Feature

Taking call is one of the more challenging - and annoying - aspects of the job for many physicians. Calls may wake them up in the middle of the night and can interfere with their at-home activities. In Medscape’s Employed Physicians Report, 37% of respondents said they have from 1 to 5 hours of call per month; 19% said they have 6 to 10 hours; and 12% have 11 hours or more.

“Even if you don’t have to come in to the ED, you can get calls in the middle of the night, and you may get paid very little, if anything,” said Robert Bitterman MD, JD, an emergency physician and attorney in Harbor Springs, Mich.

And responding to the calls is not optional. Dr. Bitterman said if on-call physicians don’t perform their duties, they could lose their hospital privileges, be fined by the federal government, or be sued for malpractice.

On-call activities are regulated by the federal Emergency Medical Treatment and Active Labor Act (EMTALA). Dr. Bitterman said it’s rare for the federal government to prosecute on-call physicians for violating EMTALA. Instead, it’s more likely that the hospital will be fined for EMTALA violations committed by on-call physicians.

However, the hospital passes the on-call obligation on to individual physicians through medical staff bylaws. Physicians who violate the bylaws may have their privileges restricted or removed, Dr. Bitterman said. Physicians could also be sued for malpractice, even if they never treated the patient, he added.
 

After-hours call duty in physicians’ practices

A very different type of call duty is having to respond to calls from one’s own patients after regular hours. Unlike doctors on ED call, who usually deal with patients they have never met, these physicians deal with their established patients or those of a colleague in their practice.

Courts have established that physicians have to provide an answering service or other means for their patients to contact them after hours, and the doctor must respond to these calls in a timely manner.

In a 2015 Louisiana ruling, a cardiologist was found liable for malpractice because he didn’t respond to an after-hours call from his patient. The patient tried several times to contact the cardiologist but got no reply.

Physicians may also be responsible if their answering service does not send critical messages to them immediately, if it fails to make appropriate documentation, or if it sends inaccurate data to the doctor.
 

Cases when on-call doctors didn’t respond

The Office of the Inspector General (OIG) of the U.S. Health and Human Services Administration oversees federal EMTALA violations and regularly reports them.

In 2018, the OIG fined a hospital in Waterloo, Iowa, $90,000 when an on-call cardiologist failed to implant a pacemaker for an ED patient. According to the OIG’s report, the patient arrived at the hospital with heart problems. Reached by phone, the cardiologist directed the ED physician to begin transcutaneous pacing but asked that the patient be transferred to another hospital for placement of the pacemaker. The patient died after transfer.

The OIG found that the original cardiologist could have placed the pacemaker, but, as often happens, it only fined the hospital, not the on-call physician for the EMTALA violation.

EMTALA requires that hospitals provide on-call specialists to assist emergency physicians with care of patients who arrive in the ED. In specialties for which there are few doctors to choose from, the on-call specialist may be on duty every third night and every third weekend. This can be daunting, especially for specialists who’ve had a grueling day of work.

Occasionally, on-call physicians, fearful they could make a medical error, request that the patient be transferred to another hospital for treatment. This is what a neurosurgeon who was on call at a Topeka, Kan., hospital did in 2001. Transferred to another hospital, the patient underwent an operation but lost sensation in his lower extremities. The patient sued the on-call neurosurgeon for negligence.

During the trial, the on-call neurosurgeon testified that he was “feeling run-down because he had been an on-call physician every third night for more than 10 years.” He also said this was the first time he had refused to see a patient because of fatigue, and he had decided that the patient “would be better off at a trauma center that had a trauma team and a fresher surgeon.”

The neurosurgeon successfully defended the malpractice suit, but Dr. Bitterman said he might have lost had there not been some unusual circumstances in the case. The court ruled that the hospital had not clearly defined the duties of on-call physicians, and the lawsuit didn’t cite the neurosurgeon’s EMTALA duty.
 

On-call duties defined by EMTALA

EMTALA sets the overall rules for on-call duties, which each hospital is expected to fine-tune on the basis of its own particular circumstances. Here are some of those rules, issued by the Centers for Medicare & Medicaid Services and the OIG.

Only an individual physician can be on call. The hospital’s on-call schedule cannot name a physician practice.

Call applies to all ED patients. Physicians cannot limit their on-call responsibilities to their own patients, to patients in their insurance network, or to paying patients.

There may be some gaps in the call schedule. The OIG is not specific as to how many gaps are allowed, said Nick Healey, an attorney in Cheyenne, Wyo., who has written about on-call duties. Among other things, adequate coverage depends on the number of available physicians and the demand for their services. Mr. Healey added that states may require more extensive availability of on-call physicians at high-level trauma centers.

Hospitals must have made arrangements for transfer. Whenever there is a gap in the schedule, hospitals need to have a designated hospital to send the patient to. Hospitals that unnecessarily transfer patients will be penalized.

The ED physician calls the shots. The emergency physician handling the case decides if the on-call doctor has to come in and treat the patient firsthand.

The on-call physician may delegate the work to others. On-call physicians may designate a nurse practitioner or physician assistant, but the on-call physician is ultimately responsible. The ED doctor may require the physician to come in anyway, according to Todd B. Taylor, MD, an emergency physician in Phoenix, who has written about on-call duties. Dr. Bitterman noted that the physician may designate a colleague to take their call, but the substitute has to have privileges at the hospital.

Physicians may do their own work while on call. Physicians can perform elective surgery while on call, provided they have made arrangements if they then become unavailable for duty, Dr. Taylor said. He added that physicians can also have simultaneous call at other hospitals, provided they make arrangements.
 

The hospital fine-tunes call obligations

The hospital is expected to further define the federal rules. For instance, the CMS says physicians should respond to calls within a “reasonable period of time” and requires hospitals to specify response times, which may be 15-30 minutes for responding to phone calls and traveling to the ED, Dr. Bitterman said.

The CMS says older physicians can be exempted from call. The hospital determines the age at which physicians can be exempted. “Hospitals typically exempt physicians over age 65 or 70, or when they have certain medical conditions,” said Lowell Brown, a Los Angeles attorney who deals with on-call duties.

The hospital also sets the call schedule, which may result in uncovered periods in specialties in which there are few physicians to draw from, according to Mr. Healey. He said many hospitals still use a simple rule of thumb, even though it has been dismissed by the CMS. Under this so-called “rule of three,” hospitals that have three doctors or fewer in a specialty do not have to provide constant call coverage.

On-call rules are part of the medical staff bylaws, and they have to be approved by the medical staff. This may require delicate negotiations between the staff’s leadership and administrators, Dr. Bitterman said.

It is often up to the emergency physician on duty to enforce the hospital’s on-call rules, Dr. Taylor said. “If the ED physician is having trouble, he or she may contact the on-call physician’s department chairman or, if necessary, the chief of the medical staff and ask that person to deal with the physician,” Dr. Taylor said.

The ED physician has to determine whether the patient needs to be transferred to another hospital. Dr. Taylor said the ED physician must fill out a transfer form and obtain consent from the receiving hospital.

If a patient has to be transferred because an on-call physician failed to appear, the originating hospital has to report this to the CMS, and the physician and the hospital can be cited for an inappropriate transfer and fined, Mr. Brown said. “The possibility of being identified in this way should be a powerful incentive to accept call duty,” he added.
 

Malpractice exposure of on-call physicians

When on-call doctors provide medical advice regarding an ED patient, that advice may be subject to malpractice litigation, Dr. Taylor said. “Even if you only give the ED doctor advice over the phone, that may establish a patient-physician relationship and a duty that patient can cite in a malpractice case,” he noted.

Refusing to take call may also be grounds for a malpractice lawsuit, Dr. Bitterman said. Refusing to see a patient would not be considered medical negligence, he continued, because no medical decision is made. Rather, it involves general negligence, which occurs when physicians fail to carry out duties expected of them.

Dr. Bitterman cited a 2006 malpractice judgment in which an on-call neurosurgeon in Missouri was found to be generally negligent. The neurosurgeon had arranged for a colleague in his practice to take his call, but the colleague did not have privileges at the hospital.

A patient with a brain bleed came in and the substitute was on duty. The patient had to be transferred to another hospital, where the patient died. The court ordered that the on-call doctor and the originating hospital had to split a fine of $400,800.
 

On-call physicians can be charged with abandonment

Dr. Bitterman said that if on-call physicians do not provide expected follow-up treatment for an ED patient, they could be charged with abandonment, which is a matter of state law and involves filing a malpractice lawsuit.

Abandonment involves unilaterally terminating the patient relationship without providing notice. There must be an established relationship, which, in the case of call, is formed when the doctor comes to the ED to examine or admit the patient, Dr. Bitterman said. He added that the on-call doctor’s obligation applies only to the medical condition the patient came in for.

Even when an on-call doctor does not see a patient, a relationship can be established if the hospital requires its on-call doctors to make follow-up visits for ED patients, Dr. Taylor said. At some hospitals, he said, on-call doctors have blanket agreements to provide follow-up care in return for not having to arrive in the middle of the night during the ED visit.

Dr. Taylor gave an example of the on-call doctor’s obligation: “The ED doctor puts a splint on the patient’s ankle fracture, and the orthopedic surgeon on call agrees to follow up with the patient within the next few days. If the orthopedic surgeon refuses to follow up without making a reasonable accommodation, it may become an issue of patient abandonment.”
 

Now everyone has a good grasp of the rules

Fifteen years ago, many doctors were in open revolt against on-call duties, but they are more accepting now and understand the rules better, Mr. Healey said.

“Many hospitals have begun paying some specialists for call and designating hospitalists and surgicalists to do at least some of the work that used to be expected of on-call doctors,” he said.

According to Dr. Taylor, today’s on-call doctors often have less to do than in the past. “For example,” he said, “the hospitalist may admit an orthopedic patient at night, and then the orthopedic surgeon does the operation the next day. We’ve had EMTALA for 36 years now, and hospitals and doctors know how call works.”

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

Taking call is one of the more challenging - and annoying - aspects of the job for many physicians. Calls may wake them up in the middle of the night and can interfere with their at-home activities. In Medscape’s Employed Physicians Report, 37% of respondents said they have from 1 to 5 hours of call per month; 19% said they have 6 to 10 hours; and 12% have 11 hours or more.

“Even if you don’t have to come in to the ED, you can get calls in the middle of the night, and you may get paid very little, if anything,” said Robert Bitterman MD, JD, an emergency physician and attorney in Harbor Springs, Mich.

And responding to the calls is not optional. Dr. Bitterman said if on-call physicians don’t perform their duties, they could lose their hospital privileges, be fined by the federal government, or be sued for malpractice.

On-call activities are regulated by the federal Emergency Medical Treatment and Active Labor Act (EMTALA). Dr. Bitterman said it’s rare for the federal government to prosecute on-call physicians for violating EMTALA. Instead, it’s more likely that the hospital will be fined for EMTALA violations committed by on-call physicians.

However, the hospital passes the on-call obligation on to individual physicians through medical staff bylaws. Physicians who violate the bylaws may have their privileges restricted or removed, Dr. Bitterman said. Physicians could also be sued for malpractice, even if they never treated the patient, he added.
 

After-hours call duty in physicians’ practices

A very different type of call duty is having to respond to calls from one’s own patients after regular hours. Unlike doctors on ED call, who usually deal with patients they have never met, these physicians deal with their established patients or those of a colleague in their practice.

Courts have established that physicians have to provide an answering service or other means for their patients to contact them after hours, and the doctor must respond to these calls in a timely manner.

In a 2015 Louisiana ruling, a cardiologist was found liable for malpractice because he didn’t respond to an after-hours call from his patient. The patient tried several times to contact the cardiologist but got no reply.

Physicians may also be responsible if their answering service does not send critical messages to them immediately, if it fails to make appropriate documentation, or if it sends inaccurate data to the doctor.
 

Cases when on-call doctors didn’t respond

The Office of the Inspector General (OIG) of the U.S. Health and Human Services Administration oversees federal EMTALA violations and regularly reports them.

In 2018, the OIG fined a hospital in Waterloo, Iowa, $90,000 when an on-call cardiologist failed to implant a pacemaker for an ED patient. According to the OIG’s report, the patient arrived at the hospital with heart problems. Reached by phone, the cardiologist directed the ED physician to begin transcutaneous pacing but asked that the patient be transferred to another hospital for placement of the pacemaker. The patient died after transfer.

The OIG found that the original cardiologist could have placed the pacemaker, but, as often happens, it only fined the hospital, not the on-call physician for the EMTALA violation.

EMTALA requires that hospitals provide on-call specialists to assist emergency physicians with care of patients who arrive in the ED. In specialties for which there are few doctors to choose from, the on-call specialist may be on duty every third night and every third weekend. This can be daunting, especially for specialists who’ve had a grueling day of work.

Occasionally, on-call physicians, fearful they could make a medical error, request that the patient be transferred to another hospital for treatment. This is what a neurosurgeon who was on call at a Topeka, Kan., hospital did in 2001. Transferred to another hospital, the patient underwent an operation but lost sensation in his lower extremities. The patient sued the on-call neurosurgeon for negligence.

During the trial, the on-call neurosurgeon testified that he was “feeling run-down because he had been an on-call physician every third night for more than 10 years.” He also said this was the first time he had refused to see a patient because of fatigue, and he had decided that the patient “would be better off at a trauma center that had a trauma team and a fresher surgeon.”

The neurosurgeon successfully defended the malpractice suit, but Dr. Bitterman said he might have lost had there not been some unusual circumstances in the case. The court ruled that the hospital had not clearly defined the duties of on-call physicians, and the lawsuit didn’t cite the neurosurgeon’s EMTALA duty.
 

On-call duties defined by EMTALA

EMTALA sets the overall rules for on-call duties, which each hospital is expected to fine-tune on the basis of its own particular circumstances. Here are some of those rules, issued by the Centers for Medicare & Medicaid Services and the OIG.

Only an individual physician can be on call. The hospital’s on-call schedule cannot name a physician practice.

Call applies to all ED patients. Physicians cannot limit their on-call responsibilities to their own patients, to patients in their insurance network, or to paying patients.

There may be some gaps in the call schedule. The OIG is not specific as to how many gaps are allowed, said Nick Healey, an attorney in Cheyenne, Wyo., who has written about on-call duties. Among other things, adequate coverage depends on the number of available physicians and the demand for their services. Mr. Healey added that states may require more extensive availability of on-call physicians at high-level trauma centers.

Hospitals must have made arrangements for transfer. Whenever there is a gap in the schedule, hospitals need to have a designated hospital to send the patient to. Hospitals that unnecessarily transfer patients will be penalized.

The ED physician calls the shots. The emergency physician handling the case decides if the on-call doctor has to come in and treat the patient firsthand.

The on-call physician may delegate the work to others. On-call physicians may designate a nurse practitioner or physician assistant, but the on-call physician is ultimately responsible. The ED doctor may require the physician to come in anyway, according to Todd B. Taylor, MD, an emergency physician in Phoenix, who has written about on-call duties. Dr. Bitterman noted that the physician may designate a colleague to take their call, but the substitute has to have privileges at the hospital.

Physicians may do their own work while on call. Physicians can perform elective surgery while on call, provided they have made arrangements if they then become unavailable for duty, Dr. Taylor said. He added that physicians can also have simultaneous call at other hospitals, provided they make arrangements.
 

The hospital fine-tunes call obligations

The hospital is expected to further define the federal rules. For instance, the CMS says physicians should respond to calls within a “reasonable period of time” and requires hospitals to specify response times, which may be 15-30 minutes for responding to phone calls and traveling to the ED, Dr. Bitterman said.

The CMS says older physicians can be exempted from call. The hospital determines the age at which physicians can be exempted. “Hospitals typically exempt physicians over age 65 or 70, or when they have certain medical conditions,” said Lowell Brown, a Los Angeles attorney who deals with on-call duties.

The hospital also sets the call schedule, which may result in uncovered periods in specialties in which there are few physicians to draw from, according to Mr. Healey. He said many hospitals still use a simple rule of thumb, even though it has been dismissed by the CMS. Under this so-called “rule of three,” hospitals that have three doctors or fewer in a specialty do not have to provide constant call coverage.

On-call rules are part of the medical staff bylaws, and they have to be approved by the medical staff. This may require delicate negotiations between the staff’s leadership and administrators, Dr. Bitterman said.

It is often up to the emergency physician on duty to enforce the hospital’s on-call rules, Dr. Taylor said. “If the ED physician is having trouble, he or she may contact the on-call physician’s department chairman or, if necessary, the chief of the medical staff and ask that person to deal with the physician,” Dr. Taylor said.

The ED physician has to determine whether the patient needs to be transferred to another hospital. Dr. Taylor said the ED physician must fill out a transfer form and obtain consent from the receiving hospital.

If a patient has to be transferred because an on-call physician failed to appear, the originating hospital has to report this to the CMS, and the physician and the hospital can be cited for an inappropriate transfer and fined, Mr. Brown said. “The possibility of being identified in this way should be a powerful incentive to accept call duty,” he added.
 

Malpractice exposure of on-call physicians

When on-call doctors provide medical advice regarding an ED patient, that advice may be subject to malpractice litigation, Dr. Taylor said. “Even if you only give the ED doctor advice over the phone, that may establish a patient-physician relationship and a duty that patient can cite in a malpractice case,” he noted.

Refusing to take call may also be grounds for a malpractice lawsuit, Dr. Bitterman said. Refusing to see a patient would not be considered medical negligence, he continued, because no medical decision is made. Rather, it involves general negligence, which occurs when physicians fail to carry out duties expected of them.

Dr. Bitterman cited a 2006 malpractice judgment in which an on-call neurosurgeon in Missouri was found to be generally negligent. The neurosurgeon had arranged for a colleague in his practice to take his call, but the colleague did not have privileges at the hospital.

A patient with a brain bleed came in and the substitute was on duty. The patient had to be transferred to another hospital, where the patient died. The court ordered that the on-call doctor and the originating hospital had to split a fine of $400,800.
 

On-call physicians can be charged with abandonment

Dr. Bitterman said that if on-call physicians do not provide expected follow-up treatment for an ED patient, they could be charged with abandonment, which is a matter of state law and involves filing a malpractice lawsuit.

Abandonment involves unilaterally terminating the patient relationship without providing notice. There must be an established relationship, which, in the case of call, is formed when the doctor comes to the ED to examine or admit the patient, Dr. Bitterman said. He added that the on-call doctor’s obligation applies only to the medical condition the patient came in for.

Even when an on-call doctor does not see a patient, a relationship can be established if the hospital requires its on-call doctors to make follow-up visits for ED patients, Dr. Taylor said. At some hospitals, he said, on-call doctors have blanket agreements to provide follow-up care in return for not having to arrive in the middle of the night during the ED visit.

Dr. Taylor gave an example of the on-call doctor’s obligation: “The ED doctor puts a splint on the patient’s ankle fracture, and the orthopedic surgeon on call agrees to follow up with the patient within the next few days. If the orthopedic surgeon refuses to follow up without making a reasonable accommodation, it may become an issue of patient abandonment.”
 

Now everyone has a good grasp of the rules

Fifteen years ago, many doctors were in open revolt against on-call duties, but they are more accepting now and understand the rules better, Mr. Healey said.

“Many hospitals have begun paying some specialists for call and designating hospitalists and surgicalists to do at least some of the work that used to be expected of on-call doctors,” he said.

According to Dr. Taylor, today’s on-call doctors often have less to do than in the past. “For example,” he said, “the hospitalist may admit an orthopedic patient at night, and then the orthopedic surgeon does the operation the next day. We’ve had EMTALA for 36 years now, and hospitals and doctors know how call works.”

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

Taking call is one of the more challenging - and annoying - aspects of the job for many physicians. Calls may wake them up in the middle of the night and can interfere with their at-home activities. In Medscape’s Employed Physicians Report, 37% of respondents said they have from 1 to 5 hours of call per month; 19% said they have 6 to 10 hours; and 12% have 11 hours or more.

“Even if you don’t have to come in to the ED, you can get calls in the middle of the night, and you may get paid very little, if anything,” said Robert Bitterman MD, JD, an emergency physician and attorney in Harbor Springs, Mich.

And responding to the calls is not optional. Dr. Bitterman said if on-call physicians don’t perform their duties, they could lose their hospital privileges, be fined by the federal government, or be sued for malpractice.

On-call activities are regulated by the federal Emergency Medical Treatment and Active Labor Act (EMTALA). Dr. Bitterman said it’s rare for the federal government to prosecute on-call physicians for violating EMTALA. Instead, it’s more likely that the hospital will be fined for EMTALA violations committed by on-call physicians.

However, the hospital passes the on-call obligation on to individual physicians through medical staff bylaws. Physicians who violate the bylaws may have their privileges restricted or removed, Dr. Bitterman said. Physicians could also be sued for malpractice, even if they never treated the patient, he added.
 

After-hours call duty in physicians’ practices

A very different type of call duty is having to respond to calls from one’s own patients after regular hours. Unlike doctors on ED call, who usually deal with patients they have never met, these physicians deal with their established patients or those of a colleague in their practice.

Courts have established that physicians have to provide an answering service or other means for their patients to contact them after hours, and the doctor must respond to these calls in a timely manner.

In a 2015 Louisiana ruling, a cardiologist was found liable for malpractice because he didn’t respond to an after-hours call from his patient. The patient tried several times to contact the cardiologist but got no reply.

Physicians may also be responsible if their answering service does not send critical messages to them immediately, if it fails to make appropriate documentation, or if it sends inaccurate data to the doctor.
 

Cases when on-call doctors didn’t respond

The Office of the Inspector General (OIG) of the U.S. Health and Human Services Administration oversees federal EMTALA violations and regularly reports them.

In 2018, the OIG fined a hospital in Waterloo, Iowa, $90,000 when an on-call cardiologist failed to implant a pacemaker for an ED patient. According to the OIG’s report, the patient arrived at the hospital with heart problems. Reached by phone, the cardiologist directed the ED physician to begin transcutaneous pacing but asked that the patient be transferred to another hospital for placement of the pacemaker. The patient died after transfer.

The OIG found that the original cardiologist could have placed the pacemaker, but, as often happens, it only fined the hospital, not the on-call physician for the EMTALA violation.

EMTALA requires that hospitals provide on-call specialists to assist emergency physicians with care of patients who arrive in the ED. In specialties for which there are few doctors to choose from, the on-call specialist may be on duty every third night and every third weekend. This can be daunting, especially for specialists who’ve had a grueling day of work.

Occasionally, on-call physicians, fearful they could make a medical error, request that the patient be transferred to another hospital for treatment. This is what a neurosurgeon who was on call at a Topeka, Kan., hospital did in 2001. Transferred to another hospital, the patient underwent an operation but lost sensation in his lower extremities. The patient sued the on-call neurosurgeon for negligence.

During the trial, the on-call neurosurgeon testified that he was “feeling run-down because he had been an on-call physician every third night for more than 10 years.” He also said this was the first time he had refused to see a patient because of fatigue, and he had decided that the patient “would be better off at a trauma center that had a trauma team and a fresher surgeon.”

The neurosurgeon successfully defended the malpractice suit, but Dr. Bitterman said he might have lost had there not been some unusual circumstances in the case. The court ruled that the hospital had not clearly defined the duties of on-call physicians, and the lawsuit didn’t cite the neurosurgeon’s EMTALA duty.
 

On-call duties defined by EMTALA

EMTALA sets the overall rules for on-call duties, which each hospital is expected to fine-tune on the basis of its own particular circumstances. Here are some of those rules, issued by the Centers for Medicare & Medicaid Services and the OIG.

Only an individual physician can be on call. The hospital’s on-call schedule cannot name a physician practice.

Call applies to all ED patients. Physicians cannot limit their on-call responsibilities to their own patients, to patients in their insurance network, or to paying patients.

There may be some gaps in the call schedule. The OIG is not specific as to how many gaps are allowed, said Nick Healey, an attorney in Cheyenne, Wyo., who has written about on-call duties. Among other things, adequate coverage depends on the number of available physicians and the demand for their services. Mr. Healey added that states may require more extensive availability of on-call physicians at high-level trauma centers.

Hospitals must have made arrangements for transfer. Whenever there is a gap in the schedule, hospitals need to have a designated hospital to send the patient to. Hospitals that unnecessarily transfer patients will be penalized.

The ED physician calls the shots. The emergency physician handling the case decides if the on-call doctor has to come in and treat the patient firsthand.

The on-call physician may delegate the work to others. On-call physicians may designate a nurse practitioner or physician assistant, but the on-call physician is ultimately responsible. The ED doctor may require the physician to come in anyway, according to Todd B. Taylor, MD, an emergency physician in Phoenix, who has written about on-call duties. Dr. Bitterman noted that the physician may designate a colleague to take their call, but the substitute has to have privileges at the hospital.

Physicians may do their own work while on call. Physicians can perform elective surgery while on call, provided they have made arrangements if they then become unavailable for duty, Dr. Taylor said. He added that physicians can also have simultaneous call at other hospitals, provided they make arrangements.
 

The hospital fine-tunes call obligations

The hospital is expected to further define the federal rules. For instance, the CMS says physicians should respond to calls within a “reasonable period of time” and requires hospitals to specify response times, which may be 15-30 minutes for responding to phone calls and traveling to the ED, Dr. Bitterman said.

The CMS says older physicians can be exempted from call. The hospital determines the age at which physicians can be exempted. “Hospitals typically exempt physicians over age 65 or 70, or when they have certain medical conditions,” said Lowell Brown, a Los Angeles attorney who deals with on-call duties.

The hospital also sets the call schedule, which may result in uncovered periods in specialties in which there are few physicians to draw from, according to Mr. Healey. He said many hospitals still use a simple rule of thumb, even though it has been dismissed by the CMS. Under this so-called “rule of three,” hospitals that have three doctors or fewer in a specialty do not have to provide constant call coverage.

On-call rules are part of the medical staff bylaws, and they have to be approved by the medical staff. This may require delicate negotiations between the staff’s leadership and administrators, Dr. Bitterman said.

It is often up to the emergency physician on duty to enforce the hospital’s on-call rules, Dr. Taylor said. “If the ED physician is having trouble, he or she may contact the on-call physician’s department chairman or, if necessary, the chief of the medical staff and ask that person to deal with the physician,” Dr. Taylor said.

The ED physician has to determine whether the patient needs to be transferred to another hospital. Dr. Taylor said the ED physician must fill out a transfer form and obtain consent from the receiving hospital.

If a patient has to be transferred because an on-call physician failed to appear, the originating hospital has to report this to the CMS, and the physician and the hospital can be cited for an inappropriate transfer and fined, Mr. Brown said. “The possibility of being identified in this way should be a powerful incentive to accept call duty,” he added.
 

Malpractice exposure of on-call physicians

When on-call doctors provide medical advice regarding an ED patient, that advice may be subject to malpractice litigation, Dr. Taylor said. “Even if you only give the ED doctor advice over the phone, that may establish a patient-physician relationship and a duty that patient can cite in a malpractice case,” he noted.

Refusing to take call may also be grounds for a malpractice lawsuit, Dr. Bitterman said. Refusing to see a patient would not be considered medical negligence, he continued, because no medical decision is made. Rather, it involves general negligence, which occurs when physicians fail to carry out duties expected of them.

Dr. Bitterman cited a 2006 malpractice judgment in which an on-call neurosurgeon in Missouri was found to be generally negligent. The neurosurgeon had arranged for a colleague in his practice to take his call, but the colleague did not have privileges at the hospital.

A patient with a brain bleed came in and the substitute was on duty. The patient had to be transferred to another hospital, where the patient died. The court ordered that the on-call doctor and the originating hospital had to split a fine of $400,800.
 

On-call physicians can be charged with abandonment

Dr. Bitterman said that if on-call physicians do not provide expected follow-up treatment for an ED patient, they could be charged with abandonment, which is a matter of state law and involves filing a malpractice lawsuit.

Abandonment involves unilaterally terminating the patient relationship without providing notice. There must be an established relationship, which, in the case of call, is formed when the doctor comes to the ED to examine or admit the patient, Dr. Bitterman said. He added that the on-call doctor’s obligation applies only to the medical condition the patient came in for.

Even when an on-call doctor does not see a patient, a relationship can be established if the hospital requires its on-call doctors to make follow-up visits for ED patients, Dr. Taylor said. At some hospitals, he said, on-call doctors have blanket agreements to provide follow-up care in return for not having to arrive in the middle of the night during the ED visit.

Dr. Taylor gave an example of the on-call doctor’s obligation: “The ED doctor puts a splint on the patient’s ankle fracture, and the orthopedic surgeon on call agrees to follow up with the patient within the next few days. If the orthopedic surgeon refuses to follow up without making a reasonable accommodation, it may become an issue of patient abandonment.”
 

Now everyone has a good grasp of the rules

Fifteen years ago, many doctors were in open revolt against on-call duties, but they are more accepting now and understand the rules better, Mr. Healey said.

“Many hospitals have begun paying some specialists for call and designating hospitalists and surgicalists to do at least some of the work that used to be expected of on-call doctors,” he said.

According to Dr. Taylor, today’s on-call doctors often have less to do than in the past. “For example,” he said, “the hospitalist may admit an orthopedic patient at night, and then the orthopedic surgeon does the operation the next day. We’ve had EMTALA for 36 years now, and hospitals and doctors know how call works.”

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

As an undergraduate student at Northeastern University in Boston, Meghan Chin spent her summers working for a day program in Rhode Island. Her charges were adults with various forms of intellectual and developmental disabilities (IDD).

“I was very much a caretaker,” Ms. Chin, now 29, said. “It was everything from helping them get dressed in the morning to getting them to medical appointments.”

During one such visit Ms. Chin got a lesson about how health care looks from the viewpoint of someone with an IDD.

The patient was a woman in her 60s and she was having gastrointestinal issues; symptoms she could have articulated, if asked. “She was perfectly capable of telling a clinician where it hurt, how long she had experienced the problem, and what she had done or not done to alleviate it,” Ms. Chin said.

And of comprehending a response. But she was not given the opportunity.

“She would explain what was going on to the clinician,” Ms. Chin recalled. “And the clinician would turn to me and answer. It was this weird three-way conversation – as if she wasn’t even there in the room with us.”

Ms. Chin was incensed at the rude and disrespectful way the patient had been treated. But her charge didn’t seem upset or surprised. Just resigned. “Sadly, she had become used to this,” Ms. Chin said. 

For the young aide, however, the experience was searing. “It didn’t seem right to me,” Ms. Chin said. “That’s why, when I went to medical school, I knew I wanted to do better for this population.”

Serendipity led her to Georgetown University, Washington, where she met Kim Bullock, MD, one of the country’s leading advocates for improved health care delivery to those with IDDs.

Dr. Bullock, an associate professor of family medicine, seeks to create better training and educational opportunities for medical students who will likely encounter patients with these disabilities in their practices.

When Dr. Bullock heard Ms. Chin’s story about the patient being ignored, she was not surprised.

“This is not an unusual or unique situation,” said Dr. Bullock, who is also director of Georgetown’s community health division and a faculty member of the university’s Center for Excellence for Developmental Disabilities. “In fact, it’s quite common and is part of what spurred my own interest in educating pre-med and medical students about effective communication techniques, particularly when addressing neurodiverse patients.”

More than 13% of Americans, or roughly 44 million people, have some form of disability, according to the National Institute on Disability at the University of New Hampshire, a figure that does not include those who are institutionalized. The Centers for Disease Control and Prevention estimates that 17% of children aged 3-17 years have a developmental disability.

Even so, many physicians feel ill-prepared to care for disabled patients. A survey of physicians, published in the journal Health Affairs, found that some lacked the resources and training to properly care for patients with disabilities, or that they struggled to coordinate care for such individuals. Some said they did not know which types of accessible equipment, like adjustable tables and chair scales, were needed or how to use them. And some said they actively try to avoid treating patients with disabilities.
 

Don’t assume

The first step at correcting the problem, Dr. Bullock said, is to not assume that all IDD patients are incapable of communicating. By talking not to the patient but to their caregiver or spouse or child, as the clinician did with Ms. Chin years ago, “we are taking away their agency, their autonomy to speak for and about themselves.”

Change involves altering physicians’ attitudes and assumptions toward this population, through education. But how?

“The medical school curriculum is tight as it is,” Dr. Bullock acknowledged. “There’s a lot of things students have to learn. People wonder: where we will add this?”

Her suggestion: Incorporate IDD all along the way, through programs or experiences that will enable medical students to see such patients “not as something separate, but as people that have special needs just as other populations have.”

Case in point: Operation House Call, a program in Massachusetts designed to support young health care professionals, by building “confidence, interest, and sensitivity” toward individuals with IDD.

Eight medical and allied health schools, including those at Harvard Medical School and Yale School of Nursing, participate in the program, the centerpiece of which is time spent by teams of medical students in the homes of families with neurodiverse members. “It’s transformational,” said Susan Feeney, DNP, NP-C, director of adult gerontology and family nurse practitioner programs at the graduate school of nursing at the University of Massachusetts, Worcester. “They spend a few hours at the homes of these families, have this interaction with them, and journal about their experiences.”

Dr. Feeney described as “transformational” the experience of the students after getting to know these families. “They all come back profoundly changed,” she told this news organization. “As a medical or health care professional, you meet people in an artificial environment of the clinic and hospital. Here, they become human, like you. It takes the stigma away.”

One area of medicine in which this is an exception is pediatrics, where interaction with children with IDD and their families is common – and close. “They’re going to be much more attuned to this,” Dr. Feeney said. “The problem is primary care or internal medicine. Once these children get into their mid and later 20s, and they need a practitioner to talk to about adult concerns.”

And with adulthood come other medical needs, as the physical demands of age fall no less heavily on individuals with IDDs than those without. For example: “Neurodiverse people get pregnant,” Dr. Bullock said. They also can get heart disease as they age; or require the care of a rheumatologist, a neurologist, an orthopedic surgeon, or any other medical specialty.

Generation gap

Fortunately, the next generation of physicians may be more open to this more inclusionary approach toward a widely misunderstood population.

Like Ms. Chin, Sarah Bdeir had experience with this population prior to beginning her training in medicine. She had volunteered at a school for people with IDD.

“It was one of the best experiences I’ve ever had,” Ms. Bdeir, now 23 and a first-year medical student at Wayne State University, Detroit, said. She found that the neurodiverse individuals she worked with had as many abilities as disabilities. “They are capable of learning, but they do it differently,” she said. “You have to adjust to the way they learn. And you have to step out of your own box.”

Ms. Bdeir also heard about Dr. Bullock’s work and is assisting her in a research project on how to better improve nutritional education for people with IDDs. And although she said it may take time for curriculum boards at medical schools to integrate this kind of training into their programs, she believes they will, in part because the rising cohort of medical students today have an eagerness to engage with and learn more about IDD patients.

As does Ms. Chin.

“When I talk to my peers about this, they’re very receptive,” Ms. Chin said. “They want to learn how to better support the IDD population. And they will learn. I believe in my generation of future doctors.”

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

As an undergraduate student at Northeastern University in Boston, Meghan Chin spent her summers working for a day program in Rhode Island. Her charges were adults with various forms of intellectual and developmental disabilities (IDD).

“I was very much a caretaker,” Ms. Chin, now 29, said. “It was everything from helping them get dressed in the morning to getting them to medical appointments.”

During one such visit Ms. Chin got a lesson about how health care looks from the viewpoint of someone with an IDD.

The patient was a woman in her 60s and she was having gastrointestinal issues; symptoms she could have articulated, if asked. “She was perfectly capable of telling a clinician where it hurt, how long she had experienced the problem, and what she had done or not done to alleviate it,” Ms. Chin said.

And of comprehending a response. But she was not given the opportunity.

“She would explain what was going on to the clinician,” Ms. Chin recalled. “And the clinician would turn to me and answer. It was this weird three-way conversation – as if she wasn’t even there in the room with us.”

Ms. Chin was incensed at the rude and disrespectful way the patient had been treated. But her charge didn’t seem upset or surprised. Just resigned. “Sadly, she had become used to this,” Ms. Chin said. 

For the young aide, however, the experience was searing. “It didn’t seem right to me,” Ms. Chin said. “That’s why, when I went to medical school, I knew I wanted to do better for this population.”

Serendipity led her to Georgetown University, Washington, where she met Kim Bullock, MD, one of the country’s leading advocates for improved health care delivery to those with IDDs.

Dr. Bullock, an associate professor of family medicine, seeks to create better training and educational opportunities for medical students who will likely encounter patients with these disabilities in their practices.

When Dr. Bullock heard Ms. Chin’s story about the patient being ignored, she was not surprised.

“This is not an unusual or unique situation,” said Dr. Bullock, who is also director of Georgetown’s community health division and a faculty member of the university’s Center for Excellence for Developmental Disabilities. “In fact, it’s quite common and is part of what spurred my own interest in educating pre-med and medical students about effective communication techniques, particularly when addressing neurodiverse patients.”

More than 13% of Americans, or roughly 44 million people, have some form of disability, according to the National Institute on Disability at the University of New Hampshire, a figure that does not include those who are institutionalized. The Centers for Disease Control and Prevention estimates that 17% of children aged 3-17 years have a developmental disability.

Even so, many physicians feel ill-prepared to care for disabled patients. A survey of physicians, published in the journal Health Affairs, found that some lacked the resources and training to properly care for patients with disabilities, or that they struggled to coordinate care for such individuals. Some said they did not know which types of accessible equipment, like adjustable tables and chair scales, were needed or how to use them. And some said they actively try to avoid treating patients with disabilities.
 

Don’t assume

The first step at correcting the problem, Dr. Bullock said, is to not assume that all IDD patients are incapable of communicating. By talking not to the patient but to their caregiver or spouse or child, as the clinician did with Ms. Chin years ago, “we are taking away their agency, their autonomy to speak for and about themselves.”

Change involves altering physicians’ attitudes and assumptions toward this population, through education. But how?

“The medical school curriculum is tight as it is,” Dr. Bullock acknowledged. “There’s a lot of things students have to learn. People wonder: where we will add this?”

Her suggestion: Incorporate IDD all along the way, through programs or experiences that will enable medical students to see such patients “not as something separate, but as people that have special needs just as other populations have.”

Case in point: Operation House Call, a program in Massachusetts designed to support young health care professionals, by building “confidence, interest, and sensitivity” toward individuals with IDD.

Eight medical and allied health schools, including those at Harvard Medical School and Yale School of Nursing, participate in the program, the centerpiece of which is time spent by teams of medical students in the homes of families with neurodiverse members. “It’s transformational,” said Susan Feeney, DNP, NP-C, director of adult gerontology and family nurse practitioner programs at the graduate school of nursing at the University of Massachusetts, Worcester. “They spend a few hours at the homes of these families, have this interaction with them, and journal about their experiences.”

Dr. Feeney described as “transformational” the experience of the students after getting to know these families. “They all come back profoundly changed,” she told this news organization. “As a medical or health care professional, you meet people in an artificial environment of the clinic and hospital. Here, they become human, like you. It takes the stigma away.”

One area of medicine in which this is an exception is pediatrics, where interaction with children with IDD and their families is common – and close. “They’re going to be much more attuned to this,” Dr. Feeney said. “The problem is primary care or internal medicine. Once these children get into their mid and later 20s, and they need a practitioner to talk to about adult concerns.”

And with adulthood come other medical needs, as the physical demands of age fall no less heavily on individuals with IDDs than those without. For example: “Neurodiverse people get pregnant,” Dr. Bullock said. They also can get heart disease as they age; or require the care of a rheumatologist, a neurologist, an orthopedic surgeon, or any other medical specialty.

Generation gap

Fortunately, the next generation of physicians may be more open to this more inclusionary approach toward a widely misunderstood population.

Like Ms. Chin, Sarah Bdeir had experience with this population prior to beginning her training in medicine. She had volunteered at a school for people with IDD.

“It was one of the best experiences I’ve ever had,” Ms. Bdeir, now 23 and a first-year medical student at Wayne State University, Detroit, said. She found that the neurodiverse individuals she worked with had as many abilities as disabilities. “They are capable of learning, but they do it differently,” she said. “You have to adjust to the way they learn. And you have to step out of your own box.”

Ms. Bdeir also heard about Dr. Bullock’s work and is assisting her in a research project on how to better improve nutritional education for people with IDDs. And although she said it may take time for curriculum boards at medical schools to integrate this kind of training into their programs, she believes they will, in part because the rising cohort of medical students today have an eagerness to engage with and learn more about IDD patients.

As does Ms. Chin.

“When I talk to my peers about this, they’re very receptive,” Ms. Chin said. “They want to learn how to better support the IDD population. And they will learn. I believe in my generation of future doctors.”

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

As an undergraduate student at Northeastern University in Boston, Meghan Chin spent her summers working for a day program in Rhode Island. Her charges were adults with various forms of intellectual and developmental disabilities (IDD).

“I was very much a caretaker,” Ms. Chin, now 29, said. “It was everything from helping them get dressed in the morning to getting them to medical appointments.”

During one such visit Ms. Chin got a lesson about how health care looks from the viewpoint of someone with an IDD.

The patient was a woman in her 60s and she was having gastrointestinal issues; symptoms she could have articulated, if asked. “She was perfectly capable of telling a clinician where it hurt, how long she had experienced the problem, and what she had done or not done to alleviate it,” Ms. Chin said.

And of comprehending a response. But she was not given the opportunity.

“She would explain what was going on to the clinician,” Ms. Chin recalled. “And the clinician would turn to me and answer. It was this weird three-way conversation – as if she wasn’t even there in the room with us.”

Ms. Chin was incensed at the rude and disrespectful way the patient had been treated. But her charge didn’t seem upset or surprised. Just resigned. “Sadly, she had become used to this,” Ms. Chin said. 

For the young aide, however, the experience was searing. “It didn’t seem right to me,” Ms. Chin said. “That’s why, when I went to medical school, I knew I wanted to do better for this population.”

Serendipity led her to Georgetown University, Washington, where she met Kim Bullock, MD, one of the country’s leading advocates for improved health care delivery to those with IDDs.

Dr. Bullock, an associate professor of family medicine, seeks to create better training and educational opportunities for medical students who will likely encounter patients with these disabilities in their practices.

When Dr. Bullock heard Ms. Chin’s story about the patient being ignored, she was not surprised.

“This is not an unusual or unique situation,” said Dr. Bullock, who is also director of Georgetown’s community health division and a faculty member of the university’s Center for Excellence for Developmental Disabilities. “In fact, it’s quite common and is part of what spurred my own interest in educating pre-med and medical students about effective communication techniques, particularly when addressing neurodiverse patients.”

More than 13% of Americans, or roughly 44 million people, have some form of disability, according to the National Institute on Disability at the University of New Hampshire, a figure that does not include those who are institutionalized. The Centers for Disease Control and Prevention estimates that 17% of children aged 3-17 years have a developmental disability.

Even so, many physicians feel ill-prepared to care for disabled patients. A survey of physicians, published in the journal Health Affairs, found that some lacked the resources and training to properly care for patients with disabilities, or that they struggled to coordinate care for such individuals. Some said they did not know which types of accessible equipment, like adjustable tables and chair scales, were needed or how to use them. And some said they actively try to avoid treating patients with disabilities.
 

Don’t assume

The first step at correcting the problem, Dr. Bullock said, is to not assume that all IDD patients are incapable of communicating. By talking not to the patient but to their caregiver or spouse or child, as the clinician did with Ms. Chin years ago, “we are taking away their agency, their autonomy to speak for and about themselves.”

Change involves altering physicians’ attitudes and assumptions toward this population, through education. But how?

“The medical school curriculum is tight as it is,” Dr. Bullock acknowledged. “There’s a lot of things students have to learn. People wonder: where we will add this?”

Her suggestion: Incorporate IDD all along the way, through programs or experiences that will enable medical students to see such patients “not as something separate, but as people that have special needs just as other populations have.”

Case in point: Operation House Call, a program in Massachusetts designed to support young health care professionals, by building “confidence, interest, and sensitivity” toward individuals with IDD.

Eight medical and allied health schools, including those at Harvard Medical School and Yale School of Nursing, participate in the program, the centerpiece of which is time spent by teams of medical students in the homes of families with neurodiverse members. “It’s transformational,” said Susan Feeney, DNP, NP-C, director of adult gerontology and family nurse practitioner programs at the graduate school of nursing at the University of Massachusetts, Worcester. “They spend a few hours at the homes of these families, have this interaction with them, and journal about their experiences.”

Dr. Feeney described as “transformational” the experience of the students after getting to know these families. “They all come back profoundly changed,” she told this news organization. “As a medical or health care professional, you meet people in an artificial environment of the clinic and hospital. Here, they become human, like you. It takes the stigma away.”

One area of medicine in which this is an exception is pediatrics, where interaction with children with IDD and their families is common – and close. “They’re going to be much more attuned to this,” Dr. Feeney said. “The problem is primary care or internal medicine. Once these children get into their mid and later 20s, and they need a practitioner to talk to about adult concerns.”

And with adulthood come other medical needs, as the physical demands of age fall no less heavily on individuals with IDDs than those without. For example: “Neurodiverse people get pregnant,” Dr. Bullock said. They also can get heart disease as they age; or require the care of a rheumatologist, a neurologist, an orthopedic surgeon, or any other medical specialty.

Generation gap

Fortunately, the next generation of physicians may be more open to this more inclusionary approach toward a widely misunderstood population.

Like Ms. Chin, Sarah Bdeir had experience with this population prior to beginning her training in medicine. She had volunteered at a school for people with IDD.

“It was one of the best experiences I’ve ever had,” Ms. Bdeir, now 23 and a first-year medical student at Wayne State University, Detroit, said. She found that the neurodiverse individuals she worked with had as many abilities as disabilities. “They are capable of learning, but they do it differently,” she said. “You have to adjust to the way they learn. And you have to step out of your own box.”

Ms. Bdeir also heard about Dr. Bullock’s work and is assisting her in a research project on how to better improve nutritional education for people with IDDs. And although she said it may take time for curriculum boards at medical schools to integrate this kind of training into their programs, she believes they will, in part because the rising cohort of medical students today have an eagerness to engage with and learn more about IDD patients.

As does Ms. Chin.

“When I talk to my peers about this, they’re very receptive,” Ms. Chin said. “They want to learn how to better support the IDD population. And they will learn. I believe in my generation of future doctors.”

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

When a consumer uses a health plan provider directory to look up a physician, there’s a high probability that the entry for that doctor is incomplete or inaccurate. The Centers for Medicare & Medicaid Services would like to change that by creating a National Directory of Healthcare Providers and Services, which the agency believes would be more valuable to consumers.

In asking for public comments on whether and how it should establish the directory, CMS argues that this data repository would help patients locate physicians and could help with care coordination, health information exchange, and public health data reporting.

However, it’s not clear that such a directory would be any better than current insurance company listings or that people would use it. But a national directory could benefit physician practices by reducing their administrative work, according to observers.

In requesting public comment on the proposed national directory, CMS explains that provider organizations face “redundant and burdensome reporting requirements to multiple databases.” The directory could greatly reduce this challenge by requiring health care organizations to report provider information to a single database. Currently, physician practices have to submit these data to an average of 20 payers each, according to CMS.

“Right now, [physicians are] inundated with requests, and it takes a lot of time to update this stuff,” said David Zetter, a practice management consultant in Mechanicsburg, Pa.. “If there were one national repository of this information, that would be a good move.”

CMS envisions the National Directory as a central hub from which payers could obtain the latest provider data, which would be updated through a standardized application programming interface (API). Consequently, the insurers would no longer need to have providers submit this information to them separately.

CMS is soliciting input on what should be included in the directory. It notes that in addition to contact information, insurer directories also include a physicians’ specialties, health plan affiliations, and whether they accept new patients.

CMS’ 60-day public comment period ends Dec. 6. After that, the agency will decide what steps to take if it is decided that CMS has the legal authority to create the directory.
 

Terrible track record

In its annual reviews of health plan directories, CMS found that, from 2017 to 2022, only 47% of provider entries were complete. Only 73% of the providers could be matched to published directories. And only 28% of the provider names, addresses, and specialties in the directories matched those in the National Provider Identifier (NPI) registry.

Many of the mistakes in provider directories stem from errors made by practice staff, who have many other duties besides updating directory data. Yet an astonishing amount of time and effort is devoted to this task. A 2019 survey found that physician practices spend $2.76 billion annually on directory maintenance, or nearly $1000 per month per practice, on average.

The Council for Affordable Quality Healthcare, which conducted the survey, estimated that placing all directory data collection on a single platform could save the average practice $4,746 per year. For all practices in the United States, that works out to about $1.1 billion annually, CAQH said.
 

Pros and cons of national directory

For all the money spent on maintaining provider directories, consumers don’t use them very much. According to a 2021 Press Ganey survey, fewer than 5% of consumers seeking a primary care doctor get their information from an insurer or a benefits manager. About half search the internet first, and 24% seek a referral from a physician.

A national provider directory would be useful only if it were done right, Mr. Zetter said. Citing the inaccuracy and incompleteness of health plan directories, he said it was likely that a national directory would have similar problems. Data entered by practice staff would have to be automatically validated, perhaps through use of some kind of AI algorithm.
 

Effect on coordination of care

Mr. Zetter doubts the directory could improve care coordination, because primary care doctors usually refer patients to specialists they already know.

But Julia Adler-Milstein, PhD, professor of medicine and director of the Center for Clinical Informatics at the University of California, San Francisco, said that a national directory could improve communications among providers when patients select specialists outside of their primary care physician’s referral network.

“Especially if it’s not an established referral relationship, that’s where a national directory would be helpful, not only to locate the physicians but also to understand their preferences in how they’d like to receive information,” she said in an interview.

Dr. Adler-Milstein worries less than Mr. Zetter does about the challenge of ensuring the accuracy of data in the directory. She pointed out that the National Plan and Provider Enumeration System, which includes the NPI registry, has done a good job of validating provider name, address, and specialty information.

Dr. Adler-Milstein is more concerned about whether the proposed directory would address physician preferences as to how they wish to receive information. For example, while some physicians may prefer to be contacted directly, others may prefer or are required to communicate through their practices or health systems.
 

Efficiency in data exchange

The API used by the proposed directory would be based on the Fast Health Interoperability Resources standard that all electronic health record vendors must now include in their products. That raises the question of whether communications using contact information from the directory would be sent through a secure email system or through integrated EHR systems, Dr. Adler-Milstein said.

“I’m not sure whether the directory could support that [integration],” she said. “If it focuses on the concept of secure email exchange, that’s a relatively inefficient way of doing it,” because providers want clinical messages to pop up in their EHR workflow rather than their inboxes.

Nevertheless, Dr. Milstein-Adler added, the directory “would clearly take a lot of today’s manual work out of the system. I think organizations like UCSF would be very motivated to support the directory, knowing that people were going to a single source to find the updated information, including preferences in how we’d like people to communicate with us. There would be a lot of efficiency reasons for organizations to use this national directory.”

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

When a consumer uses a health plan provider directory to look up a physician, there’s a high probability that the entry for that doctor is incomplete or inaccurate. The Centers for Medicare & Medicaid Services would like to change that by creating a National Directory of Healthcare Providers and Services, which the agency believes would be more valuable to consumers.

In asking for public comments on whether and how it should establish the directory, CMS argues that this data repository would help patients locate physicians and could help with care coordination, health information exchange, and public health data reporting.

However, it’s not clear that such a directory would be any better than current insurance company listings or that people would use it. But a national directory could benefit physician practices by reducing their administrative work, according to observers.

In requesting public comment on the proposed national directory, CMS explains that provider organizations face “redundant and burdensome reporting requirements to multiple databases.” The directory could greatly reduce this challenge by requiring health care organizations to report provider information to a single database. Currently, physician practices have to submit these data to an average of 20 payers each, according to CMS.

“Right now, [physicians are] inundated with requests, and it takes a lot of time to update this stuff,” said David Zetter, a practice management consultant in Mechanicsburg, Pa.. “If there were one national repository of this information, that would be a good move.”

CMS envisions the National Directory as a central hub from which payers could obtain the latest provider data, which would be updated through a standardized application programming interface (API). Consequently, the insurers would no longer need to have providers submit this information to them separately.

CMS is soliciting input on what should be included in the directory. It notes that in addition to contact information, insurer directories also include a physicians’ specialties, health plan affiliations, and whether they accept new patients.

CMS’ 60-day public comment period ends Dec. 6. After that, the agency will decide what steps to take if it is decided that CMS has the legal authority to create the directory.
 

Terrible track record

In its annual reviews of health plan directories, CMS found that, from 2017 to 2022, only 47% of provider entries were complete. Only 73% of the providers could be matched to published directories. And only 28% of the provider names, addresses, and specialties in the directories matched those in the National Provider Identifier (NPI) registry.

Many of the mistakes in provider directories stem from errors made by practice staff, who have many other duties besides updating directory data. Yet an astonishing amount of time and effort is devoted to this task. A 2019 survey found that physician practices spend $2.76 billion annually on directory maintenance, or nearly $1000 per month per practice, on average.

The Council for Affordable Quality Healthcare, which conducted the survey, estimated that placing all directory data collection on a single platform could save the average practice $4,746 per year. For all practices in the United States, that works out to about $1.1 billion annually, CAQH said.
 

Pros and cons of national directory

For all the money spent on maintaining provider directories, consumers don’t use them very much. According to a 2021 Press Ganey survey, fewer than 5% of consumers seeking a primary care doctor get their information from an insurer or a benefits manager. About half search the internet first, and 24% seek a referral from a physician.

A national provider directory would be useful only if it were done right, Mr. Zetter said. Citing the inaccuracy and incompleteness of health plan directories, he said it was likely that a national directory would have similar problems. Data entered by practice staff would have to be automatically validated, perhaps through use of some kind of AI algorithm.
 

Effect on coordination of care

Mr. Zetter doubts the directory could improve care coordination, because primary care doctors usually refer patients to specialists they already know.

But Julia Adler-Milstein, PhD, professor of medicine and director of the Center for Clinical Informatics at the University of California, San Francisco, said that a national directory could improve communications among providers when patients select specialists outside of their primary care physician’s referral network.

“Especially if it’s not an established referral relationship, that’s where a national directory would be helpful, not only to locate the physicians but also to understand their preferences in how they’d like to receive information,” she said in an interview.

Dr. Adler-Milstein worries less than Mr. Zetter does about the challenge of ensuring the accuracy of data in the directory. She pointed out that the National Plan and Provider Enumeration System, which includes the NPI registry, has done a good job of validating provider name, address, and specialty information.

Dr. Adler-Milstein is more concerned about whether the proposed directory would address physician preferences as to how they wish to receive information. For example, while some physicians may prefer to be contacted directly, others may prefer or are required to communicate through their practices or health systems.
 

Efficiency in data exchange

The API used by the proposed directory would be based on the Fast Health Interoperability Resources standard that all electronic health record vendors must now include in their products. That raises the question of whether communications using contact information from the directory would be sent through a secure email system or through integrated EHR systems, Dr. Adler-Milstein said.

“I’m not sure whether the directory could support that [integration],” she said. “If it focuses on the concept of secure email exchange, that’s a relatively inefficient way of doing it,” because providers want clinical messages to pop up in their EHR workflow rather than their inboxes.

Nevertheless, Dr. Milstein-Adler added, the directory “would clearly take a lot of today’s manual work out of the system. I think organizations like UCSF would be very motivated to support the directory, knowing that people were going to a single source to find the updated information, including preferences in how we’d like people to communicate with us. There would be a lot of efficiency reasons for organizations to use this national directory.”

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

When a consumer uses a health plan provider directory to look up a physician, there’s a high probability that the entry for that doctor is incomplete or inaccurate. The Centers for Medicare & Medicaid Services would like to change that by creating a National Directory of Healthcare Providers and Services, which the agency believes would be more valuable to consumers.

In asking for public comments on whether and how it should establish the directory, CMS argues that this data repository would help patients locate physicians and could help with care coordination, health information exchange, and public health data reporting.

However, it’s not clear that such a directory would be any better than current insurance company listings or that people would use it. But a national directory could benefit physician practices by reducing their administrative work, according to observers.

In requesting public comment on the proposed national directory, CMS explains that provider organizations face “redundant and burdensome reporting requirements to multiple databases.” The directory could greatly reduce this challenge by requiring health care organizations to report provider information to a single database. Currently, physician practices have to submit these data to an average of 20 payers each, according to CMS.

“Right now, [physicians are] inundated with requests, and it takes a lot of time to update this stuff,” said David Zetter, a practice management consultant in Mechanicsburg, Pa.. “If there were one national repository of this information, that would be a good move.”

CMS envisions the National Directory as a central hub from which payers could obtain the latest provider data, which would be updated through a standardized application programming interface (API). Consequently, the insurers would no longer need to have providers submit this information to them separately.

CMS is soliciting input on what should be included in the directory. It notes that in addition to contact information, insurer directories also include a physicians’ specialties, health plan affiliations, and whether they accept new patients.

CMS’ 60-day public comment period ends Dec. 6. After that, the agency will decide what steps to take if it is decided that CMS has the legal authority to create the directory.
 

Terrible track record

In its annual reviews of health plan directories, CMS found that, from 2017 to 2022, only 47% of provider entries were complete. Only 73% of the providers could be matched to published directories. And only 28% of the provider names, addresses, and specialties in the directories matched those in the National Provider Identifier (NPI) registry.

Many of the mistakes in provider directories stem from errors made by practice staff, who have many other duties besides updating directory data. Yet an astonishing amount of time and effort is devoted to this task. A 2019 survey found that physician practices spend $2.76 billion annually on directory maintenance, or nearly $1000 per month per practice, on average.

The Council for Affordable Quality Healthcare, which conducted the survey, estimated that placing all directory data collection on a single platform could save the average practice $4,746 per year. For all practices in the United States, that works out to about $1.1 billion annually, CAQH said.
 

Pros and cons of national directory

For all the money spent on maintaining provider directories, consumers don’t use them very much. According to a 2021 Press Ganey survey, fewer than 5% of consumers seeking a primary care doctor get their information from an insurer or a benefits manager. About half search the internet first, and 24% seek a referral from a physician.

A national provider directory would be useful only if it were done right, Mr. Zetter said. Citing the inaccuracy and incompleteness of health plan directories, he said it was likely that a national directory would have similar problems. Data entered by practice staff would have to be automatically validated, perhaps through use of some kind of AI algorithm.
 

Effect on coordination of care

Mr. Zetter doubts the directory could improve care coordination, because primary care doctors usually refer patients to specialists they already know.

But Julia Adler-Milstein, PhD, professor of medicine and director of the Center for Clinical Informatics at the University of California, San Francisco, said that a national directory could improve communications among providers when patients select specialists outside of their primary care physician’s referral network.

“Especially if it’s not an established referral relationship, that’s where a national directory would be helpful, not only to locate the physicians but also to understand their preferences in how they’d like to receive information,” she said in an interview.

Dr. Adler-Milstein worries less than Mr. Zetter does about the challenge of ensuring the accuracy of data in the directory. She pointed out that the National Plan and Provider Enumeration System, which includes the NPI registry, has done a good job of validating provider name, address, and specialty information.

Dr. Adler-Milstein is more concerned about whether the proposed directory would address physician preferences as to how they wish to receive information. For example, while some physicians may prefer to be contacted directly, others may prefer or are required to communicate through their practices or health systems.
 

Efficiency in data exchange

The API used by the proposed directory would be based on the Fast Health Interoperability Resources standard that all electronic health record vendors must now include in their products. That raises the question of whether communications using contact information from the directory would be sent through a secure email system or through integrated EHR systems, Dr. Adler-Milstein said.

“I’m not sure whether the directory could support that [integration],” she said. “If it focuses on the concept of secure email exchange, that’s a relatively inefficient way of doing it,” because providers want clinical messages to pop up in their EHR workflow rather than their inboxes.

Nevertheless, Dr. Milstein-Adler added, the directory “would clearly take a lot of today’s manual work out of the system. I think organizations like UCSF would be very motivated to support the directory, knowing that people were going to a single source to find the updated information, including preferences in how we’d like people to communicate with us. There would be a lot of efficiency reasons for organizations to use this national directory.”

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

Masks can be scary on Halloween, but more so when they come with scrubs, scalpels, and God complexes. In March, Medscape readers chose their favorite characters and performers in the Hollywood health care system. As a Halloween treat, we follow up with a dozen of our favorite Evil Doctors from a deep bench (and no, Dr Evil didn’t go to medical school; neither did Dr No, for that matter). Before you see these folks who’d rather haunt than heal, we urge you to seek a second opinion.

George Harris (Richard Widmark, “Coma,” 1978)

“Medicine is now a great social force,” says Dr. George Harris (Richard Widmark), chief of surgery at Boston Memorial. Because the public trusts doctors, “we’ll make the hard decisions” – like choosing which young, healthy patients to put into an irreversible coma to harvest their organs. Harris’ audience of one here is Dr. Susan Wheeler (Genevieve Bujold), the upstart who has uncovered his plot, and whom Harris has just drugged to prepare her as his next unintentional donor. “Coma” was based on a bestseller by Robin Cook and directed by Michael Crichton, who left Harvard Medical School for a career in popular books and films, including “The Andromeda Strain” and “Jurassic Park.” Although Dr. Harris starts out as a reassuring friend and mentor to Dr. Wheeler, older moviegoers won’t forget that he launched to stardom by tossing a woman in a wheelchair down the stairs in 1947’s “Kiss of Death.”
 

Christian Szell (Laurence Olivier, “Marathon Man,” 1976)

He may look harmless, but Christian Szell (Laurence Olivier) is a sadist with a secret, a stash, and throat-slitting skills. Szell, a dentist known as the White Angel of Auschwitz for his war crimes, stops at nothing to protect the diamonds he stole from his victims in the camps. In one of Hollywood’s most infamous torture scenes, Szell tries to extract information from Babe Levy (Dustin Hoffman), an innocent grad student, plying the tools of his trade. When Szell asks, “Is it safe?” he’s not curious about whether Babe’s insurance covers anesthesia.

Orin Scrivello (Steve Martin, “Little Shop of Horrors,” 1986)

Sticking with deranged dentists, Orin Scrivello, DDS, (Steve Martin) sings and dances his way into your nightmares buoyed by copious helpings of nitrous oxide. Orin’s too-encouraging momma told him to parlay his sadistic tendencies into a career “where people will pay you to be inhumane.” Sonny listened. Moviegoers were treated to screeching sound effects of a tooth getting yanked during an Elvis-like musical number shot in part from inside a patient’s mouth. Martin makes a creepy scene more fun than a long, slow root canal.

Henry Frankenstein (Colin Clive, “Frankenstein,” 1931)

His alarming need for fresh corpses forced Henry Frankenstein (Colin Clive) to leave medical school and experiment solo in a castle. He insists to his betrothed that he hasn’t gone mad when she arrives as  he is bringing a dead body back to life during a raging lightning storm. When she and Henry’s mentor, Dr Waldman, witness him succeed, Waldman warns Henry that the former owner of the purloined brain was a notorious criminal. When Henry exclaims: “It’s alive, it’s alive !” little did he know that he created the face (Boris Karloff) that would launch a thousand sequels, a spectacular satire, and untold Halloween masks.

Dr. Gogol (Peter Lorre, “Mad Love,” 1935)

A few years after playing doctor Frankenstein, Colin Clive became the patient of a mad medic himself. A concert pianist whose hands have been mangled in a train wreck, Clive’s wife turns to Dr. Gogol (Peter Lorre, in his Hollywood debut), who promises to surgically reattach the musician’s hands. Unfortunately, Gogol is so obsessed with the wife, a star of gory stage shows, that he has created a wax figure of her. He schemes to win her in the flesh by attaching a murderer’s hands to Clive, then frame him for committing murder with those hands. Gogol utters the madman’s lament: “I have conquered science. Why can’t I conquer love?” A modern remake would surely have him asking, “Why do they swipe left?

Hannibal Lecter (Anthony Hopkins, “Silence of the Lambs,” 1991)

The FBI, hunting for a serial killer, sends trainee Clarice Starling (Jodie Foster) to seek insight into the murderer from the imprisoned Dr. Hannibal Lecter (Anthony Hopkins), a brilliant psychiatrist with a penchant for murder — and a taste for the flesh of his victims. Lecter proves to be a menace from their first meeting; the bars and glass surrounding his cell offer Clarice no protection from his gaze and ability to read her mind. In his own way, the urbane, pathologically charming Lecter takes a shine to Clarice, helping with the case while embarking on another murderous spree against men who recently wronged her. When he escapes, his plans do not include dinner with – or of – Clarice, but others, well, they’re not so lucky.

Henry Jekyll (Fredric March, “Dr. Jekyll and Mr. Hyde,” 1931)

Henry Jekyll (Fredric March) is a jumble of personalities. By day, he’s a kindly doctor in Victorian London with an American accent. But he is so determined to split good and evil personalities that he devises a potion to outsource his id. As he watches himself morph into Mr. Hyde – a hairy, cone-headed dude in serious need of an orthodontist – he exclaims, “Free! Free at last!” Free, that is, for his simian side to engage in debauchery, abuse, self-hatred, intimations of rape, and ultimately murder – all of which are explored in this pre-Code film, the first talkie version of Robert Louis Stevenson’s story.

Dr. Moreau (Charles Laughton, “Island of Lost Souls,” 1932)

“Strange-looking natives you have here,” shipwreck victim Edward Parker (Richard Arlen) tells his host, the white-suited, whip-wielding Dr Moreau. Before long, we learn that Moreau’s evil veterinary talents  have created an island population of human/beast hybrids who are forced to follow his laws – especially one forbidding them from eating meat or walking on all fours. Lawbreakers get taken to the House of Pain, a medical setting which, as its name suggests, lacks adequate analgesia. Burt Lancaster and Marlon Brando took on the Moreau role in later versions, but Laughton is the creepiest when he asks, “Do you know what it means to feel like God?” The film was banned for years in Britain, and H.G. Wells despised this take on his antivivisection tale.

Charles Nichols (Jeroen Krabbé, “The Fugitive,” 1993)

Richard Kimble, a Chicago vascular surgeon, arrives home to find that a man just brutally murdered his loving wife. The killer escapes, and Kimble falls into the frame-up. Convicted for the murder and headed to prison, Kimble breaks free in an epic escape scene. He spends the rest of the movie all but giving his right arm to find the murderer, while being pursued by a dogged U.S. Marshal played with gusto by Tommy Lee Jones. Kimble eventually discovers that his colleague, Dr. Charles Nichols (Jeroen Krabbé), is not quite the best friend a man could have – or the most ethical of clinical investigators.

Elliot and Beverly Mantle (Jeremy Irons, “Dead Ringers,” 1988)

“You’ve got to try the movie star,” fertility specialist Elliot Mantle (Jeremy Irons) implores to his identical but meek twin brother, Beverly (also Jeremy Irons), talking about an actress-patient (Genevieve Bujold) as if she were a menu item. Beverly shares a practice with Elliot, along with a soul and an easily satisfied drug addiction. Beverly is unaware that Elliot seduces patients before passing them off to his brother, including the actress. Beverly is in love with the actress, which upsets the equilibrium of their shared soul. He aims to fix this, but not without some trauma involving freakish and unsanitary operating implements.

Dean Armitage (Bradley Whitford, “Get Out,” 2017)

Neurosurgeon Dean Armitage (Bradley Whitford) was such a fan of President Obama that he would have voted for him a third time if he could. At least, that’s how he portrays himself to Chris (Daniel Kaluuya), an African American photographer and the new boyfriend of Armitage’s White daughter. The Armitage estate has plenty of people of color – on staff, anyway – but Chris finds them odd and distant. It turns out that a gathering of rich White people is in fact an auction for his eyesight. Horror ensues. The main message from this film is not unlike that of Russian operatives who fall out of favor with the Kremlin: Don’t drink the tea.

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

Masks can be scary on Halloween, but more so when they come with scrubs, scalpels, and God complexes. In March, Medscape readers chose their favorite characters and performers in the Hollywood health care system. As a Halloween treat, we follow up with a dozen of our favorite Evil Doctors from a deep bench (and no, Dr Evil didn’t go to medical school; neither did Dr No, for that matter). Before you see these folks who’d rather haunt than heal, we urge you to seek a second opinion.

George Harris (Richard Widmark, “Coma,” 1978)

“Medicine is now a great social force,” says Dr. George Harris (Richard Widmark), chief of surgery at Boston Memorial. Because the public trusts doctors, “we’ll make the hard decisions” – like choosing which young, healthy patients to put into an irreversible coma to harvest their organs. Harris’ audience of one here is Dr. Susan Wheeler (Genevieve Bujold), the upstart who has uncovered his plot, and whom Harris has just drugged to prepare her as his next unintentional donor. “Coma” was based on a bestseller by Robin Cook and directed by Michael Crichton, who left Harvard Medical School for a career in popular books and films, including “The Andromeda Strain” and “Jurassic Park.” Although Dr. Harris starts out as a reassuring friend and mentor to Dr. Wheeler, older moviegoers won’t forget that he launched to stardom by tossing a woman in a wheelchair down the stairs in 1947’s “Kiss of Death.”
 

Christian Szell (Laurence Olivier, “Marathon Man,” 1976)

He may look harmless, but Christian Szell (Laurence Olivier) is a sadist with a secret, a stash, and throat-slitting skills. Szell, a dentist known as the White Angel of Auschwitz for his war crimes, stops at nothing to protect the diamonds he stole from his victims in the camps. In one of Hollywood’s most infamous torture scenes, Szell tries to extract information from Babe Levy (Dustin Hoffman), an innocent grad student, plying the tools of his trade. When Szell asks, “Is it safe?” he’s not curious about whether Babe’s insurance covers anesthesia.

Orin Scrivello (Steve Martin, “Little Shop of Horrors,” 1986)

Sticking with deranged dentists, Orin Scrivello, DDS, (Steve Martin) sings and dances his way into your nightmares buoyed by copious helpings of nitrous oxide. Orin’s too-encouraging momma told him to parlay his sadistic tendencies into a career “where people will pay you to be inhumane.” Sonny listened. Moviegoers were treated to screeching sound effects of a tooth getting yanked during an Elvis-like musical number shot in part from inside a patient’s mouth. Martin makes a creepy scene more fun than a long, slow root canal.

Henry Frankenstein (Colin Clive, “Frankenstein,” 1931)

His alarming need for fresh corpses forced Henry Frankenstein (Colin Clive) to leave medical school and experiment solo in a castle. He insists to his betrothed that he hasn’t gone mad when she arrives as  he is bringing a dead body back to life during a raging lightning storm. When she and Henry’s mentor, Dr Waldman, witness him succeed, Waldman warns Henry that the former owner of the purloined brain was a notorious criminal. When Henry exclaims: “It’s alive, it’s alive !” little did he know that he created the face (Boris Karloff) that would launch a thousand sequels, a spectacular satire, and untold Halloween masks.

Dr. Gogol (Peter Lorre, “Mad Love,” 1935)

A few years after playing doctor Frankenstein, Colin Clive became the patient of a mad medic himself. A concert pianist whose hands have been mangled in a train wreck, Clive’s wife turns to Dr. Gogol (Peter Lorre, in his Hollywood debut), who promises to surgically reattach the musician’s hands. Unfortunately, Gogol is so obsessed with the wife, a star of gory stage shows, that he has created a wax figure of her. He schemes to win her in the flesh by attaching a murderer’s hands to Clive, then frame him for committing murder with those hands. Gogol utters the madman’s lament: “I have conquered science. Why can’t I conquer love?” A modern remake would surely have him asking, “Why do they swipe left?

Hannibal Lecter (Anthony Hopkins, “Silence of the Lambs,” 1991)

The FBI, hunting for a serial killer, sends trainee Clarice Starling (Jodie Foster) to seek insight into the murderer from the imprisoned Dr. Hannibal Lecter (Anthony Hopkins), a brilliant psychiatrist with a penchant for murder — and a taste for the flesh of his victims. Lecter proves to be a menace from their first meeting; the bars and glass surrounding his cell offer Clarice no protection from his gaze and ability to read her mind. In his own way, the urbane, pathologically charming Lecter takes a shine to Clarice, helping with the case while embarking on another murderous spree against men who recently wronged her. When he escapes, his plans do not include dinner with – or of – Clarice, but others, well, they’re not so lucky.

Henry Jekyll (Fredric March, “Dr. Jekyll and Mr. Hyde,” 1931)

Henry Jekyll (Fredric March) is a jumble of personalities. By day, he’s a kindly doctor in Victorian London with an American accent. But he is so determined to split good and evil personalities that he devises a potion to outsource his id. As he watches himself morph into Mr. Hyde – a hairy, cone-headed dude in serious need of an orthodontist – he exclaims, “Free! Free at last!” Free, that is, for his simian side to engage in debauchery, abuse, self-hatred, intimations of rape, and ultimately murder – all of which are explored in this pre-Code film, the first talkie version of Robert Louis Stevenson’s story.

Dr. Moreau (Charles Laughton, “Island of Lost Souls,” 1932)

“Strange-looking natives you have here,” shipwreck victim Edward Parker (Richard Arlen) tells his host, the white-suited, whip-wielding Dr Moreau. Before long, we learn that Moreau’s evil veterinary talents  have created an island population of human/beast hybrids who are forced to follow his laws – especially one forbidding them from eating meat or walking on all fours. Lawbreakers get taken to the House of Pain, a medical setting which, as its name suggests, lacks adequate analgesia. Burt Lancaster and Marlon Brando took on the Moreau role in later versions, but Laughton is the creepiest when he asks, “Do you know what it means to feel like God?” The film was banned for years in Britain, and H.G. Wells despised this take on his antivivisection tale.

Charles Nichols (Jeroen Krabbé, “The Fugitive,” 1993)

Richard Kimble, a Chicago vascular surgeon, arrives home to find that a man just brutally murdered his loving wife. The killer escapes, and Kimble falls into the frame-up. Convicted for the murder and headed to prison, Kimble breaks free in an epic escape scene. He spends the rest of the movie all but giving his right arm to find the murderer, while being pursued by a dogged U.S. Marshal played with gusto by Tommy Lee Jones. Kimble eventually discovers that his colleague, Dr. Charles Nichols (Jeroen Krabbé), is not quite the best friend a man could have – or the most ethical of clinical investigators.

Elliot and Beverly Mantle (Jeremy Irons, “Dead Ringers,” 1988)

“You’ve got to try the movie star,” fertility specialist Elliot Mantle (Jeremy Irons) implores to his identical but meek twin brother, Beverly (also Jeremy Irons), talking about an actress-patient (Genevieve Bujold) as if she were a menu item. Beverly shares a practice with Elliot, along with a soul and an easily satisfied drug addiction. Beverly is unaware that Elliot seduces patients before passing them off to his brother, including the actress. Beverly is in love with the actress, which upsets the equilibrium of their shared soul. He aims to fix this, but not without some trauma involving freakish and unsanitary operating implements.

Dean Armitage (Bradley Whitford, “Get Out,” 2017)

Neurosurgeon Dean Armitage (Bradley Whitford) was such a fan of President Obama that he would have voted for him a third time if he could. At least, that’s how he portrays himself to Chris (Daniel Kaluuya), an African American photographer and the new boyfriend of Armitage’s White daughter. The Armitage estate has plenty of people of color – on staff, anyway – but Chris finds them odd and distant. It turns out that a gathering of rich White people is in fact an auction for his eyesight. Horror ensues. The main message from this film is not unlike that of Russian operatives who fall out of favor with the Kremlin: Don’t drink the tea.

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

Masks can be scary on Halloween, but more so when they come with scrubs, scalpels, and God complexes. In March, Medscape readers chose their favorite characters and performers in the Hollywood health care system. As a Halloween treat, we follow up with a dozen of our favorite Evil Doctors from a deep bench (and no, Dr Evil didn’t go to medical school; neither did Dr No, for that matter). Before you see these folks who’d rather haunt than heal, we urge you to seek a second opinion.

George Harris (Richard Widmark, “Coma,” 1978)

“Medicine is now a great social force,” says Dr. George Harris (Richard Widmark), chief of surgery at Boston Memorial. Because the public trusts doctors, “we’ll make the hard decisions” – like choosing which young, healthy patients to put into an irreversible coma to harvest their organs. Harris’ audience of one here is Dr. Susan Wheeler (Genevieve Bujold), the upstart who has uncovered his plot, and whom Harris has just drugged to prepare her as his next unintentional donor. “Coma” was based on a bestseller by Robin Cook and directed by Michael Crichton, who left Harvard Medical School for a career in popular books and films, including “The Andromeda Strain” and “Jurassic Park.” Although Dr. Harris starts out as a reassuring friend and mentor to Dr. Wheeler, older moviegoers won’t forget that he launched to stardom by tossing a woman in a wheelchair down the stairs in 1947’s “Kiss of Death.”
 

Christian Szell (Laurence Olivier, “Marathon Man,” 1976)

He may look harmless, but Christian Szell (Laurence Olivier) is a sadist with a secret, a stash, and throat-slitting skills. Szell, a dentist known as the White Angel of Auschwitz for his war crimes, stops at nothing to protect the diamonds he stole from his victims in the camps. In one of Hollywood’s most infamous torture scenes, Szell tries to extract information from Babe Levy (Dustin Hoffman), an innocent grad student, plying the tools of his trade. When Szell asks, “Is it safe?” he’s not curious about whether Babe’s insurance covers anesthesia.

Orin Scrivello (Steve Martin, “Little Shop of Horrors,” 1986)

Sticking with deranged dentists, Orin Scrivello, DDS, (Steve Martin) sings and dances his way into your nightmares buoyed by copious helpings of nitrous oxide. Orin’s too-encouraging momma told him to parlay his sadistic tendencies into a career “where people will pay you to be inhumane.” Sonny listened. Moviegoers were treated to screeching sound effects of a tooth getting yanked during an Elvis-like musical number shot in part from inside a patient’s mouth. Martin makes a creepy scene more fun than a long, slow root canal.

Henry Frankenstein (Colin Clive, “Frankenstein,” 1931)

His alarming need for fresh corpses forced Henry Frankenstein (Colin Clive) to leave medical school and experiment solo in a castle. He insists to his betrothed that he hasn’t gone mad when she arrives as  he is bringing a dead body back to life during a raging lightning storm. When she and Henry’s mentor, Dr Waldman, witness him succeed, Waldman warns Henry that the former owner of the purloined brain was a notorious criminal. When Henry exclaims: “It’s alive, it’s alive !” little did he know that he created the face (Boris Karloff) that would launch a thousand sequels, a spectacular satire, and untold Halloween masks.

Dr. Gogol (Peter Lorre, “Mad Love,” 1935)

A few years after playing doctor Frankenstein, Colin Clive became the patient of a mad medic himself. A concert pianist whose hands have been mangled in a train wreck, Clive’s wife turns to Dr. Gogol (Peter Lorre, in his Hollywood debut), who promises to surgically reattach the musician’s hands. Unfortunately, Gogol is so obsessed with the wife, a star of gory stage shows, that he has created a wax figure of her. He schemes to win her in the flesh by attaching a murderer’s hands to Clive, then frame him for committing murder with those hands. Gogol utters the madman’s lament: “I have conquered science. Why can’t I conquer love?” A modern remake would surely have him asking, “Why do they swipe left?

Hannibal Lecter (Anthony Hopkins, “Silence of the Lambs,” 1991)

The FBI, hunting for a serial killer, sends trainee Clarice Starling (Jodie Foster) to seek insight into the murderer from the imprisoned Dr. Hannibal Lecter (Anthony Hopkins), a brilliant psychiatrist with a penchant for murder — and a taste for the flesh of his victims. Lecter proves to be a menace from their first meeting; the bars and glass surrounding his cell offer Clarice no protection from his gaze and ability to read her mind. In his own way, the urbane, pathologically charming Lecter takes a shine to Clarice, helping with the case while embarking on another murderous spree against men who recently wronged her. When he escapes, his plans do not include dinner with – or of – Clarice, but others, well, they’re not so lucky.

Henry Jekyll (Fredric March, “Dr. Jekyll and Mr. Hyde,” 1931)

Henry Jekyll (Fredric March) is a jumble of personalities. By day, he’s a kindly doctor in Victorian London with an American accent. But he is so determined to split good and evil personalities that he devises a potion to outsource his id. As he watches himself morph into Mr. Hyde – a hairy, cone-headed dude in serious need of an orthodontist – he exclaims, “Free! Free at last!” Free, that is, for his simian side to engage in debauchery, abuse, self-hatred, intimations of rape, and ultimately murder – all of which are explored in this pre-Code film, the first talkie version of Robert Louis Stevenson’s story.

Dr. Moreau (Charles Laughton, “Island of Lost Souls,” 1932)

“Strange-looking natives you have here,” shipwreck victim Edward Parker (Richard Arlen) tells his host, the white-suited, whip-wielding Dr Moreau. Before long, we learn that Moreau’s evil veterinary talents  have created an island population of human/beast hybrids who are forced to follow his laws – especially one forbidding them from eating meat or walking on all fours. Lawbreakers get taken to the House of Pain, a medical setting which, as its name suggests, lacks adequate analgesia. Burt Lancaster and Marlon Brando took on the Moreau role in later versions, but Laughton is the creepiest when he asks, “Do you know what it means to feel like God?” The film was banned for years in Britain, and H.G. Wells despised this take on his antivivisection tale.

Charles Nichols (Jeroen Krabbé, “The Fugitive,” 1993)

Richard Kimble, a Chicago vascular surgeon, arrives home to find that a man just brutally murdered his loving wife. The killer escapes, and Kimble falls into the frame-up. Convicted for the murder and headed to prison, Kimble breaks free in an epic escape scene. He spends the rest of the movie all but giving his right arm to find the murderer, while being pursued by a dogged U.S. Marshal played with gusto by Tommy Lee Jones. Kimble eventually discovers that his colleague, Dr. Charles Nichols (Jeroen Krabbé), is not quite the best friend a man could have – or the most ethical of clinical investigators.

Elliot and Beverly Mantle (Jeremy Irons, “Dead Ringers,” 1988)

“You’ve got to try the movie star,” fertility specialist Elliot Mantle (Jeremy Irons) implores to his identical but meek twin brother, Beverly (also Jeremy Irons), talking about an actress-patient (Genevieve Bujold) as if she were a menu item. Beverly shares a practice with Elliot, along with a soul and an easily satisfied drug addiction. Beverly is unaware that Elliot seduces patients before passing them off to his brother, including the actress. Beverly is in love with the actress, which upsets the equilibrium of their shared soul. He aims to fix this, but not without some trauma involving freakish and unsanitary operating implements.

Dean Armitage (Bradley Whitford, “Get Out,” 2017)

Neurosurgeon Dean Armitage (Bradley Whitford) was such a fan of President Obama that he would have voted for him a third time if he could. At least, that’s how he portrays himself to Chris (Daniel Kaluuya), an African American photographer and the new boyfriend of Armitage’s White daughter. The Armitage estate has plenty of people of color – on staff, anyway – but Chris finds them odd and distant. It turns out that a gathering of rich White people is in fact an auction for his eyesight. Horror ensues. The main message from this film is not unlike that of Russian operatives who fall out of favor with the Kremlin: Don’t drink the tea.

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

Josie Tenore, MD, and Paul Hinds were introduced by a mutual friend in 2017 and hadn’t been going out long when she laid down the law: He had to get a physical.

“I don’t date people who don’t take care of their health,” said Dr. Tenore, who practices cosmetic dermatology and functional medicine in suburban Chicago.

One of Mr. Hinds’ blood tests that summer came back with an alarming result: His prostate-specific antigen (PSA), level was very high. A biopsy confirmed he had advanced prostate cancer.

There aren’t a lot of comfortable alternatives for treating prostate cancer, which generally progresses as long as testosterone levels remain high. Marijuana appears to lower testosterone levels, so after his diagnosis, he dosed a liquid form of cannabis for several weeks. That cut his PSA in half, but Mr. Hinds, a cybersecurity expert who likes yoga and bicycling, “was stoned out of his mind and couldn’t function,” Dr. Tenore recalled.

With Dr. Tenore guiding his decisions, Mr. Hinds next tried high-frequency ultrasound treatment, but it failed. And in the summer of 2019 doctors removed his prostate gland. Still, the PSA levels climbed again, and doctors assessed that the cancer had metastasized. The only alternative was to drastically lower Mr. Hinds’ testosterone levels – either via surgery or drugs that block all testosterone. In May 2021, he got his first intramuscular shot of Lupron Depot, a brand name for leuprolide, designed to suppress the prostate gland’s release of the hormone for 3 months. That August, he got his second shot.

And then the bills came.

The patient: Paul Hinds, now 60, is covered by United Healthcare through a COBRA plan from his former employer.

Medical service: Two 3-month Lupron Depot injections for metastatic prostate cancer.

Service provider: University of Chicago Medicine, a 900-physician nonprofit system that includes an 811-bed medical center, a suburban hospital, the Pritzker School of Medicine, and outpatient clinics and physician offices throughout the Chicago area.

Total bill: $73,812 for the two shots ($35,414 for the first, $38,398 for the second), including lab work and physician charges. United Healthcare’s negotiated rate for the two shots plus associated fees was $27,568, of which the insurer paid $19,567. After Mr. Hinds haggled with the hospital and insurer for more than a year, his share of the bills was determined to be nearly $7,000.

What gives: The first issue is unrelenting price increases on old drugs that have remained branded as manufacturers find ways to extend patents for decades and maintain sales through marketing.

Though Lupron was invented in 1973, its manufacturer got patent extensions in 1989 by offering a slow-release version. Drugmakers commonly use this tactic to extend their exclusive rights to sell a product.

The development of Lupron Depot as an intramuscular shot that suppressed testosterone for months at a time improved patient compliance and also enabled its maker, Abbott Laboratories, and its Japanese partner, Takeda, to extend their patents on the drug into the 2000s, said Gerald Weisberg, MD, a former Abbott scientist who has been critical of the company’s pricing policies.

In subsequent years, Abbott and Takeda, in a joint venture called TAP Pharmaceuticals, steadily marked up the price of their slow-release product. In 2000, the average wholesale U.S. price for a 3-month shot was $1,245; currently that figure is $5,866. (It is manufactured in the United States by AbbVie now.)

In the United Kingdom, where health care is generally free and Takeda sells the drug under the name Prostap, all physicians can purchase a 3-month dose for about $260.

It’s likely that Chicago Medicine, where Mr. Hinds got his shots, paid something close to the British price. That’s because the health system’s hospital on Chicago’s South Side participates in a federal program called 340B, which allows hospitals that serve low-income populations to purchase drugs at deep discounts.

Lupron Depot is given as a simple injection into the muscle. It takes minutes for a nurse or doctor to administer. Yet hospital systems like Chicago Medicine can and typically do charge lavishly for such services, to enhance revenue, said Morgan Henderson, principal data scientist at the Hilltop Institute at the University of Maryland-Baltimore County. Chicago Medicine declined to say what it paid for the drug.

While U.S. drugmakers can price their drugs however they please, TAP has gotten into trouble for its Lupron sales policies in the past. In 2001, after a Justice Department probe, it paid an $875 million settlement for illegally stimulating sales by giving urologists free and discounted vials of the drug while enabling them to charge Medicare full price.

Since then, many other drugs aimed at lowering testosterone levels have entered the market, including a pill, relugolix (Orgovyx). So why wouldn’t a patient use them?

Lupron Depot is long acting, is easy to prepare and store, and employs a small needle, which some patients prefer, said Brian McNeil, MD, chief of urology at University Hospital of Brooklyn. Orgovyx is convenient, but “a patient has to be very compliant. They have to take it every day around the same time,” he said. “Some people just forget.”

But there is another important factor that may well explain Lupron Depot’s ongoing popularity among medical providers: Doctors and hospitals can earn tens of thousands of dollars each visit by marking up its price and administration fees – as they did with Mr. Hinds. If they merely write a prescription for a drug that can be taken at home, they earn nothing.

Asked about this high patient charge and the possibility of using alternatives, United spokesperson Maria Gordon Shydlo said payment was “appropriately based on the hospital’s contract and the member’s benefit plan,” adding that the insurer encourages customers to shop around for the best quality and price.

Resolution: In addition to leaving Mr. Hinds listless, the Lupron Depot shots were, literally, a pain in the rear end. “Each time he was miserable for 2 weeks,” Dr. Tenore said. After looking over his first bill for the Lupron shot, Dr. Tenore told Mr. Hinds he should ask his doctor whether there was a less expensive drug that was easier to take.

After the second shot, in August 2021, a pharmacist told him he could instead receive the pill. His doctor prescribed Mr. Hinds 3 months’ worth of Orgovyx last November, for which he paid $216 and the insurer paid over $6,000. The drug’s list price is about $2,700 a month. There is evidence that Orgovyx works a little better than leuprolide.

Orgovyx was a “no-brainer,” Mr. Hinds said. “Why would you want a sore ass for two weeks when you can take a pill that kicks in sooner, functions the same way, and clears your body of testosterone faster?”

While Orgovyx is increasingly used for prostate cancer, Lupron and other injections usually remain the standard of care, hospital spokesperson Ashley Heher said. Clinicians “work with patients to determine what treatments are the most medically effective and, when necessary, to find reasonable alternatives that may be less financially burdensome due to insurance coverage limitations.”

Mr. Hinds was baffled by the size of the charges. During months of phone calls and emails, the hospital reversed and then reapplied part of the charge, and then in July agreed to a $666.34 monthly payment plan. After Hinds had made two payments, however, the hospital announced Aug. 29 it was canceling the agreement and sending the remainder of his bill to a collection agency. Two weeks later, the hospital reinstated the payment plan – after KHN asked about the cancellation.

As for Mr. Hinds, he remains active, though his bike rides have been shortened from 50 or 60 miles to about 30, he said.

He’s grateful to have Dr. Tenore as a free consultant and empathizes with those who lack a knowledgeable guide through their disease and health care’s financial maze.

“I’ve got Dr. Josie as an advocate who knows the system,” Mr. Hinds said.

The takeaway: First tip: If you are prescribed an infusion or injection, ask your physician if there are cheaper oral medications to treat your condition. Also, many drugs that are given by injection – ones that are given “subcutaneously,” rather than into a muscle – can be administered by a patient at home, avoiding hefty administration fees. Drugs like Dupixent for eczema fall into this category.

Keep in mind that where you get treatment could make a big difference in your charges: A study found that leading U.S. cancer centers charge enormous markups to private insurers for drug injections or infusions. Another study found that hospital systems charge an average of 86% more than private clinics for cancer drug infusions. And the percentage of cancer infusions done in hospital-operated clinics increased from 6% in 2004 to 43% in 2014, and has grown since.

Under a law that took effect in 2021, hospitals are required to list their charges, though they currently do so in a way that is not user friendly. But it’s worth taking a look at the price list – the hospital chargemaster – to try to decipher the pricing and markup for your medicine. If you’re about to get an injection, infusion, or procedure done in a hospital system, ask ahead of time for an estimate of what you will owe.

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

Josie Tenore, MD, and Paul Hinds were introduced by a mutual friend in 2017 and hadn’t been going out long when she laid down the law: He had to get a physical.

“I don’t date people who don’t take care of their health,” said Dr. Tenore, who practices cosmetic dermatology and functional medicine in suburban Chicago.

One of Mr. Hinds’ blood tests that summer came back with an alarming result: His prostate-specific antigen (PSA), level was very high. A biopsy confirmed he had advanced prostate cancer.

There aren’t a lot of comfortable alternatives for treating prostate cancer, which generally progresses as long as testosterone levels remain high. Marijuana appears to lower testosterone levels, so after his diagnosis, he dosed a liquid form of cannabis for several weeks. That cut his PSA in half, but Mr. Hinds, a cybersecurity expert who likes yoga and bicycling, “was stoned out of his mind and couldn’t function,” Dr. Tenore recalled.

With Dr. Tenore guiding his decisions, Mr. Hinds next tried high-frequency ultrasound treatment, but it failed. And in the summer of 2019 doctors removed his prostate gland. Still, the PSA levels climbed again, and doctors assessed that the cancer had metastasized. The only alternative was to drastically lower Mr. Hinds’ testosterone levels – either via surgery or drugs that block all testosterone. In May 2021, he got his first intramuscular shot of Lupron Depot, a brand name for leuprolide, designed to suppress the prostate gland’s release of the hormone for 3 months. That August, he got his second shot.

And then the bills came.

The patient: Paul Hinds, now 60, is covered by United Healthcare through a COBRA plan from his former employer.

Medical service: Two 3-month Lupron Depot injections for metastatic prostate cancer.

Service provider: University of Chicago Medicine, a 900-physician nonprofit system that includes an 811-bed medical center, a suburban hospital, the Pritzker School of Medicine, and outpatient clinics and physician offices throughout the Chicago area.

Total bill: $73,812 for the two shots ($35,414 for the first, $38,398 for the second), including lab work and physician charges. United Healthcare’s negotiated rate for the two shots plus associated fees was $27,568, of which the insurer paid $19,567. After Mr. Hinds haggled with the hospital and insurer for more than a year, his share of the bills was determined to be nearly $7,000.

What gives: The first issue is unrelenting price increases on old drugs that have remained branded as manufacturers find ways to extend patents for decades and maintain sales through marketing.

Though Lupron was invented in 1973, its manufacturer got patent extensions in 1989 by offering a slow-release version. Drugmakers commonly use this tactic to extend their exclusive rights to sell a product.

The development of Lupron Depot as an intramuscular shot that suppressed testosterone for months at a time improved patient compliance and also enabled its maker, Abbott Laboratories, and its Japanese partner, Takeda, to extend their patents on the drug into the 2000s, said Gerald Weisberg, MD, a former Abbott scientist who has been critical of the company’s pricing policies.

In subsequent years, Abbott and Takeda, in a joint venture called TAP Pharmaceuticals, steadily marked up the price of their slow-release product. In 2000, the average wholesale U.S. price for a 3-month shot was $1,245; currently that figure is $5,866. (It is manufactured in the United States by AbbVie now.)

In the United Kingdom, where health care is generally free and Takeda sells the drug under the name Prostap, all physicians can purchase a 3-month dose for about $260.

It’s likely that Chicago Medicine, where Mr. Hinds got his shots, paid something close to the British price. That’s because the health system’s hospital on Chicago’s South Side participates in a federal program called 340B, which allows hospitals that serve low-income populations to purchase drugs at deep discounts.

Lupron Depot is given as a simple injection into the muscle. It takes minutes for a nurse or doctor to administer. Yet hospital systems like Chicago Medicine can and typically do charge lavishly for such services, to enhance revenue, said Morgan Henderson, principal data scientist at the Hilltop Institute at the University of Maryland-Baltimore County. Chicago Medicine declined to say what it paid for the drug.

While U.S. drugmakers can price their drugs however they please, TAP has gotten into trouble for its Lupron sales policies in the past. In 2001, after a Justice Department probe, it paid an $875 million settlement for illegally stimulating sales by giving urologists free and discounted vials of the drug while enabling them to charge Medicare full price.

Since then, many other drugs aimed at lowering testosterone levels have entered the market, including a pill, relugolix (Orgovyx). So why wouldn’t a patient use them?

Lupron Depot is long acting, is easy to prepare and store, and employs a small needle, which some patients prefer, said Brian McNeil, MD, chief of urology at University Hospital of Brooklyn. Orgovyx is convenient, but “a patient has to be very compliant. They have to take it every day around the same time,” he said. “Some people just forget.”

But there is another important factor that may well explain Lupron Depot’s ongoing popularity among medical providers: Doctors and hospitals can earn tens of thousands of dollars each visit by marking up its price and administration fees – as they did with Mr. Hinds. If they merely write a prescription for a drug that can be taken at home, they earn nothing.

Asked about this high patient charge and the possibility of using alternatives, United spokesperson Maria Gordon Shydlo said payment was “appropriately based on the hospital’s contract and the member’s benefit plan,” adding that the insurer encourages customers to shop around for the best quality and price.

Resolution: In addition to leaving Mr. Hinds listless, the Lupron Depot shots were, literally, a pain in the rear end. “Each time he was miserable for 2 weeks,” Dr. Tenore said. After looking over his first bill for the Lupron shot, Dr. Tenore told Mr. Hinds he should ask his doctor whether there was a less expensive drug that was easier to take.

After the second shot, in August 2021, a pharmacist told him he could instead receive the pill. His doctor prescribed Mr. Hinds 3 months’ worth of Orgovyx last November, for which he paid $216 and the insurer paid over $6,000. The drug’s list price is about $2,700 a month. There is evidence that Orgovyx works a little better than leuprolide.

Orgovyx was a “no-brainer,” Mr. Hinds said. “Why would you want a sore ass for two weeks when you can take a pill that kicks in sooner, functions the same way, and clears your body of testosterone faster?”

While Orgovyx is increasingly used for prostate cancer, Lupron and other injections usually remain the standard of care, hospital spokesperson Ashley Heher said. Clinicians “work with patients to determine what treatments are the most medically effective and, when necessary, to find reasonable alternatives that may be less financially burdensome due to insurance coverage limitations.”

Mr. Hinds was baffled by the size of the charges. During months of phone calls and emails, the hospital reversed and then reapplied part of the charge, and then in July agreed to a $666.34 monthly payment plan. After Hinds had made two payments, however, the hospital announced Aug. 29 it was canceling the agreement and sending the remainder of his bill to a collection agency. Two weeks later, the hospital reinstated the payment plan – after KHN asked about the cancellation.

As for Mr. Hinds, he remains active, though his bike rides have been shortened from 50 or 60 miles to about 30, he said.

He’s grateful to have Dr. Tenore as a free consultant and empathizes with those who lack a knowledgeable guide through their disease and health care’s financial maze.

“I’ve got Dr. Josie as an advocate who knows the system,” Mr. Hinds said.

The takeaway: First tip: If you are prescribed an infusion or injection, ask your physician if there are cheaper oral medications to treat your condition. Also, many drugs that are given by injection – ones that are given “subcutaneously,” rather than into a muscle – can be administered by a patient at home, avoiding hefty administration fees. Drugs like Dupixent for eczema fall into this category.

Keep in mind that where you get treatment could make a big difference in your charges: A study found that leading U.S. cancer centers charge enormous markups to private insurers for drug injections or infusions. Another study found that hospital systems charge an average of 86% more than private clinics for cancer drug infusions. And the percentage of cancer infusions done in hospital-operated clinics increased from 6% in 2004 to 43% in 2014, and has grown since.

Under a law that took effect in 2021, hospitals are required to list their charges, though they currently do so in a way that is not user friendly. But it’s worth taking a look at the price list – the hospital chargemaster – to try to decipher the pricing and markup for your medicine. If you’re about to get an injection, infusion, or procedure done in a hospital system, ask ahead of time for an estimate of what you will owe.

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

Josie Tenore, MD, and Paul Hinds were introduced by a mutual friend in 2017 and hadn’t been going out long when she laid down the law: He had to get a physical.

“I don’t date people who don’t take care of their health,” said Dr. Tenore, who practices cosmetic dermatology and functional medicine in suburban Chicago.

One of Mr. Hinds’ blood tests that summer came back with an alarming result: His prostate-specific antigen (PSA), level was very high. A biopsy confirmed he had advanced prostate cancer.

There aren’t a lot of comfortable alternatives for treating prostate cancer, which generally progresses as long as testosterone levels remain high. Marijuana appears to lower testosterone levels, so after his diagnosis, he dosed a liquid form of cannabis for several weeks. That cut his PSA in half, but Mr. Hinds, a cybersecurity expert who likes yoga and bicycling, “was stoned out of his mind and couldn’t function,” Dr. Tenore recalled.

With Dr. Tenore guiding his decisions, Mr. Hinds next tried high-frequency ultrasound treatment, but it failed. And in the summer of 2019 doctors removed his prostate gland. Still, the PSA levels climbed again, and doctors assessed that the cancer had metastasized. The only alternative was to drastically lower Mr. Hinds’ testosterone levels – either via surgery or drugs that block all testosterone. In May 2021, he got his first intramuscular shot of Lupron Depot, a brand name for leuprolide, designed to suppress the prostate gland’s release of the hormone for 3 months. That August, he got his second shot.

And then the bills came.

The patient: Paul Hinds, now 60, is covered by United Healthcare through a COBRA plan from his former employer.

Medical service: Two 3-month Lupron Depot injections for metastatic prostate cancer.

Service provider: University of Chicago Medicine, a 900-physician nonprofit system that includes an 811-bed medical center, a suburban hospital, the Pritzker School of Medicine, and outpatient clinics and physician offices throughout the Chicago area.

Total bill: $73,812 for the two shots ($35,414 for the first, $38,398 for the second), including lab work and physician charges. United Healthcare’s negotiated rate for the two shots plus associated fees was $27,568, of which the insurer paid $19,567. After Mr. Hinds haggled with the hospital and insurer for more than a year, his share of the bills was determined to be nearly $7,000.

What gives: The first issue is unrelenting price increases on old drugs that have remained branded as manufacturers find ways to extend patents for decades and maintain sales through marketing.

Though Lupron was invented in 1973, its manufacturer got patent extensions in 1989 by offering a slow-release version. Drugmakers commonly use this tactic to extend their exclusive rights to sell a product.

The development of Lupron Depot as an intramuscular shot that suppressed testosterone for months at a time improved patient compliance and also enabled its maker, Abbott Laboratories, and its Japanese partner, Takeda, to extend their patents on the drug into the 2000s, said Gerald Weisberg, MD, a former Abbott scientist who has been critical of the company’s pricing policies.

In subsequent years, Abbott and Takeda, in a joint venture called TAP Pharmaceuticals, steadily marked up the price of their slow-release product. In 2000, the average wholesale U.S. price for a 3-month shot was $1,245; currently that figure is $5,866. (It is manufactured in the United States by AbbVie now.)

In the United Kingdom, where health care is generally free and Takeda sells the drug under the name Prostap, all physicians can purchase a 3-month dose for about $260.

It’s likely that Chicago Medicine, where Mr. Hinds got his shots, paid something close to the British price. That’s because the health system’s hospital on Chicago’s South Side participates in a federal program called 340B, which allows hospitals that serve low-income populations to purchase drugs at deep discounts.

Lupron Depot is given as a simple injection into the muscle. It takes minutes for a nurse or doctor to administer. Yet hospital systems like Chicago Medicine can and typically do charge lavishly for such services, to enhance revenue, said Morgan Henderson, principal data scientist at the Hilltop Institute at the University of Maryland-Baltimore County. Chicago Medicine declined to say what it paid for the drug.

While U.S. drugmakers can price their drugs however they please, TAP has gotten into trouble for its Lupron sales policies in the past. In 2001, after a Justice Department probe, it paid an $875 million settlement for illegally stimulating sales by giving urologists free and discounted vials of the drug while enabling them to charge Medicare full price.

Since then, many other drugs aimed at lowering testosterone levels have entered the market, including a pill, relugolix (Orgovyx). So why wouldn’t a patient use them?

Lupron Depot is long acting, is easy to prepare and store, and employs a small needle, which some patients prefer, said Brian McNeil, MD, chief of urology at University Hospital of Brooklyn. Orgovyx is convenient, but “a patient has to be very compliant. They have to take it every day around the same time,” he said. “Some people just forget.”

But there is another important factor that may well explain Lupron Depot’s ongoing popularity among medical providers: Doctors and hospitals can earn tens of thousands of dollars each visit by marking up its price and administration fees – as they did with Mr. Hinds. If they merely write a prescription for a drug that can be taken at home, they earn nothing.

Asked about this high patient charge and the possibility of using alternatives, United spokesperson Maria Gordon Shydlo said payment was “appropriately based on the hospital’s contract and the member’s benefit plan,” adding that the insurer encourages customers to shop around for the best quality and price.

Resolution: In addition to leaving Mr. Hinds listless, the Lupron Depot shots were, literally, a pain in the rear end. “Each time he was miserable for 2 weeks,” Dr. Tenore said. After looking over his first bill for the Lupron shot, Dr. Tenore told Mr. Hinds he should ask his doctor whether there was a less expensive drug that was easier to take.

After the second shot, in August 2021, a pharmacist told him he could instead receive the pill. His doctor prescribed Mr. Hinds 3 months’ worth of Orgovyx last November, for which he paid $216 and the insurer paid over $6,000. The drug’s list price is about $2,700 a month. There is evidence that Orgovyx works a little better than leuprolide.

Orgovyx was a “no-brainer,” Mr. Hinds said. “Why would you want a sore ass for two weeks when you can take a pill that kicks in sooner, functions the same way, and clears your body of testosterone faster?”

While Orgovyx is increasingly used for prostate cancer, Lupron and other injections usually remain the standard of care, hospital spokesperson Ashley Heher said. Clinicians “work with patients to determine what treatments are the most medically effective and, when necessary, to find reasonable alternatives that may be less financially burdensome due to insurance coverage limitations.”

Mr. Hinds was baffled by the size of the charges. During months of phone calls and emails, the hospital reversed and then reapplied part of the charge, and then in July agreed to a $666.34 monthly payment plan. After Hinds had made two payments, however, the hospital announced Aug. 29 it was canceling the agreement and sending the remainder of his bill to a collection agency. Two weeks later, the hospital reinstated the payment plan – after KHN asked about the cancellation.

As for Mr. Hinds, he remains active, though his bike rides have been shortened from 50 or 60 miles to about 30, he said.

He’s grateful to have Dr. Tenore as a free consultant and empathizes with those who lack a knowledgeable guide through their disease and health care’s financial maze.

“I’ve got Dr. Josie as an advocate who knows the system,” Mr. Hinds said.

The takeaway: First tip: If you are prescribed an infusion or injection, ask your physician if there are cheaper oral medications to treat your condition. Also, many drugs that are given by injection – ones that are given “subcutaneously,” rather than into a muscle – can be administered by a patient at home, avoiding hefty administration fees. Drugs like Dupixent for eczema fall into this category.

Keep in mind that where you get treatment could make a big difference in your charges: A study found that leading U.S. cancer centers charge enormous markups to private insurers for drug injections or infusions. Another study found that hospital systems charge an average of 86% more than private clinics for cancer drug infusions. And the percentage of cancer infusions done in hospital-operated clinics increased from 6% in 2004 to 43% in 2014, and has grown since.

Under a law that took effect in 2021, hospitals are required to list their charges, though they currently do so in a way that is not user friendly. But it’s worth taking a look at the price list – the hospital chargemaster – to try to decipher the pricing and markup for your medicine. If you’re about to get an injection, infusion, or procedure done in a hospital system, ask ahead of time for an estimate of what you will owe.

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

Just when we thought this holiday season, finally, would be the back-to-normal one, some infectious disease experts are warning that a so-called “tripledemic” – influenza, COVID-19, and RSV – may be in the forecast.

The warning isn’t without basis. 

The flu season has gotten an early start. As of Oct. 21, early increases in seasonal flu activity have been reported in most of the country, the Centers for Disease Control and Prevention said, with the southeast and south-central areas having the highest activity levels. 

Children’s hospitals and EDs are seeing a surge in children with RSV.

COVID-19 cases are trending down, according to the CDC, but epidemiologists – scientists who study disease outbreaks – always have their eyes on emerging variants. 

Predicting exactly when cases will peak is difficult, said Justin Lessler, PhD, a professor of epidemiology at the University of North Carolina at Chapel Hill. Dr. Lessler is on the coordinating team for the COVID-19 Scenario Modeling Hub, which aims to predict the course COVID-19, and the Flu Scenario Modeling Hub, which does the same for influenza.

For COVID-19, some models are predicting some spikes before Christmas, he said, and others see a new wave in 2023. For the flu, the model is predicting an earlier-than-usual start, as the CDC has reported.  

While flu activity is relatively low, the CDC said, the season is off to an early start. For the week ending Oct. 21, 1,674 patients were hospitalized for flu, higher than in the summer months but fewer than the 2,675 hospitalizations for the week of May 15, 2022. 

As of Oct. 20, COVID-19 cases have declined 12% over the last 2 weeks, nationwide. But hospitalizations are up 10% in much of the Northeast, The New York Times reports, and the improvement in cases and deaths has been slowing down. 

As of Oct. 15, 15% of RSV tests reported nationwide were positive, compared with about 11% at that time in 2021, the CDC said. The surveillance collects information from 75 counties in 12 states. 

Experts point out that the viruses – all three are respiratory viruses – are simply playing catchup. 

“They spread the same way and along with lots of other viruses, and you tend to see an increase in them during the cold months,” said Timothy Brewer, MD, professor of medicine and epidemiology at UCLA.

The increase in all three viruses “is almost predictable at this point in the pandemic,” said Dean Blumberg, MD, a professor and chief of pediatric infectious diseases at the University of California Davis Health. “All the respiratory viruses are out of whack.” 

Last year, RSV cases were up, too, and began to appear very early, he said, in the summer instead of in the cooler months. Flu also appeared early in 2021, as it has in 2022. 

That contrasts with the flu season of 2020-2021, when COVID precautions were nearly universal, and cases were down. At UC Davis, “we didn’t have one pediatric admission due to influenza in the 2020-2021 [flu] season,” Dr. Blumberg said. 

The number of pediatric flu deaths usually range from 37 to 199 per year, according to CDC records. But in the 2020-2021 season, the CDC recorded one pediatric flu death in the U.S.

Both children and adults have had less contact with others the past two seasons, Dr. Blumberg said, “and they don’t get the immunity they got with those infections [previously]. That’s why we are seeing out-of-season, early season [viruses].” 

Eventually, he said, the cases of flu and RSV will return to previous levels. “It could be as soon as next year,” Dr. Blumberg said. And COVID-19, hopefully, will become like influenza, he said.

“RSV has always come around in the fall and winter,” said Elizabeth Murray, DO, a pediatric emergency medicine doctor at the University of Rochester (N.Y.) Medical Center and a spokesperson for the American Academy of Pediatrics. In 2022, children are back in school and for the most part not masking. “It’s a perfect storm for all the germs to spread now. They’ve just been waiting for their opportunity to come back.”
 

Self-care vs. not

RSV can pose a risk for anyone, but most at risk are children under age 5, especially infants under age 1, and adults over age 65. There is no vaccine for it. Symptoms include a runny nose, decreased appetite, coughing, sneezing, fever, and wheezing. But in young infants, there may only be decreased activity, crankiness, and breathing issues, the CDC said.

Keep an eye on the breathing if RSV is suspected, Dr. Murray tells parents. If your child can’t breathe easily, is unable to lie down comfortably, can’t speak clearly, or is sucking in the chest muscles to breathe, get medical help. Most kids with RSV can stay home and recover, she said, but often will need to be checked by a medical professional.

She advises against getting an oximeter to measure oxygen levels for home use. “They are often not accurate,” she said. If in doubt about how serious your child’s symptoms are, “don’t wait it out,” and don’t hesitate to call 911.

Symptoms of flu, COVID, and RSV can overlap. But each can involve breathing problems, which can be an emergency. 

“It’s important to seek medical attention for any concerning symptoms, but especially severe shortness of breath or difficulty breathing, as these could signal the need for supplemental oxygen or other emergency interventions,” said Mandy De Vries, a respiratory therapist and director of education at the American Association for Respiratory Care. Inhalation treatment or mechanical ventilation may be needed for severe respiratory issues.
 

Precautions

To avoid the tripledemic – or any single infection – Timothy Brewer, MD, a professor of medicine and epidemiology at the University of California, Los Angeles, suggests some familiar measures: “Stay home if you’re feeling sick. Make sure you are up to date on your vaccinations. Wear a mask indoors.”

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

Just when we thought this holiday season, finally, would be the back-to-normal one, some infectious disease experts are warning that a so-called “tripledemic” – influenza, COVID-19, and RSV – may be in the forecast.

The warning isn’t without basis. 

The flu season has gotten an early start. As of Oct. 21, early increases in seasonal flu activity have been reported in most of the country, the Centers for Disease Control and Prevention said, with the southeast and south-central areas having the highest activity levels. 

Children’s hospitals and EDs are seeing a surge in children with RSV.

COVID-19 cases are trending down, according to the CDC, but epidemiologists – scientists who study disease outbreaks – always have their eyes on emerging variants. 

Predicting exactly when cases will peak is difficult, said Justin Lessler, PhD, a professor of epidemiology at the University of North Carolina at Chapel Hill. Dr. Lessler is on the coordinating team for the COVID-19 Scenario Modeling Hub, which aims to predict the course COVID-19, and the Flu Scenario Modeling Hub, which does the same for influenza.

For COVID-19, some models are predicting some spikes before Christmas, he said, and others see a new wave in 2023. For the flu, the model is predicting an earlier-than-usual start, as the CDC has reported.  

While flu activity is relatively low, the CDC said, the season is off to an early start. For the week ending Oct. 21, 1,674 patients were hospitalized for flu, higher than in the summer months but fewer than the 2,675 hospitalizations for the week of May 15, 2022. 

As of Oct. 20, COVID-19 cases have declined 12% over the last 2 weeks, nationwide. But hospitalizations are up 10% in much of the Northeast, The New York Times reports, and the improvement in cases and deaths has been slowing down. 

As of Oct. 15, 15% of RSV tests reported nationwide were positive, compared with about 11% at that time in 2021, the CDC said. The surveillance collects information from 75 counties in 12 states. 

Experts point out that the viruses – all three are respiratory viruses – are simply playing catchup. 

“They spread the same way and along with lots of other viruses, and you tend to see an increase in them during the cold months,” said Timothy Brewer, MD, professor of medicine and epidemiology at UCLA.

The increase in all three viruses “is almost predictable at this point in the pandemic,” said Dean Blumberg, MD, a professor and chief of pediatric infectious diseases at the University of California Davis Health. “All the respiratory viruses are out of whack.” 

Last year, RSV cases were up, too, and began to appear very early, he said, in the summer instead of in the cooler months. Flu also appeared early in 2021, as it has in 2022. 

That contrasts with the flu season of 2020-2021, when COVID precautions were nearly universal, and cases were down. At UC Davis, “we didn’t have one pediatric admission due to influenza in the 2020-2021 [flu] season,” Dr. Blumberg said. 

The number of pediatric flu deaths usually range from 37 to 199 per year, according to CDC records. But in the 2020-2021 season, the CDC recorded one pediatric flu death in the U.S.

Both children and adults have had less contact with others the past two seasons, Dr. Blumberg said, “and they don’t get the immunity they got with those infections [previously]. That’s why we are seeing out-of-season, early season [viruses].” 

Eventually, he said, the cases of flu and RSV will return to previous levels. “It could be as soon as next year,” Dr. Blumberg said. And COVID-19, hopefully, will become like influenza, he said.

“RSV has always come around in the fall and winter,” said Elizabeth Murray, DO, a pediatric emergency medicine doctor at the University of Rochester (N.Y.) Medical Center and a spokesperson for the American Academy of Pediatrics. In 2022, children are back in school and for the most part not masking. “It’s a perfect storm for all the germs to spread now. They’ve just been waiting for their opportunity to come back.”
 

Self-care vs. not

RSV can pose a risk for anyone, but most at risk are children under age 5, especially infants under age 1, and adults over age 65. There is no vaccine for it. Symptoms include a runny nose, decreased appetite, coughing, sneezing, fever, and wheezing. But in young infants, there may only be decreased activity, crankiness, and breathing issues, the CDC said.

Keep an eye on the breathing if RSV is suspected, Dr. Murray tells parents. If your child can’t breathe easily, is unable to lie down comfortably, can’t speak clearly, or is sucking in the chest muscles to breathe, get medical help. Most kids with RSV can stay home and recover, she said, but often will need to be checked by a medical professional.

She advises against getting an oximeter to measure oxygen levels for home use. “They are often not accurate,” she said. If in doubt about how serious your child’s symptoms are, “don’t wait it out,” and don’t hesitate to call 911.

Symptoms of flu, COVID, and RSV can overlap. But each can involve breathing problems, which can be an emergency. 

“It’s important to seek medical attention for any concerning symptoms, but especially severe shortness of breath or difficulty breathing, as these could signal the need for supplemental oxygen or other emergency interventions,” said Mandy De Vries, a respiratory therapist and director of education at the American Association for Respiratory Care. Inhalation treatment or mechanical ventilation may be needed for severe respiratory issues.
 

Precautions

To avoid the tripledemic – or any single infection – Timothy Brewer, MD, a professor of medicine and epidemiology at the University of California, Los Angeles, suggests some familiar measures: “Stay home if you’re feeling sick. Make sure you are up to date on your vaccinations. Wear a mask indoors.”

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

Just when we thought this holiday season, finally, would be the back-to-normal one, some infectious disease experts are warning that a so-called “tripledemic” – influenza, COVID-19, and RSV – may be in the forecast.

The warning isn’t without basis. 

The flu season has gotten an early start. As of Oct. 21, early increases in seasonal flu activity have been reported in most of the country, the Centers for Disease Control and Prevention said, with the southeast and south-central areas having the highest activity levels. 

Children’s hospitals and EDs are seeing a surge in children with RSV.

COVID-19 cases are trending down, according to the CDC, but epidemiologists – scientists who study disease outbreaks – always have their eyes on emerging variants. 

Predicting exactly when cases will peak is difficult, said Justin Lessler, PhD, a professor of epidemiology at the University of North Carolina at Chapel Hill. Dr. Lessler is on the coordinating team for the COVID-19 Scenario Modeling Hub, which aims to predict the course COVID-19, and the Flu Scenario Modeling Hub, which does the same for influenza.

For COVID-19, some models are predicting some spikes before Christmas, he said, and others see a new wave in 2023. For the flu, the model is predicting an earlier-than-usual start, as the CDC has reported.  

While flu activity is relatively low, the CDC said, the season is off to an early start. For the week ending Oct. 21, 1,674 patients were hospitalized for flu, higher than in the summer months but fewer than the 2,675 hospitalizations for the week of May 15, 2022. 

As of Oct. 20, COVID-19 cases have declined 12% over the last 2 weeks, nationwide. But hospitalizations are up 10% in much of the Northeast, The New York Times reports, and the improvement in cases and deaths has been slowing down. 

As of Oct. 15, 15% of RSV tests reported nationwide were positive, compared with about 11% at that time in 2021, the CDC said. The surveillance collects information from 75 counties in 12 states. 

Experts point out that the viruses – all three are respiratory viruses – are simply playing catchup. 

“They spread the same way and along with lots of other viruses, and you tend to see an increase in them during the cold months,” said Timothy Brewer, MD, professor of medicine and epidemiology at UCLA.

The increase in all three viruses “is almost predictable at this point in the pandemic,” said Dean Blumberg, MD, a professor and chief of pediatric infectious diseases at the University of California Davis Health. “All the respiratory viruses are out of whack.” 

Last year, RSV cases were up, too, and began to appear very early, he said, in the summer instead of in the cooler months. Flu also appeared early in 2021, as it has in 2022. 

That contrasts with the flu season of 2020-2021, when COVID precautions were nearly universal, and cases were down. At UC Davis, “we didn’t have one pediatric admission due to influenza in the 2020-2021 [flu] season,” Dr. Blumberg said. 

The number of pediatric flu deaths usually range from 37 to 199 per year, according to CDC records. But in the 2020-2021 season, the CDC recorded one pediatric flu death in the U.S.

Both children and adults have had less contact with others the past two seasons, Dr. Blumberg said, “and they don’t get the immunity they got with those infections [previously]. That’s why we are seeing out-of-season, early season [viruses].” 

Eventually, he said, the cases of flu and RSV will return to previous levels. “It could be as soon as next year,” Dr. Blumberg said. And COVID-19, hopefully, will become like influenza, he said.

“RSV has always come around in the fall and winter,” said Elizabeth Murray, DO, a pediatric emergency medicine doctor at the University of Rochester (N.Y.) Medical Center and a spokesperson for the American Academy of Pediatrics. In 2022, children are back in school and for the most part not masking. “It’s a perfect storm for all the germs to spread now. They’ve just been waiting for their opportunity to come back.”
 

Self-care vs. not

RSV can pose a risk for anyone, but most at risk are children under age 5, especially infants under age 1, and adults over age 65. There is no vaccine for it. Symptoms include a runny nose, decreased appetite, coughing, sneezing, fever, and wheezing. But in young infants, there may only be decreased activity, crankiness, and breathing issues, the CDC said.

Keep an eye on the breathing if RSV is suspected, Dr. Murray tells parents. If your child can’t breathe easily, is unable to lie down comfortably, can’t speak clearly, or is sucking in the chest muscles to breathe, get medical help. Most kids with RSV can stay home and recover, she said, but often will need to be checked by a medical professional.

She advises against getting an oximeter to measure oxygen levels for home use. “They are often not accurate,” she said. If in doubt about how serious your child’s symptoms are, “don’t wait it out,” and don’t hesitate to call 911.

Symptoms of flu, COVID, and RSV can overlap. But each can involve breathing problems, which can be an emergency. 

“It’s important to seek medical attention for any concerning symptoms, but especially severe shortness of breath or difficulty breathing, as these could signal the need for supplemental oxygen or other emergency interventions,” said Mandy De Vries, a respiratory therapist and director of education at the American Association for Respiratory Care. Inhalation treatment or mechanical ventilation may be needed for severe respiratory issues.
 

Precautions

To avoid the tripledemic – or any single infection – Timothy Brewer, MD, a professor of medicine and epidemiology at the University of California, Los Angeles, suggests some familiar measures: “Stay home if you’re feeling sick. Make sure you are up to date on your vaccinations. Wear a mask indoors.”

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

Doctor, doctor, gimme the news. I got a bad case of misidentifying you

There are a lot of medical specialties out there. A lot. Everything from allergists to urologists, with something like 150 subspecialties grouped in among the larger specialties. Can you name every one? Do you know what they do?

The point is, telling a patient or anyone in the general public that you’re an ophthalmologist may not be as helpful as you might think, if a recent study is to be believed. In a survey of 204 adults, conducted at the Minnesota State Fair of all places, researchers asked volunteers to define 14 different specialties, as well as five medical seniority titles.

Minerva Studio/ThinkStock

The results were less than stellar. While more than 90% of people correctly defined what cardiologists and dermatologists do, 6 of the other 12 specialists were correctly identified by less than half of those surveyed. Nephrology was at the bottom, correctly identified by just 20% of the fair-attending public, followed by internists (21%), intensivists (29%), hospitalists (31%), pulmonologists (43%), and neonatologists at 48%. The hospitalists are particularly concerning. They’re doctors, but in hospitals. How hard is that? (Yes, it’s obviously more complicated than that, but still.)

The general public didn’t fare much better when it came to correctly lining up the order of progression from medical student to attending. Just 12% managed to place all five in the correct order of med student, intern, senior resident, fellow, then attending, with senior resident proving especially troublesome. More than 40% put senior resident at the end, compared with 27% for attending. Which does make a certain amount of sense, since it has senior in the name.

While the results speak for themselves – maybe elaborate on what the heck your fancy title actually means – it’s too bad the researchers didn’t throw in something really tricky. If two-thirds of the population can’t identify a hospitalist, just imagine how many people would misidentify an otolaryngologist.
 

Beach-to-table sand could fight obesity

People are always looking for the new weight loss solution. Whether it’s to just look good in a new pair of jeans or reduce the risk of cardiovascular disease, there are millions of diets and exercise routines out here. We’re here to tell you that the next new therapy to reduce fat comes from a very unsuspecting place: Sand.

David Stanley

Like sand from the beach and desert, sand? Well, yes and no.

The research involved engineered porous silica particles made from sand that are designed to have a high surface area. Investigators used a two-step GI model in which gastric digestion was modeled for 30 minutes, followed by a 60-minute intestinal phase, to show that the porous silica particles helped prevent fat and sugar adsorption within the GI tract.

By mimicking the gastrointestinal environment during digestion of a high-fat, high-carb meal, the researchers found that the porous silica created an “anti-obesity effect” by restricting the adsorption of those fats and carbohydrates.

Okay, but how is that on the tummy? Much gentler on the stomach than a drug such as orlistat, said senior researcher Paul Joyce, PhD, of the University of South Australia, Adelaide, who noted the lack of effective therapies without side effects, such as bloating, diarrhea, and abdominal pain, that deter people from treatment.

Obesity affects over 1.9 billion people worldwide, so the researchers think this could be a breakthrough. Reducing obesity may be one of the most preventable ways to reduce the risk of type 2 diabetes, heart disease, and other weight-related chronic conditions. A treatment solution this simple could be the answer to this global health crisis.

Who would have thought the solution would be as simple as sand? But how would the sand get in our stomachs? Do we sprinkle it on our food? Mix it in during cooking? Or will the sand come in pill form? We sure hope it’s that third one.
 

I am Reliebo. I am here to help you

Halloween is almost here, and the LOTME staff has been trying to make the office look as scary as possible: Headless vampires, ghost clowns, Ted Cruz, gray tombstones, pink hearts, green clovers, red balloons. Wait a second, those last three are Lucky Charms marshmallows, aren’t they? We’ll use those some other time.

University of Tsukuba

What are we not using to decorate? Well, besides marshmallows from cereal, we’re not using Reliebo. That’s what we’re not using. Reliebo is a cute little fuzzy robot, and is not at all scary. Reliebo was designed to be the opposite of scary. Reliebo “may reduce fear as well as alleviate the perception of pain during medical treatments, including vaccinations,” senior author Fumihide Tanaka, PhD, of the University of Tsukuba (Japan) said in a written statement.

The soft, fur-covered robot contains small airbags that can inflate in response to hand movements. When study participants were subjected to a moderate heat stimulus on one arm, those who held the robot with the other arm experienced less pain than those who did not have a Reliebo.

The results also were encouraging when Dr. Tanaka and associates measured the levels of oxytocin and cortisol (biomarkers for stress) from the subjects’ saliva samples and evaluated their fear of injections and their psychological state before and after the experiments.

After looking at that photo of Reliebo for a while, though, we have to admit that we’re having a bit of a rethink about its cuteness. Is it cute, or weird-looking? An office full of fuzzy little inflating robots just could be seriously creepy. Please don’t tell the rest of the staff about this. We want to surprise them on Monday.

Doctor, doctor, gimme the news. I got a bad case of misidentifying you

There are a lot of medical specialties out there. A lot. Everything from allergists to urologists, with something like 150 subspecialties grouped in among the larger specialties. Can you name every one? Do you know what they do?

The point is, telling a patient or anyone in the general public that you’re an ophthalmologist may not be as helpful as you might think, if a recent study is to be believed. In a survey of 204 adults, conducted at the Minnesota State Fair of all places, researchers asked volunteers to define 14 different specialties, as well as five medical seniority titles.

Minerva Studio/ThinkStock

The results were less than stellar. While more than 90% of people correctly defined what cardiologists and dermatologists do, 6 of the other 12 specialists were correctly identified by less than half of those surveyed. Nephrology was at the bottom, correctly identified by just 20% of the fair-attending public, followed by internists (21%), intensivists (29%), hospitalists (31%), pulmonologists (43%), and neonatologists at 48%. The hospitalists are particularly concerning. They’re doctors, but in hospitals. How hard is that? (Yes, it’s obviously more complicated than that, but still.)

The general public didn’t fare much better when it came to correctly lining up the order of progression from medical student to attending. Just 12% managed to place all five in the correct order of med student, intern, senior resident, fellow, then attending, with senior resident proving especially troublesome. More than 40% put senior resident at the end, compared with 27% for attending. Which does make a certain amount of sense, since it has senior in the name.

While the results speak for themselves – maybe elaborate on what the heck your fancy title actually means – it’s too bad the researchers didn’t throw in something really tricky. If two-thirds of the population can’t identify a hospitalist, just imagine how many people would misidentify an otolaryngologist.
 

Beach-to-table sand could fight obesity

People are always looking for the new weight loss solution. Whether it’s to just look good in a new pair of jeans or reduce the risk of cardiovascular disease, there are millions of diets and exercise routines out here. We’re here to tell you that the next new therapy to reduce fat comes from a very unsuspecting place: Sand.

David Stanley

Like sand from the beach and desert, sand? Well, yes and no.

The research involved engineered porous silica particles made from sand that are designed to have a high surface area. Investigators used a two-step GI model in which gastric digestion was modeled for 30 minutes, followed by a 60-minute intestinal phase, to show that the porous silica particles helped prevent fat and sugar adsorption within the GI tract.

By mimicking the gastrointestinal environment during digestion of a high-fat, high-carb meal, the researchers found that the porous silica created an “anti-obesity effect” by restricting the adsorption of those fats and carbohydrates.

Okay, but how is that on the tummy? Much gentler on the stomach than a drug such as orlistat, said senior researcher Paul Joyce, PhD, of the University of South Australia, Adelaide, who noted the lack of effective therapies without side effects, such as bloating, diarrhea, and abdominal pain, that deter people from treatment.

Obesity affects over 1.9 billion people worldwide, so the researchers think this could be a breakthrough. Reducing obesity may be one of the most preventable ways to reduce the risk of type 2 diabetes, heart disease, and other weight-related chronic conditions. A treatment solution this simple could be the answer to this global health crisis.

Who would have thought the solution would be as simple as sand? But how would the sand get in our stomachs? Do we sprinkle it on our food? Mix it in during cooking? Or will the sand come in pill form? We sure hope it’s that third one.
 

I am Reliebo. I am here to help you

Halloween is almost here, and the LOTME staff has been trying to make the office look as scary as possible: Headless vampires, ghost clowns, Ted Cruz, gray tombstones, pink hearts, green clovers, red balloons. Wait a second, those last three are Lucky Charms marshmallows, aren’t they? We’ll use those some other time.

University of Tsukuba

What are we not using to decorate? Well, besides marshmallows from cereal, we’re not using Reliebo. That’s what we’re not using. Reliebo is a cute little fuzzy robot, and is not at all scary. Reliebo was designed to be the opposite of scary. Reliebo “may reduce fear as well as alleviate the perception of pain during medical treatments, including vaccinations,” senior author Fumihide Tanaka, PhD, of the University of Tsukuba (Japan) said in a written statement.

The soft, fur-covered robot contains small airbags that can inflate in response to hand movements. When study participants were subjected to a moderate heat stimulus on one arm, those who held the robot with the other arm experienced less pain than those who did not have a Reliebo.

The results also were encouraging when Dr. Tanaka and associates measured the levels of oxytocin and cortisol (biomarkers for stress) from the subjects’ saliva samples and evaluated their fear of injections and their psychological state before and after the experiments.

After looking at that photo of Reliebo for a while, though, we have to admit that we’re having a bit of a rethink about its cuteness. Is it cute, or weird-looking? An office full of fuzzy little inflating robots just could be seriously creepy. Please don’t tell the rest of the staff about this. We want to surprise them on Monday.

Doctor, doctor, gimme the news. I got a bad case of misidentifying you

There are a lot of medical specialties out there. A lot. Everything from allergists to urologists, with something like 150 subspecialties grouped in among the larger specialties. Can you name every one? Do you know what they do?

The point is, telling a patient or anyone in the general public that you’re an ophthalmologist may not be as helpful as you might think, if a recent study is to be believed. In a survey of 204 adults, conducted at the Minnesota State Fair of all places, researchers asked volunteers to define 14 different specialties, as well as five medical seniority titles.

Minerva Studio/ThinkStock

The results were less than stellar. While more than 90% of people correctly defined what cardiologists and dermatologists do, 6 of the other 12 specialists were correctly identified by less than half of those surveyed. Nephrology was at the bottom, correctly identified by just 20% of the fair-attending public, followed by internists (21%), intensivists (29%), hospitalists (31%), pulmonologists (43%), and neonatologists at 48%. The hospitalists are particularly concerning. They’re doctors, but in hospitals. How hard is that? (Yes, it’s obviously more complicated than that, but still.)

The general public didn’t fare much better when it came to correctly lining up the order of progression from medical student to attending. Just 12% managed to place all five in the correct order of med student, intern, senior resident, fellow, then attending, with senior resident proving especially troublesome. More than 40% put senior resident at the end, compared with 27% for attending. Which does make a certain amount of sense, since it has senior in the name.

While the results speak for themselves – maybe elaborate on what the heck your fancy title actually means – it’s too bad the researchers didn’t throw in something really tricky. If two-thirds of the population can’t identify a hospitalist, just imagine how many people would misidentify an otolaryngologist.
 

Beach-to-table sand could fight obesity

People are always looking for the new weight loss solution. Whether it’s to just look good in a new pair of jeans or reduce the risk of cardiovascular disease, there are millions of diets and exercise routines out here. We’re here to tell you that the next new therapy to reduce fat comes from a very unsuspecting place: Sand.

David Stanley

Like sand from the beach and desert, sand? Well, yes and no.

The research involved engineered porous silica particles made from sand that are designed to have a high surface area. Investigators used a two-step GI model in which gastric digestion was modeled for 30 minutes, followed by a 60-minute intestinal phase, to show that the porous silica particles helped prevent fat and sugar adsorption within the GI tract.

By mimicking the gastrointestinal environment during digestion of a high-fat, high-carb meal, the researchers found that the porous silica created an “anti-obesity effect” by restricting the adsorption of those fats and carbohydrates.

Okay, but how is that on the tummy? Much gentler on the stomach than a drug such as orlistat, said senior researcher Paul Joyce, PhD, of the University of South Australia, Adelaide, who noted the lack of effective therapies without side effects, such as bloating, diarrhea, and abdominal pain, that deter people from treatment.

Obesity affects over 1.9 billion people worldwide, so the researchers think this could be a breakthrough. Reducing obesity may be one of the most preventable ways to reduce the risk of type 2 diabetes, heart disease, and other weight-related chronic conditions. A treatment solution this simple could be the answer to this global health crisis.

Who would have thought the solution would be as simple as sand? But how would the sand get in our stomachs? Do we sprinkle it on our food? Mix it in during cooking? Or will the sand come in pill form? We sure hope it’s that third one.
 

I am Reliebo. I am here to help you

Halloween is almost here, and the LOTME staff has been trying to make the office look as scary as possible: Headless vampires, ghost clowns, Ted Cruz, gray tombstones, pink hearts, green clovers, red balloons. Wait a second, those last three are Lucky Charms marshmallows, aren’t they? We’ll use those some other time.

University of Tsukuba

What are we not using to decorate? Well, besides marshmallows from cereal, we’re not using Reliebo. That’s what we’re not using. Reliebo is a cute little fuzzy robot, and is not at all scary. Reliebo was designed to be the opposite of scary. Reliebo “may reduce fear as well as alleviate the perception of pain during medical treatments, including vaccinations,” senior author Fumihide Tanaka, PhD, of the University of Tsukuba (Japan) said in a written statement.

The soft, fur-covered robot contains small airbags that can inflate in response to hand movements. When study participants were subjected to a moderate heat stimulus on one arm, those who held the robot with the other arm experienced less pain than those who did not have a Reliebo.

The results also were encouraging when Dr. Tanaka and associates measured the levels of oxytocin and cortisol (biomarkers for stress) from the subjects’ saliva samples and evaluated their fear of injections and their psychological state before and after the experiments.

After looking at that photo of Reliebo for a while, though, we have to admit that we’re having a bit of a rethink about its cuteness. Is it cute, or weird-looking? An office full of fuzzy little inflating robots just could be seriously creepy. Please don’t tell the rest of the staff about this. We want to surprise them on Monday.

When 32-year-old Brittany Dicks was diagnosed with stage II triple negative breast cancer in January 2022, she wasn’t worried about the cost of treatment. A medical assistant in Charleston, S.C., Ms. Dicks had full-time employment with health benefits.

But when she wasn’t able to work for several months because of chemotherapy and its side effects, Ms. Dicks lost her job. Her health insurance coverage ended in May. And although she filed for Medicaid at the beginning of June, it wasn’t approved until September.

Meanwhile, Ms. Dicks still needed treatment. She estimates that she ran up close to $20,000 in medical debt while finishing chemotherapy during the 4 months she was uninsured.

The surgeon she had seen since her diagnosis terminated her care when she could no longer pay her bills. That left her delaying a much-needed mastectomy.

“I don’t sleep at night,” said Ms. Dicks, a single mother of two young kids, ages 3 and 11. “Mentally, I’m drained. Just because I have cancer, doesn’t mean the bills aren’t due every month.”

As soon as she felt well enough over the summer, she started working as a part-time delivery driver for DoorDash to help pay for food and gas.

But that was just a Band-Aid. Even when her new insurance kicked in, covering the costs of daily life remained a struggle.

Ms. Dicks is still in deep medical debt. Her Medicaid has covered new medical expenses, and she hopes Medicaid will reimburse her for the debt she incurred over the summer while she waited for her coverage to kick in. So far, though, Medicaid has not touched her $20,000 debt.

“I fear that I’m not going to be able to dig out of this hole,” Ms. Dicks said.

Researchers who study the financial impacts of cancer have a term for Ms. Dicks’ experience: financial toxicity.

Financial toxicity is a catchall term for the burden many Americans with cancer experience.

“Financial toxicity is a multidimensional concept. There’s both a material burden and a psychosocial one,” said Grace Li Smith, MD, PhD, MPH, a radiation oncologist at the University of Texas MD Anderson Cancer Center, Houston.

Financial toxicity encompasses the direct costs of medical care, including copays, deductibles, and other out-of-pocket expenses for treatment and medications as well as the indirect costs from loss of income or savings associated with cancer care.

Researchers are also now beginning to understand the psychological effects these financial burdens can have on patients and their family.

“Financial toxicity is not unique to the patient,” said Dr. Li Smith. It “very directly impacts the whole family or household.”
 

Stifling financial pressures

Early in her career, Dr. Li Smith was already seeing how her patients’ worries extended beyond their physical disease.

One of Dr. Li Smith’s first patients told her their greatest worry wasn’t whether the treatment would work or what physical toxicity to expect, it was how they would pay for their care.

“There was much more anxiety and true distress about the financial burden than about the treatment itself,” Dr. Li Smith recalled.

This fear about the costs of cancer care is well founded. In the United States, cancer treatment costs reached an estimated $150 billion in 2020 and continue to rise. Patients shoulder a significant portion of that burden – with one study estimating that patients paid $21 billion for their cancer care in 2019.

The burden is often compounded by decreased income. Between 40% and 85% of patients with cancer needed to take time off work or quit their jobs during treatment. And for those, like Dicks, who find themselves with no insurance, out-of-pocket costs can quickly skyrocket.

In fact, one study of newly diagnosed cancer patients over age 50 reported that more than 42% of patients fully depleted their financial assets and around 30% incurred debt by the second year of their diagnosis.

Younger adults may be even more financially vulnerable. A study of patients in Washington found that those under 65 – which represent about half of cancer cases – were two to five times more likely to declare bankruptcy than patients over 65.

Dr. Li Smith and colleagues have found that younger patients aged 18-64 experienced greater monetary hardships, which meant less money for food, worse adherence to medications, as well as greater distress and anxiety overall. In fact, younger adults were over 4.5 times more likely to encounter severe financial toxicity, compared with older adults, and about 4 times more likely to experience severe psychological effects from this burden.

The distress, if left unchecked, can spiral out of control.

Molly MacDonald had just gone through a financially devastating divorce in 2005 when she was diagnosed with breast cancer. Recently out of work and dealing with a $1,300 monthly COBRA premium, the mother of five had no financial safety net. She risked having her car repossessed and her utilities shut off.

“I gave tentative thought to how I could take my life and make it look like an accident,” said Ms. MacDonald. “I thought the kids would be better off without me.”

For some, the loss of income can be even more worrisome than the medical bills. Some patients may go back to work during treatment, often against medical advice.

When Stephanie Caputo, 43, of Monroe, N.J., began treatment for stage III breast cancer in 2021, her physician recommended she stop working. Treatment would make her immunocompromised, and her job in a medical clinic could expose her to harmful pathogens, including the coronavirus.

Ms. Caputo went on disability and received $900 every 2 weeks. But that wasn’t enough to pay her mortgage, let alone cover her other monthly expenses as a single mother of 4 teenagers.

After finishing chemotherapy, and during radiation, Ms. Caputo went back to work, part time, against her doctor’s advice.

“My doctor is telling me I can’t work, but I also can’t have my house go into default,” said Ms. Caputo.

But being on her feet through 12-hour shifts made treatment side effects, especially back and joint pain, kick into overdrive. “The physicality of my job was really difficult to tolerate,” she said.

The physical burden was too great to take on more work, but the extra money also wasn’t enough to keep her afloat. Fortunately, her brother stepped in and covered 6 months of her mortgage payments.
 

Financial toxicity impacts families

Although financial toxicity research to date has largely focused on the patient, researchers are also starting to understand that family members and caregivers often share in the burden.

“We are just at the beginning of realizing that this is a real problem,” said Fumiko Chino, MD, a radiation oncologist at Memorial Sloan Kettering Cancer Center, New York.

Dr. Chino and colleagues recently showed that family members of patients with cancer were more likely to delay or forgo medical care than family members of people without cancer. The study found the effect was greatest among family members of younger adults with cancer.

“The caregiver and family burden related to cancer diagnosis and treatment is really underappreciated,” said Dr. Chino. “Family members and caregivers are neglecting their own health concerns, passing up career opportunities, struggling with financial concerns.”

Dr. Chino speaks from personal experience. When her fiancé, later husband, was diagnosed with neuroendocrine carcinoma in 2005, Dr. Chino quit her job as art director at a television production company to take care of him.

The couple, both in their 20s, struggled to afford his care. Dr. Chino put her own dental, medical, and mental health care on hold. She never, for instance, went to physical therapy to address injuries sustained sleeping in hospital chairs and moving around her husband who was over 6 feet tall. At one point, she walked with a limp.

Dr. Chino’s husband passed away in 2007, and even 15 years later, her injury from sleeping in hospital chairs remains “a significant physical burden,” she said. But like many caregivers “I wasn’t really thinking about my own health.”

Danielle Hadfield, 35, an ED nurse in Rochester, N.Y., also delayed her own care when her mom got sick.

Ms. Hadfield quit her job shortly after her mom was diagnosed with cholangiocarcinoma in August 2020. Ms. Hadfield knew her mom, who lived 3.5 hours away in Albany, N.Y., would need a lot of care in the upcoming months.

“I knew this was going to be the last year or so of her life, and I wanted to be there for her,” said Ms. Hadfield.

When Ms. Hadfield quit her job, she and her husband – who was self-employed – purchased health insurance coverage through the New York state marketplace. The monthly insurance payments for Ms. Hadfield, who was pregnant with her second child, her husband, and their toddler cost as much as the family’s monthly mortgage payments.

In addition to providing childcare for her young daughter and making frequent trips to Albany, Ms. Hadfield began a side business as a legal nurse consultant, working mostly at night, to replace a portion of her lost income. During this time, she began to experience pain attacks that would migrate through her body along with intermittent tongue and facial numbness. She ignored these health issues for nearly a year, until after her mother died in November 2021.

Only after her mother passed away did Ms. Hadfield begin seeking answers to her own pain. In September 2022, she finally got them. She had a nerve condition called small-fiber sensory neuropathy.

But even with a diagnosis, she is still facing more tests to root out the cause and understand the best treatment.
 

Is help out there?

What can physicians do to help patients and families at risk for financial toxicity?

Specific guidelines for dealing with financial toxicity do not exist in most professional guidelines, nor are there standard screening tools to identify it, said Dr. Li Smith.

These gaps put pressure on physicians to ask about financial barriers and concerns, but most do not know how to broach the topic or how to help. “Physicians may not know how to fix the problem or what resources exist,” Dr. Li Smith said.

Patients and family members, on the other hand, are often reluctant to bring up cost with physicians. Some may be ashamed to talk about their financial problems while others may fear doing so will prevent them from being offered the best possible treatments, said Ms. MacDonald.

But, experts say, financial toxicity needs to be dealt with head on. That means involving financial navigators or counselors and social workers who can, for instance, help patients and families find financial support for their basic living expenses.

From a research perspective, more clinical trials should include financial toxicity outcomes, said Joshua Palmer, MD, a radiation oncologist at the University of Michigan, Ann Arbor.

Dr. Palmer and colleagues recently showed that the number of radiation therapy clinical trials including financial toxicity endpoints increased significantly from 2001 to 2020, though the absolute rate of inclusion remains low, at roughly 1.5% of radiation therapy-based clinical trials including financial toxicity endpoints from 2016 to 2020.

“Financial burden is part of the broader discussion about shared decision-making,” said Dr. Palmer.

In shared decision-making, physicians discuss the risks and benefits of different treatment options, empowering the patient to make an informed choice with the physician.

What we want to avoid is patients feeling like they will get inferior care, if they have financial barriers, said Dr. Palmer.

And every little bit can help. In 2006, Ms. MacDonald started the Pink Fund – a nonprofit to help patients with cancer cover nonmedical cost-of-living expenses. Both Ms. Caputo and Ms. Dicks received grants from the Pink Fund. For Ms. Caputo, the funds covered 2 months of car payments and for Ms. Dicks, it covered 2 months of rent.

While the one-time grant was a big help, said Ms. Dicks, “cancer is an everyday thing.” And “we all deserve peace of mind” when trying to heal.

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

When 32-year-old Brittany Dicks was diagnosed with stage II triple negative breast cancer in January 2022, she wasn’t worried about the cost of treatment. A medical assistant in Charleston, S.C., Ms. Dicks had full-time employment with health benefits.

But when she wasn’t able to work for several months because of chemotherapy and its side effects, Ms. Dicks lost her job. Her health insurance coverage ended in May. And although she filed for Medicaid at the beginning of June, it wasn’t approved until September.

Meanwhile, Ms. Dicks still needed treatment. She estimates that she ran up close to $20,000 in medical debt while finishing chemotherapy during the 4 months she was uninsured.

The surgeon she had seen since her diagnosis terminated her care when she could no longer pay her bills. That left her delaying a much-needed mastectomy.

“I don’t sleep at night,” said Ms. Dicks, a single mother of two young kids, ages 3 and 11. “Mentally, I’m drained. Just because I have cancer, doesn’t mean the bills aren’t due every month.”

As soon as she felt well enough over the summer, she started working as a part-time delivery driver for DoorDash to help pay for food and gas.

But that was just a Band-Aid. Even when her new insurance kicked in, covering the costs of daily life remained a struggle.

Ms. Dicks is still in deep medical debt. Her Medicaid has covered new medical expenses, and she hopes Medicaid will reimburse her for the debt she incurred over the summer while she waited for her coverage to kick in. So far, though, Medicaid has not touched her $20,000 debt.

“I fear that I’m not going to be able to dig out of this hole,” Ms. Dicks said.

Researchers who study the financial impacts of cancer have a term for Ms. Dicks’ experience: financial toxicity.

Financial toxicity is a catchall term for the burden many Americans with cancer experience.

“Financial toxicity is a multidimensional concept. There’s both a material burden and a psychosocial one,” said Grace Li Smith, MD, PhD, MPH, a radiation oncologist at the University of Texas MD Anderson Cancer Center, Houston.

Financial toxicity encompasses the direct costs of medical care, including copays, deductibles, and other out-of-pocket expenses for treatment and medications as well as the indirect costs from loss of income or savings associated with cancer care.

Researchers are also now beginning to understand the psychological effects these financial burdens can have on patients and their family.

“Financial toxicity is not unique to the patient,” said Dr. Li Smith. It “very directly impacts the whole family or household.”
 

Stifling financial pressures

Early in her career, Dr. Li Smith was already seeing how her patients’ worries extended beyond their physical disease.

One of Dr. Li Smith’s first patients told her their greatest worry wasn’t whether the treatment would work or what physical toxicity to expect, it was how they would pay for their care.

“There was much more anxiety and true distress about the financial burden than about the treatment itself,” Dr. Li Smith recalled.

This fear about the costs of cancer care is well founded. In the United States, cancer treatment costs reached an estimated $150 billion in 2020 and continue to rise. Patients shoulder a significant portion of that burden – with one study estimating that patients paid $21 billion for their cancer care in 2019.

The burden is often compounded by decreased income. Between 40% and 85% of patients with cancer needed to take time off work or quit their jobs during treatment. And for those, like Dicks, who find themselves with no insurance, out-of-pocket costs can quickly skyrocket.

In fact, one study of newly diagnosed cancer patients over age 50 reported that more than 42% of patients fully depleted their financial assets and around 30% incurred debt by the second year of their diagnosis.

Younger adults may be even more financially vulnerable. A study of patients in Washington found that those under 65 – which represent about half of cancer cases – were two to five times more likely to declare bankruptcy than patients over 65.

Dr. Li Smith and colleagues have found that younger patients aged 18-64 experienced greater monetary hardships, which meant less money for food, worse adherence to medications, as well as greater distress and anxiety overall. In fact, younger adults were over 4.5 times more likely to encounter severe financial toxicity, compared with older adults, and about 4 times more likely to experience severe psychological effects from this burden.

The distress, if left unchecked, can spiral out of control.

Molly MacDonald had just gone through a financially devastating divorce in 2005 when she was diagnosed with breast cancer. Recently out of work and dealing with a $1,300 monthly COBRA premium, the mother of five had no financial safety net. She risked having her car repossessed and her utilities shut off.

“I gave tentative thought to how I could take my life and make it look like an accident,” said Ms. MacDonald. “I thought the kids would be better off without me.”

For some, the loss of income can be even more worrisome than the medical bills. Some patients may go back to work during treatment, often against medical advice.

When Stephanie Caputo, 43, of Monroe, N.J., began treatment for stage III breast cancer in 2021, her physician recommended she stop working. Treatment would make her immunocompromised, and her job in a medical clinic could expose her to harmful pathogens, including the coronavirus.

Ms. Caputo went on disability and received $900 every 2 weeks. But that wasn’t enough to pay her mortgage, let alone cover her other monthly expenses as a single mother of 4 teenagers.

After finishing chemotherapy, and during radiation, Ms. Caputo went back to work, part time, against her doctor’s advice.

“My doctor is telling me I can’t work, but I also can’t have my house go into default,” said Ms. Caputo.

But being on her feet through 12-hour shifts made treatment side effects, especially back and joint pain, kick into overdrive. “The physicality of my job was really difficult to tolerate,” she said.

The physical burden was too great to take on more work, but the extra money also wasn’t enough to keep her afloat. Fortunately, her brother stepped in and covered 6 months of her mortgage payments.
 

Financial toxicity impacts families

Although financial toxicity research to date has largely focused on the patient, researchers are also starting to understand that family members and caregivers often share in the burden.

“We are just at the beginning of realizing that this is a real problem,” said Fumiko Chino, MD, a radiation oncologist at Memorial Sloan Kettering Cancer Center, New York.

Dr. Chino and colleagues recently showed that family members of patients with cancer were more likely to delay or forgo medical care than family members of people without cancer. The study found the effect was greatest among family members of younger adults with cancer.

“The caregiver and family burden related to cancer diagnosis and treatment is really underappreciated,” said Dr. Chino. “Family members and caregivers are neglecting their own health concerns, passing up career opportunities, struggling with financial concerns.”

Dr. Chino speaks from personal experience. When her fiancé, later husband, was diagnosed with neuroendocrine carcinoma in 2005, Dr. Chino quit her job as art director at a television production company to take care of him.

The couple, both in their 20s, struggled to afford his care. Dr. Chino put her own dental, medical, and mental health care on hold. She never, for instance, went to physical therapy to address injuries sustained sleeping in hospital chairs and moving around her husband who was over 6 feet tall. At one point, she walked with a limp.

Dr. Chino’s husband passed away in 2007, and even 15 years later, her injury from sleeping in hospital chairs remains “a significant physical burden,” she said. But like many caregivers “I wasn’t really thinking about my own health.”

Danielle Hadfield, 35, an ED nurse in Rochester, N.Y., also delayed her own care when her mom got sick.

Ms. Hadfield quit her job shortly after her mom was diagnosed with cholangiocarcinoma in August 2020. Ms. Hadfield knew her mom, who lived 3.5 hours away in Albany, N.Y., would need a lot of care in the upcoming months.

“I knew this was going to be the last year or so of her life, and I wanted to be there for her,” said Ms. Hadfield.

When Ms. Hadfield quit her job, she and her husband – who was self-employed – purchased health insurance coverage through the New York state marketplace. The monthly insurance payments for Ms. Hadfield, who was pregnant with her second child, her husband, and their toddler cost as much as the family’s monthly mortgage payments.

In addition to providing childcare for her young daughter and making frequent trips to Albany, Ms. Hadfield began a side business as a legal nurse consultant, working mostly at night, to replace a portion of her lost income. During this time, she began to experience pain attacks that would migrate through her body along with intermittent tongue and facial numbness. She ignored these health issues for nearly a year, until after her mother died in November 2021.

Only after her mother passed away did Ms. Hadfield begin seeking answers to her own pain. In September 2022, she finally got them. She had a nerve condition called small-fiber sensory neuropathy.

But even with a diagnosis, she is still facing more tests to root out the cause and understand the best treatment.
 

Is help out there?

What can physicians do to help patients and families at risk for financial toxicity?

Specific guidelines for dealing with financial toxicity do not exist in most professional guidelines, nor are there standard screening tools to identify it, said Dr. Li Smith.

These gaps put pressure on physicians to ask about financial barriers and concerns, but most do not know how to broach the topic or how to help. “Physicians may not know how to fix the problem or what resources exist,” Dr. Li Smith said.

Patients and family members, on the other hand, are often reluctant to bring up cost with physicians. Some may be ashamed to talk about their financial problems while others may fear doing so will prevent them from being offered the best possible treatments, said Ms. MacDonald.

But, experts say, financial toxicity needs to be dealt with head on. That means involving financial navigators or counselors and social workers who can, for instance, help patients and families find financial support for their basic living expenses.

From a research perspective, more clinical trials should include financial toxicity outcomes, said Joshua Palmer, MD, a radiation oncologist at the University of Michigan, Ann Arbor.

Dr. Palmer and colleagues recently showed that the number of radiation therapy clinical trials including financial toxicity endpoints increased significantly from 2001 to 2020, though the absolute rate of inclusion remains low, at roughly 1.5% of radiation therapy-based clinical trials including financial toxicity endpoints from 2016 to 2020.

“Financial burden is part of the broader discussion about shared decision-making,” said Dr. Palmer.

In shared decision-making, physicians discuss the risks and benefits of different treatment options, empowering the patient to make an informed choice with the physician.

What we want to avoid is patients feeling like they will get inferior care, if they have financial barriers, said Dr. Palmer.

And every little bit can help. In 2006, Ms. MacDonald started the Pink Fund – a nonprofit to help patients with cancer cover nonmedical cost-of-living expenses. Both Ms. Caputo and Ms. Dicks received grants from the Pink Fund. For Ms. Caputo, the funds covered 2 months of car payments and for Ms. Dicks, it covered 2 months of rent.

While the one-time grant was a big help, said Ms. Dicks, “cancer is an everyday thing.” And “we all deserve peace of mind” when trying to heal.

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

When 32-year-old Brittany Dicks was diagnosed with stage II triple negative breast cancer in January 2022, she wasn’t worried about the cost of treatment. A medical assistant in Charleston, S.C., Ms. Dicks had full-time employment with health benefits.

But when she wasn’t able to work for several months because of chemotherapy and its side effects, Ms. Dicks lost her job. Her health insurance coverage ended in May. And although she filed for Medicaid at the beginning of June, it wasn’t approved until September.

Meanwhile, Ms. Dicks still needed treatment. She estimates that she ran up close to $20,000 in medical debt while finishing chemotherapy during the 4 months she was uninsured.

The surgeon she had seen since her diagnosis terminated her care when she could no longer pay her bills. That left her delaying a much-needed mastectomy.

“I don’t sleep at night,” said Ms. Dicks, a single mother of two young kids, ages 3 and 11. “Mentally, I’m drained. Just because I have cancer, doesn’t mean the bills aren’t due every month.”

As soon as she felt well enough over the summer, she started working as a part-time delivery driver for DoorDash to help pay for food and gas.

But that was just a Band-Aid. Even when her new insurance kicked in, covering the costs of daily life remained a struggle.

Ms. Dicks is still in deep medical debt. Her Medicaid has covered new medical expenses, and she hopes Medicaid will reimburse her for the debt she incurred over the summer while she waited for her coverage to kick in. So far, though, Medicaid has not touched her $20,000 debt.

“I fear that I’m not going to be able to dig out of this hole,” Ms. Dicks said.

Researchers who study the financial impacts of cancer have a term for Ms. Dicks’ experience: financial toxicity.

Financial toxicity is a catchall term for the burden many Americans with cancer experience.

“Financial toxicity is a multidimensional concept. There’s both a material burden and a psychosocial one,” said Grace Li Smith, MD, PhD, MPH, a radiation oncologist at the University of Texas MD Anderson Cancer Center, Houston.

Financial toxicity encompasses the direct costs of medical care, including copays, deductibles, and other out-of-pocket expenses for treatment and medications as well as the indirect costs from loss of income or savings associated with cancer care.

Researchers are also now beginning to understand the psychological effects these financial burdens can have on patients and their family.

“Financial toxicity is not unique to the patient,” said Dr. Li Smith. It “very directly impacts the whole family or household.”
 

Stifling financial pressures

Early in her career, Dr. Li Smith was already seeing how her patients’ worries extended beyond their physical disease.

One of Dr. Li Smith’s first patients told her their greatest worry wasn’t whether the treatment would work or what physical toxicity to expect, it was how they would pay for their care.

“There was much more anxiety and true distress about the financial burden than about the treatment itself,” Dr. Li Smith recalled.

This fear about the costs of cancer care is well founded. In the United States, cancer treatment costs reached an estimated $150 billion in 2020 and continue to rise. Patients shoulder a significant portion of that burden – with one study estimating that patients paid $21 billion for their cancer care in 2019.

The burden is often compounded by decreased income. Between 40% and 85% of patients with cancer needed to take time off work or quit their jobs during treatment. And for those, like Dicks, who find themselves with no insurance, out-of-pocket costs can quickly skyrocket.

In fact, one study of newly diagnosed cancer patients over age 50 reported that more than 42% of patients fully depleted their financial assets and around 30% incurred debt by the second year of their diagnosis.

Younger adults may be even more financially vulnerable. A study of patients in Washington found that those under 65 – which represent about half of cancer cases – were two to five times more likely to declare bankruptcy than patients over 65.

Dr. Li Smith and colleagues have found that younger patients aged 18-64 experienced greater monetary hardships, which meant less money for food, worse adherence to medications, as well as greater distress and anxiety overall. In fact, younger adults were over 4.5 times more likely to encounter severe financial toxicity, compared with older adults, and about 4 times more likely to experience severe psychological effects from this burden.

The distress, if left unchecked, can spiral out of control.

Molly MacDonald had just gone through a financially devastating divorce in 2005 when she was diagnosed with breast cancer. Recently out of work and dealing with a $1,300 monthly COBRA premium, the mother of five had no financial safety net. She risked having her car repossessed and her utilities shut off.

“I gave tentative thought to how I could take my life and make it look like an accident,” said Ms. MacDonald. “I thought the kids would be better off without me.”

For some, the loss of income can be even more worrisome than the medical bills. Some patients may go back to work during treatment, often against medical advice.

When Stephanie Caputo, 43, of Monroe, N.J., began treatment for stage III breast cancer in 2021, her physician recommended she stop working. Treatment would make her immunocompromised, and her job in a medical clinic could expose her to harmful pathogens, including the coronavirus.

Ms. Caputo went on disability and received $900 every 2 weeks. But that wasn’t enough to pay her mortgage, let alone cover her other monthly expenses as a single mother of 4 teenagers.

After finishing chemotherapy, and during radiation, Ms. Caputo went back to work, part time, against her doctor’s advice.

“My doctor is telling me I can’t work, but I also can’t have my house go into default,” said Ms. Caputo.

But being on her feet through 12-hour shifts made treatment side effects, especially back and joint pain, kick into overdrive. “The physicality of my job was really difficult to tolerate,” she said.

The physical burden was too great to take on more work, but the extra money also wasn’t enough to keep her afloat. Fortunately, her brother stepped in and covered 6 months of her mortgage payments.
 

Financial toxicity impacts families

Although financial toxicity research to date has largely focused on the patient, researchers are also starting to understand that family members and caregivers often share in the burden.

“We are just at the beginning of realizing that this is a real problem,” said Fumiko Chino, MD, a radiation oncologist at Memorial Sloan Kettering Cancer Center, New York.

Dr. Chino and colleagues recently showed that family members of patients with cancer were more likely to delay or forgo medical care than family members of people without cancer. The study found the effect was greatest among family members of younger adults with cancer.

“The caregiver and family burden related to cancer diagnosis and treatment is really underappreciated,” said Dr. Chino. “Family members and caregivers are neglecting their own health concerns, passing up career opportunities, struggling with financial concerns.”

Dr. Chino speaks from personal experience. When her fiancé, later husband, was diagnosed with neuroendocrine carcinoma in 2005, Dr. Chino quit her job as art director at a television production company to take care of him.

The couple, both in their 20s, struggled to afford his care. Dr. Chino put her own dental, medical, and mental health care on hold. She never, for instance, went to physical therapy to address injuries sustained sleeping in hospital chairs and moving around her husband who was over 6 feet tall. At one point, she walked with a limp.

Dr. Chino’s husband passed away in 2007, and even 15 years later, her injury from sleeping in hospital chairs remains “a significant physical burden,” she said. But like many caregivers “I wasn’t really thinking about my own health.”

Danielle Hadfield, 35, an ED nurse in Rochester, N.Y., also delayed her own care when her mom got sick.

Ms. Hadfield quit her job shortly after her mom was diagnosed with cholangiocarcinoma in August 2020. Ms. Hadfield knew her mom, who lived 3.5 hours away in Albany, N.Y., would need a lot of care in the upcoming months.

“I knew this was going to be the last year or so of her life, and I wanted to be there for her,” said Ms. Hadfield.

When Ms. Hadfield quit her job, she and her husband – who was self-employed – purchased health insurance coverage through the New York state marketplace. The monthly insurance payments for Ms. Hadfield, who was pregnant with her second child, her husband, and their toddler cost as much as the family’s monthly mortgage payments.

In addition to providing childcare for her young daughter and making frequent trips to Albany, Ms. Hadfield began a side business as a legal nurse consultant, working mostly at night, to replace a portion of her lost income. During this time, she began to experience pain attacks that would migrate through her body along with intermittent tongue and facial numbness. She ignored these health issues for nearly a year, until after her mother died in November 2021.

Only after her mother passed away did Ms. Hadfield begin seeking answers to her own pain. In September 2022, she finally got them. She had a nerve condition called small-fiber sensory neuropathy.

But even with a diagnosis, she is still facing more tests to root out the cause and understand the best treatment.
 

Is help out there?

What can physicians do to help patients and families at risk for financial toxicity?

Specific guidelines for dealing with financial toxicity do not exist in most professional guidelines, nor are there standard screening tools to identify it, said Dr. Li Smith.

These gaps put pressure on physicians to ask about financial barriers and concerns, but most do not know how to broach the topic or how to help. “Physicians may not know how to fix the problem or what resources exist,” Dr. Li Smith said.

Patients and family members, on the other hand, are often reluctant to bring up cost with physicians. Some may be ashamed to talk about their financial problems while others may fear doing so will prevent them from being offered the best possible treatments, said Ms. MacDonald.

But, experts say, financial toxicity needs to be dealt with head on. That means involving financial navigators or counselors and social workers who can, for instance, help patients and families find financial support for their basic living expenses.

From a research perspective, more clinical trials should include financial toxicity outcomes, said Joshua Palmer, MD, a radiation oncologist at the University of Michigan, Ann Arbor.

Dr. Palmer and colleagues recently showed that the number of radiation therapy clinical trials including financial toxicity endpoints increased significantly from 2001 to 2020, though the absolute rate of inclusion remains low, at roughly 1.5% of radiation therapy-based clinical trials including financial toxicity endpoints from 2016 to 2020.

“Financial burden is part of the broader discussion about shared decision-making,” said Dr. Palmer.

In shared decision-making, physicians discuss the risks and benefits of different treatment options, empowering the patient to make an informed choice with the physician.

What we want to avoid is patients feeling like they will get inferior care, if they have financial barriers, said Dr. Palmer.

And every little bit can help. In 2006, Ms. MacDonald started the Pink Fund – a nonprofit to help patients with cancer cover nonmedical cost-of-living expenses. Both Ms. Caputo and Ms. Dicks received grants from the Pink Fund. For Ms. Caputo, the funds covered 2 months of car payments and for Ms. Dicks, it covered 2 months of rent.

While the one-time grant was a big help, said Ms. Dicks, “cancer is an everyday thing.” And “we all deserve peace of mind” when trying to heal.

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

The developmentally disabled girl was just 10 years old when Margaret Thew, DNP, medical director of adolescent medicine at Children’s Wisconsin, Milwaukee, helped care for her. Providing that care was not emotionally easy. “Her brother’s friend sexually assaulted her and impregnated her,” Dr. Thew said.

The girl was able to obtain an abortion, a decision her parents supported. The alternative could have been deadly. “She was a tiny little person and would not have been able to carry a fetus,” Dr. Thew, a nurse practitioner, said.

Dr. Thew said she’s thankful that tragic case occurred before 2022. After the United States Supreme Court overturned Roe v. Wade in June, Wisconsin reverted to an 1849 law banning abortion. Although the law is currently being challenged, Dr. Thew wonders how the situation would have played out now. (Weeks after the Supreme Court’s decision, a similar case occurred in Ohio. In that case, a 10-year-old girl had to travel out of the state to obtain an abortion after having been raped.)

Talking to adolescents and young adults about reproductive health, whether regarding an unexpected pregnancy, the need for contraception, or to provide information about sexual activity, can be a challenge even for experienced health care providers.

The talks, decisions, and care are particularly complex when patients have developmental and intellectual disabilities. Among the many factors, Dr. Thew said, are dealing with menstruation, finding the right contraceptives, and counseling parents who might not want to acknowledge their children’s emerging sexuality.
 

Statistics: How many?

Because the definitions of disabilities vary and they represent a spectrum, estimates for how many youth have intellectual or developmental disabilities range widely.

In 2019, the National Survey of Children’s Health found that 1 in 4 children and adolescents aged 12-17 years have special health care needs because of disability. The American Community Survey estimates more than 1.3 million people aged 16-20 have a disability.

Intellectual disabilities can occur when a person’s IQ is below 70, significantly impeding the ability to perform activities of daily living, such as eating, dressing, and communicating. Developmental disabilities are impairments in physical, learning, language, and behavior, according to the United States Centers for Disease Control and Prevention. Among the conditions are attention-deficit/hyperactivity disorder, autism spectrum disorders, fragile X syndrome, learning and language problems, spina bifida, and other conditions.
 

Addressing common issues, concerns

April Kayser is a health educator for the Multnomah County Health Department, Portland, Ore. In 2016, Ms. Kayser and other experts conducted interviews with 11 youth with developmental and intellectual disabilities and 34 support people, either parents or professionals who provide services. The survey was part of the SHEIDD Project – short for Sexual Health Equity for Individuals with Intellectual/Developmental Disabilities – at Oregon Health and Science University (OHSU).

From their findings, the researchers compiled guidelines. They provided scenarios that health care providers need to be aware of and that they need to be ready to address:

• A boy, 14, who is unclear about what to do when he feels sexually excited and wants to masturbate but isn’t at home. He has been told that masturbation is appropriate in private.
• A 20-year-old woman who lives in a group home is pregnant. She confesses to her parents during a visit that another resident is her boyfriend and that he is the father of the child she is expecting.
• A 17-year-old boy wants to ask out another student, who is 15.

Some developmentally and intellectually disabled youth can’t turn to their parents for help. One person in the survey said his father told him, “You don’t need to worry about any of that stuff. You’re too young.” Another said the job of a health care provider was to offer reproductive and sex education “to make sure you don’t screw up in some bad way.”

One finding stood out: Health care providers were at the top of the list of those whom young people trusted for information about reproductive and sexual health, Ms. Kayser said. Yet in her experience, she said, health care professionals are hesitant to bring up the issues with all youth, “especially those with intellectual and developmental disabilities.”

Health care providers often talk both to the patient and to the parents. Those conversations can be critical when a child is developmentally or intellectually disabled.

Women with disabilities have been shown to have a higher risk for adverse outcomes of pregnancy, said Willi Horner-Johnson, PhD, associate professor at OHSU–Portland State University School of Public Health.

In a recent study, she and her colleagues analyzed data from the CDC’s National Survey of Family Growth that included self-reported disability status. They found that the number of women with disabilities who give birth is far higher than was previously thought.

The researchers found that 19.5% of respondents who gave birth reported at least one sensory, cognitive, or mobility-related disability, a rate that is much greater than the less than 1%-6.6% estimates that are based on hospital discharge data.

Her group reported other troubling findings: Women with disabilities are twice as likely to have smoked during their pregnancy (19% vs. 8.9%) and are more likely to have preterm and low-birthweight babies.
 

Clinicians play an important role

Dr. Horner-Johnson agreed with the finding from the Multnomah County survey that health care providers play an important role in providing those with intellectual and developmental disabilities reproductive health care that meets their needs. “Clinicians need to be asking people with disabilities about their reproductive plans,” she said.

In the Multnomah County report, the researchers advised health care providers to recognize that people with disabilities are social and sexual beings; to learn about their goals, including those regarding sex and reproductive health; and to help youth build skills for healthy relationships and sexual activity.

Dr. Horner-Johnson pointed out that the American College of Obstetricians and Gynecologists “recommends that clinicians discuss reproductive plans at every visit, for example, by asking one key question – ‘Would you like to become pregnant in the next year?’ – of every woman of reproductive age.”

Some women will not be able to answer that question, and health care providers at times must rely on a caregiver for input. But many women, even those with disabilities, could answer if given a chance. She estimated that only about 5% of disabled people are unable to communicate. “Clinicians defer to the caregiver more than they need to,” she said.

Clinicians are becoming better at providing care to those with disabilities, Dr. Horner-Johnson said, yet they have a way to go. Clinician biases may prevent some from asking all women, including those with disabilities, about their reproductive plans. “Women with disabilities have described clinicians treating them as nonsexual, assuming or implying that they would not or should not get pregnant,” she writes in her report.

Such biases, she said, could be reduced by increased education of providers. A 2018 study in Health Equity found that only 19.3% of ob.gyns. said they felt equipped to manage the pregnancy of a woman with disabilities.

Managing sexuality and sexual health for youth with disabilities can be highly complex, according to Margaret Thew, DNP, medical director of adolescent medicine at Children’s Wisconsin, Milwaukee. Challenges include the following:

• Parents often can’t deal with the reality that their teen or young adult is sexually active or may become so. Parents she helps often prefer to use the term “hormones,” not contraceptives, when talking about pregnancy prevention.
• Menstruation is a frequent concern, especially for youth with severe disabilities. Some react strongly to seeing a sanitary pad with blood, for example, by throwing it. Parents worry that caregivers will balk at changing pads regularly. As a result, some parents want complete menstrual suppression, Dr. Thew said. The American Academy of Pediatrics outlines how to approach menstrual suppression through methods such as the use of estrogen-progestin, progesterone, a ring, or a patch. In late August, the American College of Obstetricians and Gynecologists released its clinical consensus on medical management of menstrual suppression.
• Some parents want to know how to obtain a complete hysterectomy for the patient – an option Dr. Thew and the AAP discourage. “We will tell them that’s not the best and safest approach, as you want to have the estrogen for bone health,” she said.
• After a discussion of all the options, an intrauterine device proves best for many. “That gives 7-8 years of protection,” she said, which is the approved effective duration for such devices. “They are less apt to have heavy monthly menstrual bleeding.”
• Parents of boys with disabilities, especially those with Down syndrome, often ask for sex education and guidance when sexual desires develop.
• Many parents want effective birth control for their children because of fear that their teen or young adult will be assaulted, a fear that isn’t groundless. Such cases are common, and caregivers frequently are the perpetrators.

Ms. Kayser, Dr. Horner-Johnson, and Dr. Thew have disclosed no relevant financial relationships.

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

The developmentally disabled girl was just 10 years old when Margaret Thew, DNP, medical director of adolescent medicine at Children’s Wisconsin, Milwaukee, helped care for her. Providing that care was not emotionally easy. “Her brother’s friend sexually assaulted her and impregnated her,” Dr. Thew said.

The girl was able to obtain an abortion, a decision her parents supported. The alternative could have been deadly. “She was a tiny little person and would not have been able to carry a fetus,” Dr. Thew, a nurse practitioner, said.

Dr. Thew said she’s thankful that tragic case occurred before 2022. After the United States Supreme Court overturned Roe v. Wade in June, Wisconsin reverted to an 1849 law banning abortion. Although the law is currently being challenged, Dr. Thew wonders how the situation would have played out now. (Weeks after the Supreme Court’s decision, a similar case occurred in Ohio. In that case, a 10-year-old girl had to travel out of the state to obtain an abortion after having been raped.)

Talking to adolescents and young adults about reproductive health, whether regarding an unexpected pregnancy, the need for contraception, or to provide information about sexual activity, can be a challenge even for experienced health care providers.

The talks, decisions, and care are particularly complex when patients have developmental and intellectual disabilities. Among the many factors, Dr. Thew said, are dealing with menstruation, finding the right contraceptives, and counseling parents who might not want to acknowledge their children’s emerging sexuality.
 

Statistics: How many?

Because the definitions of disabilities vary and they represent a spectrum, estimates for how many youth have intellectual or developmental disabilities range widely.

In 2019, the National Survey of Children’s Health found that 1 in 4 children and adolescents aged 12-17 years have special health care needs because of disability. The American Community Survey estimates more than 1.3 million people aged 16-20 have a disability.

Intellectual disabilities can occur when a person’s IQ is below 70, significantly impeding the ability to perform activities of daily living, such as eating, dressing, and communicating. Developmental disabilities are impairments in physical, learning, language, and behavior, according to the United States Centers for Disease Control and Prevention. Among the conditions are attention-deficit/hyperactivity disorder, autism spectrum disorders, fragile X syndrome, learning and language problems, spina bifida, and other conditions.
 

Addressing common issues, concerns

April Kayser is a health educator for the Multnomah County Health Department, Portland, Ore. In 2016, Ms. Kayser and other experts conducted interviews with 11 youth with developmental and intellectual disabilities and 34 support people, either parents or professionals who provide services. The survey was part of the SHEIDD Project – short for Sexual Health Equity for Individuals with Intellectual/Developmental Disabilities – at Oregon Health and Science University (OHSU).

From their findings, the researchers compiled guidelines. They provided scenarios that health care providers need to be aware of and that they need to be ready to address:

• A boy, 14, who is unclear about what to do when he feels sexually excited and wants to masturbate but isn’t at home. He has been told that masturbation is appropriate in private.
• A 20-year-old woman who lives in a group home is pregnant. She confesses to her parents during a visit that another resident is her boyfriend and that he is the father of the child she is expecting.
• A 17-year-old boy wants to ask out another student, who is 15.

Some developmentally and intellectually disabled youth can’t turn to their parents for help. One person in the survey said his father told him, “You don’t need to worry about any of that stuff. You’re too young.” Another said the job of a health care provider was to offer reproductive and sex education “to make sure you don’t screw up in some bad way.”

One finding stood out: Health care providers were at the top of the list of those whom young people trusted for information about reproductive and sexual health, Ms. Kayser said. Yet in her experience, she said, health care professionals are hesitant to bring up the issues with all youth, “especially those with intellectual and developmental disabilities.”

Health care providers often talk both to the patient and to the parents. Those conversations can be critical when a child is developmentally or intellectually disabled.

Women with disabilities have been shown to have a higher risk for adverse outcomes of pregnancy, said Willi Horner-Johnson, PhD, associate professor at OHSU–Portland State University School of Public Health.

In a recent study, she and her colleagues analyzed data from the CDC’s National Survey of Family Growth that included self-reported disability status. They found that the number of women with disabilities who give birth is far higher than was previously thought.

The researchers found that 19.5% of respondents who gave birth reported at least one sensory, cognitive, or mobility-related disability, a rate that is much greater than the less than 1%-6.6% estimates that are based on hospital discharge data.

Her group reported other troubling findings: Women with disabilities are twice as likely to have smoked during their pregnancy (19% vs. 8.9%) and are more likely to have preterm and low-birthweight babies.
 

Clinicians play an important role

Dr. Horner-Johnson agreed with the finding from the Multnomah County survey that health care providers play an important role in providing those with intellectual and developmental disabilities reproductive health care that meets their needs. “Clinicians need to be asking people with disabilities about their reproductive plans,” she said.

In the Multnomah County report, the researchers advised health care providers to recognize that people with disabilities are social and sexual beings; to learn about their goals, including those regarding sex and reproductive health; and to help youth build skills for healthy relationships and sexual activity.

Dr. Horner-Johnson pointed out that the American College of Obstetricians and Gynecologists “recommends that clinicians discuss reproductive plans at every visit, for example, by asking one key question – ‘Would you like to become pregnant in the next year?’ – of every woman of reproductive age.”

Some women will not be able to answer that question, and health care providers at times must rely on a caregiver for input. But many women, even those with disabilities, could answer if given a chance. She estimated that only about 5% of disabled people are unable to communicate. “Clinicians defer to the caregiver more than they need to,” she said.

Clinicians are becoming better at providing care to those with disabilities, Dr. Horner-Johnson said, yet they have a way to go. Clinician biases may prevent some from asking all women, including those with disabilities, about their reproductive plans. “Women with disabilities have described clinicians treating them as nonsexual, assuming or implying that they would not or should not get pregnant,” she writes in her report.

Such biases, she said, could be reduced by increased education of providers. A 2018 study in Health Equity found that only 19.3% of ob.gyns. said they felt equipped to manage the pregnancy of a woman with disabilities.

Managing sexuality and sexual health for youth with disabilities can be highly complex, according to Margaret Thew, DNP, medical director of adolescent medicine at Children’s Wisconsin, Milwaukee. Challenges include the following:

• Parents often can’t deal with the reality that their teen or young adult is sexually active or may become so. Parents she helps often prefer to use the term “hormones,” not contraceptives, when talking about pregnancy prevention.
• Menstruation is a frequent concern, especially for youth with severe disabilities. Some react strongly to seeing a sanitary pad with blood, for example, by throwing it. Parents worry that caregivers will balk at changing pads regularly. As a result, some parents want complete menstrual suppression, Dr. Thew said. The American Academy of Pediatrics outlines how to approach menstrual suppression through methods such as the use of estrogen-progestin, progesterone, a ring, or a patch. In late August, the American College of Obstetricians and Gynecologists released its clinical consensus on medical management of menstrual suppression.
• Some parents want to know how to obtain a complete hysterectomy for the patient – an option Dr. Thew and the AAP discourage. “We will tell them that’s not the best and safest approach, as you want to have the estrogen for bone health,” she said.
• After a discussion of all the options, an intrauterine device proves best for many. “That gives 7-8 years of protection,” she said, which is the approved effective duration for such devices. “They are less apt to have heavy monthly menstrual bleeding.”
• Parents of boys with disabilities, especially those with Down syndrome, often ask for sex education and guidance when sexual desires develop.
• Many parents want effective birth control for their children because of fear that their teen or young adult will be assaulted, a fear that isn’t groundless. Such cases are common, and caregivers frequently are the perpetrators.

Ms. Kayser, Dr. Horner-Johnson, and Dr. Thew have disclosed no relevant financial relationships.

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

The developmentally disabled girl was just 10 years old when Margaret Thew, DNP, medical director of adolescent medicine at Children’s Wisconsin, Milwaukee, helped care for her. Providing that care was not emotionally easy. “Her brother’s friend sexually assaulted her and impregnated her,” Dr. Thew said.

The girl was able to obtain an abortion, a decision her parents supported. The alternative could have been deadly. “She was a tiny little person and would not have been able to carry a fetus,” Dr. Thew, a nurse practitioner, said.

Dr. Thew said she’s thankful that tragic case occurred before 2022. After the United States Supreme Court overturned Roe v. Wade in June, Wisconsin reverted to an 1849 law banning abortion. Although the law is currently being challenged, Dr. Thew wonders how the situation would have played out now. (Weeks after the Supreme Court’s decision, a similar case occurred in Ohio. In that case, a 10-year-old girl had to travel out of the state to obtain an abortion after having been raped.)

Talking to adolescents and young adults about reproductive health, whether regarding an unexpected pregnancy, the need for contraception, or to provide information about sexual activity, can be a challenge even for experienced health care providers.

The talks, decisions, and care are particularly complex when patients have developmental and intellectual disabilities. Among the many factors, Dr. Thew said, are dealing with menstruation, finding the right contraceptives, and counseling parents who might not want to acknowledge their children’s emerging sexuality.
 

Statistics: How many?

Because the definitions of disabilities vary and they represent a spectrum, estimates for how many youth have intellectual or developmental disabilities range widely.

In 2019, the National Survey of Children’s Health found that 1 in 4 children and adolescents aged 12-17 years have special health care needs because of disability. The American Community Survey estimates more than 1.3 million people aged 16-20 have a disability.

Intellectual disabilities can occur when a person’s IQ is below 70, significantly impeding the ability to perform activities of daily living, such as eating, dressing, and communicating. Developmental disabilities are impairments in physical, learning, language, and behavior, according to the United States Centers for Disease Control and Prevention. Among the conditions are attention-deficit/hyperactivity disorder, autism spectrum disorders, fragile X syndrome, learning and language problems, spina bifida, and other conditions.
 

Addressing common issues, concerns

April Kayser is a health educator for the Multnomah County Health Department, Portland, Ore. In 2016, Ms. Kayser and other experts conducted interviews with 11 youth with developmental and intellectual disabilities and 34 support people, either parents or professionals who provide services. The survey was part of the SHEIDD Project – short for Sexual Health Equity for Individuals with Intellectual/Developmental Disabilities – at Oregon Health and Science University (OHSU).

From their findings, the researchers compiled guidelines. They provided scenarios that health care providers need to be aware of and that they need to be ready to address:

• A boy, 14, who is unclear about what to do when he feels sexually excited and wants to masturbate but isn’t at home. He has been told that masturbation is appropriate in private.
• A 20-year-old woman who lives in a group home is pregnant. She confesses to her parents during a visit that another resident is her boyfriend and that he is the father of the child she is expecting.
• A 17-year-old boy wants to ask out another student, who is 15.

Some developmentally and intellectually disabled youth can’t turn to their parents for help. One person in the survey said his father told him, “You don’t need to worry about any of that stuff. You’re too young.” Another said the job of a health care provider was to offer reproductive and sex education “to make sure you don’t screw up in some bad way.”

One finding stood out: Health care providers were at the top of the list of those whom young people trusted for information about reproductive and sexual health, Ms. Kayser said. Yet in her experience, she said, health care professionals are hesitant to bring up the issues with all youth, “especially those with intellectual and developmental disabilities.”

Health care providers often talk both to the patient and to the parents. Those conversations can be critical when a child is developmentally or intellectually disabled.

Women with disabilities have been shown to have a higher risk for adverse outcomes of pregnancy, said Willi Horner-Johnson, PhD, associate professor at OHSU–Portland State University School of Public Health.

In a recent study, she and her colleagues analyzed data from the CDC’s National Survey of Family Growth that included self-reported disability status. They found that the number of women with disabilities who give birth is far higher than was previously thought.

The researchers found that 19.5% of respondents who gave birth reported at least one sensory, cognitive, or mobility-related disability, a rate that is much greater than the less than 1%-6.6% estimates that are based on hospital discharge data.

Her group reported other troubling findings: Women with disabilities are twice as likely to have smoked during their pregnancy (19% vs. 8.9%) and are more likely to have preterm and low-birthweight babies.
 

Clinicians play an important role

Dr. Horner-Johnson agreed with the finding from the Multnomah County survey that health care providers play an important role in providing those with intellectual and developmental disabilities reproductive health care that meets their needs. “Clinicians need to be asking people with disabilities about their reproductive plans,” she said.

In the Multnomah County report, the researchers advised health care providers to recognize that people with disabilities are social and sexual beings; to learn about their goals, including those regarding sex and reproductive health; and to help youth build skills for healthy relationships and sexual activity.

Dr. Horner-Johnson pointed out that the American College of Obstetricians and Gynecologists “recommends that clinicians discuss reproductive plans at every visit, for example, by asking one key question – ‘Would you like to become pregnant in the next year?’ – of every woman of reproductive age.”

Some women will not be able to answer that question, and health care providers at times must rely on a caregiver for input. But many women, even those with disabilities, could answer if given a chance. She estimated that only about 5% of disabled people are unable to communicate. “Clinicians defer to the caregiver more than they need to,” she said.

Clinicians are becoming better at providing care to those with disabilities, Dr. Horner-Johnson said, yet they have a way to go. Clinician biases may prevent some from asking all women, including those with disabilities, about their reproductive plans. “Women with disabilities have described clinicians treating them as nonsexual, assuming or implying that they would not or should not get pregnant,” she writes in her report.

Such biases, she said, could be reduced by increased education of providers. A 2018 study in Health Equity found that only 19.3% of ob.gyns. said they felt equipped to manage the pregnancy of a woman with disabilities.

Managing sexuality and sexual health for youth with disabilities can be highly complex, according to Margaret Thew, DNP, medical director of adolescent medicine at Children’s Wisconsin, Milwaukee. Challenges include the following:

• Parents often can’t deal with the reality that their teen or young adult is sexually active or may become so. Parents she helps often prefer to use the term “hormones,” not contraceptives, when talking about pregnancy prevention.
• Menstruation is a frequent concern, especially for youth with severe disabilities. Some react strongly to seeing a sanitary pad with blood, for example, by throwing it. Parents worry that caregivers will balk at changing pads regularly. As a result, some parents want complete menstrual suppression, Dr. Thew said. The American Academy of Pediatrics outlines how to approach menstrual suppression through methods such as the use of estrogen-progestin, progesterone, a ring, or a patch. In late August, the American College of Obstetricians and Gynecologists released its clinical consensus on medical management of menstrual suppression.
• Some parents want to know how to obtain a complete hysterectomy for the patient – an option Dr. Thew and the AAP discourage. “We will tell them that’s not the best and safest approach, as you want to have the estrogen for bone health,” she said.
• After a discussion of all the options, an intrauterine device proves best for many. “That gives 7-8 years of protection,” she said, which is the approved effective duration for such devices. “They are less apt to have heavy monthly menstrual bleeding.”
• Parents of boys with disabilities, especially those with Down syndrome, often ask for sex education and guidance when sexual desires develop.
• Many parents want effective birth control for their children because of fear that their teen or young adult will be assaulted, a fear that isn’t groundless. Such cases are common, and caregivers frequently are the perpetrators.

Ms. Kayser, Dr. Horner-Johnson, and Dr. Thew have disclosed no relevant financial relationships.

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

People with gout, especially women, appear to be at higher risk for poor COVID-19 outcomes, including hospitalization and death, regardless of COVID-19 vaccination status, researchers suggest.

“We found that the risks of SARS-CoV-2 infection, 30-day hospitalization, and 30-day death among individuals with gout were higher than the general population irrespective of the vaccination status,” lead study author Dongxing Xie, MD, PhD, Xiangya Hospital, Central South University, Changsha, China, and his colleagues write in their large population study. “This finding informs individuals with gout, especially women, that additional measures, even after vaccination, should be considered in order to mitigate the risk of SARS-CoV-2 infection and its severe sequelae.”

People with gout, the most common inflammatory arthritis, often have other conditions that are linked to higher risk for SARS-CoV-2 infection and poor outcomes as well, including obesity, cardiovascular disease, and chronic kidney disease, the authors write. And elevated serum urate may contribute to inflammation and possible COVID-19 complications. But unlike in the case of diseases such as lupus and rheumatoid arthritis, little is known about SARS-CoV-2 infection risk among patients with gout.

As reported in Arthritis & Rheumatology, Dr. Xie and his research team used the Health Improvement Network ([THIN], now called IQVIA Medical Research Database) repository of medical conditions, demographics, and other details of around 17 million people in the United Kingdom to estimate the risk for SARS-CoV-2 infection, hospitalization, and death in people with gout. They compared those outcomes with outcomes of people without gout and compared outcomes of vaccinated vs. nonvaccinated participants.

From December 2020 through October 2021, the researchers investigated the risk for SARS-CoV-2 breakthrough infection in vaccinated people between age 18 and 90 years who had gout and were hospitalized within 30 days after the infection diagnosis or who died within 30 days after the diagnosis. They compared these outcomes with the outcomes of people in the general population without gout after COVID-19 vaccination. They also compared the risk for SARS-CoV-2 infection and its severe outcomes between individuals with gout and the general population among unvaccinated people.

They weighted these comparisons on the basis of age, sex, body mass index, socioeconomic deprivation index score, region, and number of previous COVID-19 tests in one model. A more fully adjusted model also weighted the comparisons for lifestyle factors, comorbidities, medications, and healthcare utilization.

The vaccinated cohort consisted of 54,576 people with gout and 1,336,377 without gout from the general population. The unvaccinated cohort included 61,111 individuals with gout and 1,697,168 individuals without gout from the general population.
 

Women more likely to be hospitalized and die

The risk for breakthrough infection in the vaccinated cohort was significantly higher among people with gout than among those without gout in the general population, particularly for men, who had hazard ratios (HRs) ranging from 1.22 with a fully adjusted exposure score to 1.30 with a partially adjusted score, but this was not seen in women. The overall incidence of breakthrough infection per 1,000 person-months for these groups was 4.68 with gout vs. 3.76 without gout.

The researchers showed a similar pattern of a higher rate of hospitalizations for people with gout vs. without (0.42/1,000 person-months vs. 0.28); in this case, women had higher risks than did men, with HRs for women ranging from 1.55 with a fully adjusted exposure score to 1.91 with a partially adjusted score, compared with 1.22 and 1.43 for men, respectively.

People with gout had significantly higher mortality than did those without (0.06/1,000 person-months vs. 0.04), but the risk for death was only higher for women, with HRs calculated to be 2.23 in fully adjusted exposure scores and 3.01 in partially adjusted scores.

These same comparisons in the unvaccinated cohort all went in the same direction as did those in the vaccinated cohort but showed higher rates for infection (8.69/1,000 person-months vs. 6.89), hospitalization (2.57/1,000 person-months vs. 1.71), and death (0.65/1,000 person-months vs. 0.53). Similar sex-specific links between gout and risks for SARS-CoV-2 infection, hospitalization, and death were seen in the unvaccinated cohort.
 

Patients with gout and COVID-19 need close monitoring

Four experts who were not involved in the study encourage greater attention to the needs of patients with gout.

Earlier studies show links between gout and severe COVID-19 outcomes

Lead author Kanon Jatuworapruk, MD, PhD, of Thammasat University in Pathumthani, Thailand, and his colleagues investigated characteristics and outcomes of people with gout who were hospitalized for COVID-19 between March 2020 and October 2021, using data from the COVID-19 Global Rheumatology Alliance registry.

“This cohort of people with gout and COVID-19 who were hospitalized had high frequencies of ventilatory support and death,” the authors write in ACR Open Rheumatology . “This suggests that patients with gout who were hospitalized for COVID-19 may be at risk of poor outcomes, perhaps related to known risk factors for poor outcomes, such as age and presence of comorbidity.”

In their study, the average age of the 163 patients was 63 years, and 85% were men. Most lived in the Western Pacific Region and North America, and 46% had two or more comorbidities, most commonly hypertension, cardiovascular disease, diabetes, chronic kidney disease, and obesity. The researchers found that:

• Sixty-eight percent of the cohort required supplemental oxygen or ventilatory support during hospitalization.
• Sixteen percent of deaths were related to COVID-19, with 73% of deaths occurring in people with two or more comorbidities.

Ruth K. Topless, assistant research fellow in the department of biochemistry at the University of Otago in Dunedin, New Zealand, is the lead author on a study she and her colleagues are conducting using the UK Biobank databases of 459,837 participants in the United Kingdom, including 15,871 people with gout, through April 6, 2021, to investigate whether gout is a risk factor for diagnosis of COVID-19 and COVID-19–related death.

“Gout is a risk factor for COVID-19-related death in the UK Biobank cohort, with an increased risk in women with gout, which was driven by risk factors independent of the metabolic comorbidities of gout,” the researchers conclude in The Lancet Rheumatology.

In their study, gout was linked with COVID-19 diagnosis (odds ratio, 1.20; 95% confidence interval, 1.11-1.29) but not with risk for COVID-19–related death in the group of patients with COVID-19 (OR, 1.20; 95% CI, 0.96-1.51). In the entire cohort, gout was linked with COVID-19–related death (OR, 1.29; 95% CI, 1.06-1.56); women with gout were at increased risk for COVID-19–related death (OR, 1.98; 95% CI, 1.34-2.94), but men with gout were not (OR, 1.16; 95% CI, 0.93-1.45). The risk for COVID-19 diagnosis was significant in the nonvaccinated group (OR, 1.21; 95% CI, 1.11-1.30) but not in the vaccinated group (OR, 1.09; 95% CI, 0.65-1.85).
 

Editorial authors join in recommending further related research

In a commentary in The Lancet Rheumatology about the UK Biobank and other related research, Christoffer B. Nissen, MD, of University Hospital of Southern Denmark in Sonderborg, and his co-authors call the Topless and colleagues study “an elegantly conducted analysis of data from the UK Biobank supporting the hypothesis that gout needs attention in patients with COVID-19.”

Further studies are needed to investigate to what degree a diagnosis of gout is a risk factor for COVID-19 and whether treatment modifies the risk of a severe disease course,” they write. “However, in the interim, the results of this study could be considered when risk stratifying patients with gout in view of vaccination recommendations and early treatment interventions.”

Each of the three studies received grant funding. Several of the authors of the studies report financial involvements with pharmaceutical companies. All outside experts commented by email and report no relevant financial involvements.

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

People with gout, especially women, appear to be at higher risk for poor COVID-19 outcomes, including hospitalization and death, regardless of COVID-19 vaccination status, researchers suggest.

“We found that the risks of SARS-CoV-2 infection, 30-day hospitalization, and 30-day death among individuals with gout were higher than the general population irrespective of the vaccination status,” lead study author Dongxing Xie, MD, PhD, Xiangya Hospital, Central South University, Changsha, China, and his colleagues write in their large population study. “This finding informs individuals with gout, especially women, that additional measures, even after vaccination, should be considered in order to mitigate the risk of SARS-CoV-2 infection and its severe sequelae.”

People with gout, the most common inflammatory arthritis, often have other conditions that are linked to higher risk for SARS-CoV-2 infection and poor outcomes as well, including obesity, cardiovascular disease, and chronic kidney disease, the authors write. And elevated serum urate may contribute to inflammation and possible COVID-19 complications. But unlike in the case of diseases such as lupus and rheumatoid arthritis, little is known about SARS-CoV-2 infection risk among patients with gout.

As reported in Arthritis & Rheumatology, Dr. Xie and his research team used the Health Improvement Network ([THIN], now called IQVIA Medical Research Database) repository of medical conditions, demographics, and other details of around 17 million people in the United Kingdom to estimate the risk for SARS-CoV-2 infection, hospitalization, and death in people with gout. They compared those outcomes with outcomes of people without gout and compared outcomes of vaccinated vs. nonvaccinated participants.

From December 2020 through October 2021, the researchers investigated the risk for SARS-CoV-2 breakthrough infection in vaccinated people between age 18 and 90 years who had gout and were hospitalized within 30 days after the infection diagnosis or who died within 30 days after the diagnosis. They compared these outcomes with the outcomes of people in the general population without gout after COVID-19 vaccination. They also compared the risk for SARS-CoV-2 infection and its severe outcomes between individuals with gout and the general population among unvaccinated people.

They weighted these comparisons on the basis of age, sex, body mass index, socioeconomic deprivation index score, region, and number of previous COVID-19 tests in one model. A more fully adjusted model also weighted the comparisons for lifestyle factors, comorbidities, medications, and healthcare utilization.

The vaccinated cohort consisted of 54,576 people with gout and 1,336,377 without gout from the general population. The unvaccinated cohort included 61,111 individuals with gout and 1,697,168 individuals without gout from the general population.
 

Women more likely to be hospitalized and die

The risk for breakthrough infection in the vaccinated cohort was significantly higher among people with gout than among those without gout in the general population, particularly for men, who had hazard ratios (HRs) ranging from 1.22 with a fully adjusted exposure score to 1.30 with a partially adjusted score, but this was not seen in women. The overall incidence of breakthrough infection per 1,000 person-months for these groups was 4.68 with gout vs. 3.76 without gout.

The researchers showed a similar pattern of a higher rate of hospitalizations for people with gout vs. without (0.42/1,000 person-months vs. 0.28); in this case, women had higher risks than did men, with HRs for women ranging from 1.55 with a fully adjusted exposure score to 1.91 with a partially adjusted score, compared with 1.22 and 1.43 for men, respectively.

People with gout had significantly higher mortality than did those without (0.06/1,000 person-months vs. 0.04), but the risk for death was only higher for women, with HRs calculated to be 2.23 in fully adjusted exposure scores and 3.01 in partially adjusted scores.

These same comparisons in the unvaccinated cohort all went in the same direction as did those in the vaccinated cohort but showed higher rates for infection (8.69/1,000 person-months vs. 6.89), hospitalization (2.57/1,000 person-months vs. 1.71), and death (0.65/1,000 person-months vs. 0.53). Similar sex-specific links between gout and risks for SARS-CoV-2 infection, hospitalization, and death were seen in the unvaccinated cohort.
 

Patients with gout and COVID-19 need close monitoring

Four experts who were not involved in the study encourage greater attention to the needs of patients with gout.

Earlier studies show links between gout and severe COVID-19 outcomes

Lead author Kanon Jatuworapruk, MD, PhD, of Thammasat University in Pathumthani, Thailand, and his colleagues investigated characteristics and outcomes of people with gout who were hospitalized for COVID-19 between March 2020 and October 2021, using data from the COVID-19 Global Rheumatology Alliance registry.

“This cohort of people with gout and COVID-19 who were hospitalized had high frequencies of ventilatory support and death,” the authors write in ACR Open Rheumatology . “This suggests that patients with gout who were hospitalized for COVID-19 may be at risk of poor outcomes, perhaps related to known risk factors for poor outcomes, such as age and presence of comorbidity.”

In their study, the average age of the 163 patients was 63 years, and 85% were men. Most lived in the Western Pacific Region and North America, and 46% had two or more comorbidities, most commonly hypertension, cardiovascular disease, diabetes, chronic kidney disease, and obesity. The researchers found that:

• Sixty-eight percent of the cohort required supplemental oxygen or ventilatory support during hospitalization.
• Sixteen percent of deaths were related to COVID-19, with 73% of deaths occurring in people with two or more comorbidities.

Ruth K. Topless, assistant research fellow in the department of biochemistry at the University of Otago in Dunedin, New Zealand, is the lead author on a study she and her colleagues are conducting using the UK Biobank databases of 459,837 participants in the United Kingdom, including 15,871 people with gout, through April 6, 2021, to investigate whether gout is a risk factor for diagnosis of COVID-19 and COVID-19–related death.

“Gout is a risk factor for COVID-19-related death in the UK Biobank cohort, with an increased risk in women with gout, which was driven by risk factors independent of the metabolic comorbidities of gout,” the researchers conclude in The Lancet Rheumatology.

In their study, gout was linked with COVID-19 diagnosis (odds ratio, 1.20; 95% confidence interval, 1.11-1.29) but not with risk for COVID-19–related death in the group of patients with COVID-19 (OR, 1.20; 95% CI, 0.96-1.51). In the entire cohort, gout was linked with COVID-19–related death (OR, 1.29; 95% CI, 1.06-1.56); women with gout were at increased risk for COVID-19–related death (OR, 1.98; 95% CI, 1.34-2.94), but men with gout were not (OR, 1.16; 95% CI, 0.93-1.45). The risk for COVID-19 diagnosis was significant in the nonvaccinated group (OR, 1.21; 95% CI, 1.11-1.30) but not in the vaccinated group (OR, 1.09; 95% CI, 0.65-1.85).
 

Editorial authors join in recommending further related research

In a commentary in The Lancet Rheumatology about the UK Biobank and other related research, Christoffer B. Nissen, MD, of University Hospital of Southern Denmark in Sonderborg, and his co-authors call the Topless and colleagues study “an elegantly conducted analysis of data from the UK Biobank supporting the hypothesis that gout needs attention in patients with COVID-19.”

Further studies are needed to investigate to what degree a diagnosis of gout is a risk factor for COVID-19 and whether treatment modifies the risk of a severe disease course,” they write. “However, in the interim, the results of this study could be considered when risk stratifying patients with gout in view of vaccination recommendations and early treatment interventions.”

Each of the three studies received grant funding. Several of the authors of the studies report financial involvements with pharmaceutical companies. All outside experts commented by email and report no relevant financial involvements.

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

People with gout, especially women, appear to be at higher risk for poor COVID-19 outcomes, including hospitalization and death, regardless of COVID-19 vaccination status, researchers suggest.

“We found that the risks of SARS-CoV-2 infection, 30-day hospitalization, and 30-day death among individuals with gout were higher than the general population irrespective of the vaccination status,” lead study author Dongxing Xie, MD, PhD, Xiangya Hospital, Central South University, Changsha, China, and his colleagues write in their large population study. “This finding informs individuals with gout, especially women, that additional measures, even after vaccination, should be considered in order to mitigate the risk of SARS-CoV-2 infection and its severe sequelae.”

People with gout, the most common inflammatory arthritis, often have other conditions that are linked to higher risk for SARS-CoV-2 infection and poor outcomes as well, including obesity, cardiovascular disease, and chronic kidney disease, the authors write. And elevated serum urate may contribute to inflammation and possible COVID-19 complications. But unlike in the case of diseases such as lupus and rheumatoid arthritis, little is known about SARS-CoV-2 infection risk among patients with gout.

As reported in Arthritis & Rheumatology, Dr. Xie and his research team used the Health Improvement Network ([THIN], now called IQVIA Medical Research Database) repository of medical conditions, demographics, and other details of around 17 million people in the United Kingdom to estimate the risk for SARS-CoV-2 infection, hospitalization, and death in people with gout. They compared those outcomes with outcomes of people without gout and compared outcomes of vaccinated vs. nonvaccinated participants.

From December 2020 through October 2021, the researchers investigated the risk for SARS-CoV-2 breakthrough infection in vaccinated people between age 18 and 90 years who had gout and were hospitalized within 30 days after the infection diagnosis or who died within 30 days after the diagnosis. They compared these outcomes with the outcomes of people in the general population without gout after COVID-19 vaccination. They also compared the risk for SARS-CoV-2 infection and its severe outcomes between individuals with gout and the general population among unvaccinated people.

They weighted these comparisons on the basis of age, sex, body mass index, socioeconomic deprivation index score, region, and number of previous COVID-19 tests in one model. A more fully adjusted model also weighted the comparisons for lifestyle factors, comorbidities, medications, and healthcare utilization.

The vaccinated cohort consisted of 54,576 people with gout and 1,336,377 without gout from the general population. The unvaccinated cohort included 61,111 individuals with gout and 1,697,168 individuals without gout from the general population.
 

Women more likely to be hospitalized and die

The risk for breakthrough infection in the vaccinated cohort was significantly higher among people with gout than among those without gout in the general population, particularly for men, who had hazard ratios (HRs) ranging from 1.22 with a fully adjusted exposure score to 1.30 with a partially adjusted score, but this was not seen in women. The overall incidence of breakthrough infection per 1,000 person-months for these groups was 4.68 with gout vs. 3.76 without gout.

The researchers showed a similar pattern of a higher rate of hospitalizations for people with gout vs. without (0.42/1,000 person-months vs. 0.28); in this case, women had higher risks than did men, with HRs for women ranging from 1.55 with a fully adjusted exposure score to 1.91 with a partially adjusted score, compared with 1.22 and 1.43 for men, respectively.

People with gout had significantly higher mortality than did those without (0.06/1,000 person-months vs. 0.04), but the risk for death was only higher for women, with HRs calculated to be 2.23 in fully adjusted exposure scores and 3.01 in partially adjusted scores.

These same comparisons in the unvaccinated cohort all went in the same direction as did those in the vaccinated cohort but showed higher rates for infection (8.69/1,000 person-months vs. 6.89), hospitalization (2.57/1,000 person-months vs. 1.71), and death (0.65/1,000 person-months vs. 0.53). Similar sex-specific links between gout and risks for SARS-CoV-2 infection, hospitalization, and death were seen in the unvaccinated cohort.
 

Patients with gout and COVID-19 need close monitoring

Four experts who were not involved in the study encourage greater attention to the needs of patients with gout.

Earlier studies show links between gout and severe COVID-19 outcomes

Lead author Kanon Jatuworapruk, MD, PhD, of Thammasat University in Pathumthani, Thailand, and his colleagues investigated characteristics and outcomes of people with gout who were hospitalized for COVID-19 between March 2020 and October 2021, using data from the COVID-19 Global Rheumatology Alliance registry.

“This cohort of people with gout and COVID-19 who were hospitalized had high frequencies of ventilatory support and death,” the authors write in ACR Open Rheumatology . “This suggests that patients with gout who were hospitalized for COVID-19 may be at risk of poor outcomes, perhaps related to known risk factors for poor outcomes, such as age and presence of comorbidity.”

In their study, the average age of the 163 patients was 63 years, and 85% were men. Most lived in the Western Pacific Region and North America, and 46% had two or more comorbidities, most commonly hypertension, cardiovascular disease, diabetes, chronic kidney disease, and obesity. The researchers found that:

• Sixty-eight percent of the cohort required supplemental oxygen or ventilatory support during hospitalization.
• Sixteen percent of deaths were related to COVID-19, with 73% of deaths occurring in people with two or more comorbidities.

Ruth K. Topless, assistant research fellow in the department of biochemistry at the University of Otago in Dunedin, New Zealand, is the lead author on a study she and her colleagues are conducting using the UK Biobank databases of 459,837 participants in the United Kingdom, including 15,871 people with gout, through April 6, 2021, to investigate whether gout is a risk factor for diagnosis of COVID-19 and COVID-19–related death.

“Gout is a risk factor for COVID-19-related death in the UK Biobank cohort, with an increased risk in women with gout, which was driven by risk factors independent of the metabolic comorbidities of gout,” the researchers conclude in The Lancet Rheumatology.

In their study, gout was linked with COVID-19 diagnosis (odds ratio, 1.20; 95% confidence interval, 1.11-1.29) but not with risk for COVID-19–related death in the group of patients with COVID-19 (OR, 1.20; 95% CI, 0.96-1.51). In the entire cohort, gout was linked with COVID-19–related death (OR, 1.29; 95% CI, 1.06-1.56); women with gout were at increased risk for COVID-19–related death (OR, 1.98; 95% CI, 1.34-2.94), but men with gout were not (OR, 1.16; 95% CI, 0.93-1.45). The risk for COVID-19 diagnosis was significant in the nonvaccinated group (OR, 1.21; 95% CI, 1.11-1.30) but not in the vaccinated group (OR, 1.09; 95% CI, 0.65-1.85).
 

Editorial authors join in recommending further related research

In a commentary in The Lancet Rheumatology about the UK Biobank and other related research, Christoffer B. Nissen, MD, of University Hospital of Southern Denmark in Sonderborg, and his co-authors call the Topless and colleagues study “an elegantly conducted analysis of data from the UK Biobank supporting the hypothesis that gout needs attention in patients with COVID-19.”

Further studies are needed to investigate to what degree a diagnosis of gout is a risk factor for COVID-19 and whether treatment modifies the risk of a severe disease course,” they write. “However, in the interim, the results of this study could be considered when risk stratifying patients with gout in view of vaccination recommendations and early treatment interventions.”

Each of the three studies received grant funding. Several of the authors of the studies report financial involvements with pharmaceutical companies. All outside experts commented by email and report no relevant financial involvements.

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