hardship overall, and the three individual indicators of hardship, did not change over time from 2013 to 2018,” she said. “The ACA was enacted just prior to the study period, and while this policy had many benefits for women – especially around increasing insurance coverage – it does not seem to have improved financial hardship among pregnant and postpartum women.”

She emphasized that two groups were at the highest risk of health care unaffordability: those with private insurance and those living on low incomes. “This is notable, as we often think of private insurance as offering ‘Cadillac coverage,’ but our prior work suggests that privately insured women have strikingly high out-of-pocket costs for pregnancy and childbirth-related care,” Dr. Moniz said.

These expenses include deductibles, copays, and coinsurance payments, which come to about $4,500 on average. Medicaid plans, in contrast, have exceedingly low out-of-pocket costs for pregnant and postpartum women. “Findings from the current study call for targeted policy interventions to alleviate financial strain and remove financial barriers to health care access for privately insured families,” she said. “Similarly, families living on lower incomes were also at high risk of health care unaffordability. This may be because even small out-of-pocket costs, or health care–associated costs, account for a larger share of the family’s income.”

This finding for lower-income women calls for targeted policy interventions. “Sliding-scale deductibles, for example, are one solution that might mitigate economic hardship and remove cost-related barriers to health care for pregnant and postpartum women,” Dr. Moniz added.

Health care unaffordability high

In this study, Dr. Moniz and colleagues evaluated the prevalence of financial hardship among peripartum women over time, and how it was affected by their income level and the type of insurance coverage.

They conducted a cross-sectional study that included peripartum women between the ages of 18 and 45 years who reported being currently pregnant or pregnant in the past 12 months. The women were all participants in the National Health Interview Survey, which covers the period from 2013 to 2018, and the data were analyzed from January to May 2021.

The cohort included 3,509 peripartum women, and was weighted to represent 1,050,789 women, with a mean age of 29 years. In 2018, an estimated 39,017 of 184,018 (21.2%) were Black; 36,045 (19.6%) were Hispanic; and 97,366 (52.9%) were White. In the latter years of the study period, the participants tended to be older, more highly educated, and less likely to lack insurance.

When the authors compared the unadjusted reported financial hardship outcome by each study year, unmet health care need (2013: 27.9% [95% confidence interval, 24.4%-31.7%]; 2018: 23.7% [95% CI, 19.5%-28.6%]), health care unaffordability (2013: 65.7% [95% CI, 61.1%-70.0%]; 2018: 58.8% [95% CI, 53.4%-64.0%]), and general financial stress (2013: 60.6% [95% CI, 55.2%-65.8%]; 2018: 53.8% [95% CI, 47.8%-59.8%]) remained largely unchanged between 2013 and 2018.

When they looked at the relationship between insurance type, income, and financial difficulties, some degree of financial hardship was common across all groups; private insurance: 63.8% [95% CI, 61.1%-66.6%]; with public insurance: 49.9% [95% CI, 46.4%-53.4%]; with no insurance: 81.8% [95% CI, 76.4%-87.3%]; with income < 400% of the federal poverty level (FPL): 65.5% [95% CI, 62.1%-66.9%]; with income at least 400% of the FPL: 49.3% [95% CI,44.7%-53.9%]).

Those without any insurance had the highest odds of reporting unmet health care needs (adjusted OR [aOR], 4.40; 95% CI, 3.23-6.00) and health care unaffordability (aOR, 5.18; 95% CI, 3.49-7.70) compared with women who received public insurance.

But while women with private insurance had lower odds of reporting unmet health care needs (aOR, 0.67; 95% CI, 0.52-0.87), they faced higher odds of reporting health care unaffordability (aOR, 1.88; 95% CI, 1.49-2.36) compared to women who had public insurance.

Those with household incomes of less than 400% of the FPL had higher odds of reporting unmet health care need (aOR,1.50; 95% CI, 1.08-2.08) and health care unaffordability (aOR, 1.98; 95% CI, 1.54-2.55) versus women whose household incomes were at least 400% of FPL. The odds of general financial stress did not significantly differ by insurance status/type or income level.

Weighing in on the data

Jamie Daw, PhD, assistant professor of health policy and management, Columbia University Mailman School of Public Health, New York, noted that many people think of private insurance as “good coverage.”

“But the portion of medical costs that patients are required to pay under private plans has risen dramatically over the past decade,” she said. “Over half of the U.S. workforce is now enrolled in high-deductible plans, where the average deductible was $4,500 in 2020. The private insurance of today does not provide sufficient financial protection for most families, who would need to have the liquid assets to cover childbirth.”

Another expert agreed that the high out-of-pocket costs for women with private health insurance were probably responsible for making peripartum health care more unaffordable. These included costs for pregnancy care as well as for maternal and infant care during and after childbirth.

“This study reporting the high unmet medical needs and unaffordability of health care for peripartum women further underscores that the U.S. health care system is not meeting the needs of pregnant women, mothers, and their newborn infants,” said Lois K. Lee, MD, associate professor of pediatrics and emergency medicine at Harvard Medical School and associate director for public policy at the Sandra L. Fenwick Institute for Pediatric Health Equity and Inclusion, Boston.

“It is imperative to optimize the health of pregnant mothers to optimize the health of infants, who are our future society,” she said. “Policies which would expand Medicaid coverage to a full 1-year postpartum across all states is one important strategy to improve health care access and affordability to peripartum women. However, this must be part of a multipronged approach addressing the social determinants of health, as insurance coverage alone will not fully address this important health issue of peripartum women, and their children.”

Dr Moniz reported receiving personal fees from the RAND Corporation, the Society of Family Planning outside the submitted work and grant K08 HS025465 from the Agency for Healthcare Research and Quality. Dr. Daw has no disclosures. Dr. Lee reports speaker fees from the American Academy of Pediatrics and SUNY Upstate Medical University. Coauthor Dr. Taylor was supported by the National Clinician Scholars Program at the University of Michigan. Dr Dalton was supported by grant R01 HS023784 from the Agency for Healthcare Research and Quality.
 

Financial hardship remains prevalent among pregnant and postpartum women, despite the implementation of the Affordable Care Act (ACA), according to new findings published in JAMA Network Open.

Nearly a quarter (24%) of pregnant and postpartum women reported having unmet health care needs, 60% had health care unaffordability, and 54% reported general financial stress. Notably, the type of insurance was associated with the ability to afford health care.

Those with private insurance, along with women with lower incomes, were more likely to experience unaffordable health care, compared to those covered by public insurance or who had higher incomes.

Senior study author Michelle H. Moniz, MD, assistant professor in the department of obstetrics and gynecology at the University of Michigan, Ann Arbor, was surprised by multiple study findings. “The prevalence of financial hardship overall, and the three individual indicators of hardship, did not change over time from 2013 to 2018,” she said. “The ACA was enacted just prior to the study period, and while this policy had many benefits for women – especially around increasing insurance coverage – it does not seem to have improved financial hardship among pregnant and postpartum women.”

She emphasized that two groups were at the highest risk of health care unaffordability: those with private insurance and those living on low incomes. “This is notable, as we often think of private insurance as offering ‘Cadillac coverage,’ but our prior work suggests that privately insured women have strikingly high out-of-pocket costs for pregnancy and childbirth-related care,” Dr. Moniz said.

These expenses include deductibles, copays, and coinsurance payments, which come to about $4,500 on average. Medicaid plans, in contrast, have exceedingly low out-of-pocket costs for pregnant and postpartum women. “Findings from the current study call for targeted policy interventions to alleviate financial strain and remove financial barriers to health care access for privately insured families,” she said. “Similarly, families living on lower incomes were also at high risk of health care unaffordability. This may be because even small out-of-pocket costs, or health care–associated costs, account for a larger share of the family’s income.”

This finding for lower-income women calls for targeted policy interventions. “Sliding-scale deductibles, for example, are one solution that might mitigate economic hardship and remove cost-related barriers to health care for pregnant and postpartum women,” Dr. Moniz added.

Health care unaffordability high

In this study, Dr. Moniz and colleagues evaluated the prevalence of financial hardship among peripartum women over time, and how it was affected by their income level and the type of insurance coverage.

They conducted a cross-sectional study that included peripartum women between the ages of 18 and 45 years who reported being currently pregnant or pregnant in the past 12 months. The women were all participants in the National Health Interview Survey, which covers the period from 2013 to 2018, and the data were analyzed from January to May 2021.

The cohort included 3,509 peripartum women, and was weighted to represent 1,050,789 women, with a mean age of 29 years. In 2018, an estimated 39,017 of 184,018 (21.2%) were Black; 36,045 (19.6%) were Hispanic; and 97,366 (52.9%) were White. In the latter years of the study period, the participants tended to be older, more highly educated, and less likely to lack insurance.

When the authors compared the unadjusted reported financial hardship outcome by each study year, unmet health care need (2013: 27.9% [95% confidence interval, 24.4%-31.7%]; 2018: 23.7% [95% CI, 19.5%-28.6%]), health care unaffordability (2013: 65.7% [95% CI, 61.1%-70.0%]; 2018: 58.8% [95% CI, 53.4%-64.0%]), and general financial stress (2013: 60.6% [95% CI, 55.2%-65.8%]; 2018: 53.8% [95% CI, 47.8%-59.8%]) remained largely unchanged between 2013 and 2018.

When they looked at the relationship between insurance type, income, and financial difficulties, some degree of financial hardship was common across all groups; private insurance: 63.8% [95% CI, 61.1%-66.6%]; with public insurance: 49.9% [95% CI, 46.4%-53.4%]; with no insurance: 81.8% [95% CI, 76.4%-87.3%]; with income < 400% of the federal poverty level (FPL): 65.5% [95% CI, 62.1%-66.9%]; with income at least 400% of the FPL: 49.3% [95% CI,44.7%-53.9%]).

Those without any insurance had the highest odds of reporting unmet health care needs (adjusted OR [aOR], 4.40; 95% CI, 3.23-6.00) and health care unaffordability (aOR, 5.18; 95% CI, 3.49-7.70) compared with women who received public insurance.

But while women with private insurance had lower odds of reporting unmet health care needs (aOR, 0.67; 95% CI, 0.52-0.87), they faced higher odds of reporting health care unaffordability (aOR, 1.88; 95% CI, 1.49-2.36) compared to women who had public insurance.

Those with household incomes of less than 400% of the FPL had higher odds of reporting unmet health care need (aOR,1.50; 95% CI, 1.08-2.08) and health care unaffordability (aOR, 1.98; 95% CI, 1.54-2.55) versus women whose household incomes were at least 400% of FPL. The odds of general financial stress did not significantly differ by insurance status/type or income level.

Weighing in on the data

Jamie Daw, PhD, assistant professor of health policy and management, Columbia University Mailman School of Public Health, New York, noted that many people think of private insurance as “good coverage.”

“But the portion of medical costs that patients are required to pay under private plans has risen dramatically over the past decade,” she said. “Over half of the U.S. workforce is now enrolled in high-deductible plans, where the average deductible was $4,500 in 2020. The private insurance of today does not provide sufficient financial protection for most families, who would need to have the liquid assets to cover childbirth.”

Another expert agreed that the high out-of-pocket costs for women with private health insurance were probably responsible for making peripartum health care more unaffordable. These included costs for pregnancy care as well as for maternal and infant care during and after childbirth.

“This study reporting the high unmet medical needs and unaffordability of health care for peripartum women further underscores that the U.S. health care system is not meeting the needs of pregnant women, mothers, and their newborn infants,” said Lois K. Lee, MD, associate professor of pediatrics and emergency medicine at Harvard Medical School and associate director for public policy at the Sandra L. Fenwick Institute for Pediatric Health Equity and Inclusion, Boston.

“It is imperative to optimize the health of pregnant mothers to optimize the health of infants, who are our future society,” she said. “Policies which would expand Medicaid coverage to a full 1-year postpartum across all states is one important strategy to improve health care access and affordability to peripartum women. However, this must be part of a multipronged approach addressing the social determinants of health, as insurance coverage alone will not fully address this important health issue of peripartum women, and their children.”

Dr Moniz reported receiving personal fees from the RAND Corporation, the Society of Family Planning outside the submitted work and grant K08 HS025465 from the Agency for Healthcare Research and Quality. Dr. Daw has no disclosures. Dr. Lee reports speaker fees from the American Academy of Pediatrics and SUNY Upstate Medical University. Coauthor Dr. Taylor was supported by the National Clinician Scholars Program at the University of Michigan. Dr Dalton was supported by grant R01 HS023784 from the Agency for Healthcare Research and Quality.
 

Financial hardship remains prevalent among pregnant and postpartum women, despite the implementation of the Affordable Care Act (ACA), according to new findings published in JAMA Network Open.

Nearly a quarter (24%) of pregnant and postpartum women reported having unmet health care needs, 60% had health care unaffordability, and 54% reported general financial stress. Notably, the type of insurance was associated with the ability to afford health care.

Those with private insurance, along with women with lower incomes, were more likely to experience unaffordable health care, compared to those covered by public insurance or who had higher incomes.

Senior study author Michelle H. Moniz, MD, assistant professor in the department of obstetrics and gynecology at the University of Michigan, Ann Arbor, was surprised by multiple study findings. “The prevalence of financial hardship overall, and the three individual indicators of hardship, did not change over time from 2013 to 2018,” she said. “The ACA was enacted just prior to the study period, and while this policy had many benefits for women – especially around increasing insurance coverage – it does not seem to have improved financial hardship among pregnant and postpartum women.”

She emphasized that two groups were at the highest risk of health care unaffordability: those with private insurance and those living on low incomes. “This is notable, as we often think of private insurance as offering ‘Cadillac coverage,’ but our prior work suggests that privately insured women have strikingly high out-of-pocket costs for pregnancy and childbirth-related care,” Dr. Moniz said.

These expenses include deductibles, copays, and coinsurance payments, which come to about $4,500 on average. Medicaid plans, in contrast, have exceedingly low out-of-pocket costs for pregnant and postpartum women. “Findings from the current study call for targeted policy interventions to alleviate financial strain and remove financial barriers to health care access for privately insured families,” she said. “Similarly, families living on lower incomes were also at high risk of health care unaffordability. This may be because even small out-of-pocket costs, or health care–associated costs, account for a larger share of the family’s income.”

This finding for lower-income women calls for targeted policy interventions. “Sliding-scale deductibles, for example, are one solution that might mitigate economic hardship and remove cost-related barriers to health care for pregnant and postpartum women,” Dr. Moniz added.

Health care unaffordability high

In this study, Dr. Moniz and colleagues evaluated the prevalence of financial hardship among peripartum women over time, and how it was affected by their income level and the type of insurance coverage.

They conducted a cross-sectional study that included peripartum women between the ages of 18 and 45 years who reported being currently pregnant or pregnant in the past 12 months. The women were all participants in the National Health Interview Survey, which covers the period from 2013 to 2018, and the data were analyzed from January to May 2021.

The cohort included 3,509 peripartum women, and was weighted to represent 1,050,789 women, with a mean age of 29 years. In 2018, an estimated 39,017 of 184,018 (21.2%) were Black; 36,045 (19.6%) were Hispanic; and 97,366 (52.9%) were White. In the latter years of the study period, the participants tended to be older, more highly educated, and less likely to lack insurance.

When the authors compared the unadjusted reported financial hardship outcome by each study year, unmet health care need (2013: 27.9% [95% confidence interval, 24.4%-31.7%]; 2018: 23.7% [95% CI, 19.5%-28.6%]), health care unaffordability (2013: 65.7% [95% CI, 61.1%-70.0%]; 2018: 58.8% [95% CI, 53.4%-64.0%]), and general financial stress (2013: 60.6% [95% CI, 55.2%-65.8%]; 2018: 53.8% [95% CI, 47.8%-59.8%]) remained largely unchanged between 2013 and 2018.

When they looked at the relationship between insurance type, income, and financial difficulties, some degree of financial hardship was common across all groups; private insurance: 63.8% [95% CI, 61.1%-66.6%]; with public insurance: 49.9% [95% CI, 46.4%-53.4%]; with no insurance: 81.8% [95% CI, 76.4%-87.3%]; with income < 400% of the federal poverty level (FPL): 65.5% [95% CI, 62.1%-66.9%]; with income at least 400% of the FPL: 49.3% [95% CI,44.7%-53.9%]).

Those without any insurance had the highest odds of reporting unmet health care needs (adjusted OR [aOR], 4.40; 95% CI, 3.23-6.00) and health care unaffordability (aOR, 5.18; 95% CI, 3.49-7.70) compared with women who received public insurance.

But while women with private insurance had lower odds of reporting unmet health care needs (aOR, 0.67; 95% CI, 0.52-0.87), they faced higher odds of reporting health care unaffordability (aOR, 1.88; 95% CI, 1.49-2.36) compared to women who had public insurance.

Those with household incomes of less than 400% of the FPL had higher odds of reporting unmet health care need (aOR,1.50; 95% CI, 1.08-2.08) and health care unaffordability (aOR, 1.98; 95% CI, 1.54-2.55) versus women whose household incomes were at least 400% of FPL. The odds of general financial stress did not significantly differ by insurance status/type or income level.

Weighing in on the data

Jamie Daw, PhD, assistant professor of health policy and management, Columbia University Mailman School of Public Health, New York, noted that many people think of private insurance as “good coverage.”

“But the portion of medical costs that patients are required to pay under private plans has risen dramatically over the past decade,” she said. “Over half of the U.S. workforce is now enrolled in high-deductible plans, where the average deductible was $4,500 in 2020. The private insurance of today does not provide sufficient financial protection for most families, who would need to have the liquid assets to cover childbirth.”

Another expert agreed that the high out-of-pocket costs for women with private health insurance were probably responsible for making peripartum health care more unaffordable. These included costs for pregnancy care as well as for maternal and infant care during and after childbirth.

“This study reporting the high unmet medical needs and unaffordability of health care for peripartum women further underscores that the U.S. health care system is not meeting the needs of pregnant women, mothers, and their newborn infants,” said Lois K. Lee, MD, associate professor of pediatrics and emergency medicine at Harvard Medical School and associate director for public policy at the Sandra L. Fenwick Institute for Pediatric Health Equity and Inclusion, Boston.

“It is imperative to optimize the health of pregnant mothers to optimize the health of infants, who are our future society,” she said. “Policies which would expand Medicaid coverage to a full 1-year postpartum across all states is one important strategy to improve health care access and affordability to peripartum women. However, this must be part of a multipronged approach addressing the social determinants of health, as insurance coverage alone will not fully address this important health issue of peripartum women, and their children.”

Dr Moniz reported receiving personal fees from the RAND Corporation, the Society of Family Planning outside the submitted work and grant K08 HS025465 from the Agency for Healthcare Research and Quality. Dr. Daw has no disclosures. Dr. Lee reports speaker fees from the American Academy of Pediatrics and SUNY Upstate Medical University. Coauthor Dr. Taylor was supported by the National Clinician Scholars Program at the University of Michigan. Dr Dalton was supported by grant R01 HS023784 from the Agency for Healthcare Research and Quality.
 

My 50th medical school reunion has come and gone. This milestone offered me another opportunity to look back over the last 5 decades of pediatrics that I have watched pass under the bridge. Triggered by the discovery of two recently published studies, this particular view back over my shoulder induced a wave of sadness, anger, and frustration that I have had trouble shaking.

The first study demonstrated a strong positive effect of exercise on academic achievement, the other found that children who were more physically active have weathered the pandemic with fewer mental health problems.

These studies are just two pieces of a growing body of evidence that our sedentary lifestyles are shortening our lives and launching our children into adulthood burdened with a raft of health risks they could possibly have avoided by being more physically active. Encountering these two papers just as the alumni office was inviting me to engage in an orgy of retrospection and introspection made me consider how little I and others in my profession have done to substantially address this scourge on our young people.

Yes, I have tried to encourage my patients to be less sedentary and more active. Yes, I have tried to set a very visible example by bicycling and walking around town. Yes, I have coached youth sports teams. All of my children and grandchildren are leading active lives and appear to be reaping the benefits. But in the grander scheme of things I feel that neither I nor the American Academy of Pediatrics has made a difference.

In March of 2020 the AAP published a clinical report that lists the numerous positive associations between activity and health that includes a comprehensive collection of suggestions for providers on how we might assess the problem of inactivity and then play a role in addressing it with our patients and our communities. Unfortunately, the message’s importance was lost in the glut of pandemic news.

While the AAP’s report should have been published many decades ago, I doubt the delay lessened its impact significantly because the report is primarily a compendium of recommendations that in the long run will be seen as just another example of us believers preaching to the choir.

Making lifestyle changes on the order of magnitude necessary to convert an increasingly sedentary population into one that unconsciously becomes physically active requires more than recommendations. It is only natural that folks have trouble saying “No.”

No to the entertainment of electronic devices. No to the comforts of all-weather enclosed transportation. No to hours on the couch. Overcoming the inertia built into our society is going to require more than encouragement, recommendations, and professional sports–sponsored presidential initiatives.

Mandate has become a politically charged dirty word. But our current experience with the COVID-19 vaccines should help us realize that there is a significant segment of the population that doesn’t like being told what to do even if the outcome is in their best interest. Education and rewards have fallen short, but the evidence is mounting that mandates can work.

There was a time when physical activity was built into every child’s school day. For a variety of bad reasons, vigorous physical education classes and once- or twice-daily outdoor recesses have disappeared from the educational landscape. It is time to return to them in a robust form. Unfortunately, because activity isn’t happening at home it will take a government mandate.

There will be pushback. Even from some educators whose observations should have shown them the critical role of physical activity in health and academic success. We must move the distraction of the phenomenon once known simply as hyperactivity to the back burner and tackle the real epidemic of hypoactivity that is destroying our children.
 

Dr. Wilkoff practiced primary care pediatrics in Brunswick, Maine, for nearly 40 years. He has authored several books on behavioral pediatrics, including “How to Say No to Your Toddler.” Other than a Littman stethoscope he accepted as a first-year medical student in 1966, Dr. Wilkoff reports having nothing to disclose. Email him at [email protected].

My 50th medical school reunion has come and gone. This milestone offered me another opportunity to look back over the last 5 decades of pediatrics that I have watched pass under the bridge. Triggered by the discovery of two recently published studies, this particular view back over my shoulder induced a wave of sadness, anger, and frustration that I have had trouble shaking.

The first study demonstrated a strong positive effect of exercise on academic achievement, the other found that children who were more physically active have weathered the pandemic with fewer mental health problems.

These studies are just two pieces of a growing body of evidence that our sedentary lifestyles are shortening our lives and launching our children into adulthood burdened with a raft of health risks they could possibly have avoided by being more physically active. Encountering these two papers just as the alumni office was inviting me to engage in an orgy of retrospection and introspection made me consider how little I and others in my profession have done to substantially address this scourge on our young people.

Yes, I have tried to encourage my patients to be less sedentary and more active. Yes, I have tried to set a very visible example by bicycling and walking around town. Yes, I have coached youth sports teams. All of my children and grandchildren are leading active lives and appear to be reaping the benefits. But in the grander scheme of things I feel that neither I nor the American Academy of Pediatrics has made a difference.

In March of 2020 the AAP published a clinical report that lists the numerous positive associations between activity and health that includes a comprehensive collection of suggestions for providers on how we might assess the problem of inactivity and then play a role in addressing it with our patients and our communities. Unfortunately, the message’s importance was lost in the glut of pandemic news.

While the AAP’s report should have been published many decades ago, I doubt the delay lessened its impact significantly because the report is primarily a compendium of recommendations that in the long run will be seen as just another example of us believers preaching to the choir.

Making lifestyle changes on the order of magnitude necessary to convert an increasingly sedentary population into one that unconsciously becomes physically active requires more than recommendations. It is only natural that folks have trouble saying “No.”

No to the entertainment of electronic devices. No to the comforts of all-weather enclosed transportation. No to hours on the couch. Overcoming the inertia built into our society is going to require more than encouragement, recommendations, and professional sports–sponsored presidential initiatives.

Mandate has become a politically charged dirty word. But our current experience with the COVID-19 vaccines should help us realize that there is a significant segment of the population that doesn’t like being told what to do even if the outcome is in their best interest. Education and rewards have fallen short, but the evidence is mounting that mandates can work.

There was a time when physical activity was built into every child’s school day. For a variety of bad reasons, vigorous physical education classes and once- or twice-daily outdoor recesses have disappeared from the educational landscape. It is time to return to them in a robust form. Unfortunately, because activity isn’t happening at home it will take a government mandate.

There will be pushback. Even from some educators whose observations should have shown them the critical role of physical activity in health and academic success. We must move the distraction of the phenomenon once known simply as hyperactivity to the back burner and tackle the real epidemic of hypoactivity that is destroying our children.
 

Dr. Wilkoff practiced primary care pediatrics in Brunswick, Maine, for nearly 40 years. He has authored several books on behavioral pediatrics, including “How to Say No to Your Toddler.” Other than a Littman stethoscope he accepted as a first-year medical student in 1966, Dr. Wilkoff reports having nothing to disclose. Email him at [email protected].

My 50th medical school reunion has come and gone. This milestone offered me another opportunity to look back over the last 5 decades of pediatrics that I have watched pass under the bridge. Triggered by the discovery of two recently published studies, this particular view back over my shoulder induced a wave of sadness, anger, and frustration that I have had trouble shaking.

The first study demonstrated a strong positive effect of exercise on academic achievement, the other found that children who were more physically active have weathered the pandemic with fewer mental health problems.

These studies are just two pieces of a growing body of evidence that our sedentary lifestyles are shortening our lives and launching our children into adulthood burdened with a raft of health risks they could possibly have avoided by being more physically active. Encountering these two papers just as the alumni office was inviting me to engage in an orgy of retrospection and introspection made me consider how little I and others in my profession have done to substantially address this scourge on our young people.

Yes, I have tried to encourage my patients to be less sedentary and more active. Yes, I have tried to set a very visible example by bicycling and walking around town. Yes, I have coached youth sports teams. All of my children and grandchildren are leading active lives and appear to be reaping the benefits. But in the grander scheme of things I feel that neither I nor the American Academy of Pediatrics has made a difference.

In March of 2020 the AAP published a clinical report that lists the numerous positive associations between activity and health that includes a comprehensive collection of suggestions for providers on how we might assess the problem of inactivity and then play a role in addressing it with our patients and our communities. Unfortunately, the message’s importance was lost in the glut of pandemic news.

While the AAP’s report should have been published many decades ago, I doubt the delay lessened its impact significantly because the report is primarily a compendium of recommendations that in the long run will be seen as just another example of us believers preaching to the choir.

Making lifestyle changes on the order of magnitude necessary to convert an increasingly sedentary population into one that unconsciously becomes physically active requires more than recommendations. It is only natural that folks have trouble saying “No.”

No to the entertainment of electronic devices. No to the comforts of all-weather enclosed transportation. No to hours on the couch. Overcoming the inertia built into our society is going to require more than encouragement, recommendations, and professional sports–sponsored presidential initiatives.

Mandate has become a politically charged dirty word. But our current experience with the COVID-19 vaccines should help us realize that there is a significant segment of the population that doesn’t like being told what to do even if the outcome is in their best interest. Education and rewards have fallen short, but the evidence is mounting that mandates can work.

There was a time when physical activity was built into every child’s school day. For a variety of bad reasons, vigorous physical education classes and once- or twice-daily outdoor recesses have disappeared from the educational landscape. It is time to return to them in a robust form. Unfortunately, because activity isn’t happening at home it will take a government mandate.

There will be pushback. Even from some educators whose observations should have shown them the critical role of physical activity in health and academic success. We must move the distraction of the phenomenon once known simply as hyperactivity to the back burner and tackle the real epidemic of hypoactivity that is destroying our children.
 

Dr. Wilkoff practiced primary care pediatrics in Brunswick, Maine, for nearly 40 years. He has authored several books on behavioral pediatrics, including “How to Say No to Your Toddler.” Other than a Littman stethoscope he accepted as a first-year medical student in 1966, Dr. Wilkoff reports having nothing to disclose. Email him at [email protected].