Ob.Gyn. News

On June 2, 2019, 35-year-old Anne Hutchinson gave birth to her first child, Lillian. There were no problems with the pregnancy or the birth at Fairview Hospital, which is part of the Cleveland Clinic system.

But 2 days after the birth, she had shortness of breath and couldn’t lie down and breathe.

“My mom’s a nurse, and she was like, ‘You need to go to the hospital immediately,’” Ms. Hutchinson said. When she was admitted to the hospital, there were suddenly “10 doctors in the room.”

Ms. Hutchinson was diagnosed with peripartum cardiomyopathy, a weakness of the heart muscle. She had heart failure. The seriousness of heart failure is measured by the ejection fraction, or the percentage of blood the heart pumps out. Normal is 50%-70%. Ms. Hutchinson’s ejection fraction was 20%.

She was put on medication, left the hospital after 5 days, and her ejection fraction eventually rose to 35%. But she was still at risk for sudden cardiac death.

“The cardiologist said to me, ‘You probably can’t have any more children.’ My heart did not bounce back,” Ms. Hutchinson said.

By the end of 2019, her cardiologist determined that she needed an internal cardiac defibrillator, which monitors the heartbeat and delivers electric shocks to restore the heart’s normal rhythm when needed.

By 2020, when Ms. Hutchinson’s ejection fraction was near normal, she decided that she wanted another child.

“I had a daughter. She was beautiful and amazing. But I felt like I wanted to have a sibling for her,” she says. Yet when her cardiologist at Fairview Hospital heard the plan, she told her getting pregnant again “would be like Russian roulette.”

Ms. Hutchinson is one of a growing number of women whose medical condition puts them at high risk of death during and after giving birth. An estimated 30% of maternal deaths in the United States result from cardiovascular disease – a problem that has become more common with increases in diabetes and obesity.

And, in some women, hypertension can develop suddenly during pregnancy. This is called preeclampsia and is increasing in the United States, particularly in Black women. In rare cases, it can become the life-threatening condition eclampsia, with seizures and death.

Three-time Olympic medalist and world champion sprinter Tori Bowie was found dead in June of apparent complications of pregnancy. The medical examiner’s office in Orange County, Fla., said she was believed to have been in her 8th month of pregnancy and may have died of eclampsia.

Heart conditions in pregnant women are one of a long list of reasons why the United States has the highest maternal mortality rate of any developed country. But the risk is marked by significant racial differences, with death rates three times higher in Black women, compared with White women.

Rates of maternal mortality have increased in recent years. In 2021, 1,205 women died of pregnancy-related causes, compared with 861 in 2020.

What troubles many experts is that it is estimated that 80% of these deaths are preventable.

“That is a ridiculous number,” said Melissa A. Simon, MD, MPH, director of the Center for Health Equity Transformation at Northwestern Medicine in Evanston, Ill.. “For a health care system in a country that is so high-resourced and high-income, for 8 out of 10 deaths for moms who are pregnant [to be preventable], that’s absolutely unacceptable.”

Pregnant women are not only at risk of death from cardiovascular complications, but other types of problems, including hemorrhage, thrombotic embolism, and infection.

But experts now are focusing attention on nonmedical reasons for maternal mortality, such as racial disparities and the fundamental issue of whether women are telling doctors about their symptoms but are not being heard. 

The government has acknowledged the depth of this problem with the Centers for Disease Control and Prevention’s “Hear Her” campaign, which includes videos of women who describe how their health professionals did not take their concerns seriously.

In one such video, a woman named Sanari says 2 days after the birth of her second child, she started developing soreness.

“By day 3, it just didn’t feel right. I asked the nurses, explained my symptoms and that I was having crazy pains, and they assured me it was just gas,” she says on the video.

Sanari described how she started to have odorous discharge and ended up in an emergency room at a different hospital. Health care providers found a large abscess on her uterus.

“I’m glad I didn’t stop at no, and I’m glad someone finally heard me – someone finally listened to me,” she said.

“Hear Her” featured another woman named Lindsay, who had preeclampsia in her first pregnancy and began to get symptoms during her second pregnancy.

She describes how she voiced her concerns to her doctors, saying, “sometimes it would be, ‘Oh, you’re pregnant and your feet are supposed to swell. … It’s just fine.’ But I didn’t feel fine.”

The campaign aims to raise awareness of warning signs that require fast medical attention to prevent pregnancy-related deaths.

But Shanna Cox, associate director of the CDC’s Division of Reproductive Health, said the agency has collected many stories of women who died or nearly died because their concerns were not being addressed properly.

Ms. Cox says another part of the campaign “is really focused on health care providers and listening … to their patients, providing that respectful patient-centered care to be sure that all their concerns are addressed.”

And some experts believe the thinking has shifted even more dramatically.

“We’ve moved from beyond the days of blaming the individual, the birth person, or the woman, to say you haven’t done this, you haven’t come into health care, you are not taking care of yourself, you aren’t keeping your appointments,” says Laurie Zephyrin, MD, MPH, vice president of the Commonwealth Fund, a private foundation in New York dedicated to improving health care. 

Dr. Zephyrin says the health care system falls short of providing equitable, quality care. “There’s data that shows Black people receive worse care than White people for about 40% of quality measures,” she said.

These disparities have led to the formation of organizations like National Birth Equity Collaborative, an advocacy group in New Orleans working to improve maternal care for Black patients.

Carmen Green, vice president of research and strategy, said institutional racism has been embedded into some health care providers.

“They have this hierarchy that teaches them they have to manage, they have to control, they have to direct the medical experience, and that is just not how birthing works,” she said.

She used the example of the birth experience as a car ride, where the mothers have been in the backseat with the doctor driving. “We want the birthing person in the driving seat and want [them] to be respected as a person who is deciding where that destination is going,” Ms. Green said.

She says health providers often “blame the mamas” based on assumptions, stereotypes, and biases against low-income people.

So how is American medicine responding to the medical and social causes of maternal mortality?

This news organization surveyed 10 medical centers ranked by U.S. News & World Report as the country’s top facilities for obstetrics. They were asked what programs they had and studies they had done to try to reduce maternal mortality, improve racial disparities, and target cardiovascular causes of maternal mortality.

One of the most extensive programs was founded at the Stanford School of Medicine in Stanford, Calif., in 2006. The California Maternal Quality Care Collaborative includes 200 hospitals in the state committed to ending preventable maternal mortality and racial disparities.

Nine hospitals in the collaborative have started programs to reduce hemorrhages, manage high blood pressure disorders, and reduce the rate of cesarean deliveries. All are important reasons for maternal mortality.

These programs helped bring about a 62% reduction in California’s maternal mortality rate from 2006 to 2016. And 2023 figures show that California has the lowest maternal mortality rate of any state.

Alabama has the sixth highest rate of maternal mortality in the nation. The University of Alabama at Birmingham wants to address the racial disparities in maternal mortality with a cooperative called the P3 EQUATE Network.

The network is part of a $20 million program by the American Heart Association to gain greater understanding of the disproportionate effect of maternal mortality on Black and Native American people.

The program works with pregnant and postpartum women “to discover ways to reduce racism and social problems that contribute to poor health outcomes.”

In addition to collaborative efforts, the survey found maternal mortality programs at all the top medical centers.

NewYork-Presbyterian Hospital has a Mothers Center that provides specialized care to pregnant women with complications.

The University of Chicago Medical Center established a program called “Systematic Treatment and Management of Postpartum Hypertension” that includes patient and staff education, standardized hospital discharge instructions, and a follow-up in a postpartum hypertension clinic.

A 2021 study found that the program had helped increase the number of postpartum women who correctly follow blood pressure control guidance.

A program called MOMS Navigation at Northwell Health in Long Island, N.Y., provides support to high-risk mothers. The program decreased 30-day readmission rates for all patients by 50% and for Black birthing patients by 60%. Reducing readmission is an important measure for reducing complications.

Vanderbilt University Medical Center in Nashville has what it calls the first-of-its-kind educational podcasts Healthy Mom Healthy Baby, where 30% of the content is devoted to health disparities.

And several centers, including Brigham and Women’s Hospital in Boston and NewYork-Presbyterian, make sure mothers have access to doulas – professional support people trained in the needs of the family during pregnancy and childbirth.

The survey found that 9 of the 10 centers have obstetric programs devoted to cardiac care, including the University of Chicago, Stanford Medicine, UCLA, and the Cleveland Clinic. 

But the survey results raise the question: How can we have these programs and research at our best obstetrics centers devoted to reducing maternal mortality and have the highest rate of all developed countries?

“Maternal mortality largely falls on pregnant and birthing persons who do not intersect with, nor are touched, by the best obstetrical care centers in the country,” Dr. Simon said.

Unfortunately, she said, the pregnant people who face “high maternal mortality rates … face all the access-to-care barriers and do not have the privilege of birthing or accessing care at top centers.”

Anne Hutchinson believed going to a top center – the Cleveland Clinic – would give her a good chance of safely delivering a second child.

Karlee Hoffman, DO, a cardiologist in the hospital’s cardio-obstetric high-risk clinic, said Ms. Hutchinson “came to me, she was determined to have another child, and she said, ‘Please help me do this. I’m doing it regardless. So, I would really like your support in moving forward,’” Dr. Hoffman recalls.

Ms. Hutchinson said Cleveland Clinic doctors told her she had a 20%-30% chance of peripartum cardiomyopathy again if she had a second child. If that happened, the risks “ranged from mild decompensation of my heart function to death,“ she said.

Ms. Hutchinson and her husband decided to go ahead with the pregnancy. Her parents cried when they found out. But Ms. Hutchinson says she was confident in the cardio obstetric team at Cleveland Clinic.

Her fertility medicine raised the possibility of multiple births, which would be a definite threat to her life. Her heart failure medicine, Entresto, could not be used during pregnancy, so her doctors put her on older medicines.

She got pregnant in June 2022 and developed gestational diabetes, which can affect pregnancy because of raised blood sugar. Another potential risk. She was carefully monitored by the specialists and hospitalized once.

At 37 weeks, she was induced and had a forceps delivery. On Feb. 15, 2023, her second daughter, Charlotte, was born.

Ms. Hutchinson was asked to write about how she felt when she delivered Charlotte:

“I am not sure how to put into words the love, joy, and elation that I felt holding Charlotte for the first time. As I write this, I have tears of joy in my eyes thinking of that moment. I had prayed for her for so long and after being told I couldn’t or shouldn’t have any more children.”

“I felt that Charlotte and I were forever bonded in triumph from that moment on. We did it and made it out alive! And our family was now complete. I have so much joy watching the love that is growing between Charlotte and Lillian. Life is truly amazing, and I am forever grateful to have them.”

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

On June 2, 2019, 35-year-old Anne Hutchinson gave birth to her first child, Lillian. There were no problems with the pregnancy or the birth at Fairview Hospital, which is part of the Cleveland Clinic system.

But 2 days after the birth, she had shortness of breath and couldn’t lie down and breathe.

“My mom’s a nurse, and she was like, ‘You need to go to the hospital immediately,’” Ms. Hutchinson said. When she was admitted to the hospital, there were suddenly “10 doctors in the room.”

Ms. Hutchinson was diagnosed with peripartum cardiomyopathy, a weakness of the heart muscle. She had heart failure. The seriousness of heart failure is measured by the ejection fraction, or the percentage of blood the heart pumps out. Normal is 50%-70%. Ms. Hutchinson’s ejection fraction was 20%.

She was put on medication, left the hospital after 5 days, and her ejection fraction eventually rose to 35%. But she was still at risk for sudden cardiac death.

“The cardiologist said to me, ‘You probably can’t have any more children.’ My heart did not bounce back,” Ms. Hutchinson said.

By the end of 2019, her cardiologist determined that she needed an internal cardiac defibrillator, which monitors the heartbeat and delivers electric shocks to restore the heart’s normal rhythm when needed.

By 2020, when Ms. Hutchinson’s ejection fraction was near normal, she decided that she wanted another child.

“I had a daughter. She was beautiful and amazing. But I felt like I wanted to have a sibling for her,” she says. Yet when her cardiologist at Fairview Hospital heard the plan, she told her getting pregnant again “would be like Russian roulette.”

Ms. Hutchinson is one of a growing number of women whose medical condition puts them at high risk of death during and after giving birth. An estimated 30% of maternal deaths in the United States result from cardiovascular disease – a problem that has become more common with increases in diabetes and obesity.

And, in some women, hypertension can develop suddenly during pregnancy. This is called preeclampsia and is increasing in the United States, particularly in Black women. In rare cases, it can become the life-threatening condition eclampsia, with seizures and death.

Three-time Olympic medalist and world champion sprinter Tori Bowie was found dead in June of apparent complications of pregnancy. The medical examiner’s office in Orange County, Fla., said she was believed to have been in her 8th month of pregnancy and may have died of eclampsia.

Heart conditions in pregnant women are one of a long list of reasons why the United States has the highest maternal mortality rate of any developed country. But the risk is marked by significant racial differences, with death rates three times higher in Black women, compared with White women.

Rates of maternal mortality have increased in recent years. In 2021, 1,205 women died of pregnancy-related causes, compared with 861 in 2020.

What troubles many experts is that it is estimated that 80% of these deaths are preventable.

“That is a ridiculous number,” said Melissa A. Simon, MD, MPH, director of the Center for Health Equity Transformation at Northwestern Medicine in Evanston, Ill.. “For a health care system in a country that is so high-resourced and high-income, for 8 out of 10 deaths for moms who are pregnant [to be preventable], that’s absolutely unacceptable.”

Pregnant women are not only at risk of death from cardiovascular complications, but other types of problems, including hemorrhage, thrombotic embolism, and infection.

But experts now are focusing attention on nonmedical reasons for maternal mortality, such as racial disparities and the fundamental issue of whether women are telling doctors about their symptoms but are not being heard. 

The government has acknowledged the depth of this problem with the Centers for Disease Control and Prevention’s “Hear Her” campaign, which includes videos of women who describe how their health professionals did not take their concerns seriously.

In one such video, a woman named Sanari says 2 days after the birth of her second child, she started developing soreness.

“By day 3, it just didn’t feel right. I asked the nurses, explained my symptoms and that I was having crazy pains, and they assured me it was just gas,” she says on the video.

Sanari described how she started to have odorous discharge and ended up in an emergency room at a different hospital. Health care providers found a large abscess on her uterus.

“I’m glad I didn’t stop at no, and I’m glad someone finally heard me – someone finally listened to me,” she said.

“Hear Her” featured another woman named Lindsay, who had preeclampsia in her first pregnancy and began to get symptoms during her second pregnancy.

She describes how she voiced her concerns to her doctors, saying, “sometimes it would be, ‘Oh, you’re pregnant and your feet are supposed to swell. … It’s just fine.’ But I didn’t feel fine.”

The campaign aims to raise awareness of warning signs that require fast medical attention to prevent pregnancy-related deaths.

But Shanna Cox, associate director of the CDC’s Division of Reproductive Health, said the agency has collected many stories of women who died or nearly died because their concerns were not being addressed properly.

Ms. Cox says another part of the campaign “is really focused on health care providers and listening … to their patients, providing that respectful patient-centered care to be sure that all their concerns are addressed.”

And some experts believe the thinking has shifted even more dramatically.

“We’ve moved from beyond the days of blaming the individual, the birth person, or the woman, to say you haven’t done this, you haven’t come into health care, you are not taking care of yourself, you aren’t keeping your appointments,” says Laurie Zephyrin, MD, MPH, vice president of the Commonwealth Fund, a private foundation in New York dedicated to improving health care. 

Dr. Zephyrin says the health care system falls short of providing equitable, quality care. “There’s data that shows Black people receive worse care than White people for about 40% of quality measures,” she said.

These disparities have led to the formation of organizations like National Birth Equity Collaborative, an advocacy group in New Orleans working to improve maternal care for Black patients.

Carmen Green, vice president of research and strategy, said institutional racism has been embedded into some health care providers.

“They have this hierarchy that teaches them they have to manage, they have to control, they have to direct the medical experience, and that is just not how birthing works,” she said.

She used the example of the birth experience as a car ride, where the mothers have been in the backseat with the doctor driving. “We want the birthing person in the driving seat and want [them] to be respected as a person who is deciding where that destination is going,” Ms. Green said.

She says health providers often “blame the mamas” based on assumptions, stereotypes, and biases against low-income people.

So how is American medicine responding to the medical and social causes of maternal mortality?

This news organization surveyed 10 medical centers ranked by U.S. News & World Report as the country’s top facilities for obstetrics. They were asked what programs they had and studies they had done to try to reduce maternal mortality, improve racial disparities, and target cardiovascular causes of maternal mortality.

One of the most extensive programs was founded at the Stanford School of Medicine in Stanford, Calif., in 2006. The California Maternal Quality Care Collaborative includes 200 hospitals in the state committed to ending preventable maternal mortality and racial disparities.

Nine hospitals in the collaborative have started programs to reduce hemorrhages, manage high blood pressure disorders, and reduce the rate of cesarean deliveries. All are important reasons for maternal mortality.

These programs helped bring about a 62% reduction in California’s maternal mortality rate from 2006 to 2016. And 2023 figures show that California has the lowest maternal mortality rate of any state.

Alabama has the sixth highest rate of maternal mortality in the nation. The University of Alabama at Birmingham wants to address the racial disparities in maternal mortality with a cooperative called the P3 EQUATE Network.

The network is part of a $20 million program by the American Heart Association to gain greater understanding of the disproportionate effect of maternal mortality on Black and Native American people.

The program works with pregnant and postpartum women “to discover ways to reduce racism and social problems that contribute to poor health outcomes.”

In addition to collaborative efforts, the survey found maternal mortality programs at all the top medical centers.

NewYork-Presbyterian Hospital has a Mothers Center that provides specialized care to pregnant women with complications.

The University of Chicago Medical Center established a program called “Systematic Treatment and Management of Postpartum Hypertension” that includes patient and staff education, standardized hospital discharge instructions, and a follow-up in a postpartum hypertension clinic.

A 2021 study found that the program had helped increase the number of postpartum women who correctly follow blood pressure control guidance.

A program called MOMS Navigation at Northwell Health in Long Island, N.Y., provides support to high-risk mothers. The program decreased 30-day readmission rates for all patients by 50% and for Black birthing patients by 60%. Reducing readmission is an important measure for reducing complications.

Vanderbilt University Medical Center in Nashville has what it calls the first-of-its-kind educational podcasts Healthy Mom Healthy Baby, where 30% of the content is devoted to health disparities.

And several centers, including Brigham and Women’s Hospital in Boston and NewYork-Presbyterian, make sure mothers have access to doulas – professional support people trained in the needs of the family during pregnancy and childbirth.

The survey found that 9 of the 10 centers have obstetric programs devoted to cardiac care, including the University of Chicago, Stanford Medicine, UCLA, and the Cleveland Clinic. 

But the survey results raise the question: How can we have these programs and research at our best obstetrics centers devoted to reducing maternal mortality and have the highest rate of all developed countries?

“Maternal mortality largely falls on pregnant and birthing persons who do not intersect with, nor are touched, by the best obstetrical care centers in the country,” Dr. Simon said.

Unfortunately, she said, the pregnant people who face “high maternal mortality rates … face all the access-to-care barriers and do not have the privilege of birthing or accessing care at top centers.”

Anne Hutchinson believed going to a top center – the Cleveland Clinic – would give her a good chance of safely delivering a second child.

Karlee Hoffman, DO, a cardiologist in the hospital’s cardio-obstetric high-risk clinic, said Ms. Hutchinson “came to me, she was determined to have another child, and she said, ‘Please help me do this. I’m doing it regardless. So, I would really like your support in moving forward,’” Dr. Hoffman recalls.

Ms. Hutchinson said Cleveland Clinic doctors told her she had a 20%-30% chance of peripartum cardiomyopathy again if she had a second child. If that happened, the risks “ranged from mild decompensation of my heart function to death,“ she said.

Ms. Hutchinson and her husband decided to go ahead with the pregnancy. Her parents cried when they found out. But Ms. Hutchinson says she was confident in the cardio obstetric team at Cleveland Clinic.

Her fertility medicine raised the possibility of multiple births, which would be a definite threat to her life. Her heart failure medicine, Entresto, could not be used during pregnancy, so her doctors put her on older medicines.

She got pregnant in June 2022 and developed gestational diabetes, which can affect pregnancy because of raised blood sugar. Another potential risk. She was carefully monitored by the specialists and hospitalized once.

At 37 weeks, she was induced and had a forceps delivery. On Feb. 15, 2023, her second daughter, Charlotte, was born.

Ms. Hutchinson was asked to write about how she felt when she delivered Charlotte:

“I am not sure how to put into words the love, joy, and elation that I felt holding Charlotte for the first time. As I write this, I have tears of joy in my eyes thinking of that moment. I had prayed for her for so long and after being told I couldn’t or shouldn’t have any more children.”

“I felt that Charlotte and I were forever bonded in triumph from that moment on. We did it and made it out alive! And our family was now complete. I have so much joy watching the love that is growing between Charlotte and Lillian. Life is truly amazing, and I am forever grateful to have them.”

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

On June 2, 2019, 35-year-old Anne Hutchinson gave birth to her first child, Lillian. There were no problems with the pregnancy or the birth at Fairview Hospital, which is part of the Cleveland Clinic system.

But 2 days after the birth, she had shortness of breath and couldn’t lie down and breathe.

“My mom’s a nurse, and she was like, ‘You need to go to the hospital immediately,’” Ms. Hutchinson said. When she was admitted to the hospital, there were suddenly “10 doctors in the room.”

Ms. Hutchinson was diagnosed with peripartum cardiomyopathy, a weakness of the heart muscle. She had heart failure. The seriousness of heart failure is measured by the ejection fraction, or the percentage of blood the heart pumps out. Normal is 50%-70%. Ms. Hutchinson’s ejection fraction was 20%.

She was put on medication, left the hospital after 5 days, and her ejection fraction eventually rose to 35%. But she was still at risk for sudden cardiac death.

“The cardiologist said to me, ‘You probably can’t have any more children.’ My heart did not bounce back,” Ms. Hutchinson said.

By the end of 2019, her cardiologist determined that she needed an internal cardiac defibrillator, which monitors the heartbeat and delivers electric shocks to restore the heart’s normal rhythm when needed.

By 2020, when Ms. Hutchinson’s ejection fraction was near normal, she decided that she wanted another child.

“I had a daughter. She was beautiful and amazing. But I felt like I wanted to have a sibling for her,” she says. Yet when her cardiologist at Fairview Hospital heard the plan, she told her getting pregnant again “would be like Russian roulette.”

Ms. Hutchinson is one of a growing number of women whose medical condition puts them at high risk of death during and after giving birth. An estimated 30% of maternal deaths in the United States result from cardiovascular disease – a problem that has become more common with increases in diabetes and obesity.

And, in some women, hypertension can develop suddenly during pregnancy. This is called preeclampsia and is increasing in the United States, particularly in Black women. In rare cases, it can become the life-threatening condition eclampsia, with seizures and death.

Three-time Olympic medalist and world champion sprinter Tori Bowie was found dead in June of apparent complications of pregnancy. The medical examiner’s office in Orange County, Fla., said she was believed to have been in her 8th month of pregnancy and may have died of eclampsia.

Heart conditions in pregnant women are one of a long list of reasons why the United States has the highest maternal mortality rate of any developed country. But the risk is marked by significant racial differences, with death rates three times higher in Black women, compared with White women.

Rates of maternal mortality have increased in recent years. In 2021, 1,205 women died of pregnancy-related causes, compared with 861 in 2020.

What troubles many experts is that it is estimated that 80% of these deaths are preventable.

“That is a ridiculous number,” said Melissa A. Simon, MD, MPH, director of the Center for Health Equity Transformation at Northwestern Medicine in Evanston, Ill.. “For a health care system in a country that is so high-resourced and high-income, for 8 out of 10 deaths for moms who are pregnant [to be preventable], that’s absolutely unacceptable.”

Pregnant women are not only at risk of death from cardiovascular complications, but other types of problems, including hemorrhage, thrombotic embolism, and infection.

But experts now are focusing attention on nonmedical reasons for maternal mortality, such as racial disparities and the fundamental issue of whether women are telling doctors about their symptoms but are not being heard. 

The government has acknowledged the depth of this problem with the Centers for Disease Control and Prevention’s “Hear Her” campaign, which includes videos of women who describe how their health professionals did not take their concerns seriously.

In one such video, a woman named Sanari says 2 days after the birth of her second child, she started developing soreness.

“By day 3, it just didn’t feel right. I asked the nurses, explained my symptoms and that I was having crazy pains, and they assured me it was just gas,” she says on the video.

Sanari described how she started to have odorous discharge and ended up in an emergency room at a different hospital. Health care providers found a large abscess on her uterus.

“I’m glad I didn’t stop at no, and I’m glad someone finally heard me – someone finally listened to me,” she said.

“Hear Her” featured another woman named Lindsay, who had preeclampsia in her first pregnancy and began to get symptoms during her second pregnancy.

She describes how she voiced her concerns to her doctors, saying, “sometimes it would be, ‘Oh, you’re pregnant and your feet are supposed to swell. … It’s just fine.’ But I didn’t feel fine.”

The campaign aims to raise awareness of warning signs that require fast medical attention to prevent pregnancy-related deaths.

But Shanna Cox, associate director of the CDC’s Division of Reproductive Health, said the agency has collected many stories of women who died or nearly died because their concerns were not being addressed properly.

Ms. Cox says another part of the campaign “is really focused on health care providers and listening … to their patients, providing that respectful patient-centered care to be sure that all their concerns are addressed.”

And some experts believe the thinking has shifted even more dramatically.

“We’ve moved from beyond the days of blaming the individual, the birth person, or the woman, to say you haven’t done this, you haven’t come into health care, you are not taking care of yourself, you aren’t keeping your appointments,” says Laurie Zephyrin, MD, MPH, vice president of the Commonwealth Fund, a private foundation in New York dedicated to improving health care. 

Dr. Zephyrin says the health care system falls short of providing equitable, quality care. “There’s data that shows Black people receive worse care than White people for about 40% of quality measures,” she said.

These disparities have led to the formation of organizations like National Birth Equity Collaborative, an advocacy group in New Orleans working to improve maternal care for Black patients.

Carmen Green, vice president of research and strategy, said institutional racism has been embedded into some health care providers.

“They have this hierarchy that teaches them they have to manage, they have to control, they have to direct the medical experience, and that is just not how birthing works,” she said.

She used the example of the birth experience as a car ride, where the mothers have been in the backseat with the doctor driving. “We want the birthing person in the driving seat and want [them] to be respected as a person who is deciding where that destination is going,” Ms. Green said.

She says health providers often “blame the mamas” based on assumptions, stereotypes, and biases against low-income people.

So how is American medicine responding to the medical and social causes of maternal mortality?

This news organization surveyed 10 medical centers ranked by U.S. News & World Report as the country’s top facilities for obstetrics. They were asked what programs they had and studies they had done to try to reduce maternal mortality, improve racial disparities, and target cardiovascular causes of maternal mortality.

One of the most extensive programs was founded at the Stanford School of Medicine in Stanford, Calif., in 2006. The California Maternal Quality Care Collaborative includes 200 hospitals in the state committed to ending preventable maternal mortality and racial disparities.

Nine hospitals in the collaborative have started programs to reduce hemorrhages, manage high blood pressure disorders, and reduce the rate of cesarean deliveries. All are important reasons for maternal mortality.

These programs helped bring about a 62% reduction in California’s maternal mortality rate from 2006 to 2016. And 2023 figures show that California has the lowest maternal mortality rate of any state.

Alabama has the sixth highest rate of maternal mortality in the nation. The University of Alabama at Birmingham wants to address the racial disparities in maternal mortality with a cooperative called the P3 EQUATE Network.

The network is part of a $20 million program by the American Heart Association to gain greater understanding of the disproportionate effect of maternal mortality on Black and Native American people.

The program works with pregnant and postpartum women “to discover ways to reduce racism and social problems that contribute to poor health outcomes.”

In addition to collaborative efforts, the survey found maternal mortality programs at all the top medical centers.

NewYork-Presbyterian Hospital has a Mothers Center that provides specialized care to pregnant women with complications.

The University of Chicago Medical Center established a program called “Systematic Treatment and Management of Postpartum Hypertension” that includes patient and staff education, standardized hospital discharge instructions, and a follow-up in a postpartum hypertension clinic.

A 2021 study found that the program had helped increase the number of postpartum women who correctly follow blood pressure control guidance.

A program called MOMS Navigation at Northwell Health in Long Island, N.Y., provides support to high-risk mothers. The program decreased 30-day readmission rates for all patients by 50% and for Black birthing patients by 60%. Reducing readmission is an important measure for reducing complications.

Vanderbilt University Medical Center in Nashville has what it calls the first-of-its-kind educational podcasts Healthy Mom Healthy Baby, where 30% of the content is devoted to health disparities.

And several centers, including Brigham and Women’s Hospital in Boston and NewYork-Presbyterian, make sure mothers have access to doulas – professional support people trained in the needs of the family during pregnancy and childbirth.

The survey found that 9 of the 10 centers have obstetric programs devoted to cardiac care, including the University of Chicago, Stanford Medicine, UCLA, and the Cleveland Clinic. 

But the survey results raise the question: How can we have these programs and research at our best obstetrics centers devoted to reducing maternal mortality and have the highest rate of all developed countries?

“Maternal mortality largely falls on pregnant and birthing persons who do not intersect with, nor are touched, by the best obstetrical care centers in the country,” Dr. Simon said.

Unfortunately, she said, the pregnant people who face “high maternal mortality rates … face all the access-to-care barriers and do not have the privilege of birthing or accessing care at top centers.”

Anne Hutchinson believed going to a top center – the Cleveland Clinic – would give her a good chance of safely delivering a second child.

Karlee Hoffman, DO, a cardiologist in the hospital’s cardio-obstetric high-risk clinic, said Ms. Hutchinson “came to me, she was determined to have another child, and she said, ‘Please help me do this. I’m doing it regardless. So, I would really like your support in moving forward,’” Dr. Hoffman recalls.

Ms. Hutchinson said Cleveland Clinic doctors told her she had a 20%-30% chance of peripartum cardiomyopathy again if she had a second child. If that happened, the risks “ranged from mild decompensation of my heart function to death,“ she said.

Ms. Hutchinson and her husband decided to go ahead with the pregnancy. Her parents cried when they found out. But Ms. Hutchinson says she was confident in the cardio obstetric team at Cleveland Clinic.

Her fertility medicine raised the possibility of multiple births, which would be a definite threat to her life. Her heart failure medicine, Entresto, could not be used during pregnancy, so her doctors put her on older medicines.

She got pregnant in June 2022 and developed gestational diabetes, which can affect pregnancy because of raised blood sugar. Another potential risk. She was carefully monitored by the specialists and hospitalized once.

At 37 weeks, she was induced and had a forceps delivery. On Feb. 15, 2023, her second daughter, Charlotte, was born.

Ms. Hutchinson was asked to write about how she felt when she delivered Charlotte:

“I am not sure how to put into words the love, joy, and elation that I felt holding Charlotte for the first time. As I write this, I have tears of joy in my eyes thinking of that moment. I had prayed for her for so long and after being told I couldn’t or shouldn’t have any more children.”

“I felt that Charlotte and I were forever bonded in triumph from that moment on. We did it and made it out alive! And our family was now complete. I have so much joy watching the love that is growing between Charlotte and Lillian. Life is truly amazing, and I am forever grateful to have them.”

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

Medical students are taking more control over how and when they learn. It’s a practice propelled by the pandemic, but it started long before COVID shifted many traditional classrooms to virtual education.

New technologies, including online lectures and guided-lesson websites, along with alternative teaching methods, such as the flipped classroom model, in which med students complete before-class assignments and participate in group projects, are helping to train future physicians for their medical careers.

So though students may not be attending in-person lectures like they did in the past, proponents of online learning say the education students receive and the subsequent care they deliver remains the same.

The Association of American Medical Colleges’ most recent annual survey of 2nd-year medical students found that 25% “almost never” attended their in-person lectures in 2022. The figure has steadily improved since 2020 but mirrors what AAMC recorded in 2017.

“The pandemic may have exacerbated the trend, but it’s a long-standing issue,” said Katherine McOwen, senior director of educational and student affairs at AAMC. She said in an interview that she’s witnessed the pattern for 24 years in her work with medical schools.

“I know it sounds alarming that students aren’t attending lectures. But that doesn’t mean they’re not learning,” said Ahmed Ahmed, MD, MPP, MSc, a recent graduate of Harvard Medical School and now a resident at Brigham and Women’s Hospital, Boston.

Today’s generation of medical students grew up in the age of technology. They are comfortable in front of the screen, so it makes sense for them to learn certain aspects of medical sciences and public health in the same way, Dr. Ahmed told this news organization.

Dr. Ahmed said that at Harvard he participated in one or two case-based classes per week that followed a flipped classroom model, which allows students to study topics on their own before discussing in a lecture format as a group. “We had to come up with a diagnostic plan and walk through the case slide by slide,” he said. “It got us to think like a clinician.”

The flipped classroom allows students to study at their own pace using their preferred learning style, leading to more collaboration in the classroom and between students, according to a 2022 article on the “new standard in medical education” published in Trends in Anaesthesia & Critical Care.

Students use online education tools to complete pre-class assignments such as watching short videos, listening to podcasts, or reading journal articles. In-class time can then be used to cement and create connections through discussions, interactive exercises, group learning, and case studies, the article stated.

Benefits of the flipped classroom include student satisfaction, learner motivation, and faculty interest in learning new teaching methods, according to the article: “Students are performing at least as well as those who attended traditional lectures, while some studies in select health care settings show increased retention in flipped classroom settings.”

Another study on the flipped classroom, published in 2018 in BMC Medical Education found that the teaching method was superior to traditional classrooms for health professions education. Researchers focused specifically on flipped classrooms that provided prerecorded videos to students.

Molly Cooke, MD, director of education for global health sciences at the University of California, San Francisco, School of Medicine, said that the school no longer requires attendance at lectures. “Personally, my position is that medical students are very busy people and make, by and large, rational decisions about how to spend their time. As learning and retention from 50-minute lectures has been shown for decades to be poor, I think it’s perfectly reasonable to watch lectures on their own time.”

Dr. Ahmed agrees. “By our standards, the old model is archaic. It’s passive, and instead we should be encouraging lifelong, self-directed learning.”

To that end, Dr. Ahmed and his fellow students also relied heavily during medical school on secondary educational sources such as Boards and Beyond and Sketchy. “There’s an entire community of medical school students across the country using them,” Dr. Ahmed explained. “You can learn what you need in a tenth of the time of lectures.”

Today lectures only provide a portion of the information delivered to students, Dr. McGowen said. “They also learn in small groups, in problem-solving sessions, and in clinical experiences, all of which make up the meat of their education.”

The purpose of medical school is to prepare students for residency, she added. “Medical school education is very different from other types of education. Students are examined in a variety of ways before they move on to residency and ultimately, practice.”

For example, every student must pass the three-part United States Medical Licensing Examination. Students complete the first two parts in medical school and the third part during residency. “The tests represent a combination of everything students have learned, from lectures, clinical time, and in self-directed learning,” Dr. McGowen said.

Post pandemic, the tools and styles of learning in medical education have changed, and they are likely to continue to evolve along with students and technology, according to the 2022 article on the flipped classroom. “The future of medical education will continue to move in ways that embrace digital technology, as this is what digital native learners are increasingly expecting for their health care education,” states the article.

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

Medical students are taking more control over how and when they learn. It’s a practice propelled by the pandemic, but it started long before COVID shifted many traditional classrooms to virtual education.

New technologies, including online lectures and guided-lesson websites, along with alternative teaching methods, such as the flipped classroom model, in which med students complete before-class assignments and participate in group projects, are helping to train future physicians for their medical careers.

So though students may not be attending in-person lectures like they did in the past, proponents of online learning say the education students receive and the subsequent care they deliver remains the same.

The Association of American Medical Colleges’ most recent annual survey of 2nd-year medical students found that 25% “almost never” attended their in-person lectures in 2022. The figure has steadily improved since 2020 but mirrors what AAMC recorded in 2017.

“The pandemic may have exacerbated the trend, but it’s a long-standing issue,” said Katherine McOwen, senior director of educational and student affairs at AAMC. She said in an interview that she’s witnessed the pattern for 24 years in her work with medical schools.

“I know it sounds alarming that students aren’t attending lectures. But that doesn’t mean they’re not learning,” said Ahmed Ahmed, MD, MPP, MSc, a recent graduate of Harvard Medical School and now a resident at Brigham and Women’s Hospital, Boston.

Today’s generation of medical students grew up in the age of technology. They are comfortable in front of the screen, so it makes sense for them to learn certain aspects of medical sciences and public health in the same way, Dr. Ahmed told this news organization.

Dr. Ahmed said that at Harvard he participated in one or two case-based classes per week that followed a flipped classroom model, which allows students to study topics on their own before discussing in a lecture format as a group. “We had to come up with a diagnostic plan and walk through the case slide by slide,” he said. “It got us to think like a clinician.”

The flipped classroom allows students to study at their own pace using their preferred learning style, leading to more collaboration in the classroom and between students, according to a 2022 article on the “new standard in medical education” published in Trends in Anaesthesia & Critical Care.

Students use online education tools to complete pre-class assignments such as watching short videos, listening to podcasts, or reading journal articles. In-class time can then be used to cement and create connections through discussions, interactive exercises, group learning, and case studies, the article stated.

Benefits of the flipped classroom include student satisfaction, learner motivation, and faculty interest in learning new teaching methods, according to the article: “Students are performing at least as well as those who attended traditional lectures, while some studies in select health care settings show increased retention in flipped classroom settings.”

Another study on the flipped classroom, published in 2018 in BMC Medical Education found that the teaching method was superior to traditional classrooms for health professions education. Researchers focused specifically on flipped classrooms that provided prerecorded videos to students.

Molly Cooke, MD, director of education for global health sciences at the University of California, San Francisco, School of Medicine, said that the school no longer requires attendance at lectures. “Personally, my position is that medical students are very busy people and make, by and large, rational decisions about how to spend their time. As learning and retention from 50-minute lectures has been shown for decades to be poor, I think it’s perfectly reasonable to watch lectures on their own time.”

Dr. Ahmed agrees. “By our standards, the old model is archaic. It’s passive, and instead we should be encouraging lifelong, self-directed learning.”

To that end, Dr. Ahmed and his fellow students also relied heavily during medical school on secondary educational sources such as Boards and Beyond and Sketchy. “There’s an entire community of medical school students across the country using them,” Dr. Ahmed explained. “You can learn what you need in a tenth of the time of lectures.”

Today lectures only provide a portion of the information delivered to students, Dr. McGowen said. “They also learn in small groups, in problem-solving sessions, and in clinical experiences, all of which make up the meat of their education.”

The purpose of medical school is to prepare students for residency, she added. “Medical school education is very different from other types of education. Students are examined in a variety of ways before they move on to residency and ultimately, practice.”

For example, every student must pass the three-part United States Medical Licensing Examination. Students complete the first two parts in medical school and the third part during residency. “The tests represent a combination of everything students have learned, from lectures, clinical time, and in self-directed learning,” Dr. McGowen said.

Post pandemic, the tools and styles of learning in medical education have changed, and they are likely to continue to evolve along with students and technology, according to the 2022 article on the flipped classroom. “The future of medical education will continue to move in ways that embrace digital technology, as this is what digital native learners are increasingly expecting for their health care education,” states the article.

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

Medical students are taking more control over how and when they learn. It’s a practice propelled by the pandemic, but it started long before COVID shifted many traditional classrooms to virtual education.

New technologies, including online lectures and guided-lesson websites, along with alternative teaching methods, such as the flipped classroom model, in which med students complete before-class assignments and participate in group projects, are helping to train future physicians for their medical careers.

So though students may not be attending in-person lectures like they did in the past, proponents of online learning say the education students receive and the subsequent care they deliver remains the same.

The Association of American Medical Colleges’ most recent annual survey of 2nd-year medical students found that 25% “almost never” attended their in-person lectures in 2022. The figure has steadily improved since 2020 but mirrors what AAMC recorded in 2017.

“The pandemic may have exacerbated the trend, but it’s a long-standing issue,” said Katherine McOwen, senior director of educational and student affairs at AAMC. She said in an interview that she’s witnessed the pattern for 24 years in her work with medical schools.

“I know it sounds alarming that students aren’t attending lectures. But that doesn’t mean they’re not learning,” said Ahmed Ahmed, MD, MPP, MSc, a recent graduate of Harvard Medical School and now a resident at Brigham and Women’s Hospital, Boston.

Today’s generation of medical students grew up in the age of technology. They are comfortable in front of the screen, so it makes sense for them to learn certain aspects of medical sciences and public health in the same way, Dr. Ahmed told this news organization.

Dr. Ahmed said that at Harvard he participated in one or two case-based classes per week that followed a flipped classroom model, which allows students to study topics on their own before discussing in a lecture format as a group. “We had to come up with a diagnostic plan and walk through the case slide by slide,” he said. “It got us to think like a clinician.”

The flipped classroom allows students to study at their own pace using their preferred learning style, leading to more collaboration in the classroom and between students, according to a 2022 article on the “new standard in medical education” published in Trends in Anaesthesia & Critical Care.

Students use online education tools to complete pre-class assignments such as watching short videos, listening to podcasts, or reading journal articles. In-class time can then be used to cement and create connections through discussions, interactive exercises, group learning, and case studies, the article stated.

Benefits of the flipped classroom include student satisfaction, learner motivation, and faculty interest in learning new teaching methods, according to the article: “Students are performing at least as well as those who attended traditional lectures, while some studies in select health care settings show increased retention in flipped classroom settings.”

Another study on the flipped classroom, published in 2018 in BMC Medical Education found that the teaching method was superior to traditional classrooms for health professions education. Researchers focused specifically on flipped classrooms that provided prerecorded videos to students.

Molly Cooke, MD, director of education for global health sciences at the University of California, San Francisco, School of Medicine, said that the school no longer requires attendance at lectures. “Personally, my position is that medical students are very busy people and make, by and large, rational decisions about how to spend their time. As learning and retention from 50-minute lectures has been shown for decades to be poor, I think it’s perfectly reasonable to watch lectures on their own time.”

Dr. Ahmed agrees. “By our standards, the old model is archaic. It’s passive, and instead we should be encouraging lifelong, self-directed learning.”

To that end, Dr. Ahmed and his fellow students also relied heavily during medical school on secondary educational sources such as Boards and Beyond and Sketchy. “There’s an entire community of medical school students across the country using them,” Dr. Ahmed explained. “You can learn what you need in a tenth of the time of lectures.”

Today lectures only provide a portion of the information delivered to students, Dr. McGowen said. “They also learn in small groups, in problem-solving sessions, and in clinical experiences, all of which make up the meat of their education.”

The purpose of medical school is to prepare students for residency, she added. “Medical school education is very different from other types of education. Students are examined in a variety of ways before they move on to residency and ultimately, practice.”

For example, every student must pass the three-part United States Medical Licensing Examination. Students complete the first two parts in medical school and the third part during residency. “The tests represent a combination of everything students have learned, from lectures, clinical time, and in self-directed learning,” Dr. McGowen said.

Post pandemic, the tools and styles of learning in medical education have changed, and they are likely to continue to evolve along with students and technology, according to the 2022 article on the flipped classroom. “The future of medical education will continue to move in ways that embrace digital technology, as this is what digital native learners are increasingly expecting for their health care education,” states the article.

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

A growing number of long COVID patients, denied disability benefits despite being unable to work, are turning to the courts for legal relief.

At least 30 lawsuits have been filed seeking legal resolution of disability insurance claims, according to searches of court records. In addition, the Social Security Administration said it has received about 52,000 disability claims tied to SARS-CoV-2 infections, which represents 1% of all applications.

But legal experts say those cases may not reflect the total number of cases that have gone to court. They note many claims are initially dismissed and are not appealed by claimants.

“With this system, they deny two-thirds of initial applications, then people who appeal get denied almost 90% of the time, and then they can appeal before a judge,” said Kevin LaPorte, a Social Security disability attorney at LaPorte Law Firm in Oakland, Calif. “What happens next doesn’t have a lot of precedent because long COVID is a mass disabling event, and we haven’t seen that many of these cases get all the way through the legal system yet.”

As a result, the exact number of long COVID disability claims and the number of these cases going to court isn’t clear, he said.

“It can take a year or more for cases to get to court, and even longer to reach resolution,” Mr. LaPorte added. “I suspect the few cases we’ve heard about at this point are going to be the tip of the iceberg.”

The process is convoluted and can drag on for months with multiple denials and appeals along the way. Many disabled workers find their only recourse is to take insurers to court.

Long COVID patients typically apply for disability benefits through private insurance or Social Security. But the process can drag on for months, so many find their only recourse is to take insurers to court, according to legal experts.

But even in the courts, many encounter delays and hurdles to resolution.

In one of the first federal lawsuits involving long COVID disability benefits, William Abrams, a trial and appellate attorney and active marathon runner, sued Unum Life Insurance seeking long-term disability income. Symptoms included extreme fatigue, brain fog, decreased attention and concentration, and nearly daily fevers, causing him to stop working in April 2020.

His diagnosis wasn’t definitive. Three doctors said he had long COVID, and four said he had chronic fatigue syndrome. Unum cited this inconsistency as a rationale for rejecting his claim. But the court sided with Mr. Abrams, granting him disability income. The court concluded: “Unum may be correct that [the plaintiff] has not been correctly diagnosed. But that does not mean he is not sick. If [the plaintiff’s] complaints, and [the doctor’s] assessments, are to be believed, [the plaintiff] cannot focus for more than a few minutes at a time, making it impossible for [the plaintiff] to perform the varied and complex tasks his job requires.”

Unum said in an emailed statement that the company doesn’t comment on specific claims as a matter of policy, adding that its total payouts for disability claims from March 2020 to February 2022 were 35% higher than prepandemic levels. “In general, disability and leave claims connected to COVID-19 have been primarily short-term events with the majority of claimants recovering prior to completing the normal qualification period for long-term disability insurance,” Unum said.

Mr. Abrams prevailed in part because he had detailed documentation of the numerous impairments that eventually required him to stop work, said Michelle Roberts of Roberts Disability Law in Oakland, Calif.

He submitted videos of himself taking his temperature to prove he had almost daily fevers, according to court records. He underwent neuropsychological testing, which found learning deficiencies and memory deficits.

Mr. Abrams also submitted statements from a colleague who worked with him on a complex technology patent case involving radiofrequency identification. Before he got COVID, Mr. Abrams “had the analytical ability, legal acumen, and mental energy to attack that learning curve and get up to speed very rapidly,” according to court records.

“The court focused on credulity.” Ms. Roberts said. “There was all this work to be done to show this person was high functioning and ran marathons and worked in an intense, high-pressure occupation but then couldn’t do anything after long COVID.”

Documentation was also crucial in another early federal long COVID disability lawsuit that was filed in 2022 on behalf of Wendy Haut, an educational software sales representative in California who turned to the courts seeking disability income through her company’s employee benefits plan.

Several of Ms. Haut’s doctors documented a detailed list of long COVID symptoms, including “profound fatigue and extreme cognitive difficulties,” that they said prevented her from working as a sales representative or doing any other type of job. A settlement agreement in June 2022 required Reliance Standard Life Insurance to pay Ms. Haut long-term disability benefits, including previously unpaid benefits, according to a report by the advocacy group Pandemic Patients.

Representatives of Reliance Standard didn’t respond to a request for comment.

The growing number of workers being sidelined by long COVID makes more claims and more court cases likely. Right now, an estimated 16 million working-age Americans aged 18-65 years have long COVID, and as many as 4 million of them can’t work, according to a July 2023 Census Bureau report.

Uncertainty about the volume of claims in the pipeline is part of what’s driving some insurers to fight long COVID claims, Ms. Roberts said. Another factor is the lack of clarity around how many years people with long COVID may be out of work, particularly if they’re in their 30s or 40s and might be seeking disability income until they reach retirement age.

“Doctors are not always saying that this person will be permanently disabled,” Ms. Roberts said. “If this person doesn’t get better and they’re disabled until retirement age, this could be a payout in the high six or seven figures if a person is very young and was a very high earner.”

Insurance companies routinely deny claims that can’t be backed up with objective measures, such as specific lab test results or clear findings from a physical exam. But there are steps that can increase the odds of a successful claim for long COVID disability benefits, according to New York–based law firm Hiller.

For starters, patients can document COVID test results, and if testing wasn’t conducted, patients can detail the specific symptoms that led to this diagnosis, Hiller advises. Then patients can keep a daily symptom log at home that run lists all of the specific symptoms that occur at different times during the day and night to help establish a pattern of disability. These logs should provide specific details about every job duty patients have and exactly how specific symptoms of long COVID interfere with these duties.

Even though objective testing is hard to come by for long COVID, people should undergo all the tests they can that may help document the frequency or severity of specific symptoms that make it impossible to carry on with business as usual at work, Hiller advises. This may include neuropsychological testing to document brain fog, a cardiopulmonary exercise test to demonstrate chronic fatigue and the inability to exercise, or a tilt table test to measure dizziness.

Seeking a doctor’s diagnosis can be key to collecting disability payments, in or out of court.

All of this puts a lot of pressure on doctors and patients to build strong cases, said Jonathan Whiteson, MD, codirector of the NYU Langone Health post-COVID care program in New York. “Many physicians are not familiar with the disability benefit paperwork, and so this is a challenge for the doctors to know how to complete and to build the time into their highly scheduled days to take the time needed to complete.

“It’s also challenging because most of the disability benefit forms are ‘generic’ and do not ask specific questions about COVID disability,” Dr. Whiteson added. “It can be like trying to drive a square peg into a round hole.”

Still, when it comes to long COVID, completing disability paperwork is increasingly becoming part of standard care, along with managing medication, rehabilitation therapies, and lifestyle changes to navigate daily life with this illness, Dr. Whiteson noted.

Monica Verduzco-Gutierrez, MD, chair of rehabilitation medicine and director of the Post-COVID-19 Recovery Clinic at the University of Texas Health Science Center, San Antonio, agreed with this assessment.

“I have done letter upon letter of appeal to disability insurance companies,” she said.

Some doctors, however, are reluctant to step up in such cases, in part because no standard diagnostic guidelines exist for long COVID and because it can be frustrating.

“This is the work that is not paid and causes burnout in physicians,” Dr. Verduzco-Gutierrez said. “The paperwork, the fighting with insurance companies, the resubmission of forms for disability all to get what your patient needs – and then it gets denied.

“We will keep doing this because our patients need this disability income in order to live their lives and to afford what they need for recovery,” said Dr. Verduzco-Gutierrez. “But at some point something has to change because this isn’t sustainable.”

A version of this article appeared on Medscape.com.

A growing number of long COVID patients, denied disability benefits despite being unable to work, are turning to the courts for legal relief.

At least 30 lawsuits have been filed seeking legal resolution of disability insurance claims, according to searches of court records. In addition, the Social Security Administration said it has received about 52,000 disability claims tied to SARS-CoV-2 infections, which represents 1% of all applications.

But legal experts say those cases may not reflect the total number of cases that have gone to court. They note many claims are initially dismissed and are not appealed by claimants.

“With this system, they deny two-thirds of initial applications, then people who appeal get denied almost 90% of the time, and then they can appeal before a judge,” said Kevin LaPorte, a Social Security disability attorney at LaPorte Law Firm in Oakland, Calif. “What happens next doesn’t have a lot of precedent because long COVID is a mass disabling event, and we haven’t seen that many of these cases get all the way through the legal system yet.”

As a result, the exact number of long COVID disability claims and the number of these cases going to court isn’t clear, he said.

“It can take a year or more for cases to get to court, and even longer to reach resolution,” Mr. LaPorte added. “I suspect the few cases we’ve heard about at this point are going to be the tip of the iceberg.”

The process is convoluted and can drag on for months with multiple denials and appeals along the way. Many disabled workers find their only recourse is to take insurers to court.

Long COVID patients typically apply for disability benefits through private insurance or Social Security. But the process can drag on for months, so many find their only recourse is to take insurers to court, according to legal experts.

But even in the courts, many encounter delays and hurdles to resolution.

In one of the first federal lawsuits involving long COVID disability benefits, William Abrams, a trial and appellate attorney and active marathon runner, sued Unum Life Insurance seeking long-term disability income. Symptoms included extreme fatigue, brain fog, decreased attention and concentration, and nearly daily fevers, causing him to stop working in April 2020.

His diagnosis wasn’t definitive. Three doctors said he had long COVID, and four said he had chronic fatigue syndrome. Unum cited this inconsistency as a rationale for rejecting his claim. But the court sided with Mr. Abrams, granting him disability income. The court concluded: “Unum may be correct that [the plaintiff] has not been correctly diagnosed. But that does not mean he is not sick. If [the plaintiff’s] complaints, and [the doctor’s] assessments, are to be believed, [the plaintiff] cannot focus for more than a few minutes at a time, making it impossible for [the plaintiff] to perform the varied and complex tasks his job requires.”

Unum said in an emailed statement that the company doesn’t comment on specific claims as a matter of policy, adding that its total payouts for disability claims from March 2020 to February 2022 were 35% higher than prepandemic levels. “In general, disability and leave claims connected to COVID-19 have been primarily short-term events with the majority of claimants recovering prior to completing the normal qualification period for long-term disability insurance,” Unum said.

Mr. Abrams prevailed in part because he had detailed documentation of the numerous impairments that eventually required him to stop work, said Michelle Roberts of Roberts Disability Law in Oakland, Calif.

He submitted videos of himself taking his temperature to prove he had almost daily fevers, according to court records. He underwent neuropsychological testing, which found learning deficiencies and memory deficits.

Mr. Abrams also submitted statements from a colleague who worked with him on a complex technology patent case involving radiofrequency identification. Before he got COVID, Mr. Abrams “had the analytical ability, legal acumen, and mental energy to attack that learning curve and get up to speed very rapidly,” according to court records.

“The court focused on credulity.” Ms. Roberts said. “There was all this work to be done to show this person was high functioning and ran marathons and worked in an intense, high-pressure occupation but then couldn’t do anything after long COVID.”

Documentation was also crucial in another early federal long COVID disability lawsuit that was filed in 2022 on behalf of Wendy Haut, an educational software sales representative in California who turned to the courts seeking disability income through her company’s employee benefits plan.

Several of Ms. Haut’s doctors documented a detailed list of long COVID symptoms, including “profound fatigue and extreme cognitive difficulties,” that they said prevented her from working as a sales representative or doing any other type of job. A settlement agreement in June 2022 required Reliance Standard Life Insurance to pay Ms. Haut long-term disability benefits, including previously unpaid benefits, according to a report by the advocacy group Pandemic Patients.

Representatives of Reliance Standard didn’t respond to a request for comment.

The growing number of workers being sidelined by long COVID makes more claims and more court cases likely. Right now, an estimated 16 million working-age Americans aged 18-65 years have long COVID, and as many as 4 million of them can’t work, according to a July 2023 Census Bureau report.

Uncertainty about the volume of claims in the pipeline is part of what’s driving some insurers to fight long COVID claims, Ms. Roberts said. Another factor is the lack of clarity around how many years people with long COVID may be out of work, particularly if they’re in their 30s or 40s and might be seeking disability income until they reach retirement age.

“Doctors are not always saying that this person will be permanently disabled,” Ms. Roberts said. “If this person doesn’t get better and they’re disabled until retirement age, this could be a payout in the high six or seven figures if a person is very young and was a very high earner.”

Insurance companies routinely deny claims that can’t be backed up with objective measures, such as specific lab test results or clear findings from a physical exam. But there are steps that can increase the odds of a successful claim for long COVID disability benefits, according to New York–based law firm Hiller.

For starters, patients can document COVID test results, and if testing wasn’t conducted, patients can detail the specific symptoms that led to this diagnosis, Hiller advises. Then patients can keep a daily symptom log at home that run lists all of the specific symptoms that occur at different times during the day and night to help establish a pattern of disability. These logs should provide specific details about every job duty patients have and exactly how specific symptoms of long COVID interfere with these duties.

Even though objective testing is hard to come by for long COVID, people should undergo all the tests they can that may help document the frequency or severity of specific symptoms that make it impossible to carry on with business as usual at work, Hiller advises. This may include neuropsychological testing to document brain fog, a cardiopulmonary exercise test to demonstrate chronic fatigue and the inability to exercise, or a tilt table test to measure dizziness.

Seeking a doctor’s diagnosis can be key to collecting disability payments, in or out of court.

All of this puts a lot of pressure on doctors and patients to build strong cases, said Jonathan Whiteson, MD, codirector of the NYU Langone Health post-COVID care program in New York. “Many physicians are not familiar with the disability benefit paperwork, and so this is a challenge for the doctors to know how to complete and to build the time into their highly scheduled days to take the time needed to complete.

“It’s also challenging because most of the disability benefit forms are ‘generic’ and do not ask specific questions about COVID disability,” Dr. Whiteson added. “It can be like trying to drive a square peg into a round hole.”

Still, when it comes to long COVID, completing disability paperwork is increasingly becoming part of standard care, along with managing medication, rehabilitation therapies, and lifestyle changes to navigate daily life with this illness, Dr. Whiteson noted.

Monica Verduzco-Gutierrez, MD, chair of rehabilitation medicine and director of the Post-COVID-19 Recovery Clinic at the University of Texas Health Science Center, San Antonio, agreed with this assessment.

“I have done letter upon letter of appeal to disability insurance companies,” she said.

Some doctors, however, are reluctant to step up in such cases, in part because no standard diagnostic guidelines exist for long COVID and because it can be frustrating.

“This is the work that is not paid and causes burnout in physicians,” Dr. Verduzco-Gutierrez said. “The paperwork, the fighting with insurance companies, the resubmission of forms for disability all to get what your patient needs – and then it gets denied.

“We will keep doing this because our patients need this disability income in order to live their lives and to afford what they need for recovery,” said Dr. Verduzco-Gutierrez. “But at some point something has to change because this isn’t sustainable.”

A version of this article appeared on Medscape.com.

A growing number of long COVID patients, denied disability benefits despite being unable to work, are turning to the courts for legal relief.

At least 30 lawsuits have been filed seeking legal resolution of disability insurance claims, according to searches of court records. In addition, the Social Security Administration said it has received about 52,000 disability claims tied to SARS-CoV-2 infections, which represents 1% of all applications.

But legal experts say those cases may not reflect the total number of cases that have gone to court. They note many claims are initially dismissed and are not appealed by claimants.

“With this system, they deny two-thirds of initial applications, then people who appeal get denied almost 90% of the time, and then they can appeal before a judge,” said Kevin LaPorte, a Social Security disability attorney at LaPorte Law Firm in Oakland, Calif. “What happens next doesn’t have a lot of precedent because long COVID is a mass disabling event, and we haven’t seen that many of these cases get all the way through the legal system yet.”

As a result, the exact number of long COVID disability claims and the number of these cases going to court isn’t clear, he said.

“It can take a year or more for cases to get to court, and even longer to reach resolution,” Mr. LaPorte added. “I suspect the few cases we’ve heard about at this point are going to be the tip of the iceberg.”

The process is convoluted and can drag on for months with multiple denials and appeals along the way. Many disabled workers find their only recourse is to take insurers to court.

Long COVID patients typically apply for disability benefits through private insurance or Social Security. But the process can drag on for months, so many find their only recourse is to take insurers to court, according to legal experts.

But even in the courts, many encounter delays and hurdles to resolution.

In one of the first federal lawsuits involving long COVID disability benefits, William Abrams, a trial and appellate attorney and active marathon runner, sued Unum Life Insurance seeking long-term disability income. Symptoms included extreme fatigue, brain fog, decreased attention and concentration, and nearly daily fevers, causing him to stop working in April 2020.

His diagnosis wasn’t definitive. Three doctors said he had long COVID, and four said he had chronic fatigue syndrome. Unum cited this inconsistency as a rationale for rejecting his claim. But the court sided with Mr. Abrams, granting him disability income. The court concluded: “Unum may be correct that [the plaintiff] has not been correctly diagnosed. But that does not mean he is not sick. If [the plaintiff’s] complaints, and [the doctor’s] assessments, are to be believed, [the plaintiff] cannot focus for more than a few minutes at a time, making it impossible for [the plaintiff] to perform the varied and complex tasks his job requires.”

Unum said in an emailed statement that the company doesn’t comment on specific claims as a matter of policy, adding that its total payouts for disability claims from March 2020 to February 2022 were 35% higher than prepandemic levels. “In general, disability and leave claims connected to COVID-19 have been primarily short-term events with the majority of claimants recovering prior to completing the normal qualification period for long-term disability insurance,” Unum said.

Mr. Abrams prevailed in part because he had detailed documentation of the numerous impairments that eventually required him to stop work, said Michelle Roberts of Roberts Disability Law in Oakland, Calif.

He submitted videos of himself taking his temperature to prove he had almost daily fevers, according to court records. He underwent neuropsychological testing, which found learning deficiencies and memory deficits.

Mr. Abrams also submitted statements from a colleague who worked with him on a complex technology patent case involving radiofrequency identification. Before he got COVID, Mr. Abrams “had the analytical ability, legal acumen, and mental energy to attack that learning curve and get up to speed very rapidly,” according to court records.

“The court focused on credulity.” Ms. Roberts said. “There was all this work to be done to show this person was high functioning and ran marathons and worked in an intense, high-pressure occupation but then couldn’t do anything after long COVID.”

Documentation was also crucial in another early federal long COVID disability lawsuit that was filed in 2022 on behalf of Wendy Haut, an educational software sales representative in California who turned to the courts seeking disability income through her company’s employee benefits plan.

Several of Ms. Haut’s doctors documented a detailed list of long COVID symptoms, including “profound fatigue and extreme cognitive difficulties,” that they said prevented her from working as a sales representative or doing any other type of job. A settlement agreement in June 2022 required Reliance Standard Life Insurance to pay Ms. Haut long-term disability benefits, including previously unpaid benefits, according to a report by the advocacy group Pandemic Patients.

Representatives of Reliance Standard didn’t respond to a request for comment.

The growing number of workers being sidelined by long COVID makes more claims and more court cases likely. Right now, an estimated 16 million working-age Americans aged 18-65 years have long COVID, and as many as 4 million of them can’t work, according to a July 2023 Census Bureau report.

Uncertainty about the volume of claims in the pipeline is part of what’s driving some insurers to fight long COVID claims, Ms. Roberts said. Another factor is the lack of clarity around how many years people with long COVID may be out of work, particularly if they’re in their 30s or 40s and might be seeking disability income until they reach retirement age.

“Doctors are not always saying that this person will be permanently disabled,” Ms. Roberts said. “If this person doesn’t get better and they’re disabled until retirement age, this could be a payout in the high six or seven figures if a person is very young and was a very high earner.”

Insurance companies routinely deny claims that can’t be backed up with objective measures, such as specific lab test results or clear findings from a physical exam. But there are steps that can increase the odds of a successful claim for long COVID disability benefits, according to New York–based law firm Hiller.

For starters, patients can document COVID test results, and if testing wasn’t conducted, patients can detail the specific symptoms that led to this diagnosis, Hiller advises. Then patients can keep a daily symptom log at home that run lists all of the specific symptoms that occur at different times during the day and night to help establish a pattern of disability. These logs should provide specific details about every job duty patients have and exactly how specific symptoms of long COVID interfere with these duties.

Even though objective testing is hard to come by for long COVID, people should undergo all the tests they can that may help document the frequency or severity of specific symptoms that make it impossible to carry on with business as usual at work, Hiller advises. This may include neuropsychological testing to document brain fog, a cardiopulmonary exercise test to demonstrate chronic fatigue and the inability to exercise, or a tilt table test to measure dizziness.

Seeking a doctor’s diagnosis can be key to collecting disability payments, in or out of court.

All of this puts a lot of pressure on doctors and patients to build strong cases, said Jonathan Whiteson, MD, codirector of the NYU Langone Health post-COVID care program in New York. “Many physicians are not familiar with the disability benefit paperwork, and so this is a challenge for the doctors to know how to complete and to build the time into their highly scheduled days to take the time needed to complete.

“It’s also challenging because most of the disability benefit forms are ‘generic’ and do not ask specific questions about COVID disability,” Dr. Whiteson added. “It can be like trying to drive a square peg into a round hole.”

Still, when it comes to long COVID, completing disability paperwork is increasingly becoming part of standard care, along with managing medication, rehabilitation therapies, and lifestyle changes to navigate daily life with this illness, Dr. Whiteson noted.

Monica Verduzco-Gutierrez, MD, chair of rehabilitation medicine and director of the Post-COVID-19 Recovery Clinic at the University of Texas Health Science Center, San Antonio, agreed with this assessment.

“I have done letter upon letter of appeal to disability insurance companies,” she said.

Some doctors, however, are reluctant to step up in such cases, in part because no standard diagnostic guidelines exist for long COVID and because it can be frustrating.

“This is the work that is not paid and causes burnout in physicians,” Dr. Verduzco-Gutierrez said. “The paperwork, the fighting with insurance companies, the resubmission of forms for disability all to get what your patient needs – and then it gets denied.

“We will keep doing this because our patients need this disability income in order to live their lives and to afford what they need for recovery,” said Dr. Verduzco-Gutierrez. “But at some point something has to change because this isn’t sustainable.”

A version of this article appeared on Medscape.com.

BALTIMORE – Receiving the first dose of the human papillomavirus (HPV) vaccine at age 9, rather than bundling it with the Tdap and meningitis vaccines, appears to increase the likelihood that children will complete the HPV vaccine series, according to a retrospective cohort study of commercially insured youth presented at the annual clinical and scientific meeting of the American College of Obstetricians and Gynecologists. The research was published ahead of print in Human Vaccines and Immunotherapeutics.

Changing attitudes

“These findings are novel because they emphasize starting at age 9, and that is different than prior studies that emphasize bundling of these vaccines,” Kevin Ault, MD, professor and chair of the department of obstetrics and gynecology at Western Michigan University Homer Stryker MD School of Medicine and a former member of the CDC’s Advisory Committee on Immunization Practices, said in an interview.

Dr. Ault was not involved in the study but noted that these findings support the AAP’s recommendation to start the HPV vaccine series at age 9. The Centers for Disease Control and Prevention currently recommends giving the first dose of the HPV vaccine at ages 11-12, at the same time as the Tdap and meningitis vaccines. This recommendation to “bundle” the HPV vaccine with the Tdap and meningitis vaccines aims to facilitate provider-family discussion about the HPV vaccine, ideally reducing parent hesitancy and concerns about the vaccines. Multiple studies have shown improved HPV vaccine uptake when providers offer the HPV vaccine at the same time as the Tdap and meningococcal vaccines.

However, shifts in parents’ attitudes have occurred toward the HPV vaccine since those studies on bundling: Concerns about sexual activity have receded while concerns about safety remain high. The American Academy of Pediatrics and the American Cancer Society both advise starting the HPV vaccine series at age 9, based on evidence showing that more children complete the series when they get the first shot before age 11 compared to getting it at 11 or 12.

“The bundling was really to vaccinate people by the age of 13, thinking that onset of sexual activity was after that,” study author Sidika Kajtezovic, MD, a resident at Boston Medical Center and Boston University Obstetrics and Gynecology, said in an interview. But Dr. Kajtezovic said she delivers babies for 13-year-old patients. “Kids are having sex sooner or sooner.” It’s also clear that using the bundling strategy is not making up the entire gap right now: Ninety percent of children are getting the meningococcal vaccine while only 49% are getting the HPV vaccine, Dr. Kajtezovic pointed out. “There’s a disconnect happening there, even with the bundling,” she said.
 

Debundling vaccines

Dr. Kajtezovic and her colleagues used a national database of employee-sponsored health insurance to analyze the records of 100,857 children who were continuously enrolled in a plan from age 9 in 2015 to age 13 in 2019. They calculated the odds of children completing the HPV vaccine series based on whether they started the series before, at the same time as, or after the Tdap vaccination.

Youth who received the HPV vaccine before their Tdap vaccine had 38% greater odds of completing the series – getting both doses – than did those who received the HPV vaccine at the same time as the Tdap vaccine. Meanwhile, in line with prior evidence, those who got the first HPV dose after their Tdap were less likely – 68% lower odds – to complete the two- or three-dose (if starting above age 14) series.

The researchers identified several other factors that were linked to completing the HPV vaccine series. Females had greater odds than did males of completing the series, as did those living in urban, rather than rural, areas. Other factors associated with completing the series included living in the Northeast United States and receiving primary care from a pediatrician rather than a family medicine physician.
 

Timing is important

“I am encouraged by the findings of this study,” Dr. Ault said in an interview. “However, I would have liked the authors to expand the age range a bit higher. There are data that continuing to discuss the HPV vaccine with parents and teens will increase uptake into the later teen years.”

One challenge is that research shows attendance at primary care visits declines in older adolescence. Since there is no second Tdap or meningitis shot, families need to return for the second HPV vaccine dose after those shots, though they could get the second dose at the same time as other two vaccines if they receive the first dose before age 11. There’s also evidence suggesting that providers find conversations about the HPV vaccine easier when sexual activity is not the focus.

“I often feel that, before a child reaches adolescence, they’re almost, in a way, not sexualized yet, so talking about cancer prevention for an 8- or 9-year-old sometimes sounds a little different to patients versus protecting your 12-year-old, who’s starting to go through adolescence and developing breasts” and other signs of puberty, Dr. Kajtezovic said. Keeping the focus of HPV vaccine discussions on cancer prevention also allows providers to point out the protection against anal cancer, vulvar cancer, vaginal cancer, and head and neck cancer. “They are horrible, and even if they’re treatable, they’re often very hard to treat at an advanced stage,” Dr. Kajtezovic said. “The surgery required is so life disabling and disfiguring.”

The HPV Roundtable advises continuing bundling at practices having success with it but encourages practices to consider earlier vaccination if their uptake is lagging. Quality improvement initiatives, such as earlier electronic medical record prompts and multi-level interventions in pediatric practices, have shown substantial increases in HPV vaccine uptake at 9 and 10 years old. One survey in 2021 found that one in five primary care providers already routinely recommend the HPV vaccine at ages 9-10, and nearly half of others would consider doing so.

“My hope is in the next few years, when [the CDC] refreshes their vaccine recommendations, that they will either unbundle it or move the bar a few years earlier so that you can initiate it to encourage earlier initiation,” Dr. Kajtezovic said.

Dr. Ault had no other disclosures besides prior service on ACIP. Dr. Kajtezovic had no disclosures.

BALTIMORE – Receiving the first dose of the human papillomavirus (HPV) vaccine at age 9, rather than bundling it with the Tdap and meningitis vaccines, appears to increase the likelihood that children will complete the HPV vaccine series, according to a retrospective cohort study of commercially insured youth presented at the annual clinical and scientific meeting of the American College of Obstetricians and Gynecologists. The research was published ahead of print in Human Vaccines and Immunotherapeutics.

Changing attitudes

“These findings are novel because they emphasize starting at age 9, and that is different than prior studies that emphasize bundling of these vaccines,” Kevin Ault, MD, professor and chair of the department of obstetrics and gynecology at Western Michigan University Homer Stryker MD School of Medicine and a former member of the CDC’s Advisory Committee on Immunization Practices, said in an interview.

Dr. Ault was not involved in the study but noted that these findings support the AAP’s recommendation to start the HPV vaccine series at age 9. The Centers for Disease Control and Prevention currently recommends giving the first dose of the HPV vaccine at ages 11-12, at the same time as the Tdap and meningitis vaccines. This recommendation to “bundle” the HPV vaccine with the Tdap and meningitis vaccines aims to facilitate provider-family discussion about the HPV vaccine, ideally reducing parent hesitancy and concerns about the vaccines. Multiple studies have shown improved HPV vaccine uptake when providers offer the HPV vaccine at the same time as the Tdap and meningococcal vaccines.

However, shifts in parents’ attitudes have occurred toward the HPV vaccine since those studies on bundling: Concerns about sexual activity have receded while concerns about safety remain high. The American Academy of Pediatrics and the American Cancer Society both advise starting the HPV vaccine series at age 9, based on evidence showing that more children complete the series when they get the first shot before age 11 compared to getting it at 11 or 12.

“The bundling was really to vaccinate people by the age of 13, thinking that onset of sexual activity was after that,” study author Sidika Kajtezovic, MD, a resident at Boston Medical Center and Boston University Obstetrics and Gynecology, said in an interview. But Dr. Kajtezovic said she delivers babies for 13-year-old patients. “Kids are having sex sooner or sooner.” It’s also clear that using the bundling strategy is not making up the entire gap right now: Ninety percent of children are getting the meningococcal vaccine while only 49% are getting the HPV vaccine, Dr. Kajtezovic pointed out. “There’s a disconnect happening there, even with the bundling,” she said.
 

Debundling vaccines

Dr. Kajtezovic and her colleagues used a national database of employee-sponsored health insurance to analyze the records of 100,857 children who were continuously enrolled in a plan from age 9 in 2015 to age 13 in 2019. They calculated the odds of children completing the HPV vaccine series based on whether they started the series before, at the same time as, or after the Tdap vaccination.

Youth who received the HPV vaccine before their Tdap vaccine had 38% greater odds of completing the series – getting both doses – than did those who received the HPV vaccine at the same time as the Tdap vaccine. Meanwhile, in line with prior evidence, those who got the first HPV dose after their Tdap were less likely – 68% lower odds – to complete the two- or three-dose (if starting above age 14) series.

The researchers identified several other factors that were linked to completing the HPV vaccine series. Females had greater odds than did males of completing the series, as did those living in urban, rather than rural, areas. Other factors associated with completing the series included living in the Northeast United States and receiving primary care from a pediatrician rather than a family medicine physician.
 

Timing is important

“I am encouraged by the findings of this study,” Dr. Ault said in an interview. “However, I would have liked the authors to expand the age range a bit higher. There are data that continuing to discuss the HPV vaccine with parents and teens will increase uptake into the later teen years.”

One challenge is that research shows attendance at primary care visits declines in older adolescence. Since there is no second Tdap or meningitis shot, families need to return for the second HPV vaccine dose after those shots, though they could get the second dose at the same time as other two vaccines if they receive the first dose before age 11. There’s also evidence suggesting that providers find conversations about the HPV vaccine easier when sexual activity is not the focus.

“I often feel that, before a child reaches adolescence, they’re almost, in a way, not sexualized yet, so talking about cancer prevention for an 8- or 9-year-old sometimes sounds a little different to patients versus protecting your 12-year-old, who’s starting to go through adolescence and developing breasts” and other signs of puberty, Dr. Kajtezovic said. Keeping the focus of HPV vaccine discussions on cancer prevention also allows providers to point out the protection against anal cancer, vulvar cancer, vaginal cancer, and head and neck cancer. “They are horrible, and even if they’re treatable, they’re often very hard to treat at an advanced stage,” Dr. Kajtezovic said. “The surgery required is so life disabling and disfiguring.”

The HPV Roundtable advises continuing bundling at practices having success with it but encourages practices to consider earlier vaccination if their uptake is lagging. Quality improvement initiatives, such as earlier electronic medical record prompts and multi-level interventions in pediatric practices, have shown substantial increases in HPV vaccine uptake at 9 and 10 years old. One survey in 2021 found that one in five primary care providers already routinely recommend the HPV vaccine at ages 9-10, and nearly half of others would consider doing so.

“My hope is in the next few years, when [the CDC] refreshes their vaccine recommendations, that they will either unbundle it or move the bar a few years earlier so that you can initiate it to encourage earlier initiation,” Dr. Kajtezovic said.

Dr. Ault had no other disclosures besides prior service on ACIP. Dr. Kajtezovic had no disclosures.

BALTIMORE – Receiving the first dose of the human papillomavirus (HPV) vaccine at age 9, rather than bundling it with the Tdap and meningitis vaccines, appears to increase the likelihood that children will complete the HPV vaccine series, according to a retrospective cohort study of commercially insured youth presented at the annual clinical and scientific meeting of the American College of Obstetricians and Gynecologists. The research was published ahead of print in Human Vaccines and Immunotherapeutics.

Changing attitudes

“These findings are novel because they emphasize starting at age 9, and that is different than prior studies that emphasize bundling of these vaccines,” Kevin Ault, MD, professor and chair of the department of obstetrics and gynecology at Western Michigan University Homer Stryker MD School of Medicine and a former member of the CDC’s Advisory Committee on Immunization Practices, said in an interview.

Dr. Ault was not involved in the study but noted that these findings support the AAP’s recommendation to start the HPV vaccine series at age 9. The Centers for Disease Control and Prevention currently recommends giving the first dose of the HPV vaccine at ages 11-12, at the same time as the Tdap and meningitis vaccines. This recommendation to “bundle” the HPV vaccine with the Tdap and meningitis vaccines aims to facilitate provider-family discussion about the HPV vaccine, ideally reducing parent hesitancy and concerns about the vaccines. Multiple studies have shown improved HPV vaccine uptake when providers offer the HPV vaccine at the same time as the Tdap and meningococcal vaccines.

However, shifts in parents’ attitudes have occurred toward the HPV vaccine since those studies on bundling: Concerns about sexual activity have receded while concerns about safety remain high. The American Academy of Pediatrics and the American Cancer Society both advise starting the HPV vaccine series at age 9, based on evidence showing that more children complete the series when they get the first shot before age 11 compared to getting it at 11 or 12.

“The bundling was really to vaccinate people by the age of 13, thinking that onset of sexual activity was after that,” study author Sidika Kajtezovic, MD, a resident at Boston Medical Center and Boston University Obstetrics and Gynecology, said in an interview. But Dr. Kajtezovic said she delivers babies for 13-year-old patients. “Kids are having sex sooner or sooner.” It’s also clear that using the bundling strategy is not making up the entire gap right now: Ninety percent of children are getting the meningococcal vaccine while only 49% are getting the HPV vaccine, Dr. Kajtezovic pointed out. “There’s a disconnect happening there, even with the bundling,” she said.
 

Debundling vaccines

Dr. Kajtezovic and her colleagues used a national database of employee-sponsored health insurance to analyze the records of 100,857 children who were continuously enrolled in a plan from age 9 in 2015 to age 13 in 2019. They calculated the odds of children completing the HPV vaccine series based on whether they started the series before, at the same time as, or after the Tdap vaccination.

Youth who received the HPV vaccine before their Tdap vaccine had 38% greater odds of completing the series – getting both doses – than did those who received the HPV vaccine at the same time as the Tdap vaccine. Meanwhile, in line with prior evidence, those who got the first HPV dose after their Tdap were less likely – 68% lower odds – to complete the two- or three-dose (if starting above age 14) series.

The researchers identified several other factors that were linked to completing the HPV vaccine series. Females had greater odds than did males of completing the series, as did those living in urban, rather than rural, areas. Other factors associated with completing the series included living in the Northeast United States and receiving primary care from a pediatrician rather than a family medicine physician.
 

Timing is important

“I am encouraged by the findings of this study,” Dr. Ault said in an interview. “However, I would have liked the authors to expand the age range a bit higher. There are data that continuing to discuss the HPV vaccine with parents and teens will increase uptake into the later teen years.”

One challenge is that research shows attendance at primary care visits declines in older adolescence. Since there is no second Tdap or meningitis shot, families need to return for the second HPV vaccine dose after those shots, though they could get the second dose at the same time as other two vaccines if they receive the first dose before age 11. There’s also evidence suggesting that providers find conversations about the HPV vaccine easier when sexual activity is not the focus.

“I often feel that, before a child reaches adolescence, they’re almost, in a way, not sexualized yet, so talking about cancer prevention for an 8- or 9-year-old sometimes sounds a little different to patients versus protecting your 12-year-old, who’s starting to go through adolescence and developing breasts” and other signs of puberty, Dr. Kajtezovic said. Keeping the focus of HPV vaccine discussions on cancer prevention also allows providers to point out the protection against anal cancer, vulvar cancer, vaginal cancer, and head and neck cancer. “They are horrible, and even if they’re treatable, they’re often very hard to treat at an advanced stage,” Dr. Kajtezovic said. “The surgery required is so life disabling and disfiguring.”

The HPV Roundtable advises continuing bundling at practices having success with it but encourages practices to consider earlier vaccination if their uptake is lagging. Quality improvement initiatives, such as earlier electronic medical record prompts and multi-level interventions in pediatric practices, have shown substantial increases in HPV vaccine uptake at 9 and 10 years old. One survey in 2021 found that one in five primary care providers already routinely recommend the HPV vaccine at ages 9-10, and nearly half of others would consider doing so.

“My hope is in the next few years, when [the CDC] refreshes their vaccine recommendations, that they will either unbundle it or move the bar a few years earlier so that you can initiate it to encourage earlier initiation,” Dr. Kajtezovic said.

Dr. Ault had no other disclosures besides prior service on ACIP. Dr. Kajtezovic had no disclosures.

Taking folic acid supplements before conception and in the first trimester of pregnancy continues to be a major line of defense against neural tube defects.

In a statement published in JAMA, the U.S. Preventive Services Task Force recommended that all people planning on becoming pregnant or who could become pregnant take a daily supplement of 0.4-0.8 mg (400-800 mcg) of folic acid to prevent neural tube defects. 

The task force also found that folic acid is not associated with maternal cancer or autism, which were the concerns of some researchers. The current findings regarding potential harm align with earlier evidence examining possible risks.

The recommendation also aligns with previous recommendations from the USPSTF and is supported by 12 more recent observational studies. Neural tube defects occur in an estimated 3,000 pregnancies per year.

Folic acid deficiency is common due to diet, impaired folate metabolism, and poor nutrient uptake as a result of medications or bariatric surgery. 

“As much as we’ve been trying to get the word out there, we still need to get it out there even more,” Wanda Nicholson, MD, MPH, MBA, vice chair of the USPSTF, told this news organization. “It’s so simple and straightforward and can be so impactful for the health of the baby.”

Neural tube formation occurs 26-28 days after fertilization. Folic acid supplementation is essential for all people who may become pregnant, considering half of the pregnancies in the United States are unplanned, according to the USPSTF.

“In many cases, neural tube formation has already occurred, or not occurred appropriately, before someone realizes that they’re pregnant,” Dr. Nicholson said. “That’s why it’s so important to start taking folic acid one month prior to conception if you’re planning on becoming pregnant, and if you’re capable of being pregnant but not planning pregnancy, yes, we’re advocating that you also proceed with folic acid supplementation.”

Primary care physicians play a key role in patient education and ensuring that all patients receive adequate folic acid, according to Spencer McClelland, MD, an obstetrician-gynecologist at Denver Health, who was not involved in the statement. Dr. McClelland advised that clinicians recommend patients who are or could get pregnant take a multivitamin, because most brands will contain the recommended dosage of folic acid.

“There’s some confusion about folic acid,” he said. “Many patients know that they should be on a prenatal vitamin, but most don’t know that the reason we’re recommending a prenatal vitamin is almost entirely because of the value of folic acid, and everything else in the prenatal vitamin is kind of icing on the cake.”

For patients trying to get pregnant, the risk for neural tube defects “is one of many examples of the importance of preconception counseling,” Dr. McClelland said.

Dr. Nicholson noted that the recommended 0.4-0.8 mg of folic acid per day is for patients without heightened deficiency due to medications or bariatric surgery. At-risk patients should receive counseling from their physician to determine the correct amount to take.

The authors report no conflicts of interest, financial or otherwise.

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

Taking folic acid supplements before conception and in the first trimester of pregnancy continues to be a major line of defense against neural tube defects.

In a statement published in JAMA, the U.S. Preventive Services Task Force recommended that all people planning on becoming pregnant or who could become pregnant take a daily supplement of 0.4-0.8 mg (400-800 mcg) of folic acid to prevent neural tube defects. 

The task force also found that folic acid is not associated with maternal cancer or autism, which were the concerns of some researchers. The current findings regarding potential harm align with earlier evidence examining possible risks.

The recommendation also aligns with previous recommendations from the USPSTF and is supported by 12 more recent observational studies. Neural tube defects occur in an estimated 3,000 pregnancies per year.

Folic acid deficiency is common due to diet, impaired folate metabolism, and poor nutrient uptake as a result of medications or bariatric surgery. 

“As much as we’ve been trying to get the word out there, we still need to get it out there even more,” Wanda Nicholson, MD, MPH, MBA, vice chair of the USPSTF, told this news organization. “It’s so simple and straightforward and can be so impactful for the health of the baby.”

Neural tube formation occurs 26-28 days after fertilization. Folic acid supplementation is essential for all people who may become pregnant, considering half of the pregnancies in the United States are unplanned, according to the USPSTF.

“In many cases, neural tube formation has already occurred, or not occurred appropriately, before someone realizes that they’re pregnant,” Dr. Nicholson said. “That’s why it’s so important to start taking folic acid one month prior to conception if you’re planning on becoming pregnant, and if you’re capable of being pregnant but not planning pregnancy, yes, we’re advocating that you also proceed with folic acid supplementation.”

Primary care physicians play a key role in patient education and ensuring that all patients receive adequate folic acid, according to Spencer McClelland, MD, an obstetrician-gynecologist at Denver Health, who was not involved in the statement. Dr. McClelland advised that clinicians recommend patients who are or could get pregnant take a multivitamin, because most brands will contain the recommended dosage of folic acid.

“There’s some confusion about folic acid,” he said. “Many patients know that they should be on a prenatal vitamin, but most don’t know that the reason we’re recommending a prenatal vitamin is almost entirely because of the value of folic acid, and everything else in the prenatal vitamin is kind of icing on the cake.”

For patients trying to get pregnant, the risk for neural tube defects “is one of many examples of the importance of preconception counseling,” Dr. McClelland said.

Dr. Nicholson noted that the recommended 0.4-0.8 mg of folic acid per day is for patients without heightened deficiency due to medications or bariatric surgery. At-risk patients should receive counseling from their physician to determine the correct amount to take.

The authors report no conflicts of interest, financial or otherwise.

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

Taking folic acid supplements before conception and in the first trimester of pregnancy continues to be a major line of defense against neural tube defects.

In a statement published in JAMA, the U.S. Preventive Services Task Force recommended that all people planning on becoming pregnant or who could become pregnant take a daily supplement of 0.4-0.8 mg (400-800 mcg) of folic acid to prevent neural tube defects. 

The task force also found that folic acid is not associated with maternal cancer or autism, which were the concerns of some researchers. The current findings regarding potential harm align with earlier evidence examining possible risks.

The recommendation also aligns with previous recommendations from the USPSTF and is supported by 12 more recent observational studies. Neural tube defects occur in an estimated 3,000 pregnancies per year.

Folic acid deficiency is common due to diet, impaired folate metabolism, and poor nutrient uptake as a result of medications or bariatric surgery. 

“As much as we’ve been trying to get the word out there, we still need to get it out there even more,” Wanda Nicholson, MD, MPH, MBA, vice chair of the USPSTF, told this news organization. “It’s so simple and straightforward and can be so impactful for the health of the baby.”

Neural tube formation occurs 26-28 days after fertilization. Folic acid supplementation is essential for all people who may become pregnant, considering half of the pregnancies in the United States are unplanned, according to the USPSTF.

“In many cases, neural tube formation has already occurred, or not occurred appropriately, before someone realizes that they’re pregnant,” Dr. Nicholson said. “That’s why it’s so important to start taking folic acid one month prior to conception if you’re planning on becoming pregnant, and if you’re capable of being pregnant but not planning pregnancy, yes, we’re advocating that you also proceed with folic acid supplementation.”

Primary care physicians play a key role in patient education and ensuring that all patients receive adequate folic acid, according to Spencer McClelland, MD, an obstetrician-gynecologist at Denver Health, who was not involved in the statement. Dr. McClelland advised that clinicians recommend patients who are or could get pregnant take a multivitamin, because most brands will contain the recommended dosage of folic acid.

“There’s some confusion about folic acid,” he said. “Many patients know that they should be on a prenatal vitamin, but most don’t know that the reason we’re recommending a prenatal vitamin is almost entirely because of the value of folic acid, and everything else in the prenatal vitamin is kind of icing on the cake.”

For patients trying to get pregnant, the risk for neural tube defects “is one of many examples of the importance of preconception counseling,” Dr. McClelland said.

Dr. Nicholson noted that the recommended 0.4-0.8 mg of folic acid per day is for patients without heightened deficiency due to medications or bariatric surgery. At-risk patients should receive counseling from their physician to determine the correct amount to take.

The authors report no conflicts of interest, financial or otherwise.

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

Who owns your genes? The assumption of any sane person would be that he or she owns his or her own genes. I mean, how dumb a question is that?
 

Yet, in 2007, Dov Michaeli, MD, PhD, described how an American company had claimed ownership of genetic materials and believed that it had the right to commercialize those naturally occurring bits of DNA. Myriad Genetics began by patenting mutations of BRCA. Dr. Michaeli issued a call for action to support early efforts to pass legislation to restore and preserve individual ownership of one’s own genes. This is a historically important quick read/watch/listen. Give it a click.

In related legislation, the Genetic Information Nondiscrimination Act (GINA), originally introduced by New York Rep. Louise Slaughter in 1995, was ultimately spearheaded by California Rep. Xavier Becerra (now Secretary of Health & Human Services) to passage by the House of Representatives on April 25, 2007, by a vote of 420-9-3. Led by Sen. Edward Kennedy of Massachusetts, it was passed by the Senate on April 24, 2008, by a vote of 95-0. President George W. Bush signed the bill into law on May 21, 2008.

GINA is a landmark piece of legislation that protects Americans. It prohibits employers and health insurers from discriminating against people on the basis of their genetic information, and it also prohibits the use of genetic information in life insurance and long-term care insurance.

Its impact has been immense. GINA has been indispensable in promoting progress in the field of human genetics. By safeguarding individuals against discrimination based on genetic information, it has encouraged broader participation in research, built public trust, and stimulated advancements in genetic testing and personalized medicine. GINA’s impact extends beyond borders and has influenced much of the rest of the world.

As important as GINA was to the field, more was needed. National legislation to protect ownership of genetic materials has, despite many attempts, still not become law in the United States. However, in our system of divided government and balance of power, we also have independent courts.

June 13, 2023, was the 10th anniversary of another landmark event. The legal case is that of the Association for Molecular Pathology v. Myriad Genetics, a Salt Lake City–based biotech company that held patents on isolated DNA sequences associated with breast and ovarian cancer. The AMP, joined by several other organizations and researchers, challenged Myriad’s gene patents, arguing that human genes are naturally occurring and, therefore, should not be subject to patenting. In a unanimous decision, the Supreme Court held that naturally occurring DNA segments are products of nature and therefore are not eligible for patent protection.

This was a pivotal decision in the field of human genetics and had a broad impact on genetic research. The decision clarified that naturally occurring DNA sequences cannot be patented, which means that researchers are free to use these sequences in their research without fear of patent infringement. This has led to a vast increase in the amount of genetic research being conducted, and it has also led to the development of new genetic tests and treatments.

The numbers of genetic research papers published in scientific journals and of genetic tests available to consumers have increased significantly, while the cost of genetic testing has decreased significantly. The AMP v. Myriad decision is likely to continue to have an impact for many years to come.

In 2023, Americans do own their own genes and can feel secure in them not being used against us. Thank you, common sense, activist American molecular pathologists, Congress, the President, and the Supreme Court for siding with the people.Dr. Lundbert is editor in chief of Cancer Commons. He has disclosed no relevant financial relationships.

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

Who owns your genes? The assumption of any sane person would be that he or she owns his or her own genes. I mean, how dumb a question is that?
 

Yet, in 2007, Dov Michaeli, MD, PhD, described how an American company had claimed ownership of genetic materials and believed that it had the right to commercialize those naturally occurring bits of DNA. Myriad Genetics began by patenting mutations of BRCA. Dr. Michaeli issued a call for action to support early efforts to pass legislation to restore and preserve individual ownership of one’s own genes. This is a historically important quick read/watch/listen. Give it a click.

In related legislation, the Genetic Information Nondiscrimination Act (GINA), originally introduced by New York Rep. Louise Slaughter in 1995, was ultimately spearheaded by California Rep. Xavier Becerra (now Secretary of Health & Human Services) to passage by the House of Representatives on April 25, 2007, by a vote of 420-9-3. Led by Sen. Edward Kennedy of Massachusetts, it was passed by the Senate on April 24, 2008, by a vote of 95-0. President George W. Bush signed the bill into law on May 21, 2008.

GINA is a landmark piece of legislation that protects Americans. It prohibits employers and health insurers from discriminating against people on the basis of their genetic information, and it also prohibits the use of genetic information in life insurance and long-term care insurance.

Its impact has been immense. GINA has been indispensable in promoting progress in the field of human genetics. By safeguarding individuals against discrimination based on genetic information, it has encouraged broader participation in research, built public trust, and stimulated advancements in genetic testing and personalized medicine. GINA’s impact extends beyond borders and has influenced much of the rest of the world.

As important as GINA was to the field, more was needed. National legislation to protect ownership of genetic materials has, despite many attempts, still not become law in the United States. However, in our system of divided government and balance of power, we also have independent courts.

June 13, 2023, was the 10th anniversary of another landmark event. The legal case is that of the Association for Molecular Pathology v. Myriad Genetics, a Salt Lake City–based biotech company that held patents on isolated DNA sequences associated with breast and ovarian cancer. The AMP, joined by several other organizations and researchers, challenged Myriad’s gene patents, arguing that human genes are naturally occurring and, therefore, should not be subject to patenting. In a unanimous decision, the Supreme Court held that naturally occurring DNA segments are products of nature and therefore are not eligible for patent protection.

This was a pivotal decision in the field of human genetics and had a broad impact on genetic research. The decision clarified that naturally occurring DNA sequences cannot be patented, which means that researchers are free to use these sequences in their research without fear of patent infringement. This has led to a vast increase in the amount of genetic research being conducted, and it has also led to the development of new genetic tests and treatments.

The numbers of genetic research papers published in scientific journals and of genetic tests available to consumers have increased significantly, while the cost of genetic testing has decreased significantly. The AMP v. Myriad decision is likely to continue to have an impact for many years to come.

In 2023, Americans do own their own genes and can feel secure in them not being used against us. Thank you, common sense, activist American molecular pathologists, Congress, the President, and the Supreme Court for siding with the people.Dr. Lundbert is editor in chief of Cancer Commons. He has disclosed no relevant financial relationships.

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

Who owns your genes? The assumption of any sane person would be that he or she owns his or her own genes. I mean, how dumb a question is that?
 

Yet, in 2007, Dov Michaeli, MD, PhD, described how an American company had claimed ownership of genetic materials and believed that it had the right to commercialize those naturally occurring bits of DNA. Myriad Genetics began by patenting mutations of BRCA. Dr. Michaeli issued a call for action to support early efforts to pass legislation to restore and preserve individual ownership of one’s own genes. This is a historically important quick read/watch/listen. Give it a click.

In related legislation, the Genetic Information Nondiscrimination Act (GINA), originally introduced by New York Rep. Louise Slaughter in 1995, was ultimately spearheaded by California Rep. Xavier Becerra (now Secretary of Health & Human Services) to passage by the House of Representatives on April 25, 2007, by a vote of 420-9-3. Led by Sen. Edward Kennedy of Massachusetts, it was passed by the Senate on April 24, 2008, by a vote of 95-0. President George W. Bush signed the bill into law on May 21, 2008.

GINA is a landmark piece of legislation that protects Americans. It prohibits employers and health insurers from discriminating against people on the basis of their genetic information, and it also prohibits the use of genetic information in life insurance and long-term care insurance.

Its impact has been immense. GINA has been indispensable in promoting progress in the field of human genetics. By safeguarding individuals against discrimination based on genetic information, it has encouraged broader participation in research, built public trust, and stimulated advancements in genetic testing and personalized medicine. GINA’s impact extends beyond borders and has influenced much of the rest of the world.

As important as GINA was to the field, more was needed. National legislation to protect ownership of genetic materials has, despite many attempts, still not become law in the United States. However, in our system of divided government and balance of power, we also have independent courts.

June 13, 2023, was the 10th anniversary of another landmark event. The legal case is that of the Association for Molecular Pathology v. Myriad Genetics, a Salt Lake City–based biotech company that held patents on isolated DNA sequences associated with breast and ovarian cancer. The AMP, joined by several other organizations and researchers, challenged Myriad’s gene patents, arguing that human genes are naturally occurring and, therefore, should not be subject to patenting. In a unanimous decision, the Supreme Court held that naturally occurring DNA segments are products of nature and therefore are not eligible for patent protection.

This was a pivotal decision in the field of human genetics and had a broad impact on genetic research. The decision clarified that naturally occurring DNA sequences cannot be patented, which means that researchers are free to use these sequences in their research without fear of patent infringement. This has led to a vast increase in the amount of genetic research being conducted, and it has also led to the development of new genetic tests and treatments.

The numbers of genetic research papers published in scientific journals and of genetic tests available to consumers have increased significantly, while the cost of genetic testing has decreased significantly. The AMP v. Myriad decision is likely to continue to have an impact for many years to come.

In 2023, Americans do own their own genes and can feel secure in them not being used against us. Thank you, common sense, activist American molecular pathologists, Congress, the President, and the Supreme Court for siding with the people.Dr. Lundbert is editor in chief of Cancer Commons. He has disclosed no relevant financial relationships.

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

This transcript has been edited for clarity.

Here are 10 ways to improve health communication with patients. These tips will place patients at ease, increase their adherence to recommendations, and make the doctor’s visit a lot more enjoyable for them.
 

No. 1: Be an active listener

The first tip is to be an active listener and help guide the history-taking process by asking for clarification when needed.

Quickly figure out the patient’s chief complaint. Which symptom is the most severe?

Ask them for symptom-modifying factors, such as onset, duration, frequency, and a pain description. Is the abdominal pain sharp or crampy, dull and achy, or pressure-like? What makes the symptoms better or worse?

As many of us were taught in medical school, 80% of the diagnosis is in a patient’s history and description.
 

No. 2: Ask questions that resonate with patients

What can we do to help elicit an accurate history from the patient when they’re not providing the needed information or being helpful enough?

The easiest way is to ask your patient in a completely different way but one that resonates with them. For instance, ask how the abdominal pain is affecting their quality of life. That will help focus the history taking and encourage the patient to share details.

Does the pain keep them awake at night? Are they able to eat a normal-sized meal? Or are they forced to eat tiny snacks? Is the pain interfering with work or school?

By providing a framework, the patient will be more passionate about sharing the details of their history.
 

No. 3: Help patients organize their story

Sometimes, patients provide details in a nonchronological order, jumping all over the place.

A super helpful technique is to explain to the patient that you have a story to write for your computer note, and for them to think back to when they first started noticing their abdominal pain or rectal bleeding symptoms. When were the most-severe episodes? How frequent are the episodes? What’s the volume of their rectal bleeding?

If the patient realizes that you’re trying to write a story synopsis, they will provide information in a much more organized way.
 

No. 4: Determine patient’s language preference

Quickly determine the patient’s language preference. We want patients to feel extremely comfortable.

Whenever possible, use a certified interpreter. Language phone lines, in-person interpreters, and video conferencing are widely available today. It’s worth investing in this technology so that we can provide the best possible care to immigrants and refugees.

Conversely, avoid using family members as interpreters because they may not be adequately trained in medical vocabulary.
 

No. 5: Use simple language

When providing explanations, use simple language that your patient can understand and identify with.

For example, use analogies like “the heart is a pump” or the diverticula are thin areas of the colon that can bleed if the blood vessel is too close to the surface.
 

No. 6: Determine level of medical literacy

Determine your patient’s level of medical literacy. Some of our patients did not graduate from high school. Some patients can’t read very well. Therefore, your discharge instructions and handouts should sometimes be written on a third-grade level.

If patients can’t read, write medication instructions with symbols. Draw a sun for medications that are supposed to be taken in the morning and draw a moon if a medication is supposed to be taken at night.

Always very carefully review the instructions with the patient.
 

No. 7: Check in with the patient

During the visit, frequently check in with the patient to make sure that they understand what you’re asking or what you’re trying to explain to them.

No. 8: Include family member as patient advocate

If the patient is accompanied by a family member, help them serve in the important role as a patient advocate.

If the family member wants to take notes, encourage them because that provides an awesome value.

Sometimes patients can forget clinic and hospital medical conversations, and that family member might be the key to improving your patient’s health.
 

No. 9: Follow-up with the patient

If your clinic has the capability, follow up with a patient the next day to make sure that they understood everything.

Check to make sure the patient was able to pick up all of the medications that you prescribed.

Check that laboratory tests are arranged or completed.

Check that important procedures, such as esophagogastroduodenoscopy and colonoscopy, and imaging, such as ultrasounds and CTs, are scheduled.
 

No. 10: Identify barriers to care

Have fun talking with a patient. Find out what they do for a living. Build a rapport. Listen to their stressors in life.

Try to identify any barriers to care or external stressors, like taking care of a sick parent, which might interfere with their scheduling an important diagnostic colonoscopy for rectal bleeding.

Good luck incorporating these communication strategies into your clinic and hospital work. Together, we can help improve the delivery of health care.
 

Dr. Levy is a gastroenterologist at the University of Chicago. In 2017, Dr. Levy, a previous Fulbright Fellow in France, also started a gastroenterology clinic for refugees resettling in Chicago. His clinical projects focus on the development of colorectal cancer screening campaigns. Dr. Levy, who recently gave a TEDx Talk about building health education campaigns using music and concerts, organizes Tune It Up: A Concert To Raise Colorectal Cancer Awareness with the American College of Gastroenterology (ACG). He frequently publishes on a variety of gastroenterology topics and serves on ACG’s Public Relations Committee and FDA-Related Matters Committee. He has disclosed no relevant financial relationships.

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

This transcript has been edited for clarity.

Here are 10 ways to improve health communication with patients. These tips will place patients at ease, increase their adherence to recommendations, and make the doctor’s visit a lot more enjoyable for them.
 

No. 1: Be an active listener

The first tip is to be an active listener and help guide the history-taking process by asking for clarification when needed.

Quickly figure out the patient’s chief complaint. Which symptom is the most severe?

Ask them for symptom-modifying factors, such as onset, duration, frequency, and a pain description. Is the abdominal pain sharp or crampy, dull and achy, or pressure-like? What makes the symptoms better or worse?

As many of us were taught in medical school, 80% of the diagnosis is in a patient’s history and description.
 

No. 2: Ask questions that resonate with patients

What can we do to help elicit an accurate history from the patient when they’re not providing the needed information or being helpful enough?

The easiest way is to ask your patient in a completely different way but one that resonates with them. For instance, ask how the abdominal pain is affecting their quality of life. That will help focus the history taking and encourage the patient to share details.

Does the pain keep them awake at night? Are they able to eat a normal-sized meal? Or are they forced to eat tiny snacks? Is the pain interfering with work or school?

By providing a framework, the patient will be more passionate about sharing the details of their history.
 

No. 3: Help patients organize their story

Sometimes, patients provide details in a nonchronological order, jumping all over the place.

A super helpful technique is to explain to the patient that you have a story to write for your computer note, and for them to think back to when they first started noticing their abdominal pain or rectal bleeding symptoms. When were the most-severe episodes? How frequent are the episodes? What’s the volume of their rectal bleeding?

If the patient realizes that you’re trying to write a story synopsis, they will provide information in a much more organized way.
 

No. 4: Determine patient’s language preference

Quickly determine the patient’s language preference. We want patients to feel extremely comfortable.

Whenever possible, use a certified interpreter. Language phone lines, in-person interpreters, and video conferencing are widely available today. It’s worth investing in this technology so that we can provide the best possible care to immigrants and refugees.

Conversely, avoid using family members as interpreters because they may not be adequately trained in medical vocabulary.
 

No. 5: Use simple language

When providing explanations, use simple language that your patient can understand and identify with.

For example, use analogies like “the heart is a pump” or the diverticula are thin areas of the colon that can bleed if the blood vessel is too close to the surface.
 

No. 6: Determine level of medical literacy

Determine your patient’s level of medical literacy. Some of our patients did not graduate from high school. Some patients can’t read very well. Therefore, your discharge instructions and handouts should sometimes be written on a third-grade level.

If patients can’t read, write medication instructions with symbols. Draw a sun for medications that are supposed to be taken in the morning and draw a moon if a medication is supposed to be taken at night.

Always very carefully review the instructions with the patient.
 

No. 7: Check in with the patient

During the visit, frequently check in with the patient to make sure that they understand what you’re asking or what you’re trying to explain to them.

No. 8: Include family member as patient advocate

If the patient is accompanied by a family member, help them serve in the important role as a patient advocate.

If the family member wants to take notes, encourage them because that provides an awesome value.

Sometimes patients can forget clinic and hospital medical conversations, and that family member might be the key to improving your patient’s health.
 

No. 9: Follow-up with the patient

If your clinic has the capability, follow up with a patient the next day to make sure that they understood everything.

Check to make sure the patient was able to pick up all of the medications that you prescribed.

Check that laboratory tests are arranged or completed.

Check that important procedures, such as esophagogastroduodenoscopy and colonoscopy, and imaging, such as ultrasounds and CTs, are scheduled.
 

No. 10: Identify barriers to care

Have fun talking with a patient. Find out what they do for a living. Build a rapport. Listen to their stressors in life.

Try to identify any barriers to care or external stressors, like taking care of a sick parent, which might interfere with their scheduling an important diagnostic colonoscopy for rectal bleeding.

Good luck incorporating these communication strategies into your clinic and hospital work. Together, we can help improve the delivery of health care.
 

Dr. Levy is a gastroenterologist at the University of Chicago. In 2017, Dr. Levy, a previous Fulbright Fellow in France, also started a gastroenterology clinic for refugees resettling in Chicago. His clinical projects focus on the development of colorectal cancer screening campaigns. Dr. Levy, who recently gave a TEDx Talk about building health education campaigns using music and concerts, organizes Tune It Up: A Concert To Raise Colorectal Cancer Awareness with the American College of Gastroenterology (ACG). He frequently publishes on a variety of gastroenterology topics and serves on ACG’s Public Relations Committee and FDA-Related Matters Committee. He has disclosed no relevant financial relationships.

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

This transcript has been edited for clarity.

Here are 10 ways to improve health communication with patients. These tips will place patients at ease, increase their adherence to recommendations, and make the doctor’s visit a lot more enjoyable for them.
 

No. 1: Be an active listener

The first tip is to be an active listener and help guide the history-taking process by asking for clarification when needed.

Quickly figure out the patient’s chief complaint. Which symptom is the most severe?

Ask them for symptom-modifying factors, such as onset, duration, frequency, and a pain description. Is the abdominal pain sharp or crampy, dull and achy, or pressure-like? What makes the symptoms better or worse?

As many of us were taught in medical school, 80% of the diagnosis is in a patient’s history and description.
 

No. 2: Ask questions that resonate with patients

What can we do to help elicit an accurate history from the patient when they’re not providing the needed information or being helpful enough?

The easiest way is to ask your patient in a completely different way but one that resonates with them. For instance, ask how the abdominal pain is affecting their quality of life. That will help focus the history taking and encourage the patient to share details.

Does the pain keep them awake at night? Are they able to eat a normal-sized meal? Or are they forced to eat tiny snacks? Is the pain interfering with work or school?

By providing a framework, the patient will be more passionate about sharing the details of their history.
 

No. 3: Help patients organize their story

Sometimes, patients provide details in a nonchronological order, jumping all over the place.

A super helpful technique is to explain to the patient that you have a story to write for your computer note, and for them to think back to when they first started noticing their abdominal pain or rectal bleeding symptoms. When were the most-severe episodes? How frequent are the episodes? What’s the volume of their rectal bleeding?

If the patient realizes that you’re trying to write a story synopsis, they will provide information in a much more organized way.
 

No. 4: Determine patient’s language preference

Quickly determine the patient’s language preference. We want patients to feel extremely comfortable.

Whenever possible, use a certified interpreter. Language phone lines, in-person interpreters, and video conferencing are widely available today. It’s worth investing in this technology so that we can provide the best possible care to immigrants and refugees.

Conversely, avoid using family members as interpreters because they may not be adequately trained in medical vocabulary.
 

No. 5: Use simple language

When providing explanations, use simple language that your patient can understand and identify with.

For example, use analogies like “the heart is a pump” or the diverticula are thin areas of the colon that can bleed if the blood vessel is too close to the surface.
 

No. 6: Determine level of medical literacy

Determine your patient’s level of medical literacy. Some of our patients did not graduate from high school. Some patients can’t read very well. Therefore, your discharge instructions and handouts should sometimes be written on a third-grade level.

If patients can’t read, write medication instructions with symbols. Draw a sun for medications that are supposed to be taken in the morning and draw a moon if a medication is supposed to be taken at night.

Always very carefully review the instructions with the patient.
 

No. 7: Check in with the patient

During the visit, frequently check in with the patient to make sure that they understand what you’re asking or what you’re trying to explain to them.

No. 8: Include family member as patient advocate

If the patient is accompanied by a family member, help them serve in the important role as a patient advocate.

If the family member wants to take notes, encourage them because that provides an awesome value.

Sometimes patients can forget clinic and hospital medical conversations, and that family member might be the key to improving your patient’s health.
 

No. 9: Follow-up with the patient

If your clinic has the capability, follow up with a patient the next day to make sure that they understood everything.

Check to make sure the patient was able to pick up all of the medications that you prescribed.

Check that laboratory tests are arranged or completed.

Check that important procedures, such as esophagogastroduodenoscopy and colonoscopy, and imaging, such as ultrasounds and CTs, are scheduled.
 

No. 10: Identify barriers to care

Have fun talking with a patient. Find out what they do for a living. Build a rapport. Listen to their stressors in life.

Try to identify any barriers to care or external stressors, like taking care of a sick parent, which might interfere with their scheduling an important diagnostic colonoscopy for rectal bleeding.

Good luck incorporating these communication strategies into your clinic and hospital work. Together, we can help improve the delivery of health care.
 

Dr. Levy is a gastroenterologist at the University of Chicago. In 2017, Dr. Levy, a previous Fulbright Fellow in France, also started a gastroenterology clinic for refugees resettling in Chicago. His clinical projects focus on the development of colorectal cancer screening campaigns. Dr. Levy, who recently gave a TEDx Talk about building health education campaigns using music and concerts, organizes Tune It Up: A Concert To Raise Colorectal Cancer Awareness with the American College of Gastroenterology (ACG). He frequently publishes on a variety of gastroenterology topics and serves on ACG’s Public Relations Committee and FDA-Related Matters Committee. He has disclosed no relevant financial relationships.

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

A multicenter, international phase 2 trial known as EDELIFE is underway to investigate the safety and efficacy of an in utero treatment for developing males with X-linked hypohidrotic ectodermal dysplasia (XLHED).

This condition is caused by mutations in the gene coding for ectodysplasin A (EDA), a protein that signals the epithelial-mesenchymal transition during embryogenesis. EDA loss or dysfunction precludes binding to its endogenous EDA1 receptor (EDAR), and downstream development of teeth, hair, nails, and skin adnexae, most notably eccrine glands.

shironosov/Getty Images

The treatment, ER004, is a first-in-class signaling protein EDA replacement molecule now under investigation by the EspeRare Foundation, with support from the Pierre Fabre Foundation. The pioneering clinical trial is evaluating the delivery of ER004 protein replacement in utero to affected fetuses, allowing antenatal binding to the EDAR. According to the EDELIFE web site, when ER004 is administered to XLHED-affected males in utero, it “should act as a replacement for the missing EDA and trigger the process that leads to the normal development of a baby’s skin, teeth, hair, and sweat glands, leading to better formation of these structures.”

The protein is delivered into the amniotic fluid via a needle and syringe under ultrasound guidance. In a report on this treatment used in a pair of affected twins and a third XLHED-affected male published in 2018, the authors reported that the three babies were able to sweat normally after birth, “and XLHED-related illness had not developed by 14-22 months of age.”

The goal of the prospective, open-label, genotype match–controlled EDELIFE trial is to confirm the efficacy and safety results for ER004 in a larger group of boys, and to determine if it can lead to robust, and long-lasting improvement in XLHED-associated defects.

In the United States, the first pregnant woman to join the study received the treatment in February 2023 at Washington University in St. Louis. Other clinical sites are located in France, Germany, Italy, Spain, and the United Kingdom. Led by principal investigator Holm Schneider, MD, of the University Erlanger-Nurnberg (Germany), researchers are seeking to enroll mothers aged 18 years and older who are genetically confirmed carriers of the XLHED mutation and pregnant with a boy or considering pregnancy. The control group will include XLHED-affected males, 6 months to 60 years old, who are blood relatives of the pregnant woman participating in the study.

Clinicians treating affected families or potentially eligible subjects are encouraged to contact the trial investigators at this link.

A multicenter, international phase 2 trial known as EDELIFE is underway to investigate the safety and efficacy of an in utero treatment for developing males with X-linked hypohidrotic ectodermal dysplasia (XLHED).

This condition is caused by mutations in the gene coding for ectodysplasin A (EDA), a protein that signals the epithelial-mesenchymal transition during embryogenesis. EDA loss or dysfunction precludes binding to its endogenous EDA1 receptor (EDAR), and downstream development of teeth, hair, nails, and skin adnexae, most notably eccrine glands.

shironosov/Getty Images

The treatment, ER004, is a first-in-class signaling protein EDA replacement molecule now under investigation by the EspeRare Foundation, with support from the Pierre Fabre Foundation. The pioneering clinical trial is evaluating the delivery of ER004 protein replacement in utero to affected fetuses, allowing antenatal binding to the EDAR. According to the EDELIFE web site, when ER004 is administered to XLHED-affected males in utero, it “should act as a replacement for the missing EDA and trigger the process that leads to the normal development of a baby’s skin, teeth, hair, and sweat glands, leading to better formation of these structures.”

The protein is delivered into the amniotic fluid via a needle and syringe under ultrasound guidance. In a report on this treatment used in a pair of affected twins and a third XLHED-affected male published in 2018, the authors reported that the three babies were able to sweat normally after birth, “and XLHED-related illness had not developed by 14-22 months of age.”

The goal of the prospective, open-label, genotype match–controlled EDELIFE trial is to confirm the efficacy and safety results for ER004 in a larger group of boys, and to determine if it can lead to robust, and long-lasting improvement in XLHED-associated defects.

In the United States, the first pregnant woman to join the study received the treatment in February 2023 at Washington University in St. Louis. Other clinical sites are located in France, Germany, Italy, Spain, and the United Kingdom. Led by principal investigator Holm Schneider, MD, of the University Erlanger-Nurnberg (Germany), researchers are seeking to enroll mothers aged 18 years and older who are genetically confirmed carriers of the XLHED mutation and pregnant with a boy or considering pregnancy. The control group will include XLHED-affected males, 6 months to 60 years old, who are blood relatives of the pregnant woman participating in the study.

Clinicians treating affected families or potentially eligible subjects are encouraged to contact the trial investigators at this link.

A multicenter, international phase 2 trial known as EDELIFE is underway to investigate the safety and efficacy of an in utero treatment for developing males with X-linked hypohidrotic ectodermal dysplasia (XLHED).

This condition is caused by mutations in the gene coding for ectodysplasin A (EDA), a protein that signals the epithelial-mesenchymal transition during embryogenesis. EDA loss or dysfunction precludes binding to its endogenous EDA1 receptor (EDAR), and downstream development of teeth, hair, nails, and skin adnexae, most notably eccrine glands.

shironosov/Getty Images

The treatment, ER004, is a first-in-class signaling protein EDA replacement molecule now under investigation by the EspeRare Foundation, with support from the Pierre Fabre Foundation. The pioneering clinical trial is evaluating the delivery of ER004 protein replacement in utero to affected fetuses, allowing antenatal binding to the EDAR. According to the EDELIFE web site, when ER004 is administered to XLHED-affected males in utero, it “should act as a replacement for the missing EDA and trigger the process that leads to the normal development of a baby’s skin, teeth, hair, and sweat glands, leading to better formation of these structures.”

The protein is delivered into the amniotic fluid via a needle and syringe under ultrasound guidance. In a report on this treatment used in a pair of affected twins and a third XLHED-affected male published in 2018, the authors reported that the three babies were able to sweat normally after birth, “and XLHED-related illness had not developed by 14-22 months of age.”

The goal of the prospective, open-label, genotype match–controlled EDELIFE trial is to confirm the efficacy and safety results for ER004 in a larger group of boys, and to determine if it can lead to robust, and long-lasting improvement in XLHED-associated defects.

In the United States, the first pregnant woman to join the study received the treatment in February 2023 at Washington University in St. Louis. Other clinical sites are located in France, Germany, Italy, Spain, and the United Kingdom. Led by principal investigator Holm Schneider, MD, of the University Erlanger-Nurnberg (Germany), researchers are seeking to enroll mothers aged 18 years and older who are genetically confirmed carriers of the XLHED mutation and pregnant with a boy or considering pregnancy. The control group will include XLHED-affected males, 6 months to 60 years old, who are blood relatives of the pregnant woman participating in the study.

Clinicians treating affected families or potentially eligible subjects are encouraged to contact the trial investigators at this link.

Initiating oxycodone instead of codeine for postpartum analgesia was associated with an increased risk of persistent opioid use after vaginal, but not cesarean, delivery, new research suggests.

“In the last decade in Ontario, oxycodone surpassed codeine as the most commonly prescribed opioid postpartum for pain control,” Jonathan Zipursky, MD, PhD, of Sunnybrook Health Sciences Centre, ICES, Toronto, and the University of Toronto, said in an interview. “This likely had to do with concerns with codeine use during breastfeeding, many of which are unsubstantiated.

“We hypothesized that use of oxycodone would be associated with an increased risk of persistent postpartum opioid use,” he said. “However, we did not find this.”

Instead, other factors, such as the quantity of opioids initially prescribed, were probably more important risks, he said.

Sunnybrook Health Sciences Centre

Oxycodone okay

The investigators analyzed data from 70,607 people (median age, 32) who filled an opioid prescription within 7 days of discharge from the hospital between 2012 and 2020. Two-thirds (69.8%) received oxycodone and one-third received (30.2%) codeine.

The median gestational age at delivery was 39 weeks, and 80% of participants had a cesarean delivery. The median opioid prescription duration was 3 days. The median opioid content per prescription was 150 morphine milligram equivalents (MMEs) among those prescribed oxycodone and 135 MMEs for codeine.

The main outcome was persistent opioid use. This was defined as one or more additional prescriptions for an opioid within 90 days of the first postpartum prescription and one or more additional prescriptions in the 91-365 days after.

Oxycodone receipt was not associated with persistent opioid use, compared with codeine (relative risk, 1.04).

However, in a secondary analysis by mode of delivery, an association was seen between a prescription for oxycodone and persistent use after vaginal (RR, 1.63), but not after cesarean (RR, 0.85), delivery.

Dr. Zipursky noted that the quantity of opioids prescribed in the initial postpartum prescription “is likely a more important modifiable risk factor for new persistent opioid use, rather than the type of opioid prescribed.”

For example, a prescription containing more than 225 MMEs (equivalent to about 30 tablets of 5 mg oxycodone and to 50 tablets of 30 mg codeine) was associated with a roughly twofold increased risk of persistent use, compared with less than 112.5 MMEs after both vaginal (odds ratio, 2.51) and cesarean (OR, 1.78) delivery.

Furthermore, a prescription duration of more than 7 days was also associated with a roughly twofold increased risk of persistent use, compared with a duration of 1-3 days after both vaginal (OR, 2.43) and cesarean (OR, 1.52) delivery.

Most risk factors for persistent opioid use – a history of mental illness, substance use disorder, and more maternal comorbidities (aggregated diagnosis groups > 10) – were consistent across modes of delivery.

“Awareness of modifiable factors associated with new, persistent opioid use may help clinicians tailor opioid prescribing while ensuring adequate analgesia after delivery,” Dr. Zipursky suggested.
 

Less is more

In a comment, Elaine Duryea, MD, assistant professor in the department of obstetrics and gynecology at UT Southwestern Medical Center and medical director of the Maternal-Fetal Medicine Clinic at Parkland Health and Hospital System, both in Dallas, said, “It is likely exposure to any opioid, rather than a specific opioid, that can promote continued use – that is, past the medically indicated period.”