Feature

In June, Rebecca A. Shatsky, MD, a medical oncologist, turned to Twitter for advice: “What do you do/say when a patient won’t believe you that they have #CANCER. As an oncologist this comes up every now and then and proves very difficult, looking to hear how others have dealt and what works best to help patients here.”

About a dozen people weighed in, offering various thoughts on how to approach these thorny situations. One oncologist suggested revisiting the conversation a few days later, after the patient has more time to process; others suggested sharing the pathology report or images with their patient.

Another person simply noted that “if a [patient] doesn’t want to believe they have cancer, no amount of evidence will change that.”

Based on the initial responses, “it appears there is a paucity of answers sadly,” wrote Dr. Shatsky, a breast cancer specialist at University of California, San Diego.

But for Dr. Shatsky, these incidents spoke to another alarming trend: a rampant mistrust of the medical community that is “becoming MORE common instead of less.”
 

‘Erosion of trust’

Overall, experts say that situations like the one Dr. Shatsky described – patients who don’t believe their cancer diagnosis – occur infrequently.

But denial comes in many forms, and complete disbelief is probably the most extreme. Patients may also downplay the severity of their disease, shy away from hearing bad news, or refuse standard treatment or their doctor’s advice.

Like Dr. Shatsky, these experts say they are also seeing a troubling increase in patients who don’t believe their physicians or don’t trust their recommendations.

“I think there’s an erosion of trust in expertise, in general,” said Ronald M. Epstein, MD, professor of family medicine and psychiatry & oncology at the University of Rochester (N.Y.). “People distrust science more than they did maybe 20 or 30 years ago, or at least that seems to be the case.”

Denial and distrust in cancer care are not new. These responses – along with wishful thinking, distraction, and minimization – are long-established responses among oncology patients. In 1972, Avery D. Weisman, MD, a psychiatrist at Harvard Medical School, Boston, wrote his book “On Dying and Denying,” and ever since, denial and similar responses have been explored in the oncology literature.

Much of this research has focused on the latter stages of illness, but denial can be present at diagnosis as well. One study of patients with breast cancer, carried out nearly 30 years ago, suggested that denial of diagnosis generally occurs early in a patient’s course of illness and decreases over time, but may arise again in the terminal phase of cancer. Another analysis, evaluating this phenomenon across 13 studies, found that the prevalence of denial at diagnosis ranged from 4% to as high as 47%. 

An oncologist delivers somewhere between 10,000 to 30,000 episodes of bad news over the course of a career, so there’s always a chance that a patient will respond in a way that’s on the “spectrum of disbelief,” said Paul Helft, MD, professor of medicine and recently retired director of the ethics center at Indiana University, Indianapolis.

Diane Meier, MD, said denial and disbelief are natural, protective responses to difficult or frightening news.

When patients exhibit denial, Dr. Meier advises patience and time. Physicians can also ask the patient if there’s a person they trust – a family member or faith leader, for example – who could speak on their behalf about possible next steps.

“The main thing is not to find ourselves in opposition to the patient ... or threaten them with what will happen if they don’t listen to us,” said Dr. Meier, a professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai, New York.

And physicians should be careful when they feel themselves wanting to argue with or lecture a patient.

“The minute we feel that urge coming on, that’s a signal to us to stop and realize that something is going on inside the patient that we don’t understand,” she said. “Forcing information on a person who is signaling in every way that they don’t want it and can’t handle it is not a recipe for trust or a high-quality relationship.”
 

Refusing expert advice

Jennifer Lycette, MD, has encountered a growing number of patients who don’t believe their disease should be treated the way she or other oncologists recommend. Some patients remain adamant about sticking with alternative medicine or doing nothing, despite growing sicker.

“I’ve even had situations where the tumor might be visible, like growing through the skin, and people still double down that whatever they’re doing is working,” said Dr. Lycette, a hematologist and medical oncologist at the Providence Seaside Cancer Center in Seaside, Ore.

She encourages these patients to get a second opinion and tries to keep an open mind about alternative approaches. If she’s not familiar with something a patient is considering, she’ll research it with them.

But she makes sure to point out any risks associated with these approaches. While some alternative therapies can support patients through standard treatment, she strongly cautions patients against using these therapies in place of standard treatment.

“The bottom line is to keep the lines of communication open,” she said.

Like Dr. Lycette, Dr. Helft has been encountering more patients with alternative health beliefs who rely on people outside of the medical system for elements of their care.

In the past, he used to tell these patients that science is incomplete, and physicians don’t know everything. But he’s changed his tune.

“I’ve taken to just telling them what I believe, which is that the majority of things that they hear and are being sold are almost certainly ineffective and a waste of money,” he said. “I’ve come to accept that people are adults, and they make their own decisions, and sometimes they make decisions that are not the ones that I would make or want them to make.”
 

Delivering bad news

Dr. Helft often sees patients seeking a second or third opinion on their cancer. These patients may not all be in denial about having cancer, but they typically don’t want to hear bad news, which can make treatment a challenge.

To handle these scenarios, Dr. Helft has developed a system of responses for engaging with patients. He borrows an approach described in 2008 where he acknowledges a patient’s emotional distress and tries to understand why they may not want to know more.

For instance, he might tell a patient: “I have formulated an opinion about your situation, but it sounds as if you have heard many negative descriptions previously. I don’t want to burden you with one more if you don’t feel prepared to talk about it.”

Trying to understand why a patient is resistant to hearing about their condition may also help build trust. “If you could help me understand your thinking about why you would rather not talk about prognosis, it will help me know more about how to discuss other serious issues,” is one approach highlighted in the 2008 guide.

Behind the scenes, Dr. Helft will privately assess how much information about a patient’s prognosis is salient to their decision making, especially if the patient appears to misunderstand their prognosis or if there are various options for treatment over the long-term. 

Dr. Helft will also ask patients how much they want to know. Do they want to discuss no options? A few? All and in detail?

This approach implicitly recognizes that the information is highly stressful but avoids being overly blunt, he notes. It can also help steer patients on the right treatment track and minimize poor decision making.

Samantha Winemaker, MD, a palliative care physician in Hamilton, Ont., finds patients often go through an adjustment period after learning about a new diagnosis. The reaction tends to range from needing time to accept the diagnosis as real to jumping in to understand as much as possible.

Dr. Winemaker, who cohosts “The Waiting Room Revolution” podcast that focuses on helping people deal with a serious illness, encourages physicians to be realistic with patients about their prognosis and deliver news with a dose of gentle truth from the start.

“We should invite patients ‘into the know’ as early as possible, while maintaining hope,” she said.

She calls this approach of balancing hope and reality “walking two roads” and said it extends throughout the illness journey. This way, patients are less likely to be surprised if things make a turn for the worse.

“We should never wait until the 11th hour to give someone bad news,” she said.
 

‘We all want to hope’

Dr. Epstein has listened to hundreds of hours of discussion between doctors and patients as part of his research on communication. He often hears doctors initiate difficult conversations by lecturing a patient.

Many physicians mistakenly believe that, if they say something authoritatively, patients will believe it, he said. But the opposite often happens – patients shut down and instinctively distrust the physician.

Dr. Epstein teaches doctors to establish trust before providing difficult information. Even when a patient expresses outlandish ideas about their illness, treat them with dignity and respect, he advised. “If people don’t feel respected, you don’t have a leg to stand on and there’s no point in trying to convince them.”

Patients and physicians often leave conversations with discordant views of what’s ahead. In one study, two-thirds of patients held wildly different views on their prognosis, compared with their doctors, and most had no idea they were at odds with their physician.

In the past, Dr. Epstein has tried to close the gap between his understanding of a patient’s prognosis and the patient’s. But more recently he has become less convinced of the need to do so.

“What I try to do now is focus more on the uncertainty there,” he said. He uses phrases like: “Given that we don’t know how long you will live, I just need to know what you would want me to do if things took a turn for the worse” or “I’m worried that if you don’t have the surgery, you might experience more pain in the future.”

He urged doctors to pay attention to their word choices. Use care with the phrase “response rate” – patients sometimes mistake this to mean that they are being cured. And, instead of telling patients they “must” do something, he says that he worries about consequences for them if they don’t.

He asks patients what they’re hearing from other people in their lives or online. Sometimes patients say that people close to them are encouraging them to stop medical treatment or pursue alternative therapies. When that happens, Dr. Epstein asks to meet with that person to talk to them about his concerns for their loved one.

He also acknowledges calculated uncertainty often exists in medicine. That, he says, leaves open the potential for exceptional circumstances.

“And we all want to hope,” Dr. Epstein said.

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

In June, Rebecca A. Shatsky, MD, a medical oncologist, turned to Twitter for advice: “What do you do/say when a patient won’t believe you that they have #CANCER. As an oncologist this comes up every now and then and proves very difficult, looking to hear how others have dealt and what works best to help patients here.”

About a dozen people weighed in, offering various thoughts on how to approach these thorny situations. One oncologist suggested revisiting the conversation a few days later, after the patient has more time to process; others suggested sharing the pathology report or images with their patient.

Another person simply noted that “if a [patient] doesn’t want to believe they have cancer, no amount of evidence will change that.”

Based on the initial responses, “it appears there is a paucity of answers sadly,” wrote Dr. Shatsky, a breast cancer specialist at University of California, San Diego.

But for Dr. Shatsky, these incidents spoke to another alarming trend: a rampant mistrust of the medical community that is “becoming MORE common instead of less.”
 

‘Erosion of trust’

Overall, experts say that situations like the one Dr. Shatsky described – patients who don’t believe their cancer diagnosis – occur infrequently.

But denial comes in many forms, and complete disbelief is probably the most extreme. Patients may also downplay the severity of their disease, shy away from hearing bad news, or refuse standard treatment or their doctor’s advice.

Like Dr. Shatsky, these experts say they are also seeing a troubling increase in patients who don’t believe their physicians or don’t trust their recommendations.

“I think there’s an erosion of trust in expertise, in general,” said Ronald M. Epstein, MD, professor of family medicine and psychiatry & oncology at the University of Rochester (N.Y.). “People distrust science more than they did maybe 20 or 30 years ago, or at least that seems to be the case.”

Denial and distrust in cancer care are not new. These responses – along with wishful thinking, distraction, and minimization – are long-established responses among oncology patients. In 1972, Avery D. Weisman, MD, a psychiatrist at Harvard Medical School, Boston, wrote his book “On Dying and Denying,” and ever since, denial and similar responses have been explored in the oncology literature.

Much of this research has focused on the latter stages of illness, but denial can be present at diagnosis as well. One study of patients with breast cancer, carried out nearly 30 years ago, suggested that denial of diagnosis generally occurs early in a patient’s course of illness and decreases over time, but may arise again in the terminal phase of cancer. Another analysis, evaluating this phenomenon across 13 studies, found that the prevalence of denial at diagnosis ranged from 4% to as high as 47%. 

An oncologist delivers somewhere between 10,000 to 30,000 episodes of bad news over the course of a career, so there’s always a chance that a patient will respond in a way that’s on the “spectrum of disbelief,” said Paul Helft, MD, professor of medicine and recently retired director of the ethics center at Indiana University, Indianapolis.

Diane Meier, MD, said denial and disbelief are natural, protective responses to difficult or frightening news.

When patients exhibit denial, Dr. Meier advises patience and time. Physicians can also ask the patient if there’s a person they trust – a family member or faith leader, for example – who could speak on their behalf about possible next steps.

“The main thing is not to find ourselves in opposition to the patient ... or threaten them with what will happen if they don’t listen to us,” said Dr. Meier, a professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai, New York.

And physicians should be careful when they feel themselves wanting to argue with or lecture a patient.

“The minute we feel that urge coming on, that’s a signal to us to stop and realize that something is going on inside the patient that we don’t understand,” she said. “Forcing information on a person who is signaling in every way that they don’t want it and can’t handle it is not a recipe for trust or a high-quality relationship.”
 

Refusing expert advice

Jennifer Lycette, MD, has encountered a growing number of patients who don’t believe their disease should be treated the way she or other oncologists recommend. Some patients remain adamant about sticking with alternative medicine or doing nothing, despite growing sicker.

“I’ve even had situations where the tumor might be visible, like growing through the skin, and people still double down that whatever they’re doing is working,” said Dr. Lycette, a hematologist and medical oncologist at the Providence Seaside Cancer Center in Seaside, Ore.

She encourages these patients to get a second opinion and tries to keep an open mind about alternative approaches. If she’s not familiar with something a patient is considering, she’ll research it with them.

But she makes sure to point out any risks associated with these approaches. While some alternative therapies can support patients through standard treatment, she strongly cautions patients against using these therapies in place of standard treatment.

“The bottom line is to keep the lines of communication open,” she said.

Like Dr. Lycette, Dr. Helft has been encountering more patients with alternative health beliefs who rely on people outside of the medical system for elements of their care.

In the past, he used to tell these patients that science is incomplete, and physicians don’t know everything. But he’s changed his tune.

“I’ve taken to just telling them what I believe, which is that the majority of things that they hear and are being sold are almost certainly ineffective and a waste of money,” he said. “I’ve come to accept that people are adults, and they make their own decisions, and sometimes they make decisions that are not the ones that I would make or want them to make.”
 

Delivering bad news

Dr. Helft often sees patients seeking a second or third opinion on their cancer. These patients may not all be in denial about having cancer, but they typically don’t want to hear bad news, which can make treatment a challenge.

To handle these scenarios, Dr. Helft has developed a system of responses for engaging with patients. He borrows an approach described in 2008 where he acknowledges a patient’s emotional distress and tries to understand why they may not want to know more.

For instance, he might tell a patient: “I have formulated an opinion about your situation, but it sounds as if you have heard many negative descriptions previously. I don’t want to burden you with one more if you don’t feel prepared to talk about it.”

Trying to understand why a patient is resistant to hearing about their condition may also help build trust. “If you could help me understand your thinking about why you would rather not talk about prognosis, it will help me know more about how to discuss other serious issues,” is one approach highlighted in the 2008 guide.

Behind the scenes, Dr. Helft will privately assess how much information about a patient’s prognosis is salient to their decision making, especially if the patient appears to misunderstand their prognosis or if there are various options for treatment over the long-term. 

Dr. Helft will also ask patients how much they want to know. Do they want to discuss no options? A few? All and in detail?

This approach implicitly recognizes that the information is highly stressful but avoids being overly blunt, he notes. It can also help steer patients on the right treatment track and minimize poor decision making.

Samantha Winemaker, MD, a palliative care physician in Hamilton, Ont., finds patients often go through an adjustment period after learning about a new diagnosis. The reaction tends to range from needing time to accept the diagnosis as real to jumping in to understand as much as possible.

Dr. Winemaker, who cohosts “The Waiting Room Revolution” podcast that focuses on helping people deal with a serious illness, encourages physicians to be realistic with patients about their prognosis and deliver news with a dose of gentle truth from the start.

“We should invite patients ‘into the know’ as early as possible, while maintaining hope,” she said.

She calls this approach of balancing hope and reality “walking two roads” and said it extends throughout the illness journey. This way, patients are less likely to be surprised if things make a turn for the worse.

“We should never wait until the 11th hour to give someone bad news,” she said.
 

‘We all want to hope’

Dr. Epstein has listened to hundreds of hours of discussion between doctors and patients as part of his research on communication. He often hears doctors initiate difficult conversations by lecturing a patient.

Many physicians mistakenly believe that, if they say something authoritatively, patients will believe it, he said. But the opposite often happens – patients shut down and instinctively distrust the physician.

Dr. Epstein teaches doctors to establish trust before providing difficult information. Even when a patient expresses outlandish ideas about their illness, treat them with dignity and respect, he advised. “If people don’t feel respected, you don’t have a leg to stand on and there’s no point in trying to convince them.”

Patients and physicians often leave conversations with discordant views of what’s ahead. In one study, two-thirds of patients held wildly different views on their prognosis, compared with their doctors, and most had no idea they were at odds with their physician.

In the past, Dr. Epstein has tried to close the gap between his understanding of a patient’s prognosis and the patient’s. But more recently he has become less convinced of the need to do so.

“What I try to do now is focus more on the uncertainty there,” he said. He uses phrases like: “Given that we don’t know how long you will live, I just need to know what you would want me to do if things took a turn for the worse” or “I’m worried that if you don’t have the surgery, you might experience more pain in the future.”

He urged doctors to pay attention to their word choices. Use care with the phrase “response rate” – patients sometimes mistake this to mean that they are being cured. And, instead of telling patients they “must” do something, he says that he worries about consequences for them if they don’t.

He asks patients what they’re hearing from other people in their lives or online. Sometimes patients say that people close to them are encouraging them to stop medical treatment or pursue alternative therapies. When that happens, Dr. Epstein asks to meet with that person to talk to them about his concerns for their loved one.

He also acknowledges calculated uncertainty often exists in medicine. That, he says, leaves open the potential for exceptional circumstances.

“And we all want to hope,” Dr. Epstein said.

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

In June, Rebecca A. Shatsky, MD, a medical oncologist, turned to Twitter for advice: “What do you do/say when a patient won’t believe you that they have #CANCER. As an oncologist this comes up every now and then and proves very difficult, looking to hear how others have dealt and what works best to help patients here.”

About a dozen people weighed in, offering various thoughts on how to approach these thorny situations. One oncologist suggested revisiting the conversation a few days later, after the patient has more time to process; others suggested sharing the pathology report or images with their patient.

Another person simply noted that “if a [patient] doesn’t want to believe they have cancer, no amount of evidence will change that.”

Based on the initial responses, “it appears there is a paucity of answers sadly,” wrote Dr. Shatsky, a breast cancer specialist at University of California, San Diego.

But for Dr. Shatsky, these incidents spoke to another alarming trend: a rampant mistrust of the medical community that is “becoming MORE common instead of less.”
 

‘Erosion of trust’

Overall, experts say that situations like the one Dr. Shatsky described – patients who don’t believe their cancer diagnosis – occur infrequently.

But denial comes in many forms, and complete disbelief is probably the most extreme. Patients may also downplay the severity of their disease, shy away from hearing bad news, or refuse standard treatment or their doctor’s advice.

Like Dr. Shatsky, these experts say they are also seeing a troubling increase in patients who don’t believe their physicians or don’t trust their recommendations.

“I think there’s an erosion of trust in expertise, in general,” said Ronald M. Epstein, MD, professor of family medicine and psychiatry & oncology at the University of Rochester (N.Y.). “People distrust science more than they did maybe 20 or 30 years ago, or at least that seems to be the case.”

Denial and distrust in cancer care are not new. These responses – along with wishful thinking, distraction, and minimization – are long-established responses among oncology patients. In 1972, Avery D. Weisman, MD, a psychiatrist at Harvard Medical School, Boston, wrote his book “On Dying and Denying,” and ever since, denial and similar responses have been explored in the oncology literature.

Much of this research has focused on the latter stages of illness, but denial can be present at diagnosis as well. One study of patients with breast cancer, carried out nearly 30 years ago, suggested that denial of diagnosis generally occurs early in a patient’s course of illness and decreases over time, but may arise again in the terminal phase of cancer. Another analysis, evaluating this phenomenon across 13 studies, found that the prevalence of denial at diagnosis ranged from 4% to as high as 47%. 

An oncologist delivers somewhere between 10,000 to 30,000 episodes of bad news over the course of a career, so there’s always a chance that a patient will respond in a way that’s on the “spectrum of disbelief,” said Paul Helft, MD, professor of medicine and recently retired director of the ethics center at Indiana University, Indianapolis.

Diane Meier, MD, said denial and disbelief are natural, protective responses to difficult or frightening news.

When patients exhibit denial, Dr. Meier advises patience and time. Physicians can also ask the patient if there’s a person they trust – a family member or faith leader, for example – who could speak on their behalf about possible next steps.

“The main thing is not to find ourselves in opposition to the patient ... or threaten them with what will happen if they don’t listen to us,” said Dr. Meier, a professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai, New York.

And physicians should be careful when they feel themselves wanting to argue with or lecture a patient.

“The minute we feel that urge coming on, that’s a signal to us to stop and realize that something is going on inside the patient that we don’t understand,” she said. “Forcing information on a person who is signaling in every way that they don’t want it and can’t handle it is not a recipe for trust or a high-quality relationship.”
 

Refusing expert advice

Jennifer Lycette, MD, has encountered a growing number of patients who don’t believe their disease should be treated the way she or other oncologists recommend. Some patients remain adamant about sticking with alternative medicine or doing nothing, despite growing sicker.

“I’ve even had situations where the tumor might be visible, like growing through the skin, and people still double down that whatever they’re doing is working,” said Dr. Lycette, a hematologist and medical oncologist at the Providence Seaside Cancer Center in Seaside, Ore.

She encourages these patients to get a second opinion and tries to keep an open mind about alternative approaches. If she’s not familiar with something a patient is considering, she’ll research it with them.

But she makes sure to point out any risks associated with these approaches. While some alternative therapies can support patients through standard treatment, she strongly cautions patients against using these therapies in place of standard treatment.

“The bottom line is to keep the lines of communication open,” she said.

Like Dr. Lycette, Dr. Helft has been encountering more patients with alternative health beliefs who rely on people outside of the medical system for elements of their care.

In the past, he used to tell these patients that science is incomplete, and physicians don’t know everything. But he’s changed his tune.

“I’ve taken to just telling them what I believe, which is that the majority of things that they hear and are being sold are almost certainly ineffective and a waste of money,” he said. “I’ve come to accept that people are adults, and they make their own decisions, and sometimes they make decisions that are not the ones that I would make or want them to make.”
 

Delivering bad news

Dr. Helft often sees patients seeking a second or third opinion on their cancer. These patients may not all be in denial about having cancer, but they typically don’t want to hear bad news, which can make treatment a challenge.

To handle these scenarios, Dr. Helft has developed a system of responses for engaging with patients. He borrows an approach described in 2008 where he acknowledges a patient’s emotional distress and tries to understand why they may not want to know more.

For instance, he might tell a patient: “I have formulated an opinion about your situation, but it sounds as if you have heard many negative descriptions previously. I don’t want to burden you with one more if you don’t feel prepared to talk about it.”

Trying to understand why a patient is resistant to hearing about their condition may also help build trust. “If you could help me understand your thinking about why you would rather not talk about prognosis, it will help me know more about how to discuss other serious issues,” is one approach highlighted in the 2008 guide.

Behind the scenes, Dr. Helft will privately assess how much information about a patient’s prognosis is salient to their decision making, especially if the patient appears to misunderstand their prognosis or if there are various options for treatment over the long-term. 

Dr. Helft will also ask patients how much they want to know. Do they want to discuss no options? A few? All and in detail?

This approach implicitly recognizes that the information is highly stressful but avoids being overly blunt, he notes. It can also help steer patients on the right treatment track and minimize poor decision making.

Samantha Winemaker, MD, a palliative care physician in Hamilton, Ont., finds patients often go through an adjustment period after learning about a new diagnosis. The reaction tends to range from needing time to accept the diagnosis as real to jumping in to understand as much as possible.

Dr. Winemaker, who cohosts “The Waiting Room Revolution” podcast that focuses on helping people deal with a serious illness, encourages physicians to be realistic with patients about their prognosis and deliver news with a dose of gentle truth from the start.

“We should invite patients ‘into the know’ as early as possible, while maintaining hope,” she said.

She calls this approach of balancing hope and reality “walking two roads” and said it extends throughout the illness journey. This way, patients are less likely to be surprised if things make a turn for the worse.

“We should never wait until the 11th hour to give someone bad news,” she said.
 

‘We all want to hope’

Dr. Epstein has listened to hundreds of hours of discussion between doctors and patients as part of his research on communication. He often hears doctors initiate difficult conversations by lecturing a patient.

Many physicians mistakenly believe that, if they say something authoritatively, patients will believe it, he said. But the opposite often happens – patients shut down and instinctively distrust the physician.

Dr. Epstein teaches doctors to establish trust before providing difficult information. Even when a patient expresses outlandish ideas about their illness, treat them with dignity and respect, he advised. “If people don’t feel respected, you don’t have a leg to stand on and there’s no point in trying to convince them.”

Patients and physicians often leave conversations with discordant views of what’s ahead. In one study, two-thirds of patients held wildly different views on their prognosis, compared with their doctors, and most had no idea they were at odds with their physician.

In the past, Dr. Epstein has tried to close the gap between his understanding of a patient’s prognosis and the patient’s. But more recently he has become less convinced of the need to do so.

“What I try to do now is focus more on the uncertainty there,” he said. He uses phrases like: “Given that we don’t know how long you will live, I just need to know what you would want me to do if things took a turn for the worse” or “I’m worried that if you don’t have the surgery, you might experience more pain in the future.”

He urged doctors to pay attention to their word choices. Use care with the phrase “response rate” – patients sometimes mistake this to mean that they are being cured. And, instead of telling patients they “must” do something, he says that he worries about consequences for them if they don’t.

He asks patients what they’re hearing from other people in their lives or online. Sometimes patients say that people close to them are encouraging them to stop medical treatment or pursue alternative therapies. When that happens, Dr. Epstein asks to meet with that person to talk to them about his concerns for their loved one.

He also acknowledges calculated uncertainty often exists in medicine. That, he says, leaves open the potential for exceptional circumstances.

“And we all want to hope,” Dr. Epstein said.

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

Six years ago, Kim Bowles had a double mastectomy after being diagnosed with stage 3 breast cancer. Instead of opting for reconstruction, she decided to go “flat.” At 35, she had already breast fed both of her children, and didn’t want breasts anymore.

She asked her surgeon for an aesthetic flat closure, showing him photos of a smooth chest with no excess skin flaps. Although he agreed to her request in the office, he reneged in the operating room.

As the anesthesia took effect he said, “I’ll just leave a little extra skin, in case you change your mind.”

The last thing she remembers is telling him “no.”

When Ms. Bowles woke up, she saw excess tissue instead of the smooth chest she had requested. When she was eventually well enough, she staged a topless sit-in at the hospital and marched outside with a placard, baring her breastless, disfigured chest.

“Do I need a B-cup side-boob?” she asked, pulling at her lateral excess tissue, often referred to as dog ears. “You would never think that a surgeon would leave somebody looking like that,” she said in an interview.

Based on her experience, Ms. Bowles coined the term “flat denial” to describe what her surgeon did.
 

The weight of flat denial

In a recent study, Deanna Attai, MD, a breast surgeon at University of California, Los Angeles, discovered that more than one in five women who want a flat closure experience flat denial.

But well before that survey, Dr. Attai first came across flat denial more than a decade ago when a patient came to her for a second opinion after another surgeon insisted the patient see a psychiatrist when she requested a flat closure. Dr. Attai performed the flat closure for her instead.

But Dr. Attai said flat denial can take many forms. Some experiences may closely match the paternalistic encounter Ms. Bowles had, where a surgeon disregards a patient’s request. Other surgeons may simply be ignorant that a flat closure can be achieved aesthetically or that patients would even want this option.

This resistance aligns with Hester Schnipper’s experience as an oncology social worker. In her 45-year career, she has often found herself pushing back against breast surgeons who present reconstruction as if it were the only option for patients after mastectomy.

“And because most women are so overwhelmed, so scared, so stressed, they tend to go with whatever the doctor suggests,” said Ms. Schnipper.

Whatever form flat denial takes, the outcome can be damaging to the patient.

“This isn’t just ‘my scar’s a little thick.’ This is much more,” Dr. Attai said. “How do you even put a prosthesis on that? And if you’re not going to do a prosthesis in a bra, how do you even wear a shirt with all of that? It becomes a cleaning issue and depending on how things scar down you can get irregular fibrosis.”

What’s more, the harms of flat denial can extend beyond the physical scars.

Like Ms. Bowles, Anne Marie Champagne had made her desire for a flat closure clear to her surgeon before undergoing a mastectomy in 2009. The surgeon also reneged in the operating room while Champagne was unconscious and unable to object.

Ms. Champagne told The Washington Post that her surgeon’s justification for his actions left her feeling “profound grief, a combination of heartache and anger.

“I couldn’t believe that my surgeon would make a decision for me while I was under anesthesia that went against everything we had discussed – what I had consented to.”

Although it’s not clear how often women experience flat denial, discussions surrounding the issue have increased in recent years.

Ms. Bowles started a patient advocacy organization called “Not Putting on A Shirt” to help other women. And Dr. Attai moderates a Twitter group, called #BCSM or Breast Cancer Social Media, where patients share their experiences of breast cancer treatment, including in some cases flat denial.

“In getting to know so many women in the online space, an early observation was that the conversations online were different than what we had in the office,” Dr. Attai said. Online, “women were less guarded and more open about sharing the entirety of their breast cancer experience, including the more painful and raw moments.”

Being immersed in these moments, it also became clear to Dr. Attai that members of the treatment team don’t always recognize what is most important to a patient. “We might not ask, we might not allow them the time to express their preferences, or we might not really hear them,” she said.
 

An evolving awareness

National figures on the prevalence of flat closures remain elusive, but it has always been an option. And data indicate that many women choose no reconstruction after mastectomy.

One U.S. survey of women undergoing mastectomy between 2005 and 2007 found that 58% opted not to receive reconstruction, and a more recent British National Mastectomy and Breast Reconstruction Audit from 2011 found 70% chose no reconstruction.

“I definitely have seen more patients requesting to go flat after mastectomy, likely as they feel more empowered to make this decision,” Roshni Rao, MD, chief of breast surgery at Columbia University Medical Center, New York, told The Washington Post.

But to better understand the scope of flat denial, Dr. Attai and colleagues conducted a survey, published in Annals of Surgical Oncology. In it, she found that, among 931 women who had opted to go flat after mastectomy, 22% had experienced flat denial. That meant not being offered the option of going flat, not being supported in their choice to go flat, or not receiving the flat closure surgery initially agreed upon.

In the spring of 2022, Dr. Attai, past president of the American Society of Breast Surgeons, took her results to the society’s annual meeting. The goal was to bring to light aesthetic flat closure techniques as well as the harms of flat denial, presenting photos of the sagging, shriveled skin flaps alongside her analysis.

“No one ever goes into an operation intending it to look like those horrible pictures,” she said.

Asking for “no breast mound reconstruction” should imply a nice neat flat closure, or an aesthetic flat closure, Dr. Attai explained. “A patient should not have to specify she wants the surgeon to make all efforts to remove redundant and excess skin and fat, but I do think having the discussion and making preferences very clear is important, especially as we’ve seen that some patients are not getting the desired outcome.”

To help improve education and communication, the board of “No Putting on a Shirt” also had an exhibitor’s booth focused on aesthetic flat closures at the ASBrS meeting.

And given this growing awareness, the National Accreditation Program for Breast Centers has begun asking breast centers to report their process for shared decision-making on postmastectomy choices and provide proof that patients’ closure choices are being heard and followed.
 

A shift toward aesthetics

Despite a growing interest in flat closure aesthetics, the landscape shift is still relatively new.

The traditional mastectomy training Dr. Attai and colleagues went through in the 1990s did not emphasize aesthetics.

“I just removed the breast and then I left the room,” she said, explaining that the plastic surgeon took charge of the reconstruction. “We never really learned how to make a nice, neat closure.”

Abhishek Chatterjee, MD, MBA, a breast surgical oncologist and board-certified plastic surgeon, agreed that aesthetics have become more central in the field.

“A decade ago, I would argue that ... it wasn’t in the training program,” but today breast surgery fellowships now include “flat closures that are aesthetically appropriate,” said Dr. Chatterjee, who works at Tufts Medical Center in Boston and is vice chair of the ASBrS oncoplastics committee.

“In my mind, and in any surgeon’s mind, when you do something, you have to do it well ... and with that, aesthetics should be presumed,” he added.

But the term “aesthetic flat closure” was only adopted by the National Cancer Institute in 2020. The NCI, which considers an aesthetic flat closure reconstructive not cosmetic surgery, defines it as rebuilding the shape of the chest wall after breasts are removed, and involves contouring and eliminating excess tissue to create a smooth, flat chest wall.

Achieving this smooth look requires a skilled surgeon trained in flat closure reconstruction, which is not necessarily a guarantee. To help women find a surgeon, “Not Putting on A Shirt” has a flat friendly directory where patients can recommend surgeons who provide aesthetic flat closures. As of August 2022, the list has now grown to over 300 surgeons.

Dr. Chatterjee said the ASBrS is actively involved in training surgeons in aesthetic flat closure. Given this shift, he said most general or breast surgeons should have the skill set to design mastectomy flaps that enable a flat closure with no excess skin, but there are some caveats.

For instance, he noted, if a woman has a lot of breast tissue and excess skin in the outer, lateral folds of the axilla, “it is very, very hard to get a flat closure” and in those rare circumstances, a breast surgeon may need assistance from a plastic surgeon.

But Dr. Attai found a significant gap still exists between what should be done and what is being done in practice.

Part of that disconnect may stem from the lack of a standard of care.

In a recent publication, a team of plastic surgeons from New York University noted that, to date, “there is no plastic surgery literature on specific techniques to achieve an aesthetic flat closure after mastectomy.”

And Dr. Attai added, “there is really no way to know at this point what women are getting when they choose no breast mound reconstruction.”

Physicians may also simply not understand what their patients want.

Dr. Attai said she was “blown away” by the reaction to her presentation on flat denial at ASBrS in April. “I had a lot of members come up to me afterwards and say ‘I had no idea that patients would want this. I am guilty of not offering this.’ ”

In addition, Dr. Chatterjee said, patients may now have “much higher” expectations for a smooth, symmetrical look “versus an outcome with excess skin and bumps.”

But Ms. Bowles said the desire for a more aesthetically pleasing look is nothing new.

“Women have always cared about how they look, they are just shamed into accepting a lesser result,” she argued. “If you look at why women go flat, the primary reason is they don’t want more surgery, not ‘I don’t care what I look like.’ ”

Three years after the mastectomy that left flaps of skin hanging from her chest, Ms. Bowles finally had a revision surgery to achieve the flat closure aesthetic she had wanted from the get-go.

“Nobody expects perfection, but I think the important thing is to have a standard of care that’s optimal,” said Ms. Bowles. “A patient like me should not have needed another surgery.”

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

Six years ago, Kim Bowles had a double mastectomy after being diagnosed with stage 3 breast cancer. Instead of opting for reconstruction, she decided to go “flat.” At 35, she had already breast fed both of her children, and didn’t want breasts anymore.

She asked her surgeon for an aesthetic flat closure, showing him photos of a smooth chest with no excess skin flaps. Although he agreed to her request in the office, he reneged in the operating room.

As the anesthesia took effect he said, “I’ll just leave a little extra skin, in case you change your mind.”

The last thing she remembers is telling him “no.”

When Ms. Bowles woke up, she saw excess tissue instead of the smooth chest she had requested. When she was eventually well enough, she staged a topless sit-in at the hospital and marched outside with a placard, baring her breastless, disfigured chest.

“Do I need a B-cup side-boob?” she asked, pulling at her lateral excess tissue, often referred to as dog ears. “You would never think that a surgeon would leave somebody looking like that,” she said in an interview.

Based on her experience, Ms. Bowles coined the term “flat denial” to describe what her surgeon did.
 

The weight of flat denial

In a recent study, Deanna Attai, MD, a breast surgeon at University of California, Los Angeles, discovered that more than one in five women who want a flat closure experience flat denial.

But well before that survey, Dr. Attai first came across flat denial more than a decade ago when a patient came to her for a second opinion after another surgeon insisted the patient see a psychiatrist when she requested a flat closure. Dr. Attai performed the flat closure for her instead.

But Dr. Attai said flat denial can take many forms. Some experiences may closely match the paternalistic encounter Ms. Bowles had, where a surgeon disregards a patient’s request. Other surgeons may simply be ignorant that a flat closure can be achieved aesthetically or that patients would even want this option.

This resistance aligns with Hester Schnipper’s experience as an oncology social worker. In her 45-year career, she has often found herself pushing back against breast surgeons who present reconstruction as if it were the only option for patients after mastectomy.

“And because most women are so overwhelmed, so scared, so stressed, they tend to go with whatever the doctor suggests,” said Ms. Schnipper.

Whatever form flat denial takes, the outcome can be damaging to the patient.

“This isn’t just ‘my scar’s a little thick.’ This is much more,” Dr. Attai said. “How do you even put a prosthesis on that? And if you’re not going to do a prosthesis in a bra, how do you even wear a shirt with all of that? It becomes a cleaning issue and depending on how things scar down you can get irregular fibrosis.”

What’s more, the harms of flat denial can extend beyond the physical scars.

Like Ms. Bowles, Anne Marie Champagne had made her desire for a flat closure clear to her surgeon before undergoing a mastectomy in 2009. The surgeon also reneged in the operating room while Champagne was unconscious and unable to object.

Ms. Champagne told The Washington Post that her surgeon’s justification for his actions left her feeling “profound grief, a combination of heartache and anger.

“I couldn’t believe that my surgeon would make a decision for me while I was under anesthesia that went against everything we had discussed – what I had consented to.”

Although it’s not clear how often women experience flat denial, discussions surrounding the issue have increased in recent years.

Ms. Bowles started a patient advocacy organization called “Not Putting on A Shirt” to help other women. And Dr. Attai moderates a Twitter group, called #BCSM or Breast Cancer Social Media, where patients share their experiences of breast cancer treatment, including in some cases flat denial.

“In getting to know so many women in the online space, an early observation was that the conversations online were different than what we had in the office,” Dr. Attai said. Online, “women were less guarded and more open about sharing the entirety of their breast cancer experience, including the more painful and raw moments.”

Being immersed in these moments, it also became clear to Dr. Attai that members of the treatment team don’t always recognize what is most important to a patient. “We might not ask, we might not allow them the time to express their preferences, or we might not really hear them,” she said.
 

An evolving awareness

National figures on the prevalence of flat closures remain elusive, but it has always been an option. And data indicate that many women choose no reconstruction after mastectomy.

One U.S. survey of women undergoing mastectomy between 2005 and 2007 found that 58% opted not to receive reconstruction, and a more recent British National Mastectomy and Breast Reconstruction Audit from 2011 found 70% chose no reconstruction.

“I definitely have seen more patients requesting to go flat after mastectomy, likely as they feel more empowered to make this decision,” Roshni Rao, MD, chief of breast surgery at Columbia University Medical Center, New York, told The Washington Post.

But to better understand the scope of flat denial, Dr. Attai and colleagues conducted a survey, published in Annals of Surgical Oncology. In it, she found that, among 931 women who had opted to go flat after mastectomy, 22% had experienced flat denial. That meant not being offered the option of going flat, not being supported in their choice to go flat, or not receiving the flat closure surgery initially agreed upon.

In the spring of 2022, Dr. Attai, past president of the American Society of Breast Surgeons, took her results to the society’s annual meeting. The goal was to bring to light aesthetic flat closure techniques as well as the harms of flat denial, presenting photos of the sagging, shriveled skin flaps alongside her analysis.

“No one ever goes into an operation intending it to look like those horrible pictures,” she said.

Asking for “no breast mound reconstruction” should imply a nice neat flat closure, or an aesthetic flat closure, Dr. Attai explained. “A patient should not have to specify she wants the surgeon to make all efforts to remove redundant and excess skin and fat, but I do think having the discussion and making preferences very clear is important, especially as we’ve seen that some patients are not getting the desired outcome.”

To help improve education and communication, the board of “No Putting on a Shirt” also had an exhibitor’s booth focused on aesthetic flat closures at the ASBrS meeting.

And given this growing awareness, the National Accreditation Program for Breast Centers has begun asking breast centers to report their process for shared decision-making on postmastectomy choices and provide proof that patients’ closure choices are being heard and followed.
 

A shift toward aesthetics

Despite a growing interest in flat closure aesthetics, the landscape shift is still relatively new.

The traditional mastectomy training Dr. Attai and colleagues went through in the 1990s did not emphasize aesthetics.

“I just removed the breast and then I left the room,” she said, explaining that the plastic surgeon took charge of the reconstruction. “We never really learned how to make a nice, neat closure.”

Abhishek Chatterjee, MD, MBA, a breast surgical oncologist and board-certified plastic surgeon, agreed that aesthetics have become more central in the field.

“A decade ago, I would argue that ... it wasn’t in the training program,” but today breast surgery fellowships now include “flat closures that are aesthetically appropriate,” said Dr. Chatterjee, who works at Tufts Medical Center in Boston and is vice chair of the ASBrS oncoplastics committee.

“In my mind, and in any surgeon’s mind, when you do something, you have to do it well ... and with that, aesthetics should be presumed,” he added.

But the term “aesthetic flat closure” was only adopted by the National Cancer Institute in 2020. The NCI, which considers an aesthetic flat closure reconstructive not cosmetic surgery, defines it as rebuilding the shape of the chest wall after breasts are removed, and involves contouring and eliminating excess tissue to create a smooth, flat chest wall.

Achieving this smooth look requires a skilled surgeon trained in flat closure reconstruction, which is not necessarily a guarantee. To help women find a surgeon, “Not Putting on A Shirt” has a flat friendly directory where patients can recommend surgeons who provide aesthetic flat closures. As of August 2022, the list has now grown to over 300 surgeons.

Dr. Chatterjee said the ASBrS is actively involved in training surgeons in aesthetic flat closure. Given this shift, he said most general or breast surgeons should have the skill set to design mastectomy flaps that enable a flat closure with no excess skin, but there are some caveats.

For instance, he noted, if a woman has a lot of breast tissue and excess skin in the outer, lateral folds of the axilla, “it is very, very hard to get a flat closure” and in those rare circumstances, a breast surgeon may need assistance from a plastic surgeon.

But Dr. Attai found a significant gap still exists between what should be done and what is being done in practice.

Part of that disconnect may stem from the lack of a standard of care.

In a recent publication, a team of plastic surgeons from New York University noted that, to date, “there is no plastic surgery literature on specific techniques to achieve an aesthetic flat closure after mastectomy.”

And Dr. Attai added, “there is really no way to know at this point what women are getting when they choose no breast mound reconstruction.”

Physicians may also simply not understand what their patients want.

Dr. Attai said she was “blown away” by the reaction to her presentation on flat denial at ASBrS in April. “I had a lot of members come up to me afterwards and say ‘I had no idea that patients would want this. I am guilty of not offering this.’ ”

In addition, Dr. Chatterjee said, patients may now have “much higher” expectations for a smooth, symmetrical look “versus an outcome with excess skin and bumps.”

But Ms. Bowles said the desire for a more aesthetically pleasing look is nothing new.

“Women have always cared about how they look, they are just shamed into accepting a lesser result,” she argued. “If you look at why women go flat, the primary reason is they don’t want more surgery, not ‘I don’t care what I look like.’ ”

Three years after the mastectomy that left flaps of skin hanging from her chest, Ms. Bowles finally had a revision surgery to achieve the flat closure aesthetic she had wanted from the get-go.

“Nobody expects perfection, but I think the important thing is to have a standard of care that’s optimal,” said Ms. Bowles. “A patient like me should not have needed another surgery.”

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

Six years ago, Kim Bowles had a double mastectomy after being diagnosed with stage 3 breast cancer. Instead of opting for reconstruction, she decided to go “flat.” At 35, she had already breast fed both of her children, and didn’t want breasts anymore.

She asked her surgeon for an aesthetic flat closure, showing him photos of a smooth chest with no excess skin flaps. Although he agreed to her request in the office, he reneged in the operating room.

As the anesthesia took effect he said, “I’ll just leave a little extra skin, in case you change your mind.”

The last thing she remembers is telling him “no.”

When Ms. Bowles woke up, she saw excess tissue instead of the smooth chest she had requested. When she was eventually well enough, she staged a topless sit-in at the hospital and marched outside with a placard, baring her breastless, disfigured chest.

“Do I need a B-cup side-boob?” she asked, pulling at her lateral excess tissue, often referred to as dog ears. “You would never think that a surgeon would leave somebody looking like that,” she said in an interview.

Based on her experience, Ms. Bowles coined the term “flat denial” to describe what her surgeon did.
 

The weight of flat denial

In a recent study, Deanna Attai, MD, a breast surgeon at University of California, Los Angeles, discovered that more than one in five women who want a flat closure experience flat denial.

But well before that survey, Dr. Attai first came across flat denial more than a decade ago when a patient came to her for a second opinion after another surgeon insisted the patient see a psychiatrist when she requested a flat closure. Dr. Attai performed the flat closure for her instead.

But Dr. Attai said flat denial can take many forms. Some experiences may closely match the paternalistic encounter Ms. Bowles had, where a surgeon disregards a patient’s request. Other surgeons may simply be ignorant that a flat closure can be achieved aesthetically or that patients would even want this option.

This resistance aligns with Hester Schnipper’s experience as an oncology social worker. In her 45-year career, she has often found herself pushing back against breast surgeons who present reconstruction as if it were the only option for patients after mastectomy.

“And because most women are so overwhelmed, so scared, so stressed, they tend to go with whatever the doctor suggests,” said Ms. Schnipper.

Whatever form flat denial takes, the outcome can be damaging to the patient.

“This isn’t just ‘my scar’s a little thick.’ This is much more,” Dr. Attai said. “How do you even put a prosthesis on that? And if you’re not going to do a prosthesis in a bra, how do you even wear a shirt with all of that? It becomes a cleaning issue and depending on how things scar down you can get irregular fibrosis.”

What’s more, the harms of flat denial can extend beyond the physical scars.

Like Ms. Bowles, Anne Marie Champagne had made her desire for a flat closure clear to her surgeon before undergoing a mastectomy in 2009. The surgeon also reneged in the operating room while Champagne was unconscious and unable to object.

Ms. Champagne told The Washington Post that her surgeon’s justification for his actions left her feeling “profound grief, a combination of heartache and anger.

“I couldn’t believe that my surgeon would make a decision for me while I was under anesthesia that went against everything we had discussed – what I had consented to.”

Although it’s not clear how often women experience flat denial, discussions surrounding the issue have increased in recent years.

Ms. Bowles started a patient advocacy organization called “Not Putting on A Shirt” to help other women. And Dr. Attai moderates a Twitter group, called #BCSM or Breast Cancer Social Media, where patients share their experiences of breast cancer treatment, including in some cases flat denial.

“In getting to know so many women in the online space, an early observation was that the conversations online were different than what we had in the office,” Dr. Attai said. Online, “women were less guarded and more open about sharing the entirety of their breast cancer experience, including the more painful and raw moments.”

Being immersed in these moments, it also became clear to Dr. Attai that members of the treatment team don’t always recognize what is most important to a patient. “We might not ask, we might not allow them the time to express their preferences, or we might not really hear them,” she said.
 

An evolving awareness

National figures on the prevalence of flat closures remain elusive, but it has always been an option. And data indicate that many women choose no reconstruction after mastectomy.

One U.S. survey of women undergoing mastectomy between 2005 and 2007 found that 58% opted not to receive reconstruction, and a more recent British National Mastectomy and Breast Reconstruction Audit from 2011 found 70% chose no reconstruction.

“I definitely have seen more patients requesting to go flat after mastectomy, likely as they feel more empowered to make this decision,” Roshni Rao, MD, chief of breast surgery at Columbia University Medical Center, New York, told The Washington Post.

But to better understand the scope of flat denial, Dr. Attai and colleagues conducted a survey, published in Annals of Surgical Oncology. In it, she found that, among 931 women who had opted to go flat after mastectomy, 22% had experienced flat denial. That meant not being offered the option of going flat, not being supported in their choice to go flat, or not receiving the flat closure surgery initially agreed upon.

In the spring of 2022, Dr. Attai, past president of the American Society of Breast Surgeons, took her results to the society’s annual meeting. The goal was to bring to light aesthetic flat closure techniques as well as the harms of flat denial, presenting photos of the sagging, shriveled skin flaps alongside her analysis.

“No one ever goes into an operation intending it to look like those horrible pictures,” she said.

Asking for “no breast mound reconstruction” should imply a nice neat flat closure, or an aesthetic flat closure, Dr. Attai explained. “A patient should not have to specify she wants the surgeon to make all efforts to remove redundant and excess skin and fat, but I do think having the discussion and making preferences very clear is important, especially as we’ve seen that some patients are not getting the desired outcome.”

To help improve education and communication, the board of “No Putting on a Shirt” also had an exhibitor’s booth focused on aesthetic flat closures at the ASBrS meeting.

And given this growing awareness, the National Accreditation Program for Breast Centers has begun asking breast centers to report their process for shared decision-making on postmastectomy choices and provide proof that patients’ closure choices are being heard and followed.
 

A shift toward aesthetics

Despite a growing interest in flat closure aesthetics, the landscape shift is still relatively new.

The traditional mastectomy training Dr. Attai and colleagues went through in the 1990s did not emphasize aesthetics.

“I just removed the breast and then I left the room,” she said, explaining that the plastic surgeon took charge of the reconstruction. “We never really learned how to make a nice, neat closure.”

Abhishek Chatterjee, MD, MBA, a breast surgical oncologist and board-certified plastic surgeon, agreed that aesthetics have become more central in the field.

“A decade ago, I would argue that ... it wasn’t in the training program,” but today breast surgery fellowships now include “flat closures that are aesthetically appropriate,” said Dr. Chatterjee, who works at Tufts Medical Center in Boston and is vice chair of the ASBrS oncoplastics committee.

“In my mind, and in any surgeon’s mind, when you do something, you have to do it well ... and with that, aesthetics should be presumed,” he added.

But the term “aesthetic flat closure” was only adopted by the National Cancer Institute in 2020. The NCI, which considers an aesthetic flat closure reconstructive not cosmetic surgery, defines it as rebuilding the shape of the chest wall after breasts are removed, and involves contouring and eliminating excess tissue to create a smooth, flat chest wall.

Achieving this smooth look requires a skilled surgeon trained in flat closure reconstruction, which is not necessarily a guarantee. To help women find a surgeon, “Not Putting on A Shirt” has a flat friendly directory where patients can recommend surgeons who provide aesthetic flat closures. As of August 2022, the list has now grown to over 300 surgeons.

Dr. Chatterjee said the ASBrS is actively involved in training surgeons in aesthetic flat closure. Given this shift, he said most general or breast surgeons should have the skill set to design mastectomy flaps that enable a flat closure with no excess skin, but there are some caveats.

For instance, he noted, if a woman has a lot of breast tissue and excess skin in the outer, lateral folds of the axilla, “it is very, very hard to get a flat closure” and in those rare circumstances, a breast surgeon may need assistance from a plastic surgeon.

But Dr. Attai found a significant gap still exists between what should be done and what is being done in practice.

Part of that disconnect may stem from the lack of a standard of care.

In a recent publication, a team of plastic surgeons from New York University noted that, to date, “there is no plastic surgery literature on specific techniques to achieve an aesthetic flat closure after mastectomy.”

And Dr. Attai added, “there is really no way to know at this point what women are getting when they choose no breast mound reconstruction.”

Physicians may also simply not understand what their patients want.

Dr. Attai said she was “blown away” by the reaction to her presentation on flat denial at ASBrS in April. “I had a lot of members come up to me afterwards and say ‘I had no idea that patients would want this. I am guilty of not offering this.’ ”

In addition, Dr. Chatterjee said, patients may now have “much higher” expectations for a smooth, symmetrical look “versus an outcome with excess skin and bumps.”

But Ms. Bowles said the desire for a more aesthetically pleasing look is nothing new.

“Women have always cared about how they look, they are just shamed into accepting a lesser result,” she argued. “If you look at why women go flat, the primary reason is they don’t want more surgery, not ‘I don’t care what I look like.’ ”

Three years after the mastectomy that left flaps of skin hanging from her chest, Ms. Bowles finally had a revision surgery to achieve the flat closure aesthetic she had wanted from the get-go.

“Nobody expects perfection, but I think the important thing is to have a standard of care that’s optimal,” said Ms. Bowles. “A patient like me should not have needed another surgery.”

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

Between 2018 and August 2022, Chinese researchers identified 35 people infected with a new animal virus in eastern China. These cases were reported in The New England Journal of Medicine. When asked by Nature about this emerging virus that has until now flown under the radar, scientists said that they were not overly concerned because the virus doesn’t seem to spread easily between people nor is it fatal.

Researchers think that the virus is carried by shrews. It might have infected people directly or through an intermediate animal.
 

First identified in Langya

The authors describe 35 cases of infection with a virus called Langya henipavirus (LayV) since 2018. It is closely related to two other henipaviruses known to infect people – Hendra virus and Nipah virus. The virus was named Langya after the town in Shandong province in China where the first patient identified with the disease was from, explained coauthor Linfa Wang, PhD, a virologist at Duke-NUS Medical School, Singapore.

Langya can cause respiratory symptoms such as fever, cough, and fatigue. Hendra virus and Nipah virus also cause respiratory infections and can be fatal, the article in Nature reports.
 

Hendra and Nipah

According to the World Health Organization, Nipah virus, which was discovered in 1999, is a new virus responsible for a zoonosis that causes the disease in animals and humans who have had contact with infected animals. Its name comes from the location where it was first identified in Malaysia. Patients may have asymptomatic infection or symptoms such as acute respiratory infection and severe encephalitis. The case fatality rate is between 40% and 75%.

Nipah virus is closely related to another recently discovered (1994) zoonotic virus called Hendra virus, which is named after the Australian city in which it first appeared. On that day in July 2016, 53 cases were identified involving 70 horses. These incidents remained confined to the northeastern coast of Australia.

Nipah virus and Hendra virus belong to the Paramyxoviridae family. “While the members of this group of viruses are only responsible for a few limited outbreaks, the ability of these viruses to infect a wide range of hosts and cause a disease leading to high fatalities in humans has made them a public health concern,” stated the WHO.
 

Related to measles

The research team identified LayV while monitoring patients at three hospitals in the eastern Chinese provinces of Shandong and Henan between April 2018 and August 2021. Throughout the study period, the researchers found 35 people infected with LayV, mostly farmers, with symptoms ranging from a cough to severe pneumonia. Participants were recruited into the study if they had a fever. The team sequenced the LayV genome from a throat swab taken from the first patient identified with the disease, a 53-year-old woman.

The LayV genome showed that the virus is most closely related to Mojiang henipavirus, which was first isolated in rats in an abandoned mine in the southern Chinese province of Yunnan in 2012. Henipaviruses belong to the Paramyxoviridae family of viruses, which includes measles, mumps, and many respiratory viruses that infect humans. Several other henipaviruses have been discovered in bats, rats, and shrews from Australia to South Korea and China, but only Hendra, Nipah, and now LayV are known to infect people, according to Nature.
 

Animal origin likely

Because most patients stated in a questionnaire that they had been exposed to an animal during the month preceding the onset of their symptoms, the researchers tested goats, dogs, pigs, and cattle living in the villages of infected patients for antibodies against LayV. They found LayV antibodies in a handful of goats and dogs and identified LayV viral RNA in 27% of the 262 sampled shrews. These findings suggest that the shrew may be a natural reservoir of LayV, passing it between themselves “and somehow infecting people here and there by chance,” Emily Gurley, PhD, MPH, an infectious diseases epidemiologist at Johns Hopkins University, Baltimore, told Nature.

The researchers did not find strong evidence of LayV spreading between the people included in the study. There were no clusters of cases in the same family, within a short time span, or in close geographical proximity. “Of the 35 cases, not a single one is linked,” said Dr. Wang, which Dr. Gurley considered good news. It should be noted, however ,”that the study did retrospective contact tracing on only 15 family members of nine infected individuals, which makes it difficult to determine how exactly the individuals were exposed,” reported Nature.
 

Vigilance is needed

Should we be worried about a potential new epidemic? The replies from two experts interviewed by Nature were reassuring. “There is no particular need to worry about this virus, but ongoing surveillance is critical,” said Professor Edward Holmes, an evolutionary virologist at the University of Sydney. Regularly testing people and animals for emerging viruses is important to understand the risk for zoonotic diseases – those that can be transmitted from other animals to humans, he said.

It is still not clear how people were infected in the first place – whether directly from shrews or an intermediate animal, said Dr. Gurley. That’s why a lot of research still needs to be done to work out how the virus is spreading in shrews and how people are getting infected, she added.

Nevertheless, Dr. Gurley finds that large outbreaks of infectious diseases typically take off after a lot of false starts. “If we are actively looking for those sparks, then we are in a much better position to stop or to find something early.” Still, she noted that she didn’t see anything in the data to “cause alarm from a pandemic-threat perspective.”

Though there is not currently any cause for worry of a new pandemic, vigilance is crucial. Professor Holmes says there is an urgent need for a global surveillance system to detect virus spillovers and rapidly communicate those results to avoid more pandemics, such as the one sparked by COVID-19. “These sorts of zoonotic spillover events happen all the time,” he said. “The world needs to wake up.”

This article was translated from the Medscape French edition. A version appeared on Medscape.com.

Between 2018 and August 2022, Chinese researchers identified 35 people infected with a new animal virus in eastern China. These cases were reported in The New England Journal of Medicine. When asked by Nature about this emerging virus that has until now flown under the radar, scientists said that they were not overly concerned because the virus doesn’t seem to spread easily between people nor is it fatal.

Researchers think that the virus is carried by shrews. It might have infected people directly or through an intermediate animal.
 

First identified in Langya

The authors describe 35 cases of infection with a virus called Langya henipavirus (LayV) since 2018. It is closely related to two other henipaviruses known to infect people – Hendra virus and Nipah virus. The virus was named Langya after the town in Shandong province in China where the first patient identified with the disease was from, explained coauthor Linfa Wang, PhD, a virologist at Duke-NUS Medical School, Singapore.

Langya can cause respiratory symptoms such as fever, cough, and fatigue. Hendra virus and Nipah virus also cause respiratory infections and can be fatal, the article in Nature reports.
 

Hendra and Nipah

According to the World Health Organization, Nipah virus, which was discovered in 1999, is a new virus responsible for a zoonosis that causes the disease in animals and humans who have had contact with infected animals. Its name comes from the location where it was first identified in Malaysia. Patients may have asymptomatic infection or symptoms such as acute respiratory infection and severe encephalitis. The case fatality rate is between 40% and 75%.

Nipah virus is closely related to another recently discovered (1994) zoonotic virus called Hendra virus, which is named after the Australian city in which it first appeared. On that day in July 2016, 53 cases were identified involving 70 horses. These incidents remained confined to the northeastern coast of Australia.

Nipah virus and Hendra virus belong to the Paramyxoviridae family. “While the members of this group of viruses are only responsible for a few limited outbreaks, the ability of these viruses to infect a wide range of hosts and cause a disease leading to high fatalities in humans has made them a public health concern,” stated the WHO.
 

Related to measles

The research team identified LayV while monitoring patients at three hospitals in the eastern Chinese provinces of Shandong and Henan between April 2018 and August 2021. Throughout the study period, the researchers found 35 people infected with LayV, mostly farmers, with symptoms ranging from a cough to severe pneumonia. Participants were recruited into the study if they had a fever. The team sequenced the LayV genome from a throat swab taken from the first patient identified with the disease, a 53-year-old woman.

The LayV genome showed that the virus is most closely related to Mojiang henipavirus, which was first isolated in rats in an abandoned mine in the southern Chinese province of Yunnan in 2012. Henipaviruses belong to the Paramyxoviridae family of viruses, which includes measles, mumps, and many respiratory viruses that infect humans. Several other henipaviruses have been discovered in bats, rats, and shrews from Australia to South Korea and China, but only Hendra, Nipah, and now LayV are known to infect people, according to Nature.
 

Animal origin likely

Because most patients stated in a questionnaire that they had been exposed to an animal during the month preceding the onset of their symptoms, the researchers tested goats, dogs, pigs, and cattle living in the villages of infected patients for antibodies against LayV. They found LayV antibodies in a handful of goats and dogs and identified LayV viral RNA in 27% of the 262 sampled shrews. These findings suggest that the shrew may be a natural reservoir of LayV, passing it between themselves “and somehow infecting people here and there by chance,” Emily Gurley, PhD, MPH, an infectious diseases epidemiologist at Johns Hopkins University, Baltimore, told Nature.

The researchers did not find strong evidence of LayV spreading between the people included in the study. There were no clusters of cases in the same family, within a short time span, or in close geographical proximity. “Of the 35 cases, not a single one is linked,” said Dr. Wang, which Dr. Gurley considered good news. It should be noted, however ,”that the study did retrospective contact tracing on only 15 family members of nine infected individuals, which makes it difficult to determine how exactly the individuals were exposed,” reported Nature.
 

Vigilance is needed

Should we be worried about a potential new epidemic? The replies from two experts interviewed by Nature were reassuring. “There is no particular need to worry about this virus, but ongoing surveillance is critical,” said Professor Edward Holmes, an evolutionary virologist at the University of Sydney. Regularly testing people and animals for emerging viruses is important to understand the risk for zoonotic diseases – those that can be transmitted from other animals to humans, he said.

It is still not clear how people were infected in the first place – whether directly from shrews or an intermediate animal, said Dr. Gurley. That’s why a lot of research still needs to be done to work out how the virus is spreading in shrews and how people are getting infected, she added.

Nevertheless, Dr. Gurley finds that large outbreaks of infectious diseases typically take off after a lot of false starts. “If we are actively looking for those sparks, then we are in a much better position to stop or to find something early.” Still, she noted that she didn’t see anything in the data to “cause alarm from a pandemic-threat perspective.”

Though there is not currently any cause for worry of a new pandemic, vigilance is crucial. Professor Holmes says there is an urgent need for a global surveillance system to detect virus spillovers and rapidly communicate those results to avoid more pandemics, such as the one sparked by COVID-19. “These sorts of zoonotic spillover events happen all the time,” he said. “The world needs to wake up.”

This article was translated from the Medscape French edition. A version appeared on Medscape.com.

Between 2018 and August 2022, Chinese researchers identified 35 people infected with a new animal virus in eastern China. These cases were reported in The New England Journal of Medicine. When asked by Nature about this emerging virus that has until now flown under the radar, scientists said that they were not overly concerned because the virus doesn’t seem to spread easily between people nor is it fatal.

Researchers think that the virus is carried by shrews. It might have infected people directly or through an intermediate animal.
 

First identified in Langya

The authors describe 35 cases of infection with a virus called Langya henipavirus (LayV) since 2018. It is closely related to two other henipaviruses known to infect people – Hendra virus and Nipah virus. The virus was named Langya after the town in Shandong province in China where the first patient identified with the disease was from, explained coauthor Linfa Wang, PhD, a virologist at Duke-NUS Medical School, Singapore.

Langya can cause respiratory symptoms such as fever, cough, and fatigue. Hendra virus and Nipah virus also cause respiratory infections and can be fatal, the article in Nature reports.
 

Hendra and Nipah

According to the World Health Organization, Nipah virus, which was discovered in 1999, is a new virus responsible for a zoonosis that causes the disease in animals and humans who have had contact with infected animals. Its name comes from the location where it was first identified in Malaysia. Patients may have asymptomatic infection or symptoms such as acute respiratory infection and severe encephalitis. The case fatality rate is between 40% and 75%.

Nipah virus is closely related to another recently discovered (1994) zoonotic virus called Hendra virus, which is named after the Australian city in which it first appeared. On that day in July 2016, 53 cases were identified involving 70 horses. These incidents remained confined to the northeastern coast of Australia.

Nipah virus and Hendra virus belong to the Paramyxoviridae family. “While the members of this group of viruses are only responsible for a few limited outbreaks, the ability of these viruses to infect a wide range of hosts and cause a disease leading to high fatalities in humans has made them a public health concern,” stated the WHO.
 

Related to measles

The research team identified LayV while monitoring patients at three hospitals in the eastern Chinese provinces of Shandong and Henan between April 2018 and August 2021. Throughout the study period, the researchers found 35 people infected with LayV, mostly farmers, with symptoms ranging from a cough to severe pneumonia. Participants were recruited into the study if they had a fever. The team sequenced the LayV genome from a throat swab taken from the first patient identified with the disease, a 53-year-old woman.

The LayV genome showed that the virus is most closely related to Mojiang henipavirus, which was first isolated in rats in an abandoned mine in the southern Chinese province of Yunnan in 2012. Henipaviruses belong to the Paramyxoviridae family of viruses, which includes measles, mumps, and many respiratory viruses that infect humans. Several other henipaviruses have been discovered in bats, rats, and shrews from Australia to South Korea and China, but only Hendra, Nipah, and now LayV are known to infect people, according to Nature.
 

Animal origin likely

Because most patients stated in a questionnaire that they had been exposed to an animal during the month preceding the onset of their symptoms, the researchers tested goats, dogs, pigs, and cattle living in the villages of infected patients for antibodies against LayV. They found LayV antibodies in a handful of goats and dogs and identified LayV viral RNA in 27% of the 262 sampled shrews. These findings suggest that the shrew may be a natural reservoir of LayV, passing it between themselves “and somehow infecting people here and there by chance,” Emily Gurley, PhD, MPH, an infectious diseases epidemiologist at Johns Hopkins University, Baltimore, told Nature.

The researchers did not find strong evidence of LayV spreading between the people included in the study. There were no clusters of cases in the same family, within a short time span, or in close geographical proximity. “Of the 35 cases, not a single one is linked,” said Dr. Wang, which Dr. Gurley considered good news. It should be noted, however ,”that the study did retrospective contact tracing on only 15 family members of nine infected individuals, which makes it difficult to determine how exactly the individuals were exposed,” reported Nature.
 

Vigilance is needed

Should we be worried about a potential new epidemic? The replies from two experts interviewed by Nature were reassuring. “There is no particular need to worry about this virus, but ongoing surveillance is critical,” said Professor Edward Holmes, an evolutionary virologist at the University of Sydney. Regularly testing people and animals for emerging viruses is important to understand the risk for zoonotic diseases – those that can be transmitted from other animals to humans, he said.

It is still not clear how people were infected in the first place – whether directly from shrews or an intermediate animal, said Dr. Gurley. That’s why a lot of research still needs to be done to work out how the virus is spreading in shrews and how people are getting infected, she added.

Nevertheless, Dr. Gurley finds that large outbreaks of infectious diseases typically take off after a lot of false starts. “If we are actively looking for those sparks, then we are in a much better position to stop or to find something early.” Still, she noted that she didn’t see anything in the data to “cause alarm from a pandemic-threat perspective.”

Though there is not currently any cause for worry of a new pandemic, vigilance is crucial. Professor Holmes says there is an urgent need for a global surveillance system to detect virus spillovers and rapidly communicate those results to avoid more pandemics, such as the one sparked by COVID-19. “These sorts of zoonotic spillover events happen all the time,” he said. “The world needs to wake up.”

This article was translated from the Medscape French edition. A version appeared on Medscape.com.

The wife of a Northern California congressman died late in 2021 after ingesting a plant that is generally considered safe and is used as an herbal remedy for a variety of ailments, including diabetes, obesity, and high cholesterol.

Lori McClintock, the wife of U.S. Rep. Tom McClintock, died from dehydration due to gastroenteritis – an inflammation of the stomach and intestines – that was caused by “adverse effects of white mulberry leaf ingestion,” according to a report from the Sacramento County coroner that is dated March 10 but was not immediately released to the public. KHN obtained that report – in addition to the autopsy report and an amended death certificate containing an updated cause of death – in July.

The coroner’s office ruled her death an accident. The original death certificate, dated Dec. 20, 2021, listed the cause of death as “pending.”

Tom McClintock, a Republican who represents a district that spans multiple counties in northern and central California, found his 61-year-old wife unresponsive at their Elk Grove, Calif., home on Dec. 15, 2021, according to the coroner’s report. He had just returned from Washington after voting in Congress the night before.

It’s unclear from the autopsy report whether Lori McClintock took a dietary supplement containing white mulberry leaf, ate fresh or dried leaves, or drank them in a tea, but a “partially intact” white mulberry leaf was found in her stomach, according to the report.

Ms. McClintock’s death underscores the risks of the vast, booming market of dietary supplements and herbal remedies, which have grown into a $54 billion industry in the United States – one that both lawmakers and health care experts say needs more government scrutiny.

“Many people assume if that product is sold in the United States of America, somebody has inspected it, and it must be safe. Unfortunately, that’s not always true,” U.S. Sen. Richard Durbin (D-Ill.) said on the Senate floor this spring when he introduced legislation to strengthen oversight of dietary supplements.

Daniel Fabricant, CEO and president of the Natural Products Association, which represents the dietary supplements industry, questioned whether Ms. McClintock’s death was related to a supplement.

“It’s completely speculative. There’s a science to this. It’s not just what a coroner feels,” said Mr. Fabricant, who oversaw dietary supplements at the Food and Drug Administration during the Obama administration. “People unfortunately pass from dehydration every day, and there’s a lot of different reasons and a lot of different causes.”

Mr. Fabricant said it would have been ideal had the coroner or the family reported her death to the FDA so the agency could have launched an investigation.

Such reports are voluntary, and it’s not clear whether anyone reported her death to the agency. FDA spokesperson Courtney Rhodes said the agency does not discuss possible or ongoing investigations.

The FDA, Mr. Fabricant added, has a system in place to investigate deaths that might be linked to a supplement or drug. “It’s casework,” he said. “It’s good, old-fashioned police work that needs to be done.”

Tom McClintock has remained mostly silent about his wife’s death since he released a statement on Dec. 19, 2021, announcing it and gave a tribute to her at her Jan. 4 funeral. Until now, the cause of death had not been reported.

Mr. McClintock, contacted multiple times by phone and email Wednesday, was not immediately available for comment.

At his wife’s funeral, McClintock told mourners that she was fine when he spoke with her the day before he returned. She had told a friend that “she was on a roll” at a new job she loved in a Sacramento real estate office, he said, and “she was carefully dieting.”

“She just joined a gym,” he said. “At home, she was counting down the days to Christmas, wrapping all the gifts and making all the plans to make it the best family Christmas ever, and it would have been.”

According to the coroner’s report, however, the day before her death, “she had complaints of an upset stomach.”

Sacramento County spokesperson Kim Nava said via email Wednesday that the law prohibits the coroner’s office from discussing many details of specific cases. As part of any death investigation, the office “attempts to locate and review medical records and speak to family/witnesses to establish events leading up to and surrounding a death,” she said.

If any medications or supplements are found at the scene or if pertinent information is in the person’s medical records, those are passed along to the pathologist to help establish cause of death, Ms. Nava said.

“Any information the office obtains from medical records can’t be disseminated to a third party except by court order,” she said.

The leaves and fruit of the white mulberry tree, which is native to China, have been used for centuries in traditional medicine. Academic studies over the past decade have found that the extract from its leaves can lower blood sugar levels and help with weight loss. People take it in capsule or pill form, as an extract or powder. They can also brew the leaves as an herbal tea.

Lori McClintock’s reaction seems unusual. No deaths from the white mulberry plant have been reported to poison control officials in the past 10 years, according to the American Association of Poison Control Centers.

Since 2012, 148 cases of white mulberry plant ingestion were voluntarily reported to poison control officials nationally, most involving accidental ingestion by children 12 and under, said Kaitlyn Brown, clinical managing director for the association. Only one case required medical follow-up, she said.

While poison control centers track exposures to the white mulberry plant, the FDA oversees dietary supplements, such as products that contain white mulberry leaf extract. Since 2004, two cases of people sickened by mulberry supplements have been reported to the FDA, according to its database that tracks “adverse events.” It relies heavily on voluntary reports from health care professionals and consumers. At least one of those cases led to hospitalization.

White mulberry leaf can have side effects, including nausea and diarrhea, according to research. Independent lab tests ordered by the coroner’s office showed Ms. McClintock’s body had elevated levels of nitrogen, sodium, and creatinine – all signs of dehydration, according to three pathologists who reviewed the coroner’s documents, which KHN redacted to remove Ms. McClintock’s name.

White mulberry leaves “do tend to cause dehydration, and part of the uses for that can be to help someone lose weight, mostly through fluid loss, which in this case was just kind of excessive,” said D’Michelle DuPre, MD, a retired forensic pathologist and a former medical examiner in South Carolina who reviewed the documents.

Dietary supplements, which include a broad range of vitamins, herbs, and minerals, are regulated by the FDA. However, they are classified as food and don’t undergo the rigorous scientific and safety testing the government requires of prescription drugs and over-the-counter medicines.

Lawmakers aren’t proposing to put supplements into the same category as pharmaceuticals, but some say they are alarmed that neither the FDA nor the industry knows how many dietary supplements are out there – making it almost impossible for the government to oversee them and punish bad actors.

The FDA estimates 40,000 to 80,000 supplement products are on the market in the United States, and industry surveys estimate 80% of Americans use them.

Legislation by Sen. Durbin and U.S. Sen. Mike Braun (R-Ind.) would require manufacturers to register with the FDA and provide a public list of ingredients in their products, two provisions that are backed by the Council for Responsible Nutrition, another industry group that represents supplement makers.

But the council is lobbying against a provision that would require supplement makers to provide consumers with the ingredient amounts – or the blend – in their products, something they say is akin to giving a recipe to competitors. That’s proprietary information only government regulators should have access to, said Megan Olsen, the group’s senior vice president and general counsel.

Ms. Olsen explained that supplement manufacturers are regulated just like other food companies and are subject to strict labeling requirements and inspections by the FDA. They also must inform the agency about any adverse effects reported by consumers or doctors.

“Companies are testing products throughout the process, are reviewing how they’re being manufactured and what’s going into them,” Ms. Olsen said. “All of that is overseen and dictated by FDA regulation.”

The dietary supplement provisions were rolled into a larger Senate health committee bill that reauthorizes FDA programs, and senators are currently in negotiations with the House of Representatives. The Natural Products Association opposes all of the dietary supplement provisions.

Because dietary pills, teas, and other supplements are regulated as food products, manufacturers can’t advertise them as treatments or cures for health issues. But they can make claims about how the supplements affect the body. So someone who wants to lose weight or get their diabetes under control might reach for a bottle of white mulberry leaf extract because some supplement makers advertise it as a natural remedy that can lower blood sugar levels and promote weight loss.

Those kinds of claims are appealing to Americans and have been especially potent during the pandemic, as people sought to boost their immune systems and fend off COVID-19, said Debbie Petitpain, a registered dietitian nutritionist and a spokesperson for the Academy of Nutrition and Dietetics.

But dietary supplements can be dangerous and don’t affect everyone the same way. Mixing supplements and prescription medicines can compound the problem, according to the FDA.

“I think a lot of people are thinking, ‘Oh, it’s a plant.’ Or, ‘Oh, it’s just a vitamin. Certainly, that means that it’s not going to hurt me,’ ” Ms. Petitpain said. “But there’s always a risk for taking anything.”

It’s not clear why Lori McClintock was taking white mulberry leaf. Friends and family who gathered for her funeral described a vibrant, happy woman who loved her family and her work and already had wrapped Christmas presents under the tree in mid-December. She was planning to buy a recreational vehicle with her husband in retirement.

“We grieve the loss because of all the things she was looking forward to doing and all the years yet ahead,” Tom McClintock told mourners. “And we grieve for something else, because we’ve all lost a genuinely good person in our lives.”
 

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

The wife of a Northern California congressman died late in 2021 after ingesting a plant that is generally considered safe and is used as an herbal remedy for a variety of ailments, including diabetes, obesity, and high cholesterol.

Lori McClintock, the wife of U.S. Rep. Tom McClintock, died from dehydration due to gastroenteritis – an inflammation of the stomach and intestines – that was caused by “adverse effects of white mulberry leaf ingestion,” according to a report from the Sacramento County coroner that is dated March 10 but was not immediately released to the public. KHN obtained that report – in addition to the autopsy report and an amended death certificate containing an updated cause of death – in July.

The coroner’s office ruled her death an accident. The original death certificate, dated Dec. 20, 2021, listed the cause of death as “pending.”

Tom McClintock, a Republican who represents a district that spans multiple counties in northern and central California, found his 61-year-old wife unresponsive at their Elk Grove, Calif., home on Dec. 15, 2021, according to the coroner’s report. He had just returned from Washington after voting in Congress the night before.

It’s unclear from the autopsy report whether Lori McClintock took a dietary supplement containing white mulberry leaf, ate fresh or dried leaves, or drank them in a tea, but a “partially intact” white mulberry leaf was found in her stomach, according to the report.

Ms. McClintock’s death underscores the risks of the vast, booming market of dietary supplements and herbal remedies, which have grown into a $54 billion industry in the United States – one that both lawmakers and health care experts say needs more government scrutiny.

“Many people assume if that product is sold in the United States of America, somebody has inspected it, and it must be safe. Unfortunately, that’s not always true,” U.S. Sen. Richard Durbin (D-Ill.) said on the Senate floor this spring when he introduced legislation to strengthen oversight of dietary supplements.

Daniel Fabricant, CEO and president of the Natural Products Association, which represents the dietary supplements industry, questioned whether Ms. McClintock’s death was related to a supplement.

“It’s completely speculative. There’s a science to this. It’s not just what a coroner feels,” said Mr. Fabricant, who oversaw dietary supplements at the Food and Drug Administration during the Obama administration. “People unfortunately pass from dehydration every day, and there’s a lot of different reasons and a lot of different causes.”

Mr. Fabricant said it would have been ideal had the coroner or the family reported her death to the FDA so the agency could have launched an investigation.

Such reports are voluntary, and it’s not clear whether anyone reported her death to the agency. FDA spokesperson Courtney Rhodes said the agency does not discuss possible or ongoing investigations.

The FDA, Mr. Fabricant added, has a system in place to investigate deaths that might be linked to a supplement or drug. “It’s casework,” he said. “It’s good, old-fashioned police work that needs to be done.”

Tom McClintock has remained mostly silent about his wife’s death since he released a statement on Dec. 19, 2021, announcing it and gave a tribute to her at her Jan. 4 funeral. Until now, the cause of death had not been reported.

Mr. McClintock, contacted multiple times by phone and email Wednesday, was not immediately available for comment.

At his wife’s funeral, McClintock told mourners that she was fine when he spoke with her the day before he returned. She had told a friend that “she was on a roll” at a new job she loved in a Sacramento real estate office, he said, and “she was carefully dieting.”

“She just joined a gym,” he said. “At home, she was counting down the days to Christmas, wrapping all the gifts and making all the plans to make it the best family Christmas ever, and it would have been.”

According to the coroner’s report, however, the day before her death, “she had complaints of an upset stomach.”

Sacramento County spokesperson Kim Nava said via email Wednesday that the law prohibits the coroner’s office from discussing many details of specific cases. As part of any death investigation, the office “attempts to locate and review medical records and speak to family/witnesses to establish events leading up to and surrounding a death,” she said.

If any medications or supplements are found at the scene or if pertinent information is in the person’s medical records, those are passed along to the pathologist to help establish cause of death, Ms. Nava said.

“Any information the office obtains from medical records can’t be disseminated to a third party except by court order,” she said.

The leaves and fruit of the white mulberry tree, which is native to China, have been used for centuries in traditional medicine. Academic studies over the past decade have found that the extract from its leaves can lower blood sugar levels and help with weight loss. People take it in capsule or pill form, as an extract or powder. They can also brew the leaves as an herbal tea.

Lori McClintock’s reaction seems unusual. No deaths from the white mulberry plant have been reported to poison control officials in the past 10 years, according to the American Association of Poison Control Centers.

Since 2012, 148 cases of white mulberry plant ingestion were voluntarily reported to poison control officials nationally, most involving accidental ingestion by children 12 and under, said Kaitlyn Brown, clinical managing director for the association. Only one case required medical follow-up, she said.

While poison control centers track exposures to the white mulberry plant, the FDA oversees dietary supplements, such as products that contain white mulberry leaf extract. Since 2004, two cases of people sickened by mulberry supplements have been reported to the FDA, according to its database that tracks “adverse events.” It relies heavily on voluntary reports from health care professionals and consumers. At least one of those cases led to hospitalization.

White mulberry leaf can have side effects, including nausea and diarrhea, according to research. Independent lab tests ordered by the coroner’s office showed Ms. McClintock’s body had elevated levels of nitrogen, sodium, and creatinine – all signs of dehydration, according to three pathologists who reviewed the coroner’s documents, which KHN redacted to remove Ms. McClintock’s name.

White mulberry leaves “do tend to cause dehydration, and part of the uses for that can be to help someone lose weight, mostly through fluid loss, which in this case was just kind of excessive,” said D’Michelle DuPre, MD, a retired forensic pathologist and a former medical examiner in South Carolina who reviewed the documents.

Dietary supplements, which include a broad range of vitamins, herbs, and minerals, are regulated by the FDA. However, they are classified as food and don’t undergo the rigorous scientific and safety testing the government requires of prescription drugs and over-the-counter medicines.

Lawmakers aren’t proposing to put supplements into the same category as pharmaceuticals, but some say they are alarmed that neither the FDA nor the industry knows how many dietary supplements are out there – making it almost impossible for the government to oversee them and punish bad actors.

The FDA estimates 40,000 to 80,000 supplement products are on the market in the United States, and industry surveys estimate 80% of Americans use them.

Legislation by Sen. Durbin and U.S. Sen. Mike Braun (R-Ind.) would require manufacturers to register with the FDA and provide a public list of ingredients in their products, two provisions that are backed by the Council for Responsible Nutrition, another industry group that represents supplement makers.

But the council is lobbying against a provision that would require supplement makers to provide consumers with the ingredient amounts – or the blend – in their products, something they say is akin to giving a recipe to competitors. That’s proprietary information only government regulators should have access to, said Megan Olsen, the group’s senior vice president and general counsel.

Ms. Olsen explained that supplement manufacturers are regulated just like other food companies and are subject to strict labeling requirements and inspections by the FDA. They also must inform the agency about any adverse effects reported by consumers or doctors.

“Companies are testing products throughout the process, are reviewing how they’re being manufactured and what’s going into them,” Ms. Olsen said. “All of that is overseen and dictated by FDA regulation.”

The dietary supplement provisions were rolled into a larger Senate health committee bill that reauthorizes FDA programs, and senators are currently in negotiations with the House of Representatives. The Natural Products Association opposes all of the dietary supplement provisions.

Because dietary pills, teas, and other supplements are regulated as food products, manufacturers can’t advertise them as treatments or cures for health issues. But they can make claims about how the supplements affect the body. So someone who wants to lose weight or get their diabetes under control might reach for a bottle of white mulberry leaf extract because some supplement makers advertise it as a natural remedy that can lower blood sugar levels and promote weight loss.

Those kinds of claims are appealing to Americans and have been especially potent during the pandemic, as people sought to boost their immune systems and fend off COVID-19, said Debbie Petitpain, a registered dietitian nutritionist and a spokesperson for the Academy of Nutrition and Dietetics.

But dietary supplements can be dangerous and don’t affect everyone the same way. Mixing supplements and prescription medicines can compound the problem, according to the FDA.

“I think a lot of people are thinking, ‘Oh, it’s a plant.’ Or, ‘Oh, it’s just a vitamin. Certainly, that means that it’s not going to hurt me,’ ” Ms. Petitpain said. “But there’s always a risk for taking anything.”

It’s not clear why Lori McClintock was taking white mulberry leaf. Friends and family who gathered for her funeral described a vibrant, happy woman who loved her family and her work and already had wrapped Christmas presents under the tree in mid-December. She was planning to buy a recreational vehicle with her husband in retirement.

“We grieve the loss because of all the things she was looking forward to doing and all the years yet ahead,” Tom McClintock told mourners. “And we grieve for something else, because we’ve all lost a genuinely good person in our lives.”
 

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

The wife of a Northern California congressman died late in 2021 after ingesting a plant that is generally considered safe and is used as an herbal remedy for a variety of ailments, including diabetes, obesity, and high cholesterol.

Lori McClintock, the wife of U.S. Rep. Tom McClintock, died from dehydration due to gastroenteritis – an inflammation of the stomach and intestines – that was caused by “adverse effects of white mulberry leaf ingestion,” according to a report from the Sacramento County coroner that is dated March 10 but was not immediately released to the public. KHN obtained that report – in addition to the autopsy report and an amended death certificate containing an updated cause of death – in July.

The coroner’s office ruled her death an accident. The original death certificate, dated Dec. 20, 2021, listed the cause of death as “pending.”

Tom McClintock, a Republican who represents a district that spans multiple counties in northern and central California, found his 61-year-old wife unresponsive at their Elk Grove, Calif., home on Dec. 15, 2021, according to the coroner’s report. He had just returned from Washington after voting in Congress the night before.

It’s unclear from the autopsy report whether Lori McClintock took a dietary supplement containing white mulberry leaf, ate fresh or dried leaves, or drank them in a tea, but a “partially intact” white mulberry leaf was found in her stomach, according to the report.

Ms. McClintock’s death underscores the risks of the vast, booming market of dietary supplements and herbal remedies, which have grown into a $54 billion industry in the United States – one that both lawmakers and health care experts say needs more government scrutiny.

“Many people assume if that product is sold in the United States of America, somebody has inspected it, and it must be safe. Unfortunately, that’s not always true,” U.S. Sen. Richard Durbin (D-Ill.) said on the Senate floor this spring when he introduced legislation to strengthen oversight of dietary supplements.

Daniel Fabricant, CEO and president of the Natural Products Association, which represents the dietary supplements industry, questioned whether Ms. McClintock’s death was related to a supplement.

“It’s completely speculative. There’s a science to this. It’s not just what a coroner feels,” said Mr. Fabricant, who oversaw dietary supplements at the Food and Drug Administration during the Obama administration. “People unfortunately pass from dehydration every day, and there’s a lot of different reasons and a lot of different causes.”

Mr. Fabricant said it would have been ideal had the coroner or the family reported her death to the FDA so the agency could have launched an investigation.

Such reports are voluntary, and it’s not clear whether anyone reported her death to the agency. FDA spokesperson Courtney Rhodes said the agency does not discuss possible or ongoing investigations.

The FDA, Mr. Fabricant added, has a system in place to investigate deaths that might be linked to a supplement or drug. “It’s casework,” he said. “It’s good, old-fashioned police work that needs to be done.”

Tom McClintock has remained mostly silent about his wife’s death since he released a statement on Dec. 19, 2021, announcing it and gave a tribute to her at her Jan. 4 funeral. Until now, the cause of death had not been reported.

Mr. McClintock, contacted multiple times by phone and email Wednesday, was not immediately available for comment.

At his wife’s funeral, McClintock told mourners that she was fine when he spoke with her the day before he returned. She had told a friend that “she was on a roll” at a new job she loved in a Sacramento real estate office, he said, and “she was carefully dieting.”

“She just joined a gym,” he said. “At home, she was counting down the days to Christmas, wrapping all the gifts and making all the plans to make it the best family Christmas ever, and it would have been.”

According to the coroner’s report, however, the day before her death, “she had complaints of an upset stomach.”

Sacramento County spokesperson Kim Nava said via email Wednesday that the law prohibits the coroner’s office from discussing many details of specific cases. As part of any death investigation, the office “attempts to locate and review medical records and speak to family/witnesses to establish events leading up to and surrounding a death,” she said.

If any medications or supplements are found at the scene or if pertinent information is in the person’s medical records, those are passed along to the pathologist to help establish cause of death, Ms. Nava said.

“Any information the office obtains from medical records can’t be disseminated to a third party except by court order,” she said.

The leaves and fruit of the white mulberry tree, which is native to China, have been used for centuries in traditional medicine. Academic studies over the past decade have found that the extract from its leaves can lower blood sugar levels and help with weight loss. People take it in capsule or pill form, as an extract or powder. They can also brew the leaves as an herbal tea.

Lori McClintock’s reaction seems unusual. No deaths from the white mulberry plant have been reported to poison control officials in the past 10 years, according to the American Association of Poison Control Centers.

Since 2012, 148 cases of white mulberry plant ingestion were voluntarily reported to poison control officials nationally, most involving accidental ingestion by children 12 and under, said Kaitlyn Brown, clinical managing director for the association. Only one case required medical follow-up, she said.

While poison control centers track exposures to the white mulberry plant, the FDA oversees dietary supplements, such as products that contain white mulberry leaf extract. Since 2004, two cases of people sickened by mulberry supplements have been reported to the FDA, according to its database that tracks “adverse events.” It relies heavily on voluntary reports from health care professionals and consumers. At least one of those cases led to hospitalization.

White mulberry leaf can have side effects, including nausea and diarrhea, according to research. Independent lab tests ordered by the coroner’s office showed Ms. McClintock’s body had elevated levels of nitrogen, sodium, and creatinine – all signs of dehydration, according to three pathologists who reviewed the coroner’s documents, which KHN redacted to remove Ms. McClintock’s name.

White mulberry leaves “do tend to cause dehydration, and part of the uses for that can be to help someone lose weight, mostly through fluid loss, which in this case was just kind of excessive,” said D’Michelle DuPre, MD, a retired forensic pathologist and a former medical examiner in South Carolina who reviewed the documents.

Dietary supplements, which include a broad range of vitamins, herbs, and minerals, are regulated by the FDA. However, they are classified as food and don’t undergo the rigorous scientific and safety testing the government requires of prescription drugs and over-the-counter medicines.

Lawmakers aren’t proposing to put supplements into the same category as pharmaceuticals, but some say they are alarmed that neither the FDA nor the industry knows how many dietary supplements are out there – making it almost impossible for the government to oversee them and punish bad actors.

The FDA estimates 40,000 to 80,000 supplement products are on the market in the United States, and industry surveys estimate 80% of Americans use them.

Legislation by Sen. Durbin and U.S. Sen. Mike Braun (R-Ind.) would require manufacturers to register with the FDA and provide a public list of ingredients in their products, two provisions that are backed by the Council for Responsible Nutrition, another industry group that represents supplement makers.

But the council is lobbying against a provision that would require supplement makers to provide consumers with the ingredient amounts – or the blend – in their products, something they say is akin to giving a recipe to competitors. That’s proprietary information only government regulators should have access to, said Megan Olsen, the group’s senior vice president and general counsel.

Ms. Olsen explained that supplement manufacturers are regulated just like other food companies and are subject to strict labeling requirements and inspections by the FDA. They also must inform the agency about any adverse effects reported by consumers or doctors.

“Companies are testing products throughout the process, are reviewing how they’re being manufactured and what’s going into them,” Ms. Olsen said. “All of that is overseen and dictated by FDA regulation.”

The dietary supplement provisions were rolled into a larger Senate health committee bill that reauthorizes FDA programs, and senators are currently in negotiations with the House of Representatives. The Natural Products Association opposes all of the dietary supplement provisions.

Because dietary pills, teas, and other supplements are regulated as food products, manufacturers can’t advertise them as treatments or cures for health issues. But they can make claims about how the supplements affect the body. So someone who wants to lose weight or get their diabetes under control might reach for a bottle of white mulberry leaf extract because some supplement makers advertise it as a natural remedy that can lower blood sugar levels and promote weight loss.

Those kinds of claims are appealing to Americans and have been especially potent during the pandemic, as people sought to boost their immune systems and fend off COVID-19, said Debbie Petitpain, a registered dietitian nutritionist and a spokesperson for the Academy of Nutrition and Dietetics.

But dietary supplements can be dangerous and don’t affect everyone the same way. Mixing supplements and prescription medicines can compound the problem, according to the FDA.

“I think a lot of people are thinking, ‘Oh, it’s a plant.’ Or, ‘Oh, it’s just a vitamin. Certainly, that means that it’s not going to hurt me,’ ” Ms. Petitpain said. “But there’s always a risk for taking anything.”

It’s not clear why Lori McClintock was taking white mulberry leaf. Friends and family who gathered for her funeral described a vibrant, happy woman who loved her family and her work and already had wrapped Christmas presents under the tree in mid-December. She was planning to buy a recreational vehicle with her husband in retirement.

“We grieve the loss because of all the things she was looking forward to doing and all the years yet ahead,” Tom McClintock told mourners. “And we grieve for something else, because we’ve all lost a genuinely good person in our lives.”
 

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

When Jaime Seltzer first heard about a new virus that was spreading globally early in 2020, she was on full alert. As an advocate for the post-viral condition known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), she worried about a new wave of people having long-term disabilities.

“The hair on my arms stood on end,” said Ms. Seltzer, director of scientific and medical outreach at the advocacy group MEAction and a consultant researcher at Stanford University.

If the percentage of people with COVID-19 who go on to have long-term symptoms “similar to what has been seen for other pathogens, then we’re looking at a mass disabling event,” Ms. Seltzer, who has had ME/CFS herself, said she wondered.

Sure enough, later in 2020, reports began emerging about people with extreme fatigue, postexertion crashes, brain fog, unrefreshing sleep, and dizziness when standing up months after a bout with the then-new viral illness. Those same symptoms had been designated as “core criteria” of ME/CFS by the National Academy of Medicine in a 2015 report.

Now, advocates like Ms. Seltzer are hoping the research and medical communities will give ME/CFS and other postviral illnesses the same attention they have increasingly focused on long COVID.

The emergence of long COVID was no surprise to researchers who study ME/CFS, because the same set of symptoms has arisen after many other viruses.

“This for all the world looks like ME/CFS. We think they are frighteningly similar, if not identical,” said David M. Systrom, MD, a pulmonary and critical care medicine specialist at Brigham and Women’s Hospital in Boston, who studies people with both diagnoses.

The actual numbers are hard to determine, since many people who meet ME/CFS criteria aren’t formally diagnosed. But a combined analysis of data from several studies published in March found that about one in three people had fatigue and about one in five reported having a hard time with thinking and memory 12 or more weeks after they had COVID-19.

According to some estimates, about half of people with long COVID will meet the criteria for ME/CFS, whether they’re given that specific diagnosis or not.

Other conditions that often exist with ME/CFS are also being seen in people with long COVID, including postural orthostatic tachycardia syndrome, which causes people to feel dizzy when they stand, along with other symptoms; other problems with the autonomic nervous system, which controls body systems such as heart rate, blood pressure, and digestion, known together as dysautonomia; and a condition related to allergies called mast cell activation disorder.

Post–acute infection syndromes have been linked to a long list of viruses, including Ebola, the 2003-2004 SARS virus, and Epstein-Barr – the virus most commonly associated with ME/CFS.

The problem in clinical medicine is that once an infection has cleared, the teaching has been that the person should no longer feel sick, said Nancy G. Klimas, MD, director of the Institute for Neuro-Immune Medicine at Nova Southeastern University in Miami. “I was taught that there has to be an antigen [such as a viral protein] in the system to drive the immune system to make it create sickness, and the immune system should shut off when it’s done,” she said.

Thus, if virus is gone and other routine lab tests come up negative, doctors often deem the person’s reported symptoms to be psychological, which can upset patients, Anthony Komaroff, MD, of Brigham and Women’s Hospital in Boston, wrote in July 2021.

Only recently have doctors started to appreciate the idea that the immune system may be overreacting long term, Dr. Klimas said.

Now, long COVID appears to be speeding up that recognition. Dr. Systrom said he has “absolutely” seen a change in attitude among fellow doctors who had been skeptical of ME/CFS as a “real” illness because there’s no test for it.

“I’m very keenly aware of a large group of health care professionals who really had not bought into the concept of ME/CFS as a real disease who have had an epiphany of sorts with long COVID and now, in a backwards way, have applied that same thinking to their very same patients with ME/CFS,” he said.
 

Science showing ‘frighteningly similar’ symptoms

Dr. Systrom has spent several years researching how ME/CFS patients cannot tolerate exercise and now is doing similar studies in people with long COVID. “Several months into the pandemic, we began receiving reports of patients who had survived COVID and maybe even had a relatively mild disease ... and as the summer of 2020 moved into the fall, it became apparent that there was a subset of patients who for all the world appeared to meet ME/CFS clinical criteria,” he said.

Using bicycle exercise tests on long COVID patients with catheters placed in their veins, Dr. Systrom and associates have shown a lack of exercise capacity that isn’t caused by heart or lung disease but instead is related to abnormal nerves and blood vessels, just as they’d shown previously in ME/CFS patient.

Avindra Nath, MD, senior investigator and clinical director of intramural research at the National Institute of Neurological Disorders and Stroke, Bethesda, Md., was doing a deep-dive scientific study on ME/CFS when the COVID-19 pandemic hit. Since then, he›s begun another study using the same protocol and sophisticated laboratory measurement to evaluate people with long COVID.

“As terrible as [long COVID] is, it’s kind of a blessing in disguise for ME/CFS because there’s just so much overlap between the two and they could very well be in many ways one in the same thing. The problem with studying ME/CFS is oftentimes you didn’t know what the trigger was. You see patients many years later, then try to backtrack and find out what happened,” said Dr. Nath, a neuroimmunologist.

With long COVID, on the other hand, “we know when they got infected and when their symptoms actually started, so it becomes much more uniform. ... It gives us an opportunity to maybe solve certain things in a much more well-defined population and try to find answers.”

Advocacy groups want to see more.

In February 2021, Solve M.E. launched the Long COVID Alliance, made up of several organizations, companies, and people with a goal to influence policy and speed up research into a range of postviral illnesses.

Solve M.E. has also pushed for inclusion of language regarding ME/CFS and related conditions into congressional bills addressing long COVID, including those that call for funding of research and clinical care.

“On the political front, we’ve really capitalized on a moment in time in which we have the spotlight,” said Emily Taylor, vice president of advocacy and engagement for Solve M.E.

“One of the hardest parts about ME/CFS is how to show that it’s real when it’s invisible. Most people agree that COVID is real and therefore if somebody gets ME/CFS after COVID, it’s real,” she said.

The advocacy groups are now pushing for non-COVID postinfection illnesses to be included in efforts aimed at helping people with long COVID, with mixed results. For example, the RECOVER Initiative, established in February 2021 with $1.5 billion in funding from Congress to the National Institutes of Health, is specifically for studying long COVID and does not fund research into other postinfection illnesses, although representatives from the ME/CFS community are advisers.

Language addressing ME/CFS and other postinfectious chronic illnesses has been included in several long COVID bills now pending in Congress, including the Care for Long COVID Act in the Senate and its companion COVID-19 Long Haulers Act in the House. “Our goal is to push for passage of a long COVID bill by the end of the year,” Ms. Taylor said.

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

When Jaime Seltzer first heard about a new virus that was spreading globally early in 2020, she was on full alert. As an advocate for the post-viral condition known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), she worried about a new wave of people having long-term disabilities.

“The hair on my arms stood on end,” said Ms. Seltzer, director of scientific and medical outreach at the advocacy group MEAction and a consultant researcher at Stanford University.

If the percentage of people with COVID-19 who go on to have long-term symptoms “similar to what has been seen for other pathogens, then we’re looking at a mass disabling event,” Ms. Seltzer, who has had ME/CFS herself, said she wondered.

Sure enough, later in 2020, reports began emerging about people with extreme fatigue, postexertion crashes, brain fog, unrefreshing sleep, and dizziness when standing up months after a bout with the then-new viral illness. Those same symptoms had been designated as “core criteria” of ME/CFS by the National Academy of Medicine in a 2015 report.

Now, advocates like Ms. Seltzer are hoping the research and medical communities will give ME/CFS and other postviral illnesses the same attention they have increasingly focused on long COVID.

The emergence of long COVID was no surprise to researchers who study ME/CFS, because the same set of symptoms has arisen after many other viruses.

“This for all the world looks like ME/CFS. We think they are frighteningly similar, if not identical,” said David M. Systrom, MD, a pulmonary and critical care medicine specialist at Brigham and Women’s Hospital in Boston, who studies people with both diagnoses.

The actual numbers are hard to determine, since many people who meet ME/CFS criteria aren’t formally diagnosed. But a combined analysis of data from several studies published in March found that about one in three people had fatigue and about one in five reported having a hard time with thinking and memory 12 or more weeks after they had COVID-19.

According to some estimates, about half of people with long COVID will meet the criteria for ME/CFS, whether they’re given that specific diagnosis or not.

Other conditions that often exist with ME/CFS are also being seen in people with long COVID, including postural orthostatic tachycardia syndrome, which causes people to feel dizzy when they stand, along with other symptoms; other problems with the autonomic nervous system, which controls body systems such as heart rate, blood pressure, and digestion, known together as dysautonomia; and a condition related to allergies called mast cell activation disorder.

Post–acute infection syndromes have been linked to a long list of viruses, including Ebola, the 2003-2004 SARS virus, and Epstein-Barr – the virus most commonly associated with ME/CFS.

The problem in clinical medicine is that once an infection has cleared, the teaching has been that the person should no longer feel sick, said Nancy G. Klimas, MD, director of the Institute for Neuro-Immune Medicine at Nova Southeastern University in Miami. “I was taught that there has to be an antigen [such as a viral protein] in the system to drive the immune system to make it create sickness, and the immune system should shut off when it’s done,” she said.

Thus, if virus is gone and other routine lab tests come up negative, doctors often deem the person’s reported symptoms to be psychological, which can upset patients, Anthony Komaroff, MD, of Brigham and Women’s Hospital in Boston, wrote in July 2021.

Only recently have doctors started to appreciate the idea that the immune system may be overreacting long term, Dr. Klimas said.

Now, long COVID appears to be speeding up that recognition. Dr. Systrom said he has “absolutely” seen a change in attitude among fellow doctors who had been skeptical of ME/CFS as a “real” illness because there’s no test for it.

“I’m very keenly aware of a large group of health care professionals who really had not bought into the concept of ME/CFS as a real disease who have had an epiphany of sorts with long COVID and now, in a backwards way, have applied that same thinking to their very same patients with ME/CFS,” he said.
 

Science showing ‘frighteningly similar’ symptoms

Dr. Systrom has spent several years researching how ME/CFS patients cannot tolerate exercise and now is doing similar studies in people with long COVID. “Several months into the pandemic, we began receiving reports of patients who had survived COVID and maybe even had a relatively mild disease ... and as the summer of 2020 moved into the fall, it became apparent that there was a subset of patients who for all the world appeared to meet ME/CFS clinical criteria,” he said.

Using bicycle exercise tests on long COVID patients with catheters placed in their veins, Dr. Systrom and associates have shown a lack of exercise capacity that isn’t caused by heart or lung disease but instead is related to abnormal nerves and blood vessels, just as they’d shown previously in ME/CFS patient.

Avindra Nath, MD, senior investigator and clinical director of intramural research at the National Institute of Neurological Disorders and Stroke, Bethesda, Md., was doing a deep-dive scientific study on ME/CFS when the COVID-19 pandemic hit. Since then, he›s begun another study using the same protocol and sophisticated laboratory measurement to evaluate people with long COVID.

“As terrible as [long COVID] is, it’s kind of a blessing in disguise for ME/CFS because there’s just so much overlap between the two and they could very well be in many ways one in the same thing. The problem with studying ME/CFS is oftentimes you didn’t know what the trigger was. You see patients many years later, then try to backtrack and find out what happened,” said Dr. Nath, a neuroimmunologist.

With long COVID, on the other hand, “we know when they got infected and when their symptoms actually started, so it becomes much more uniform. ... It gives us an opportunity to maybe solve certain things in a much more well-defined population and try to find answers.”

Advocacy groups want to see more.

In February 2021, Solve M.E. launched the Long COVID Alliance, made up of several organizations, companies, and people with a goal to influence policy and speed up research into a range of postviral illnesses.

Solve M.E. has also pushed for inclusion of language regarding ME/CFS and related conditions into congressional bills addressing long COVID, including those that call for funding of research and clinical care.

“On the political front, we’ve really capitalized on a moment in time in which we have the spotlight,” said Emily Taylor, vice president of advocacy and engagement for Solve M.E.

“One of the hardest parts about ME/CFS is how to show that it’s real when it’s invisible. Most people agree that COVID is real and therefore if somebody gets ME/CFS after COVID, it’s real,” she said.

The advocacy groups are now pushing for non-COVID postinfection illnesses to be included in efforts aimed at helping people with long COVID, with mixed results. For example, the RECOVER Initiative, established in February 2021 with $1.5 billion in funding from Congress to the National Institutes of Health, is specifically for studying long COVID and does not fund research into other postinfection illnesses, although representatives from the ME/CFS community are advisers.

Language addressing ME/CFS and other postinfectious chronic illnesses has been included in several long COVID bills now pending in Congress, including the Care for Long COVID Act in the Senate and its companion COVID-19 Long Haulers Act in the House. “Our goal is to push for passage of a long COVID bill by the end of the year,” Ms. Taylor said.

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

When Jaime Seltzer first heard about a new virus that was spreading globally early in 2020, she was on full alert. As an advocate for the post-viral condition known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), she worried about a new wave of people having long-term disabilities.

“The hair on my arms stood on end,” said Ms. Seltzer, director of scientific and medical outreach at the advocacy group MEAction and a consultant researcher at Stanford University.

If the percentage of people with COVID-19 who go on to have long-term symptoms “similar to what has been seen for other pathogens, then we’re looking at a mass disabling event,” Ms. Seltzer, who has had ME/CFS herself, said she wondered.

Sure enough, later in 2020, reports began emerging about people with extreme fatigue, postexertion crashes, brain fog, unrefreshing sleep, and dizziness when standing up months after a bout with the then-new viral illness. Those same symptoms had been designated as “core criteria” of ME/CFS by the National Academy of Medicine in a 2015 report.

Now, advocates like Ms. Seltzer are hoping the research and medical communities will give ME/CFS and other postviral illnesses the same attention they have increasingly focused on long COVID.

The emergence of long COVID was no surprise to researchers who study ME/CFS, because the same set of symptoms has arisen after many other viruses.

“This for all the world looks like ME/CFS. We think they are frighteningly similar, if not identical,” said David M. Systrom, MD, a pulmonary and critical care medicine specialist at Brigham and Women’s Hospital in Boston, who studies people with both diagnoses.

The actual numbers are hard to determine, since many people who meet ME/CFS criteria aren’t formally diagnosed. But a combined analysis of data from several studies published in March found that about one in three people had fatigue and about one in five reported having a hard time with thinking and memory 12 or more weeks after they had COVID-19.

According to some estimates, about half of people with long COVID will meet the criteria for ME/CFS, whether they’re given that specific diagnosis or not.

Other conditions that often exist with ME/CFS are also being seen in people with long COVID, including postural orthostatic tachycardia syndrome, which causes people to feel dizzy when they stand, along with other symptoms; other problems with the autonomic nervous system, which controls body systems such as heart rate, blood pressure, and digestion, known together as dysautonomia; and a condition related to allergies called mast cell activation disorder.

Post–acute infection syndromes have been linked to a long list of viruses, including Ebola, the 2003-2004 SARS virus, and Epstein-Barr – the virus most commonly associated with ME/CFS.

The problem in clinical medicine is that once an infection has cleared, the teaching has been that the person should no longer feel sick, said Nancy G. Klimas, MD, director of the Institute for Neuro-Immune Medicine at Nova Southeastern University in Miami. “I was taught that there has to be an antigen [such as a viral protein] in the system to drive the immune system to make it create sickness, and the immune system should shut off when it’s done,” she said.

Thus, if virus is gone and other routine lab tests come up negative, doctors often deem the person’s reported symptoms to be psychological, which can upset patients, Anthony Komaroff, MD, of Brigham and Women’s Hospital in Boston, wrote in July 2021.

Only recently have doctors started to appreciate the idea that the immune system may be overreacting long term, Dr. Klimas said.

Now, long COVID appears to be speeding up that recognition. Dr. Systrom said he has “absolutely” seen a change in attitude among fellow doctors who had been skeptical of ME/CFS as a “real” illness because there’s no test for it.

“I’m very keenly aware of a large group of health care professionals who really had not bought into the concept of ME/CFS as a real disease who have had an epiphany of sorts with long COVID and now, in a backwards way, have applied that same thinking to their very same patients with ME/CFS,” he said.
 

Science showing ‘frighteningly similar’ symptoms

Dr. Systrom has spent several years researching how ME/CFS patients cannot tolerate exercise and now is doing similar studies in people with long COVID. “Several months into the pandemic, we began receiving reports of patients who had survived COVID and maybe even had a relatively mild disease ... and as the summer of 2020 moved into the fall, it became apparent that there was a subset of patients who for all the world appeared to meet ME/CFS clinical criteria,” he said.

Using bicycle exercise tests on long COVID patients with catheters placed in their veins, Dr. Systrom and associates have shown a lack of exercise capacity that isn’t caused by heart or lung disease but instead is related to abnormal nerves and blood vessels, just as they’d shown previously in ME/CFS patient.

Avindra Nath, MD, senior investigator and clinical director of intramural research at the National Institute of Neurological Disorders and Stroke, Bethesda, Md., was doing a deep-dive scientific study on ME/CFS when the COVID-19 pandemic hit. Since then, he›s begun another study using the same protocol and sophisticated laboratory measurement to evaluate people with long COVID.

“As terrible as [long COVID] is, it’s kind of a blessing in disguise for ME/CFS because there’s just so much overlap between the two and they could very well be in many ways one in the same thing. The problem with studying ME/CFS is oftentimes you didn’t know what the trigger was. You see patients many years later, then try to backtrack and find out what happened,” said Dr. Nath, a neuroimmunologist.

With long COVID, on the other hand, “we know when they got infected and when their symptoms actually started, so it becomes much more uniform. ... It gives us an opportunity to maybe solve certain things in a much more well-defined population and try to find answers.”

Advocacy groups want to see more.

In February 2021, Solve M.E. launched the Long COVID Alliance, made up of several organizations, companies, and people with a goal to influence policy and speed up research into a range of postviral illnesses.

Solve M.E. has also pushed for inclusion of language regarding ME/CFS and related conditions into congressional bills addressing long COVID, including those that call for funding of research and clinical care.

“On the political front, we’ve really capitalized on a moment in time in which we have the spotlight,” said Emily Taylor, vice president of advocacy and engagement for Solve M.E.

“One of the hardest parts about ME/CFS is how to show that it’s real when it’s invisible. Most people agree that COVID is real and therefore if somebody gets ME/CFS after COVID, it’s real,” she said.

The advocacy groups are now pushing for non-COVID postinfection illnesses to be included in efforts aimed at helping people with long COVID, with mixed results. For example, the RECOVER Initiative, established in February 2021 with $1.5 billion in funding from Congress to the National Institutes of Health, is specifically for studying long COVID and does not fund research into other postinfection illnesses, although representatives from the ME/CFS community are advisers.

Language addressing ME/CFS and other postinfectious chronic illnesses has been included in several long COVID bills now pending in Congress, including the Care for Long COVID Act in the Senate and its companion COVID-19 Long Haulers Act in the House. “Our goal is to push for passage of a long COVID bill by the end of the year,” Ms. Taylor said.

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

The Spanish Society of Pulmonology and Thoracic Surgery (SEPAR) has issued a new international consensus document (ICD) on obstructive sleep apnea (OSA). The objective is to improve the diagnosis and treatment of one of the most prevalent sleep disorders.

The ICD represents a collaboration of experts from 17 scientific societies and 56 specialists from various countries. It provides a series of clinical guidelines to help health care professionals make the best decisions for adult patients with OSA. Notably, the authors propose changing the name from sleep apnea syndrome. In recommending the term OSA, they reintroduce the term “obstructive” – to differentiate the disorder from central sleep apnea – and remove the outdated word “syndrome.”

“The definition has also been changed, as it was a bit vague and difficult to understand. And there are significant changes to the treatment and to the diagnostic algorithms – one for primary care and another for sleep units,” Olga Mediano, MD, said in an interview. She is a SEPAR pulmonologist, first author of the ICD, and the coordinator of SEPAR 2022 Year of Intermediate Respiratory Care Units.
 

Diagnosis in primary care

The ICD indicates that all levels of care must be involved in the management of OSA, a condition in which complete or partial upper airway blockage occurs during sleep, causing the individual to stop breathing for a few seconds. These pauses, which produce hypoxia and sleep fragmentation, increase the risk of workplace and traffic accidents, affect cardiovascular health, and contribute to uncontrolled or resistant hypertension.

The recommendations in the ICD aim at increasing the role of primary care physicians so as to reduce underdiagnosis of OSA in primary care. “The vast majority of patients with OSA haven’t been diagnosed. In fact, those whom we have diagnosed are the patients with the most severe cases – in other words, patients who present with the most symptoms,” said Dr. Mediano. She explained that many patients with OSA don’t consider it a medical condition, so they do not go to the doctor.

“The other big problem is that, before, there was a preconceived notion of the typical OSA patient: A middle-aged obese man who’s fallen asleep in the waiting room. However, there are many other profiles: thin build, women. ... Sleep has a heterogeneous profile, and all profiles need to be known,” said Dr. Mediano. The difficulties in carrying out a sleep study with the various patients are an added problem that the new consensus document also seeks to resolve. “The step we’ve taken is to involve the primary care physician in super-simplified studies to reach more people,” she said. For this, the primary care site must work in coordination with a sleep unit.

“In the super-simplified study, the patient is given a machine to use at home; they hook themselves up to it when they go to sleep. This machine records the number of apnea episodes the patient experiences during the night, as well as the oxygen level. The next day, the patient returns the machine. The data are downloaded to a computer. The software analyzes the breathing pauses that the patient had during the night and automatically gives a series of values that, if very pronounced, as the document indicates, would lead to a diagnosis of OSA. Once diagnosed by a primary care physician, the patient is referred to a sleep unit where treatment can then be assessed,” explained Dr. Mediano.
 

Different treatments

The new ICD’s approach incorporates therapeutic alternatives as well. Until now, many consensus documents and clinical guidelines have focused on continuous positive airway pressure therapy, in which a machine delivers continuous airflow to help keep the patient’s airway open and unobstructed during sleep. Some guidelines recommend its use, and others do not. “However, in this new document, management of the patient is much more multidisciplinary. What changes, with respect to the treatment, is the philosophy. It’s not one single type of treatment; rather, other therapeutic options are kept in mind,” said Dr. Mediano.

First, treatment of reversible causes of OSA must be offered. The conditions that lead to OSA and that can be reversed are addressed. These include overweight and obesity; heavy drinking; tonsillar hypertrophy, or severe dental or facial alterations, for which surgery can be considered; and gastroesophageal reflux or hypothyroidism, both of which can be treated. “For example, the leading cause of sleep apnea is obesity. If we can get the patient to lose weight, that can end up making the OSA go away. What does the document say? Well, you have to try to implement intensive strategies regarding diet, exercise, etc. And if that’s not enough, you need to consider using drugs or even bariatric surgery,” said Dr. Mediano.

“If there’s no one definitive treatment, we highly recommend that all patients implement hygienic-dietary measures and then assess all the therapeutic options. In some cases, several can be in place at the same time,” she said. Various medical specialists can play a role in the treatment of OSA, said Dr. Mediano. They include otolaryngologists, maxillofacial surgeons, dentists, cardiologists, and neurophysiologists, to mention a few.

A website has been created to explain the ICD. There, visitors will be able to find the most up-to-date version of the ICD as well as related information, news, and materials.

A version of this article appeared on Medscape.com. This article was translated from Univadis Spain.

The Spanish Society of Pulmonology and Thoracic Surgery (SEPAR) has issued a new international consensus document (ICD) on obstructive sleep apnea (OSA). The objective is to improve the diagnosis and treatment of one of the most prevalent sleep disorders.

The ICD represents a collaboration of experts from 17 scientific societies and 56 specialists from various countries. It provides a series of clinical guidelines to help health care professionals make the best decisions for adult patients with OSA. Notably, the authors propose changing the name from sleep apnea syndrome. In recommending the term OSA, they reintroduce the term “obstructive” – to differentiate the disorder from central sleep apnea – and remove the outdated word “syndrome.”

“The definition has also been changed, as it was a bit vague and difficult to understand. And there are significant changes to the treatment and to the diagnostic algorithms – one for primary care and another for sleep units,” Olga Mediano, MD, said in an interview. She is a SEPAR pulmonologist, first author of the ICD, and the coordinator of SEPAR 2022 Year of Intermediate Respiratory Care Units.
 

Diagnosis in primary care

The ICD indicates that all levels of care must be involved in the management of OSA, a condition in which complete or partial upper airway blockage occurs during sleep, causing the individual to stop breathing for a few seconds. These pauses, which produce hypoxia and sleep fragmentation, increase the risk of workplace and traffic accidents, affect cardiovascular health, and contribute to uncontrolled or resistant hypertension.

The recommendations in the ICD aim at increasing the role of primary care physicians so as to reduce underdiagnosis of OSA in primary care. “The vast majority of patients with OSA haven’t been diagnosed. In fact, those whom we have diagnosed are the patients with the most severe cases – in other words, patients who present with the most symptoms,” said Dr. Mediano. She explained that many patients with OSA don’t consider it a medical condition, so they do not go to the doctor.

“The other big problem is that, before, there was a preconceived notion of the typical OSA patient: A middle-aged obese man who’s fallen asleep in the waiting room. However, there are many other profiles: thin build, women. ... Sleep has a heterogeneous profile, and all profiles need to be known,” said Dr. Mediano. The difficulties in carrying out a sleep study with the various patients are an added problem that the new consensus document also seeks to resolve. “The step we’ve taken is to involve the primary care physician in super-simplified studies to reach more people,” she said. For this, the primary care site must work in coordination with a sleep unit.

“In the super-simplified study, the patient is given a machine to use at home; they hook themselves up to it when they go to sleep. This machine records the number of apnea episodes the patient experiences during the night, as well as the oxygen level. The next day, the patient returns the machine. The data are downloaded to a computer. The software analyzes the breathing pauses that the patient had during the night and automatically gives a series of values that, if very pronounced, as the document indicates, would lead to a diagnosis of OSA. Once diagnosed by a primary care physician, the patient is referred to a sleep unit where treatment can then be assessed,” explained Dr. Mediano.
 

Different treatments

The new ICD’s approach incorporates therapeutic alternatives as well. Until now, many consensus documents and clinical guidelines have focused on continuous positive airway pressure therapy, in which a machine delivers continuous airflow to help keep the patient’s airway open and unobstructed during sleep. Some guidelines recommend its use, and others do not. “However, in this new document, management of the patient is much more multidisciplinary. What changes, with respect to the treatment, is the philosophy. It’s not one single type of treatment; rather, other therapeutic options are kept in mind,” said Dr. Mediano.

First, treatment of reversible causes of OSA must be offered. The conditions that lead to OSA and that can be reversed are addressed. These include overweight and obesity; heavy drinking; tonsillar hypertrophy, or severe dental or facial alterations, for which surgery can be considered; and gastroesophageal reflux or hypothyroidism, both of which can be treated. “For example, the leading cause of sleep apnea is obesity. If we can get the patient to lose weight, that can end up making the OSA go away. What does the document say? Well, you have to try to implement intensive strategies regarding diet, exercise, etc. And if that’s not enough, you need to consider using drugs or even bariatric surgery,” said Dr. Mediano.

“If there’s no one definitive treatment, we highly recommend that all patients implement hygienic-dietary measures and then assess all the therapeutic options. In some cases, several can be in place at the same time,” she said. Various medical specialists can play a role in the treatment of OSA, said Dr. Mediano. They include otolaryngologists, maxillofacial surgeons, dentists, cardiologists, and neurophysiologists, to mention a few.

A website has been created to explain the ICD. There, visitors will be able to find the most up-to-date version of the ICD as well as related information, news, and materials.

A version of this article appeared on Medscape.com. This article was translated from Univadis Spain.

The Spanish Society of Pulmonology and Thoracic Surgery (SEPAR) has issued a new international consensus document (ICD) on obstructive sleep apnea (OSA). The objective is to improve the diagnosis and treatment of one of the most prevalent sleep disorders.

The ICD represents a collaboration of experts from 17 scientific societies and 56 specialists from various countries. It provides a series of clinical guidelines to help health care professionals make the best decisions for adult patients with OSA. Notably, the authors propose changing the name from sleep apnea syndrome. In recommending the term OSA, they reintroduce the term “obstructive” – to differentiate the disorder from central sleep apnea – and remove the outdated word “syndrome.”

“The definition has also been changed, as it was a bit vague and difficult to understand. And there are significant changes to the treatment and to the diagnostic algorithms – one for primary care and another for sleep units,” Olga Mediano, MD, said in an interview. She is a SEPAR pulmonologist, first author of the ICD, and the coordinator of SEPAR 2022 Year of Intermediate Respiratory Care Units.
 

Diagnosis in primary care

The ICD indicates that all levels of care must be involved in the management of OSA, a condition in which complete or partial upper airway blockage occurs during sleep, causing the individual to stop breathing for a few seconds. These pauses, which produce hypoxia and sleep fragmentation, increase the risk of workplace and traffic accidents, affect cardiovascular health, and contribute to uncontrolled or resistant hypertension.

The recommendations in the ICD aim at increasing the role of primary care physicians so as to reduce underdiagnosis of OSA in primary care. “The vast majority of patients with OSA haven’t been diagnosed. In fact, those whom we have diagnosed are the patients with the most severe cases – in other words, patients who present with the most symptoms,” said Dr. Mediano. She explained that many patients with OSA don’t consider it a medical condition, so they do not go to the doctor.

“The other big problem is that, before, there was a preconceived notion of the typical OSA patient: A middle-aged obese man who’s fallen asleep in the waiting room. However, there are many other profiles: thin build, women. ... Sleep has a heterogeneous profile, and all profiles need to be known,” said Dr. Mediano. The difficulties in carrying out a sleep study with the various patients are an added problem that the new consensus document also seeks to resolve. “The step we’ve taken is to involve the primary care physician in super-simplified studies to reach more people,” she said. For this, the primary care site must work in coordination with a sleep unit.

“In the super-simplified study, the patient is given a machine to use at home; they hook themselves up to it when they go to sleep. This machine records the number of apnea episodes the patient experiences during the night, as well as the oxygen level. The next day, the patient returns the machine. The data are downloaded to a computer. The software analyzes the breathing pauses that the patient had during the night and automatically gives a series of values that, if very pronounced, as the document indicates, would lead to a diagnosis of OSA. Once diagnosed by a primary care physician, the patient is referred to a sleep unit where treatment can then be assessed,” explained Dr. Mediano.
 

Different treatments

The new ICD’s approach incorporates therapeutic alternatives as well. Until now, many consensus documents and clinical guidelines have focused on continuous positive airway pressure therapy, in which a machine delivers continuous airflow to help keep the patient’s airway open and unobstructed during sleep. Some guidelines recommend its use, and others do not. “However, in this new document, management of the patient is much more multidisciplinary. What changes, with respect to the treatment, is the philosophy. It’s not one single type of treatment; rather, other therapeutic options are kept in mind,” said Dr. Mediano.

First, treatment of reversible causes of OSA must be offered. The conditions that lead to OSA and that can be reversed are addressed. These include overweight and obesity; heavy drinking; tonsillar hypertrophy, or severe dental or facial alterations, for which surgery can be considered; and gastroesophageal reflux or hypothyroidism, both of which can be treated. “For example, the leading cause of sleep apnea is obesity. If we can get the patient to lose weight, that can end up making the OSA go away. What does the document say? Well, you have to try to implement intensive strategies regarding diet, exercise, etc. And if that’s not enough, you need to consider using drugs or even bariatric surgery,” said Dr. Mediano.

“If there’s no one definitive treatment, we highly recommend that all patients implement hygienic-dietary measures and then assess all the therapeutic options. In some cases, several can be in place at the same time,” she said. Various medical specialists can play a role in the treatment of OSA, said Dr. Mediano. They include otolaryngologists, maxillofacial surgeons, dentists, cardiologists, and neurophysiologists, to mention a few.

A website has been created to explain the ICD. There, visitors will be able to find the most up-to-date version of the ICD as well as related information, news, and materials.

A version of this article appeared on Medscape.com. This article was translated from Univadis Spain.

Something about this COVID testing smells fishy

The Chinese have been challenging America’s political and economic hegemony (yes, we did have to look that one up – you’re rude to ask) for some time, but now they’ve gone too far. Are we going to just sit here and let China do something more ridiculous than us in response to COVID? No way!

Alexander Zvir/Pexels

Here’s the deal: The government of the Chinese coastal city of Xiamen has decided that it’s not just the workers on returning fishing boats who have the potential to introduce COVID to the rest of the population. The fish also present a problem. So when the authorities say that everyone needs to be tested before they can enter the city, they mean everyone.

An employee of the municipal ocean development bureau told local media that “all people in Xiamen City need nucleic acid testing, and the fish catches must be tested as well,” according to the Guardian, which also said that “TV news reports showed officials swabbing the mouths of fish and the underside of crabs.”

In the words of George Takei: “Oh my.”

Hold on there a second, George Takei, because we here in the good old US of A have still got Los Angeles, where COVID testing also has taken a nonhuman turn. The LA County public health department recently announced that pets are now eligible for a free SARS-CoV-2 test through veterinarians and other animal care facilities.

“Our goal is to test many different species of animals including wildlife (deer, bats, raccoons), pets (dogs, cats, hamsters, pocket pets), marine mammals (seals), and more,” Veterinary Public Health announced.

Hegemony restored.
 

Not even God could save them from worms

The Dark Ages may not have been as dark and violent as many people think, but there’s no denying that life in medieval Europe kind of sucked. The only real alternative to serfdom was a job with the Catholic Church. Medieval friars, for example, lived in stone buildings, had access to fresh fruits and vegetables, and even had latrines and running water. Luxuries compared with the life of the average peasant.

Cambridge Archaeological Unit

So why then, despite having access to more modern sanitation and amenities, did the friars have so many gut parasites? That’s the question raised by a group of researchers from the University of Cambridge, who conducted a study of 19 medieval friars buried at a local friary (Oh, doesn’t your town have one of those?) and 25 local people buried at a nonreligious cemetery during a similar time period. Of those 19 friars, 11 were infected with worms and parasites, compared with just 8 of 25 townspeople.

This doesn’t make a lot of sense. The friars had a good life by old-time standards: They had basic sanitation down and a solid diet. These things should lead to a healthier population. The problem, the researchers found, is two pronged and a vicious cycle. First off, the friars had plenty of fresh food, but they used human feces to fertilize their produce. There’s a reason modern practice for human waste fertilization is to let the waste compost for 6 months: The waiting period allows the parasites a chance to kindly die off, which prevents reinfection.

Secondly, the friars’ diet of fresh fruits and vegetables mixed together into a salad, while appealing to our modern-day sensibilities, was not a great choice. By comparison, laypeople tended to eat a boiled mishmash of whatever they could find, and while that’s kind of gross, the key here is that their food was cooked. And heat kills parasites. The uncooked salads did no such thing, so the monks ate infected food, expelled infected poop, and grew more infected food with their infected poop.

Once the worms arrived, they never left, making them the worst kind of house guest. Read the room, worms, take your dinner and move on. You don’t have to go home, but you can’t stay here.
 

What’s a shared genotype between friends?

Do you find it hard to tell the difference between Katy Perry and Zooey Deschanel? They look alike, but they’re not related. Or are they? According to new research, people who look and act very similar but are not related may share DNA.

François Brunelle

“Our study provides a rare insight into human likeness by showing that people with extreme look-alike faces share common genotypes, whereas they are discordant at the epigenome and microbiome levels,” senior author Manel Esteller of the Josep Carreras Leukemia Research Institute in Barcelona said in a written statement. “Genomics clusters them together, and the rest sets them apart.”

The Internet has been a great source in being able to find look-alikes. The research team found photos of doppelgangers photographed by François Brunelle, a Canadian artist. Using facial recognition algorithms, the investigators were able to measure likeness between the each pair of look-alikes. The participants also completed a questionnaire about lifestyle and provided a saliva sample.

The results showed that the look-alikes had similar genotypes but different DNA methylation and microbiome landscapes. The look-alikes also seemed to have similarities in weight, height, and behaviors such as smoking, proving that doppelgangers not only look alike but also share common interests.

Next time someone tells you that you look like their best friend Steve, you won’t have to wonder much what Steve is like.
 

The secret to a good relationship? It’s a secret

Strong relationships are built on honesty and trust, right? Being open with your partner and/or friends is usually a good practice for keeping the relationship healthy, but the latest evidence suggests that maybe you shouldn’t share everything.

bilderlounge

According to the first known study on the emotional, behavioral, and relational aspect of consumer behavior, not disclosing certain purchases to your partner can actually be a good thing for the relationship. How? Well, it all has to do with guilt.

In a series of studies, the researchers asked couples about their secret consumptions. The most commonly hidden thing by far was a product (65%).

“We found that 90% of people have recently kept everyday consumer behaviors a secret from a close other – like a friend or spouse – even though they also report that they don’t think their partner would care if they knew about it,” Kelley Gullo Wight, one of the study’s two lead authors, said in a written statement.

Keeping a hidden stash of chocolate produces guilt, which the researchers found to be the key factor, making the perpetrator want to do more in the relationship to ease that sense of betrayal or dishonesty. They called it a “greater relationship investment,” meaning the person is more likely to do a little extra for their partner, like shell out more money for the next anniversary gift or yield to watching their partner’s favorite program.

So don’t feel too bad about that secret Amazon purchase. As long as the other person doesn’t see the box, nobody has to know. Your relationship can only improve.

Something about this COVID testing smells fishy

The Chinese have been challenging America’s political and economic hegemony (yes, we did have to look that one up – you’re rude to ask) for some time, but now they’ve gone too far. Are we going to just sit here and let China do something more ridiculous than us in response to COVID? No way!

Alexander Zvir/Pexels

Here’s the deal: The government of the Chinese coastal city of Xiamen has decided that it’s not just the workers on returning fishing boats who have the potential to introduce COVID to the rest of the population. The fish also present a problem. So when the authorities say that everyone needs to be tested before they can enter the city, they mean everyone.

An employee of the municipal ocean development bureau told local media that “all people in Xiamen City need nucleic acid testing, and the fish catches must be tested as well,” according to the Guardian, which also said that “TV news reports showed officials swabbing the mouths of fish and the underside of crabs.”

In the words of George Takei: “Oh my.”

Hold on there a second, George Takei, because we here in the good old US of A have still got Los Angeles, where COVID testing also has taken a nonhuman turn. The LA County public health department recently announced that pets are now eligible for a free SARS-CoV-2 test through veterinarians and other animal care facilities.

“Our goal is to test many different species of animals including wildlife (deer, bats, raccoons), pets (dogs, cats, hamsters, pocket pets), marine mammals (seals), and more,” Veterinary Public Health announced.

Hegemony restored.
 

Not even God could save them from worms

The Dark Ages may not have been as dark and violent as many people think, but there’s no denying that life in medieval Europe kind of sucked. The only real alternative to serfdom was a job with the Catholic Church. Medieval friars, for example, lived in stone buildings, had access to fresh fruits and vegetables, and even had latrines and running water. Luxuries compared with the life of the average peasant.

Cambridge Archaeological Unit

So why then, despite having access to more modern sanitation and amenities, did the friars have so many gut parasites? That’s the question raised by a group of researchers from the University of Cambridge, who conducted a study of 19 medieval friars buried at a local friary (Oh, doesn’t your town have one of those?) and 25 local people buried at a nonreligious cemetery during a similar time period. Of those 19 friars, 11 were infected with worms and parasites, compared with just 8 of 25 townspeople.

This doesn’t make a lot of sense. The friars had a good life by old-time standards: They had basic sanitation down and a solid diet. These things should lead to a healthier population. The problem, the researchers found, is two pronged and a vicious cycle. First off, the friars had plenty of fresh food, but they used human feces to fertilize their produce. There’s a reason modern practice for human waste fertilization is to let the waste compost for 6 months: The waiting period allows the parasites a chance to kindly die off, which prevents reinfection.

Secondly, the friars’ diet of fresh fruits and vegetables mixed together into a salad, while appealing to our modern-day sensibilities, was not a great choice. By comparison, laypeople tended to eat a boiled mishmash of whatever they could find, and while that’s kind of gross, the key here is that their food was cooked. And heat kills parasites. The uncooked salads did no such thing, so the monks ate infected food, expelled infected poop, and grew more infected food with their infected poop.

Once the worms arrived, they never left, making them the worst kind of house guest. Read the room, worms, take your dinner and move on. You don’t have to go home, but you can’t stay here.
 

What’s a shared genotype between friends?

Do you find it hard to tell the difference between Katy Perry and Zooey Deschanel? They look alike, but they’re not related. Or are they? According to new research, people who look and act very similar but are not related may share DNA.

François Brunelle

“Our study provides a rare insight into human likeness by showing that people with extreme look-alike faces share common genotypes, whereas they are discordant at the epigenome and microbiome levels,” senior author Manel Esteller of the Josep Carreras Leukemia Research Institute in Barcelona said in a written statement. “Genomics clusters them together, and the rest sets them apart.”

The Internet has been a great source in being able to find look-alikes. The research team found photos of doppelgangers photographed by François Brunelle, a Canadian artist. Using facial recognition algorithms, the investigators were able to measure likeness between the each pair of look-alikes. The participants also completed a questionnaire about lifestyle and provided a saliva sample.

The results showed that the look-alikes had similar genotypes but different DNA methylation and microbiome landscapes. The look-alikes also seemed to have similarities in weight, height, and behaviors such as smoking, proving that doppelgangers not only look alike but also share common interests.

Next time someone tells you that you look like their best friend Steve, you won’t have to wonder much what Steve is like.
 

The secret to a good relationship? It’s a secret

Strong relationships are built on honesty and trust, right? Being open with your partner and/or friends is usually a good practice for keeping the relationship healthy, but the latest evidence suggests that maybe you shouldn’t share everything.

bilderlounge

According to the first known study on the emotional, behavioral, and relational aspect of consumer behavior, not disclosing certain purchases to your partner can actually be a good thing for the relationship. How? Well, it all has to do with guilt.

In a series of studies, the researchers asked couples about their secret consumptions. The most commonly hidden thing by far was a product (65%).

“We found that 90% of people have recently kept everyday consumer behaviors a secret from a close other – like a friend or spouse – even though they also report that they don’t think their partner would care if they knew about it,” Kelley Gullo Wight, one of the study’s two lead authors, said in a written statement.

Keeping a hidden stash of chocolate produces guilt, which the researchers found to be the key factor, making the perpetrator want to do more in the relationship to ease that sense of betrayal or dishonesty. They called it a “greater relationship investment,” meaning the person is more likely to do a little extra for their partner, like shell out more money for the next anniversary gift or yield to watching their partner’s favorite program.

So don’t feel too bad about that secret Amazon purchase. As long as the other person doesn’t see the box, nobody has to know. Your relationship can only improve.

Something about this COVID testing smells fishy

The Chinese have been challenging America’s political and economic hegemony (yes, we did have to look that one up – you’re rude to ask) for some time, but now they’ve gone too far. Are we going to just sit here and let China do something more ridiculous than us in response to COVID? No way!

Alexander Zvir/Pexels

Here’s the deal: The government of the Chinese coastal city of Xiamen has decided that it’s not just the workers on returning fishing boats who have the potential to introduce COVID to the rest of the population. The fish also present a problem. So when the authorities say that everyone needs to be tested before they can enter the city, they mean everyone.

An employee of the municipal ocean development bureau told local media that “all people in Xiamen City need nucleic acid testing, and the fish catches must be tested as well,” according to the Guardian, which also said that “TV news reports showed officials swabbing the mouths of fish and the underside of crabs.”

In the words of George Takei: “Oh my.”

Hold on there a second, George Takei, because we here in the good old US of A have still got Los Angeles, where COVID testing also has taken a nonhuman turn. The LA County public health department recently announced that pets are now eligible for a free SARS-CoV-2 test through veterinarians and other animal care facilities.

“Our goal is to test many different species of animals including wildlife (deer, bats, raccoons), pets (dogs, cats, hamsters, pocket pets), marine mammals (seals), and more,” Veterinary Public Health announced.

Hegemony restored.
 

Not even God could save them from worms

The Dark Ages may not have been as dark and violent as many people think, but there’s no denying that life in medieval Europe kind of sucked. The only real alternative to serfdom was a job with the Catholic Church. Medieval friars, for example, lived in stone buildings, had access to fresh fruits and vegetables, and even had latrines and running water. Luxuries compared with the life of the average peasant.

Cambridge Archaeological Unit

So why then, despite having access to more modern sanitation and amenities, did the friars have so many gut parasites? That’s the question raised by a group of researchers from the University of Cambridge, who conducted a study of 19 medieval friars buried at a local friary (Oh, doesn’t your town have one of those?) and 25 local people buried at a nonreligious cemetery during a similar time period. Of those 19 friars, 11 were infected with worms and parasites, compared with just 8 of 25 townspeople.

This doesn’t make a lot of sense. The friars had a good life by old-time standards: They had basic sanitation down and a solid diet. These things should lead to a healthier population. The problem, the researchers found, is two pronged and a vicious cycle. First off, the friars had plenty of fresh food, but they used human feces to fertilize their produce. There’s a reason modern practice for human waste fertilization is to let the waste compost for 6 months: The waiting period allows the parasites a chance to kindly die off, which prevents reinfection.

Secondly, the friars’ diet of fresh fruits and vegetables mixed together into a salad, while appealing to our modern-day sensibilities, was not a great choice. By comparison, laypeople tended to eat a boiled mishmash of whatever they could find, and while that’s kind of gross, the key here is that their food was cooked. And heat kills parasites. The uncooked salads did no such thing, so the monks ate infected food, expelled infected poop, and grew more infected food with their infected poop.

Once the worms arrived, they never left, making them the worst kind of house guest. Read the room, worms, take your dinner and move on. You don’t have to go home, but you can’t stay here.
 

What’s a shared genotype between friends?

Do you find it hard to tell the difference between Katy Perry and Zooey Deschanel? They look alike, but they’re not related. Or are they? According to new research, people who look and act very similar but are not related may share DNA.

François Brunelle

“Our study provides a rare insight into human likeness by showing that people with extreme look-alike faces share common genotypes, whereas they are discordant at the epigenome and microbiome levels,” senior author Manel Esteller of the Josep Carreras Leukemia Research Institute in Barcelona said in a written statement. “Genomics clusters them together, and the rest sets them apart.”

The Internet has been a great source in being able to find look-alikes. The research team found photos of doppelgangers photographed by François Brunelle, a Canadian artist. Using facial recognition algorithms, the investigators were able to measure likeness between the each pair of look-alikes. The participants also completed a questionnaire about lifestyle and provided a saliva sample.

The results showed that the look-alikes had similar genotypes but different DNA methylation and microbiome landscapes. The look-alikes also seemed to have similarities in weight, height, and behaviors such as smoking, proving that doppelgangers not only look alike but also share common interests.

Next time someone tells you that you look like their best friend Steve, you won’t have to wonder much what Steve is like.
 

The secret to a good relationship? It’s a secret

Strong relationships are built on honesty and trust, right? Being open with your partner and/or friends is usually a good practice for keeping the relationship healthy, but the latest evidence suggests that maybe you shouldn’t share everything.

bilderlounge

According to the first known study on the emotional, behavioral, and relational aspect of consumer behavior, not disclosing certain purchases to your partner can actually be a good thing for the relationship. How? Well, it all has to do with guilt.

In a series of studies, the researchers asked couples about their secret consumptions. The most commonly hidden thing by far was a product (65%).

“We found that 90% of people have recently kept everyday consumer behaviors a secret from a close other – like a friend or spouse – even though they also report that they don’t think their partner would care if they knew about it,” Kelley Gullo Wight, one of the study’s two lead authors, said in a written statement.

Keeping a hidden stash of chocolate produces guilt, which the researchers found to be the key factor, making the perpetrator want to do more in the relationship to ease that sense of betrayal or dishonesty. They called it a “greater relationship investment,” meaning the person is more likely to do a little extra for their partner, like shell out more money for the next anniversary gift or yield to watching their partner’s favorite program.

So don’t feel too bad about that secret Amazon purchase. As long as the other person doesn’t see the box, nobody has to know. Your relationship can only improve.

Two new studies offer insights into leukemia survival rates in the United States. From 2000 to 2014, a drop in mortality among children spurred a rise in 5-year leukemia survival rates among patients aged 0-24. But adolescents and young adults who survive 5 years after diagnosis face an ongoing higher risk of death, recent research revealed, and their long-term survival is lower compared to that of the general population.

“Outcomes are improving. However, additional efforts, support, and resources are needed to further improve short- and long-term survival for acute leukemia survivors. Targeted efforts focused on populations that face greater disparities in their survival are needed to move the needle faster,” Michael Roth, MD, codirector of the Adolescent and Young Adult Oncology Program at the University of Texas M.D. Anderson Cancer Center, said in an interview.

In one study, released in The Lancet Child & Adolescent Health, an international team of researchers tracked survival outcomes from various types of leukemia in 61 nations. The study focused on the years 2000-2014 and followed patients aged 0-24.

“Age-standardized 5-year net survival in children, adolescents, and young adults for all leukemias combined during 2010-14 varied widely, ranging from 46% in Mexico to more than 85% in Canada, Cyprus, Belgium, Denmark, Finland, and Australia,” the researchers wrote. “Throughout 2000-14, survival from all leukemias combined remained consistently higher for children than adolescents and young adults, and minimal improvement was seen for adolescents and young adults in most countries.”

The U.S. data came from 41 states that cover 86% of the nation’s population, lead author Naomi Ssenyonga, a research fellow at London School of Hygiene & Tropical Medicine, said in an interview.

The 5-year survival rate for acute lymphoid leukemia (ALL) rose from 80% during 2000-2004 to 86% during 2010-2014. Survival in patients with acute myeloid leukemia (AML) was lower than for other subtypes: 66% in 2010-2014 vs. 57% in 2000-2004.

In regard to all leukemias, “we noted a steady increase in the U.S. of 6 percentage points in 5-year survival, up from 77% for patients diagnosed during 2000-2004 to 83% for those diagnosed during 2010-2014,” Ms. Ssenyonga said. “The gains were largely driven by the improvements seen among children.”

Why haven’t adolescents and young adults gained as much ground in survival?

“They often have unique clinical needs,” Ms. Ssenyonga said. “Over the past few years, adolescents and young adults with leukemia in some parts of the world, including the U.S., have increasingly been treated under pediatric protocols. This has led to higher survival. However, this approach has not been adopted consistently, and survival for adolescents and young adults with leukemia is still generally lower than survival for children.”

Gwen Nichols, MD, chief medical officer of the Leukemia & Lymphoma Society, agreed that pediatric treatment protocols hold promise as treatments for young adults. However, “because we arbitrarily set an age cutoff for being an adult, many of these patients are treated by an adult [nonpediatric] hematologist/oncologist, and some patients in the 20-39 age group do not receive the more intensive treatment regimens given to children,” she said in an interview.

In another study, published in Cancer Epidemiology, Biomarkers, & Prevention, M.D. Anderson Cancer Center’s Dr. Roth and colleagues tracked 1,938 patients with ALL and 2,350 with AML who were diagnosed at ages 15-39 from 1980 to 2009. All lived at least 5 years after diagnosis. In both groups, about 58% were White, and most of the rest were Hispanic. The median age of diagnosis for ALL was 23 (range: 15-39) and 28 years for AML (range: 15-39).

“For ALL, 10-year survival for those diagnosed in the 1980s, 1990s, and 2000s was 83%, 88%, and 88%, respectively,” the researchers reported. “Ten-year survival for AML was 82%, 90%, and 90% for those diagnosed in the 1980s, 1990s, and 2000s, respectively.”

“Early mortality within 10 years of diagnosis was mostly secondary to leukemia progressing or recurring. We believe that later mortality is secondary to the development of late side effects from their cancer treatment,” Dr. Roth said.

He noted that many adolescents and young adults with ALL or AML receive stem-cell transplants. “This treatment approach is effective. However, it is associated with short- and long-term toxicity that impacts patients’ health for many years after treatment.”

Indeed, up to 80% of acute leukemia survivors have significant health complications after therapy, said the Leukemia & Lymphoma Society’s Dr. Nichols, who wasn’t surprised by the findings. According to the society, “even when treatments are effective, more than 70% of childhood cancer survivors have a chronic health condition and 42% have a severe, disabling or life-threatening condition 30 years after diagnosis.”

“It would be interesting to understand the male predominance better,” she added, noting that the study found that male patients had worse long-term survival than females (survival time ratio: 0.61, 95% confidence interval, 0.45-0.82). “While it is tempting to suggest it is due to difference in cardiac disease, I am not aware of data to support why there is this survival difference.”

What’s next? “In ALL, we now have a number of new modalities to treat high-risk and relapsed disease such as antibodies and CAR-T,” Dr. Nichols said. “We anticipate that 5-year survival can improve utilizing these modalities due to getting more patients into remission, hopefully while reducing chemotherapeutic toxicity.”

Dr. Nichol’s also highlighted the society’s new genomic-led Pediatric Acute Leukemia (PedAL) Master Clinical Trial, which began enrolling children with acute leukemia in the United States and Canada this year, in an effort to transform medicine’s traditional high-level chemotherapy strategy to their care. The project was launched in collaboration with the National Cancer Institute, Children’s Oncology Group, and the European Pediatric Acute Leukemia Foundation.

As part of the screening process, the biology of each child’s cancer will be identified, and families will be encouraged to enroll them in appropriate targeted therapy trials.

“Until we are able to decrease the toxicity of leukemia regimens, we won’t see a dramatic shift in late effects and thus in morbidity and mortality,” Dr. Nichols said. “The trial is an effort to test newer, less toxic regimens to begin to change that cycle.”

The 5-year survival study was funded by Children with Cancer UK, Institut National du Cancer, La Ligue Contre le Cancer, Centers for Disease Control and Prevention, Swiss Re, Swiss Cancer Research foundation, Swiss Cancer League, Rossy Family Foundation, National Cancer Institute, and the American Cancer Society. One author reports a grant from Macmillan Cancer Support, consultancy fees from Pfizer, and unsolicited small gifts from Moondance Cancer Initiative for philanthropic work. The other authors report no disclosures.

The long-term survival study was funded by the National Cancer Institute, the Archer Foundation and LyondellBasell Industries. Dr. Roth reports no disclosures; other authors report various disclosures. Dr. Nichols reports no disclosures.

Two new studies offer insights into leukemia survival rates in the United States. From 2000 to 2014, a drop in mortality among children spurred a rise in 5-year leukemia survival rates among patients aged 0-24. But adolescents and young adults who survive 5 years after diagnosis face an ongoing higher risk of death, recent research revealed, and their long-term survival is lower compared to that of the general population.

“Outcomes are improving. However, additional efforts, support, and resources are needed to further improve short- and long-term survival for acute leukemia survivors. Targeted efforts focused on populations that face greater disparities in their survival are needed to move the needle faster,” Michael Roth, MD, codirector of the Adolescent and Young Adult Oncology Program at the University of Texas M.D. Anderson Cancer Center, said in an interview.

In one study, released in The Lancet Child & Adolescent Health, an international team of researchers tracked survival outcomes from various types of leukemia in 61 nations. The study focused on the years 2000-2014 and followed patients aged 0-24.

“Age-standardized 5-year net survival in children, adolescents, and young adults for all leukemias combined during 2010-14 varied widely, ranging from 46% in Mexico to more than 85% in Canada, Cyprus, Belgium, Denmark, Finland, and Australia,” the researchers wrote. “Throughout 2000-14, survival from all leukemias combined remained consistently higher for children than adolescents and young adults, and minimal improvement was seen for adolescents and young adults in most countries.”

The U.S. data came from 41 states that cover 86% of the nation’s population, lead author Naomi Ssenyonga, a research fellow at London School of Hygiene & Tropical Medicine, said in an interview.

The 5-year survival rate for acute lymphoid leukemia (ALL) rose from 80% during 2000-2004 to 86% during 2010-2014. Survival in patients with acute myeloid leukemia (AML) was lower than for other subtypes: 66% in 2010-2014 vs. 57% in 2000-2004.

In regard to all leukemias, “we noted a steady increase in the U.S. of 6 percentage points in 5-year survival, up from 77% for patients diagnosed during 2000-2004 to 83% for those diagnosed during 2010-2014,” Ms. Ssenyonga said. “The gains were largely driven by the improvements seen among children.”

Why haven’t adolescents and young adults gained as much ground in survival?

“They often have unique clinical needs,” Ms. Ssenyonga said. “Over the past few years, adolescents and young adults with leukemia in some parts of the world, including the U.S., have increasingly been treated under pediatric protocols. This has led to higher survival. However, this approach has not been adopted consistently, and survival for adolescents and young adults with leukemia is still generally lower than survival for children.”

Gwen Nichols, MD, chief medical officer of the Leukemia & Lymphoma Society, agreed that pediatric treatment protocols hold promise as treatments for young adults. However, “because we arbitrarily set an age cutoff for being an adult, many of these patients are treated by an adult [nonpediatric] hematologist/oncologist, and some patients in the 20-39 age group do not receive the more intensive treatment regimens given to children,” she said in an interview.

In another study, published in Cancer Epidemiology, Biomarkers, & Prevention, M.D. Anderson Cancer Center’s Dr. Roth and colleagues tracked 1,938 patients with ALL and 2,350 with AML who were diagnosed at ages 15-39 from 1980 to 2009. All lived at least 5 years after diagnosis. In both groups, about 58% were White, and most of the rest were Hispanic. The median age of diagnosis for ALL was 23 (range: 15-39) and 28 years for AML (range: 15-39).

“For ALL, 10-year survival for those diagnosed in the 1980s, 1990s, and 2000s was 83%, 88%, and 88%, respectively,” the researchers reported. “Ten-year survival for AML was 82%, 90%, and 90% for those diagnosed in the 1980s, 1990s, and 2000s, respectively.”

“Early mortality within 10 years of diagnosis was mostly secondary to leukemia progressing or recurring. We believe that later mortality is secondary to the development of late side effects from their cancer treatment,” Dr. Roth said.

He noted that many adolescents and young adults with ALL or AML receive stem-cell transplants. “This treatment approach is effective. However, it is associated with short- and long-term toxicity that impacts patients’ health for many years after treatment.”

Indeed, up to 80% of acute leukemia survivors have significant health complications after therapy, said the Leukemia & Lymphoma Society’s Dr. Nichols, who wasn’t surprised by the findings. According to the society, “even when treatments are effective, more than 70% of childhood cancer survivors have a chronic health condition and 42% have a severe, disabling or life-threatening condition 30 years after diagnosis.”

“It would be interesting to understand the male predominance better,” she added, noting that the study found that male patients had worse long-term survival than females (survival time ratio: 0.61, 95% confidence interval, 0.45-0.82). “While it is tempting to suggest it is due to difference in cardiac disease, I am not aware of data to support why there is this survival difference.”

What’s next? “In ALL, we now have a number of new modalities to treat high-risk and relapsed disease such as antibodies and CAR-T,” Dr. Nichols said. “We anticipate that 5-year survival can improve utilizing these modalities due to getting more patients into remission, hopefully while reducing chemotherapeutic toxicity.”

Dr. Nichol’s also highlighted the society’s new genomic-led Pediatric Acute Leukemia (PedAL) Master Clinical Trial, which began enrolling children with acute leukemia in the United States and Canada this year, in an effort to transform medicine’s traditional high-level chemotherapy strategy to their care. The project was launched in collaboration with the National Cancer Institute, Children’s Oncology Group, and the European Pediatric Acute Leukemia Foundation.

As part of the screening process, the biology of each child’s cancer will be identified, and families will be encouraged to enroll them in appropriate targeted therapy trials.

“Until we are able to decrease the toxicity of leukemia regimens, we won’t see a dramatic shift in late effects and thus in morbidity and mortality,” Dr. Nichols said. “The trial is an effort to test newer, less toxic regimens to begin to change that cycle.”

The 5-year survival study was funded by Children with Cancer UK, Institut National du Cancer, La Ligue Contre le Cancer, Centers for Disease Control and Prevention, Swiss Re, Swiss Cancer Research foundation, Swiss Cancer League, Rossy Family Foundation, National Cancer Institute, and the American Cancer Society. One author reports a grant from Macmillan Cancer Support, consultancy fees from Pfizer, and unsolicited small gifts from Moondance Cancer Initiative for philanthropic work. The other authors report no disclosures.

The long-term survival study was funded by the National Cancer Institute, the Archer Foundation and LyondellBasell Industries. Dr. Roth reports no disclosures; other authors report various disclosures. Dr. Nichols reports no disclosures.

Two new studies offer insights into leukemia survival rates in the United States. From 2000 to 2014, a drop in mortality among children spurred a rise in 5-year leukemia survival rates among patients aged 0-24. But adolescents and young adults who survive 5 years after diagnosis face an ongoing higher risk of death, recent research revealed, and their long-term survival is lower compared to that of the general population.

“Outcomes are improving. However, additional efforts, support, and resources are needed to further improve short- and long-term survival for acute leukemia survivors. Targeted efforts focused on populations that face greater disparities in their survival are needed to move the needle faster,” Michael Roth, MD, codirector of the Adolescent and Young Adult Oncology Program at the University of Texas M.D. Anderson Cancer Center, said in an interview.

In one study, released in The Lancet Child & Adolescent Health, an international team of researchers tracked survival outcomes from various types of leukemia in 61 nations. The study focused on the years 2000-2014 and followed patients aged 0-24.

“Age-standardized 5-year net survival in children, adolescents, and young adults for all leukemias combined during 2010-14 varied widely, ranging from 46% in Mexico to more than 85% in Canada, Cyprus, Belgium, Denmark, Finland, and Australia,” the researchers wrote. “Throughout 2000-14, survival from all leukemias combined remained consistently higher for children than adolescents and young adults, and minimal improvement was seen for adolescents and young adults in most countries.”

The U.S. data came from 41 states that cover 86% of the nation’s population, lead author Naomi Ssenyonga, a research fellow at London School of Hygiene & Tropical Medicine, said in an interview.

The 5-year survival rate for acute lymphoid leukemia (ALL) rose from 80% during 2000-2004 to 86% during 2010-2014. Survival in patients with acute myeloid leukemia (AML) was lower than for other subtypes: 66% in 2010-2014 vs. 57% in 2000-2004.

In regard to all leukemias, “we noted a steady increase in the U.S. of 6 percentage points in 5-year survival, up from 77% for patients diagnosed during 2000-2004 to 83% for those diagnosed during 2010-2014,” Ms. Ssenyonga said. “The gains were largely driven by the improvements seen among children.”

Why haven’t adolescents and young adults gained as much ground in survival?

“They often have unique clinical needs,” Ms. Ssenyonga said. “Over the past few years, adolescents and young adults with leukemia in some parts of the world, including the U.S., have increasingly been treated under pediatric protocols. This has led to higher survival. However, this approach has not been adopted consistently, and survival for adolescents and young adults with leukemia is still generally lower than survival for children.”

Gwen Nichols, MD, chief medical officer of the Leukemia & Lymphoma Society, agreed that pediatric treatment protocols hold promise as treatments for young adults. However, “because we arbitrarily set an age cutoff for being an adult, many of these patients are treated by an adult [nonpediatric] hematologist/oncologist, and some patients in the 20-39 age group do not receive the more intensive treatment regimens given to children,” she said in an interview.

In another study, published in Cancer Epidemiology, Biomarkers, & Prevention, M.D. Anderson Cancer Center’s Dr. Roth and colleagues tracked 1,938 patients with ALL and 2,350 with AML who were diagnosed at ages 15-39 from 1980 to 2009. All lived at least 5 years after diagnosis. In both groups, about 58% were White, and most of the rest were Hispanic. The median age of diagnosis for ALL was 23 (range: 15-39) and 28 years for AML (range: 15-39).

“For ALL, 10-year survival for those diagnosed in the 1980s, 1990s, and 2000s was 83%, 88%, and 88%, respectively,” the researchers reported. “Ten-year survival for AML was 82%, 90%, and 90% for those diagnosed in the 1980s, 1990s, and 2000s, respectively.”

“Early mortality within 10 years of diagnosis was mostly secondary to leukemia progressing or recurring. We believe that later mortality is secondary to the development of late side effects from their cancer treatment,” Dr. Roth said.

He noted that many adolescents and young adults with ALL or AML receive stem-cell transplants. “This treatment approach is effective. However, it is associated with short- and long-term toxicity that impacts patients’ health for many years after treatment.”

Indeed, up to 80% of acute leukemia survivors have significant health complications after therapy, said the Leukemia & Lymphoma Society’s Dr. Nichols, who wasn’t surprised by the findings. According to the society, “even when treatments are effective, more than 70% of childhood cancer survivors have a chronic health condition and 42% have a severe, disabling or life-threatening condition 30 years after diagnosis.”

“It would be interesting to understand the male predominance better,” she added, noting that the study found that male patients had worse long-term survival than females (survival time ratio: 0.61, 95% confidence interval, 0.45-0.82). “While it is tempting to suggest it is due to difference in cardiac disease, I am not aware of data to support why there is this survival difference.”

What’s next? “In ALL, we now have a number of new modalities to treat high-risk and relapsed disease such as antibodies and CAR-T,” Dr. Nichols said. “We anticipate that 5-year survival can improve utilizing these modalities due to getting more patients into remission, hopefully while reducing chemotherapeutic toxicity.”

Dr. Nichol’s also highlighted the society’s new genomic-led Pediatric Acute Leukemia (PedAL) Master Clinical Trial, which began enrolling children with acute leukemia in the United States and Canada this year, in an effort to transform medicine’s traditional high-level chemotherapy strategy to their care. The project was launched in collaboration with the National Cancer Institute, Children’s Oncology Group, and the European Pediatric Acute Leukemia Foundation.

As part of the screening process, the biology of each child’s cancer will be identified, and families will be encouraged to enroll them in appropriate targeted therapy trials.

“Until we are able to decrease the toxicity of leukemia regimens, we won’t see a dramatic shift in late effects and thus in morbidity and mortality,” Dr. Nichols said. “The trial is an effort to test newer, less toxic regimens to begin to change that cycle.”

The 5-year survival study was funded by Children with Cancer UK, Institut National du Cancer, La Ligue Contre le Cancer, Centers for Disease Control and Prevention, Swiss Re, Swiss Cancer Research foundation, Swiss Cancer League, Rossy Family Foundation, National Cancer Institute, and the American Cancer Society. One author reports a grant from Macmillan Cancer Support, consultancy fees from Pfizer, and unsolicited small gifts from Moondance Cancer Initiative for philanthropic work. The other authors report no disclosures.

The long-term survival study was funded by the National Cancer Institute, the Archer Foundation and LyondellBasell Industries. Dr. Roth reports no disclosures; other authors report various disclosures. Dr. Nichols reports no disclosures.

Monkeypox. Polio. Covid. A quick glance at the news on any given day seems to indicate that outbreaks, epidemics, and perhaps even pandemics are increasing in frequency.

Granted, these types of events are hardly new; from the plagues of the 5th and 13th centuries to the Spanish flu in the 20th century and SARS-CoV-2 today, they’ve been with us from time immemorial. 

What appears to be different, however, is not their frequency, but their intensity, with research reinforcing that we may be facing unique challenges and smaller windows to intervene as we move forward.

Findings from a modeling study, published in 2021 in Proceedings of the National Academy of Sciences, underscore that without effective intervention, the probability of extreme events like COVID-19 will likely increase threefold in the coming decades.

“The fact is, pandemic preparedness is not something that people have valued or thought of as important, or paid much attention to,” Amesh Adalja, MD, senior scholar, Johns Hopkins Center for Health Security, Baltimore, told this news organization.

“It’s all been based on some unusual cluster of cases that were causing severe disease and overwhelming local authorities. So often, like Indiana Jones, somebody got dispatched to deal with an outbreak,” Dr. Adalja said.

In a perfect post-COVID world, government bodies, scientists, clinicians, and others would cross silos to coordinate pandemic prevention, not just preparedness. The public would trust those who carry the title “public health” in their daily responsibilities, and in turn, public health experts would get back to their core responsibility – infectious disease preparedness – the role they were initially assigned following Europe’s Black Death during the 14th century. Instead, the world finds itself at a crossroads, with emerging and reemerging infectious disease outbreaks that on the surface appear to arise haphazardly but in reality are the result of decades of reaction and containment policies aimed at putting out fires, not addressing their cause.

Dr. Adalja noted that only when the threat of biological weapons became a reality in the mid-2000s was there a realization that economies of scale could be exploited by merging interests and efforts to develop health security medical countermeasures. For example, it encouraged governments to more closely integrate agencies like the Biomedical Advanced Research and Development Authority and infectious disease research organizations and individuals.

Still, while significant strides have been made in certain areas, the ongoing COVID-19 pandemic has revealed substantial weaknesses remaining in public and private health systems, as well as major gaps in infectious disease preparedness.
 

The role of spillover events

No matter whom you ask, scientists, public health and conservation experts, and infectious disease clinicians all point to one of the most important threats to human health. As Walt Kelly’s Pogo famously put it, “We have met the enemy, and he is us.”

“The reason why these outbreaks of novel infectious diseases are increasingly occurring is because of human-driven environmental change, particularly land use, unsafe practices when raising farmed animals, and commercial wildlife markets,” Neil M. Vora, MD, a physician specializing in pandemic prevention at Conservation International and a former Centers for Disease Control and Prevention epidemic intelligence officer, said in an interview.

In fact, more than 60% of emerging infections and diseases are due to these “spillover events” (zoonotic spillover) that occur when pathogens that commonly circulate in wildlife jump over to new, human hosts.

Several examples come to mind.

COVID-19 may have begun as an enzootic virus from two undetermined animals, using the Huanan Seafood Market as a possible intermediate reservoir, according to a July 26 preprint in the journal Science. 

Likewise, while the Ebola virus was originally attributed to deforestation efforts to create palm oil (which allowed fruit bat carriers to transfer the virus to humans), recent research suggests that bats dwelling in the walls of human dwellings and hospitals are responsible for the 2018 outbreak in the Democratic Republic of Congo. 

(Incidentally, just this week, a new Ebola case was confirmed in Eastern Congo, and it has been genetically linked to the previous outbreak, despite that outbreak having been declared over in early July.)

“When we clear forests, we create opportunities for humans to live alongside the forest edge and displace wildlife. There’s evidence that shows when [these] biodiverse areas are cleared, specialist species that evolved to live in the forests first start to disappear, whereas generalist species – rodents and bats – continue to survive and are able to carry pathogens that can be passed on to humans,” Dr. Vora explained.

So far, China’s outbreak of the novel Langya henipavirus is believed to have spread (either directly or indirectly) by rodents and shrews, according to reports from public health authorities like the European Centre for Disease Prevention and Control, which is currently monitoring the situation. 

Yet, an overreliance on surveillance and containment only perpetuates what Dr. Vora says are cycles of panic and neglect.

“We saw it with Ebola in 2015, in 2016 to 2017 with Zika, you see it with tuberculosis, with sexually transmitted infections, and with COVID. You have policymakers working on solutions, and once they think that they’ve fixed the problem, they’re going to move on to the next crisis.”

It’s also a question of equity.

Reports detailing the reemergence of monkeypox in Nigeria in 2017 were largely ignored, despite the fact that the United States assisted in diagnosing an early case in an 11-year-old boy. At the time, it was clear that the virus was spreading by human-to-human transmission versus animal-to-human transmission, something that had not been seen previously. 

“The current model [is] waiting for pathogens to spill over and then [continuing] to spread signals that rich countries are tolerant of these outbreaks so long as they don’t grow into epidemics or pandemics,” Dr. Vora said.

This model is clearly broken; roughly 5 years after Nigeria reported the resurgence of monkeypox, the United States has more than 14,000 confirmed cases, which represents more than a quarter of the total number of cases reported worldwide. 
 

Public health on the brink

I’s difficult to imagine a future without outbreaks and more pandemics, and if experts are to be believed, we are ill-prepared. 

“I think that we are in a situation where this is a major threat, and people have become complacent about it,” said Dr. Adalja, who noted that we should be asking ourselves if the “government is actually in a position to be able to respond in a way that we need them to or is [that response] tied up in bureaucracy and inefficiency?”

COVID-19 should have been seen as a wake-up call, and many of those deaths were preventable. “With monkeypox, they’re faltering; it should have been a layup, not a disaster,” he emphasized.

Ellen Eaton, MD, associate professor of infectious diseases at the University of Alabama at Birmingham, also pointed to the reality that by the time COVID-19 reached North America, the United States had already moved away from the model of the public health department as the epicenter of knowledge, education, awareness, and, ironically, public health.

“Thinking about my community, very few people knew the face and name of our local and state health officers,” she told this news organization.  

“There was just this inherent mistrust of these people. If you add in a lot of talking heads, a lot of politicians and messaging from non-experts that countered what was coming out of our public health agencies early, you had this huge disconnect; in the South, it was the perfect storm for vaccine hesitancy.”

At last count, this perfect storm has led to 1.46 million COVID cases and just over 20,000 deaths – many of which were preventable – in Alabama alone. 

“In certain parts of America, we were starting with a broken system with limited resources and few providers,” Dr. Eaton explained.

Dr. Eaton said that a lot of fields, not just medicine and public health, have finite resources that have been stretched to capacity by COVID, and now monkeypox, and wondered what was next as we’re headed into autumn and influenza season. But she also mentioned the tremendous implications of climate change on infectious diseases and community health and wellness.

“There’s a tremendous need to have the ability to survey not just humans but also how the disease burden in our environment that is fluctuating with climate change is going to impact communities in really important ways,” Dr. Eaton said. 
 

Upstream prevention

Dr. Vora said he could not agree more and believes that upstream prevention holds the key. 

“We have to make sure while there’s tension on this issue that the right solutions are implemented,” he said. 

In coming years, postspillover containment strategies – vaccine research and development and strengthening health care surveillance, for example – are likely to become inadequate.

“We saw it with COVID and we are seeing it again with monkeypox,” Dr. Vora said. “We also have to invest further upstream to prevent spillovers in the first place, for example, by addressing deforestation, commercial wildlife markets and trade, [and] infection control when raising farm animals.”

“The thing is, when you invest in those upstream solutions, you are also mitigating climate change and loss of biodiversity. I’m not saying that we should not invest in postspillover containment efforts; we’re never going to contain every spillover. But we also have to invest in prevention,” he added.

In a piece published in Nature, Dr. Vora and his coauthors acknowledge that several international bodies such as the World Health Organization and G7 have invested in initiatives to facilitate coordinated, global responses to climate change, pandemic preparedness, and response. But they point out that these efforts fail to “explicitly address the negative feedback cycle between environmental degradation, wildlife exploitation, and the emergence of pathogens.”

“Environmental conservation is no longer a left-wing fringe issue, it’s moving into public consciousness, and ... it is public health,” Dr. Vora said. “When we destroy nature, we’re destroying our own ability to survive.”

Dr. Adalja, Dr. Vora, and Dr. Eaton report no relevant financial relationships.

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

Monkeypox. Polio. Covid. A quick glance at the news on any given day seems to indicate that outbreaks, epidemics, and perhaps even pandemics are increasing in frequency.

Granted, these types of events are hardly new; from the plagues of the 5th and 13th centuries to the Spanish flu in the 20th century and SARS-CoV-2 today, they’ve been with us from time immemorial. 

What appears to be different, however, is not their frequency, but their intensity, with research reinforcing that we may be facing unique challenges and smaller windows to intervene as we move forward.

Findings from a modeling study, published in 2021 in Proceedings of the National Academy of Sciences, underscore that without effective intervention, the probability of extreme events like COVID-19 will likely increase threefold in the coming decades.

“The fact is, pandemic preparedness is not something that people have valued or thought of as important, or paid much attention to,” Amesh Adalja, MD, senior scholar, Johns Hopkins Center for Health Security, Baltimore, told this news organization.

“It’s all been based on some unusual cluster of cases that were causing severe disease and overwhelming local authorities. So often, like Indiana Jones, somebody got dispatched to deal with an outbreak,” Dr. Adalja said.

In a perfect post-COVID world, government bodies, scientists, clinicians, and others would cross silos to coordinate pandemic prevention, not just preparedness. The public would trust those who carry the title “public health” in their daily responsibilities, and in turn, public health experts would get back to their core responsibility – infectious disease preparedness – the role they were initially assigned following Europe’s Black Death during the 14th century. Instead, the world finds itself at a crossroads, with emerging and reemerging infectious disease outbreaks that on the surface appear to arise haphazardly but in reality are the result of decades of reaction and containment policies aimed at putting out fires, not addressing their cause.

Dr. Adalja noted that only when the threat of biological weapons became a reality in the mid-2000s was there a realization that economies of scale could be exploited by merging interests and efforts to develop health security medical countermeasures. For example, it encouraged governments to more closely integrate agencies like the Biomedical Advanced Research and Development Authority and infectious disease research organizations and individuals.

Still, while significant strides have been made in certain areas, the ongoing COVID-19 pandemic has revealed substantial weaknesses remaining in public and private health systems, as well as major gaps in infectious disease preparedness.
 

The role of spillover events

No matter whom you ask, scientists, public health and conservation experts, and infectious disease clinicians all point to one of the most important threats to human health. As Walt Kelly’s Pogo famously put it, “We have met the enemy, and he is us.”

“The reason why these outbreaks of novel infectious diseases are increasingly occurring is because of human-driven environmental change, particularly land use, unsafe practices when raising farmed animals, and commercial wildlife markets,” Neil M. Vora, MD, a physician specializing in pandemic prevention at Conservation International and a former Centers for Disease Control and Prevention epidemic intelligence officer, said in an interview.

In fact, more than 60% of emerging infections and diseases are due to these “spillover events” (zoonotic spillover) that occur when pathogens that commonly circulate in wildlife jump over to new, human hosts.

Several examples come to mind.

COVID-19 may have begun as an enzootic virus from two undetermined animals, using the Huanan Seafood Market as a possible intermediate reservoir, according to a July 26 preprint in the journal Science. 

Likewise, while the Ebola virus was originally attributed to deforestation efforts to create palm oil (which allowed fruit bat carriers to transfer the virus to humans), recent research suggests that bats dwelling in the walls of human dwellings and hospitals are responsible for the 2018 outbreak in the Democratic Republic of Congo. 

(Incidentally, just this week, a new Ebola case was confirmed in Eastern Congo, and it has been genetically linked to the previous outbreak, despite that outbreak having been declared over in early July.)

“When we clear forests, we create opportunities for humans to live alongside the forest edge and displace wildlife. There’s evidence that shows when [these] biodiverse areas are cleared, specialist species that evolved to live in the forests first start to disappear, whereas generalist species – rodents and bats – continue to survive and are able to carry pathogens that can be passed on to humans,” Dr. Vora explained.

So far, China’s outbreak of the novel Langya henipavirus is believed to have spread (either directly or indirectly) by rodents and shrews, according to reports from public health authorities like the European Centre for Disease Prevention and Control, which is currently monitoring the situation. 

Yet, an overreliance on surveillance and containment only perpetuates what Dr. Vora says are cycles of panic and neglect.

“We saw it with Ebola in 2015, in 2016 to 2017 with Zika, you see it with tuberculosis, with sexually transmitted infections, and with COVID. You have policymakers working on solutions, and once they think that they’ve fixed the problem, they’re going to move on to the next crisis.”

It’s also a question of equity.

Reports detailing the reemergence of monkeypox in Nigeria in 2017 were largely ignored, despite the fact that the United States assisted in diagnosing an early case in an 11-year-old boy. At the time, it was clear that the virus was spreading by human-to-human transmission versus animal-to-human transmission, something that had not been seen previously. 

“The current model [is] waiting for pathogens to spill over and then [continuing] to spread signals that rich countries are tolerant of these outbreaks so long as they don’t grow into epidemics or pandemics,” Dr. Vora said.

This model is clearly broken; roughly 5 years after Nigeria reported the resurgence of monkeypox, the United States has more than 14,000 confirmed cases, which represents more than a quarter of the total number of cases reported worldwide. 
 

Public health on the brink

I’s difficult to imagine a future without outbreaks and more pandemics, and if experts are to be believed, we are ill-prepared. 

“I think that we are in a situation where this is a major threat, and people have become complacent about it,” said Dr. Adalja, who noted that we should be asking ourselves if the “government is actually in a position to be able to respond in a way that we need them to or is [that response] tied up in bureaucracy and inefficiency?”

COVID-19 should have been seen as a wake-up call, and many of those deaths were preventable. “With monkeypox, they’re faltering; it should have been a layup, not a disaster,” he emphasized.

Ellen Eaton, MD, associate professor of infectious diseases at the University of Alabama at Birmingham, also pointed to the reality that by the time COVID-19 reached North America, the United States had already moved away from the model of the public health department as the epicenter of knowledge, education, awareness, and, ironically, public health.

“Thinking about my community, very few people knew the face and name of our local and state health officers,” she told this news organization.  

“There was just this inherent mistrust of these people. If you add in a lot of talking heads, a lot of politicians and messaging from non-experts that countered what was coming out of our public health agencies early, you had this huge disconnect; in the South, it was the perfect storm for vaccine hesitancy.”

At last count, this perfect storm has led to 1.46 million COVID cases and just over 20,000 deaths – many of which were preventable – in Alabama alone. 

“In certain parts of America, we were starting with a broken system with limited resources and few providers,” Dr. Eaton explained.

Dr. Eaton said that a lot of fields, not just medicine and public health, have finite resources that have been stretched to capacity by COVID, and now monkeypox, and wondered what was next as we’re headed into autumn and influenza season. But she also mentioned the tremendous implications of climate change on infectious diseases and community health and wellness.

“There’s a tremendous need to have the ability to survey not just humans but also how the disease burden in our environment that is fluctuating with climate change is going to impact communities in really important ways,” Dr. Eaton said. 
 

Upstream prevention

Dr. Vora said he could not agree more and believes that upstream prevention holds the key. 

“We have to make sure while there’s tension on this issue that the right solutions are implemented,” he said. 

In coming years, postspillover containment strategies – vaccine research and development and strengthening health care surveillance, for example – are likely to become inadequate.

“We saw it with COVID and we are seeing it again with monkeypox,” Dr. Vora said. “We also have to invest further upstream to prevent spillovers in the first place, for example, by addressing deforestation, commercial wildlife markets and trade, [and] infection control when raising farm animals.”

“The thing is, when you invest in those upstream solutions, you are also mitigating climate change and loss of biodiversity. I’m not saying that we should not invest in postspillover containment efforts; we’re never going to contain every spillover. But we also have to invest in prevention,” he added.

In a piece published in Nature, Dr. Vora and his coauthors acknowledge that several international bodies such as the World Health Organization and G7 have invested in initiatives to facilitate coordinated, global responses to climate change, pandemic preparedness, and response. But they point out that these efforts fail to “explicitly address the negative feedback cycle between environmental degradation, wildlife exploitation, and the emergence of pathogens.”

“Environmental conservation is no longer a left-wing fringe issue, it’s moving into public consciousness, and ... it is public health,” Dr. Vora said. “When we destroy nature, we’re destroying our own ability to survive.”

Dr. Adalja, Dr. Vora, and Dr. Eaton report no relevant financial relationships.

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

Monkeypox. Polio. Covid. A quick glance at the news on any given day seems to indicate that outbreaks, epidemics, and perhaps even pandemics are increasing in frequency.

Granted, these types of events are hardly new; from the plagues of the 5th and 13th centuries to the Spanish flu in the 20th century and SARS-CoV-2 today, they’ve been with us from time immemorial. 

What appears to be different, however, is not their frequency, but their intensity, with research reinforcing that we may be facing unique challenges and smaller windows to intervene as we move forward.

Findings from a modeling study, published in 2021 in Proceedings of the National Academy of Sciences, underscore that without effective intervention, the probability of extreme events like COVID-19 will likely increase threefold in the coming decades.

“The fact is, pandemic preparedness is not something that people have valued or thought of as important, or paid much attention to,” Amesh Adalja, MD, senior scholar, Johns Hopkins Center for Health Security, Baltimore, told this news organization.

“It’s all been based on some unusual cluster of cases that were causing severe disease and overwhelming local authorities. So often, like Indiana Jones, somebody got dispatched to deal with an outbreak,” Dr. Adalja said.

In a perfect post-COVID world, government bodies, scientists, clinicians, and others would cross silos to coordinate pandemic prevention, not just preparedness. The public would trust those who carry the title “public health” in their daily responsibilities, and in turn, public health experts would get back to their core responsibility – infectious disease preparedness – the role they were initially assigned following Europe’s Black Death during the 14th century. Instead, the world finds itself at a crossroads, with emerging and reemerging infectious disease outbreaks that on the surface appear to arise haphazardly but in reality are the result of decades of reaction and containment policies aimed at putting out fires, not addressing their cause.

Dr. Adalja noted that only when the threat of biological weapons became a reality in the mid-2000s was there a realization that economies of scale could be exploited by merging interests and efforts to develop health security medical countermeasures. For example, it encouraged governments to more closely integrate agencies like the Biomedical Advanced Research and Development Authority and infectious disease research organizations and individuals.

Still, while significant strides have been made in certain areas, the ongoing COVID-19 pandemic has revealed substantial weaknesses remaining in public and private health systems, as well as major gaps in infectious disease preparedness.
 

The role of spillover events

No matter whom you ask, scientists, public health and conservation experts, and infectious disease clinicians all point to one of the most important threats to human health. As Walt Kelly’s Pogo famously put it, “We have met the enemy, and he is us.”

“The reason why these outbreaks of novel infectious diseases are increasingly occurring is because of human-driven environmental change, particularly land use, unsafe practices when raising farmed animals, and commercial wildlife markets,” Neil M. Vora, MD, a physician specializing in pandemic prevention at Conservation International and a former Centers for Disease Control and Prevention epidemic intelligence officer, said in an interview.

In fact, more than 60% of emerging infections and diseases are due to these “spillover events” (zoonotic spillover) that occur when pathogens that commonly circulate in wildlife jump over to new, human hosts.

Several examples come to mind.

COVID-19 may have begun as an enzootic virus from two undetermined animals, using the Huanan Seafood Market as a possible intermediate reservoir, according to a July 26 preprint in the journal Science. 

Likewise, while the Ebola virus was originally attributed to deforestation efforts to create palm oil (which allowed fruit bat carriers to transfer the virus to humans), recent research suggests that bats dwelling in the walls of human dwellings and hospitals are responsible for the 2018 outbreak in the Democratic Republic of Congo. 

(Incidentally, just this week, a new Ebola case was confirmed in Eastern Congo, and it has been genetically linked to the previous outbreak, despite that outbreak having been declared over in early July.)

“When we clear forests, we create opportunities for humans to live alongside the forest edge and displace wildlife. There’s evidence that shows when [these] biodiverse areas are cleared, specialist species that evolved to live in the forests first start to disappear, whereas generalist species – rodents and bats – continue to survive and are able to carry pathogens that can be passed on to humans,” Dr. Vora explained.

So far, China’s outbreak of the novel Langya henipavirus is believed to have spread (either directly or indirectly) by rodents and shrews, according to reports from public health authorities like the European Centre for Disease Prevention and Control, which is currently monitoring the situation. 

Yet, an overreliance on surveillance and containment only perpetuates what Dr. Vora says are cycles of panic and neglect.

“We saw it with Ebola in 2015, in 2016 to 2017 with Zika, you see it with tuberculosis, with sexually transmitted infections, and with COVID. You have policymakers working on solutions, and once they think that they’ve fixed the problem, they’re going to move on to the next crisis.”

It’s also a question of equity.

Reports detailing the reemergence of monkeypox in Nigeria in 2017 were largely ignored, despite the fact that the United States assisted in diagnosing an early case in an 11-year-old boy. At the time, it was clear that the virus was spreading by human-to-human transmission versus animal-to-human transmission, something that had not been seen previously. 

“The current model [is] waiting for pathogens to spill over and then [continuing] to spread signals that rich countries are tolerant of these outbreaks so long as they don’t grow into epidemics or pandemics,” Dr. Vora said.

This model is clearly broken; roughly 5 years after Nigeria reported the resurgence of monkeypox, the United States has more than 14,000 confirmed cases, which represents more than a quarter of the total number of cases reported worldwide. 
 

Public health on the brink

I’s difficult to imagine a future without outbreaks and more pandemics, and if experts are to be believed, we are ill-prepared. 

“I think that we are in a situation where this is a major threat, and people have become complacent about it,” said Dr. Adalja, who noted that we should be asking ourselves if the “government is actually in a position to be able to respond in a way that we need them to or is [that response] tied up in bureaucracy and inefficiency?”

COVID-19 should have been seen as a wake-up call, and many of those deaths were preventable. “With monkeypox, they’re faltering; it should have been a layup, not a disaster,” he emphasized.

Ellen Eaton, MD, associate professor of infectious diseases at the University of Alabama at Birmingham, also pointed to the reality that by the time COVID-19 reached North America, the United States had already moved away from the model of the public health department as the epicenter of knowledge, education, awareness, and, ironically, public health.

“Thinking about my community, very few people knew the face and name of our local and state health officers,” she told this news organization.  

“There was just this inherent mistrust of these people. If you add in a lot of talking heads, a lot of politicians and messaging from non-experts that countered what was coming out of our public health agencies early, you had this huge disconnect; in the South, it was the perfect storm for vaccine hesitancy.”

At last count, this perfect storm has led to 1.46 million COVID cases and just over 20,000 deaths – many of which were preventable – in Alabama alone. 

“In certain parts of America, we were starting with a broken system with limited resources and few providers,” Dr. Eaton explained.

Dr. Eaton said that a lot of fields, not just medicine and public health, have finite resources that have been stretched to capacity by COVID, and now monkeypox, and wondered what was next as we’re headed into autumn and influenza season. But she also mentioned the tremendous implications of climate change on infectious diseases and community health and wellness.

“There’s a tremendous need to have the ability to survey not just humans but also how the disease burden in our environment that is fluctuating with climate change is going to impact communities in really important ways,” Dr. Eaton said. 
 

Upstream prevention

Dr. Vora said he could not agree more and believes that upstream prevention holds the key. 

“We have to make sure while there’s tension on this issue that the right solutions are implemented,” he said. 

In coming years, postspillover containment strategies – vaccine research and development and strengthening health care surveillance, for example – are likely to become inadequate.

“We saw it with COVID and we are seeing it again with monkeypox,” Dr. Vora said. “We also have to invest further upstream to prevent spillovers in the first place, for example, by addressing deforestation, commercial wildlife markets and trade, [and] infection control when raising farm animals.”

“The thing is, when you invest in those upstream solutions, you are also mitigating climate change and loss of biodiversity. I’m not saying that we should not invest in postspillover containment efforts; we’re never going to contain every spillover. But we also have to invest in prevention,” he added.

In a piece published in Nature, Dr. Vora and his coauthors acknowledge that several international bodies such as the World Health Organization and G7 have invested in initiatives to facilitate coordinated, global responses to climate change, pandemic preparedness, and response. But they point out that these efforts fail to “explicitly address the negative feedback cycle between environmental degradation, wildlife exploitation, and the emergence of pathogens.”

“Environmental conservation is no longer a left-wing fringe issue, it’s moving into public consciousness, and ... it is public health,” Dr. Vora said. “When we destroy nature, we’re destroying our own ability to survive.”

Dr. Adalja, Dr. Vora, and Dr. Eaton report no relevant financial relationships.

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

The drive from Texas to the clinic in Albuquerque, N.M., took 10 hours. It was mid-April of this year. There wasn’t much to see along the mostly barren stretch, and there wasn’t much for Kailee DeSpain to do aside from think about where she was going and why.

Her husband was driving. She sensed his nervous glances toward the passenger seat where she sat struggling to quiet her thoughts.

No, she wasn’t having any pain, she told him. No, she wasn’t feeling like she did the last time or the two times before that.

This pregnancy was different. It was the first in which she feared for her own life. Her fetus – Finley – had triploidy, a rare chromosomal abnormality. Because of the condition, which affects 1%-3% of pregnancies, his heart, brain, and kidneys were not developing properly.

At 19 weeks, Finley was already struggling to draw breath from lungs squeezed inside an overcrowded chest cavity. Ms. DeSpain wanted nothing more than to carry Finley to term, hold him, meet him even for a moment before saying goodbye.

But his condition meant he would likely suffocate in utero well before that. And Ms. DeSpain knew that carrying him longer would likely raise her risk of bleeding and of her blood pressure increasing to dangerous highs.

“This could kill you,” her husband told her. “Do you realize you could die bringing a baby into this world who is not going to live? I don’t want to lose you.’”

Unlike her other pregnancies, the timing of this one and the decision she faced to end it put her health in even greater danger.
 

Imminent danger

On Sept. 1, 2021, a bill went into effect in Texas that banned abortions from as early as 6 weeks’ gestation. Texas Senate Bill 8 (SB8) became one of the most restrictive abortion laws in the country. It prohibited abortions whenever a fetal heartbeat, defined by lawmakers, could be detected on an ultrasound, often before many women knew they were pregnant.

The Texas abortion law was hardly the last word on the topic. Ms. DeSpain didn’t know it on her drive to New Mexico in April, but the U.S. Supreme Court was weeks away from overturning the landmark Roe v. Wade decision.

On June 24, the Supreme Court delivered its 6-3 ruling overturning Roe v. Wade, the 1973 case that granted women the right to abortion.

This decision set in motion “trigger laws” in some states – laws that essentially fully banned abortions. Those states included Ms. DeSpain’s home state of Texas, where abortion is now a felony except when the life of the mother is in peril.

However, legal definitions of what qualifies as “life-threatening” remain murky.

The law is unclear, says Lisa Harris, MD, PhD, professor in the department of obstetrics and gynecology at the University of Michigan, Ann Arbor. “What does the risk of death have to be, and how imminent must it be?” she asked in a recent editorial in the New England Journal of Medicine. Is 25% enough? 50%? Or does a woman have to be moments from dying?

“This whole thing makes me so angry,” says Shikha Jain, MD, a medical oncologist at University of Illinois Health, Chicago. “A patient may not be experiencing an emergency right now, but if we don’t take care of the situation, it may become an emergency in 2 hours or 2 days.”

Even before the Roe v. Wade decision, pregnancy had been a high-stakes endeavor for many women. In 2019, more than 750 women died from pregnancy-related events in the United States. In 2020, that number rose to 850. Each year dozens more suffer pregnancy-related events that require lifesaving interventions.

Now, in a post-Roe world, the number of maternal deaths will likely climb as more abortion bans take effect and fewer women have access to lifesaving care, experts say. A 2021 study that compared 2017 maternal mortality rates in states with different levels of abortion restrictions found that the rate of maternal mortality was almost two times higher in states that restricted abortion access compared with those that protected it – 28.5 per 100,000 women vs. 15.7.

Some women living in states with abortion bans won’t have the resources to cross state lines for care.

“This is just going to widen the health care disparities that are already so prevalent in this country,” Dr. Jain says.
 

Navigating a crossroads

Ms. DeSpain’s medical history reads like a checklist of pregnancy-related perils: chronic high blood pressure, persistent clotting problems, and a high risk of hemorrhage. She was also diagnosed with cervical cancer in 2020, which left her body more fragile.

Cardiovascular conditions, including hypertension and hemorrhage, are the leading causes of maternal mortality, responsible for more than one-third of pregnancy-related deaths. Preeclampsia, characterized by high blood pressure, accounts for more than 7% of maternal deaths in the United States. Although less common, genetic disorders, such as spinal muscular atrophy and triploidy, or cancer during pregnancy can put a mother and fetus at risk.

Cancer – which affects about 1 in 1,000 pregnant women and results in termination in as many as 28% of cases – brings sharp focus to the new dangers and complex decision-making patients and their doctors face as abortion bans take hold.

Before the Supreme Court decision, a pregnant woman with cancer was already facing great uncertainty. The decision to treat cancer during pregnancy involves “weighing the risk of exposing the fetus to medication vs. the risk to the mother’s untreated illness if you don’t expose the fetus to medication,” Elyce Cardonick, MD, an obstetrician at Cooper University Health Care, Camden, N.J., who specializes in high-risk pregnancies, told the National Cancer Institute.

Oncologists generally agree that it’s safe for pregnant women to receive chemotherapy during the second and third trimesters. But for women with aggressive cancers that are diagnosed in the first trimester, chemotherapy is dangerous. For women who need immunotherapy, the risks of treatment remain unclear.

In these cases, Alice S. Mims, MD, must broach the possibility of terminating the pregnancy.

“Cancer is a very urgent condition,” says Dr. Mims, a hematology specialist at the Ohio State University Comprehensive Cancer Center, Columbus, who sees patients who are pregnant. “These women may have other children at home, and they want to do their best to fight the disease so they can be around for their family long term.”

Now the changing legal landscape on abortion will put hundreds more pregnant women with cancer in danger. In a recent viewpoint article published in JAMA Oncology, Jordyn Silverstein and Katherine Van Loon, MD, MPH, estimate that during the next year, up to 420 pregnant women living in states with restricted abortion access will face threats to their cancer care and potentially their life.

“The repercussions of overturning Roe v. Wade – and the failure of the Supreme Court to provide any guidance on exceptions related to the life and health of the mother – are potentially catastrophic for a subset of women who face a life-threating diagnosis of [pregnancy-associated cancer],” they write.

The choice Ms. DeSpain faced after her cervical cancer diagnosis was different. She was not pregnant at the time, but she was at a crossroads.

Although it was caught early, the cancer was aggressive. Her oncologist recommended that she undergo a hysterectomy – the surgery that would give her the best chance for a cancer-free future. It would also mean she could no longer become pregnant.

With a less invasive procedure, on the other hand, she could still carry a child, but she would face a much greater chance that the cancer would come back.

At 27, Ms. DeSpain was not ready to close the pregnancy door. She opted for a surgery in which part of her cervix was removed, allowing her to try for another baby.

But she faced a ticking clock in the event her cancer returned.

If you want to have a baby, “try soon,” her doctor warned.
 

A dead end

After her cancer surgery and a third miscarriage, Ms. DeSpain and her husband were surprised and excited when in late 2021 she again became pregnant.

The first trimester seemed blissfully uneventful. As the weeks passed, Finley’s heart started to beat.

But the 16-week ultrasound signaled a turning point. The sonographer was too quiet.

“This is really bad, isn’t it?” Ms. DeSpain asked her sonographer.

The doctors told her he wouldn’t survive. Finley had no heart chambers. His heart couldn’t pump blood properly. He was missing one kidney, and his brain was split in the back. With almost no amniotic fluid, her doctor said he would likely die in utero, crushed to death without support from the protective liquid.

She fought for him anyway. She sought specialty care, followed bed rest orders, and traveled 3 hours to Houston to enroll in a clinical trial.

But every road was a dead end.

Ultimately, testing revealed Finley had triploidy, and all lines led to one point.

“There were too many things wrong, too much wrong for them to fix,” says Ms. DeSpain, recalling the news from her doctor in Houston. “I was in shock. My husband was just sitting with his hands flat on the table, staring at nothing, shaking a little bit.”

However, Finley still had a heartbeat, making an abortion after 6 weeks a felony in Texas. Even a compassionate induction was now out of the question unless her death was imminent.

Ms. DeSpain called the abortion clinic in Albuquerque and made an appointment. She would have to wait 2 weeks because of an influx of pregnant patients coming from Texas.

She welcomed the wait … just in case she changed her mind.

“At that point I wanted to carry him as far as I could,” she says.

For those 2 weeks, Ms. DeSpain remained on bed rest. She cried all day every day. She worried that Finley was experiencing pain.

Through this process, her doctor’s support helped keep her grounded.

“She cried with us in her office and said, ‘I wish that you didn’t have to go, but I think you’re doing the right thing, doing what keeps you safest,’ “ Ms. DeSpain recalls.

Ms. DeSpain declined to share the name of her doctor out of fear that even expressing compassion for a patient’s safety could put the physician in legal jeopardy and provoke harassment.

That fear is warranted. Some doctors will be forced to choose between doing what is legal – even though the law is vague – and doing what is right for patients, says law professor Jamie Abrams, who was recently diagnosed with breast cancer.

To live in a world where there’s talk of criminalizing doctors for taking care of their patients, where there’s “this national movement to position some women to be shunned and exiled for seeking care that’s right for them, their health, and might save their life is staggering and beyond comprehension,” says Ms. Abrams, professor of law at the American University Washington College of Law.

Ms. Abrams, who was diagnosed with hormone receptor–positive invasive breast cancer the same day she read the leaked Supreme Court draft on the decision to end of Roe v. Wade, said that “overnight, I became a person who would need an abortion if I became pregnant, because my treatment would compromise a healthy birth or delay necessary cancer care.” Ms. Abrams was also told she could no longer use hormonal contraception.

Dr. Harris’s advice to clinicians is to try to do what they feel is best for patients, including referring them to centers that have legal resources and protections regarding abortions.

Dr. Mims agrees and recommends that doctors reach out to those with more resources and legal backing for support. “I would advise doctors in [states with restrictive laws] to familiarize themselves with available resources and organizations taking action to deal with questionable cases,” Dr. Mims says.
 

‘Baby killers work here’

Following her 10-hour drive to Albuquerque, Ms. DeSpain encountered lines of protesters at the clinic. They were holding signs that said, “Abortion is murder,” and “Baby killers work here.”

“Please don’t kill your baby – we have resources for you,” a woman screeched through a megaphone as Ms. DeSpain, nearly 20 weeks’ pregnant, stepped out of the car to enter the clinic.

“I remember turning around, looking at her and making eye contact, and yelling back, ‘My baby has triploidy – he is dying! He is going to suffocate if I carry him full term. You don’t know what you’re talking about!’ “

A nurse held her hand during the procedure.

“He said, ‘You’re doing great, you’re okay,’ “ she recalls. She knew there was a chance that Finley’s face would be crushed by contractions during labor because of the lack of amniotic fluid, but she hoped not. Ms. DeSpain longed for a photo.

There was no photo to take home the next day, but Ms. DeSpain did receive Finley’s footprints, and his heartbeat – as captured by the specialty team in Houston – lives on in a stuffed giraffe.

His ashes arrived a few weeks later.

By then, the Supreme Court draft had been leaked. Ms. DeSpain knew her predicament in Texas would soon affect women across the United States and make any future pregnancy attempt for her even more risky.

The weeks and months that followed were a blur of grief, anger, and medical testing.

But she received some good news. A second triploidy pregnancy was extremely unlikely.

Several weeks later, Ms. DeSpain got more good news.

“I had a follow-up cancer appointment, and everything was completely clear,” she says.

She remains hopeful that she will be able to give birth, but her doctor cautioned that it’s no longer safe to become pregnant in Texas.

“I need you to understand that if you get pregnant and you have complications, we can’t intervene unless the baby doesn’t have a heartbeat, even if it would save your life,” Ms. DeSpain recalls her doctor saying.

If Texas remains a dangerous place to be pregnant, Ms. DeSpain and her husband will have to move.

For now, Ms. DeSpain wants people to know her story and to continue to fight for her right to govern her body.

In a public post to Facebook, she laid bare her pregnancy journey.

“No one should have to share a story like mine to justify abortion,” she wrote. “My choice is not yours to judge, and my rights are not yours to gleefully take away.”

Ms. Abrams, Ms. DeSpain, Dr. Harris, Dr. Jain, and Dr. Mims have disclosed no relevant financial relationships.

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

The drive from Texas to the clinic in Albuquerque, N.M., took 10 hours. It was mid-April of this year. There wasn’t much to see along the mostly barren stretch, and there wasn’t much for Kailee DeSpain to do aside from think about where she was going and why.

Her husband was driving. She sensed his nervous glances toward the passenger seat where she sat struggling to quiet her thoughts.

No, she wasn’t having any pain, she told him. No, she wasn’t feeling like she did the last time or the two times before that.

This pregnancy was different. It was the first in which she feared for her own life. Her fetus – Finley – had triploidy, a rare chromosomal abnormality. Because of the condition, which affects 1%-3% of pregnancies, his heart, brain, and kidneys were not developing properly.

At 19 weeks, Finley was already struggling to draw breath from lungs squeezed inside an overcrowded chest cavity. Ms. DeSpain wanted nothing more than to carry Finley to term, hold him, meet him even for a moment before saying goodbye.

But his condition meant he would likely suffocate in utero well before that. And Ms. DeSpain knew that carrying him longer would likely raise her risk of bleeding and of her blood pressure increasing to dangerous highs.

“This could kill you,” her husband told her. “Do you realize you could die bringing a baby into this world who is not going to live? I don’t want to lose you.’”

Unlike her other pregnancies, the timing of this one and the decision she faced to end it put her health in even greater danger.
 

Imminent danger

On Sept. 1, 2021, a bill went into effect in Texas that banned abortions from as early as 6 weeks’ gestation. Texas Senate Bill 8 (SB8) became one of the most restrictive abortion laws in the country. It prohibited abortions whenever a fetal heartbeat, defined by lawmakers, could be detected on an ultrasound, often before many women knew they were pregnant.

The Texas abortion law was hardly the last word on the topic. Ms. DeSpain didn’t know it on her drive to New Mexico in April, but the U.S. Supreme Court was weeks away from overturning the landmark Roe v. Wade decision.

On June 24, the Supreme Court delivered its 6-3 ruling overturning Roe v. Wade, the 1973 case that granted women the right to abortion.

This decision set in motion “trigger laws” in some states – laws that essentially fully banned abortions. Those states included Ms. DeSpain’s home state of Texas, where abortion is now a felony except when the life of the mother is in peril.

However, legal definitions of what qualifies as “life-threatening” remain murky.

The law is unclear, says Lisa Harris, MD, PhD, professor in the department of obstetrics and gynecology at the University of Michigan, Ann Arbor. “What does the risk of death have to be, and how imminent must it be?” she asked in a recent editorial in the New England Journal of Medicine. Is 25% enough? 50%? Or does a woman have to be moments from dying?

“This whole thing makes me so angry,” says Shikha Jain, MD, a medical oncologist at University of Illinois Health, Chicago. “A patient may not be experiencing an emergency right now, but if we don’t take care of the situation, it may become an emergency in 2 hours or 2 days.”

Even before the Roe v. Wade decision, pregnancy had been a high-stakes endeavor for many women. In 2019, more than 750 women died from pregnancy-related events in the United States. In 2020, that number rose to 850. Each year dozens more suffer pregnancy-related events that require lifesaving interventions.

Now, in a post-Roe world, the number of maternal deaths will likely climb as more abortion bans take effect and fewer women have access to lifesaving care, experts say. A 2021 study that compared 2017 maternal mortality rates in states with different levels of abortion restrictions found that the rate of maternal mortality was almost two times higher in states that restricted abortion access compared with those that protected it – 28.5 per 100,000 women vs. 15.7.

Some women living in states with abortion bans won’t have the resources to cross state lines for care.

“This is just going to widen the health care disparities that are already so prevalent in this country,” Dr. Jain says.
 

Navigating a crossroads

Ms. DeSpain’s medical history reads like a checklist of pregnancy-related perils: chronic high blood pressure, persistent clotting problems, and a high risk of hemorrhage. She was also diagnosed with cervical cancer in 2020, which left her body more fragile.

Cardiovascular conditions, including hypertension and hemorrhage, are the leading causes of maternal mortality, responsible for more than one-third of pregnancy-related deaths. Preeclampsia, characterized by high blood pressure, accounts for more than 7% of maternal deaths in the United States. Although less common, genetic disorders, such as spinal muscular atrophy and triploidy, or cancer during pregnancy can put a mother and fetus at risk.

Cancer – which affects about 1 in 1,000 pregnant women and results in termination in as many as 28% of cases – brings sharp focus to the new dangers and complex decision-making patients and their doctors face as abortion bans take hold.

Before the Supreme Court decision, a pregnant woman with cancer was already facing great uncertainty. The decision to treat cancer during pregnancy involves “weighing the risk of exposing the fetus to medication vs. the risk to the mother’s untreated illness if you don’t expose the fetus to medication,” Elyce Cardonick, MD, an obstetrician at Cooper University Health Care, Camden, N.J., who specializes in high-risk pregnancies, told the National Cancer Institute.

Oncologists generally agree that it’s safe for pregnant women to receive chemotherapy during the second and third trimesters. But for women with aggressive cancers that are diagnosed in the first trimester, chemotherapy is dangerous. For women who need immunotherapy, the risks of treatment remain unclear.

In these cases, Alice S. Mims, MD, must broach the possibility of terminating the pregnancy.

“Cancer is a very urgent condition,” says Dr. Mims, a hematology specialist at the Ohio State University Comprehensive Cancer Center, Columbus, who sees patients who are pregnant. “These women may have other children at home, and they want to do their best to fight the disease so they can be around for their family long term.”

Now the changing legal landscape on abortion will put hundreds more pregnant women with cancer in danger. In a recent viewpoint article published in JAMA Oncology, Jordyn Silverstein and Katherine Van Loon, MD, MPH, estimate that during the next year, up to 420 pregnant women living in states with restricted abortion access will face threats to their cancer care and potentially their life.

“The repercussions of overturning Roe v. Wade – and the failure of the Supreme Court to provide any guidance on exceptions related to the life and health of the mother – are potentially catastrophic for a subset of women who face a life-threating diagnosis of [pregnancy-associated cancer],” they write.

The choice Ms. DeSpain faced after her cervical cancer diagnosis was different. She was not pregnant at the time, but she was at a crossroads.

Although it was caught early, the cancer was aggressive. Her oncologist recommended that she undergo a hysterectomy – the surgery that would give her the best chance for a cancer-free future. It would also mean she could no longer become pregnant.

With a less invasive procedure, on the other hand, she could still carry a child, but she would face a much greater chance that the cancer would come back.

At 27, Ms. DeSpain was not ready to close the pregnancy door. She opted for a surgery in which part of her cervix was removed, allowing her to try for another baby.

But she faced a ticking clock in the event her cancer returned.

If you want to have a baby, “try soon,” her doctor warned.
 

A dead end

After her cancer surgery and a third miscarriage, Ms. DeSpain and her husband were surprised and excited when in late 2021 she again became pregnant.

The first trimester seemed blissfully uneventful. As the weeks passed, Finley’s heart started to beat.

But the 16-week ultrasound signaled a turning point. The sonographer was too quiet.

“This is really bad, isn’t it?” Ms. DeSpain asked her sonographer.

The doctors told her he wouldn’t survive. Finley had no heart chambers. His heart couldn’t pump blood properly. He was missing one kidney, and his brain was split in the back. With almost no amniotic fluid, her doctor said he would likely die in utero, crushed to death without support from the protective liquid.

She fought for him anyway. She sought specialty care, followed bed rest orders, and traveled 3 hours to Houston to enroll in a clinical trial.

But every road was a dead end.

Ultimately, testing revealed Finley had triploidy, and all lines led to one point.

“There were too many things wrong, too much wrong for them to fix,” says Ms. DeSpain, recalling the news from her doctor in Houston. “I was in shock. My husband was just sitting with his hands flat on the table, staring at nothing, shaking a little bit.”

However, Finley still had a heartbeat, making an abortion after 6 weeks a felony in Texas. Even a compassionate induction was now out of the question unless her death was imminent.

Ms. DeSpain called the abortion clinic in Albuquerque and made an appointment. She would have to wait 2 weeks because of an influx of pregnant patients coming from Texas.

She welcomed the wait … just in case she changed her mind.

“At that point I wanted to carry him as far as I could,” she says.

For those 2 weeks, Ms. DeSpain remained on bed rest. She cried all day every day. She worried that Finley was experiencing pain.

Through this process, her doctor’s support helped keep her grounded.

“She cried with us in her office and said, ‘I wish that you didn’t have to go, but I think you’re doing the right thing, doing what keeps you safest,’ “ Ms. DeSpain recalls.

Ms. DeSpain declined to share the name of her doctor out of fear that even expressing compassion for a patient’s safety could put the physician in legal jeopardy and provoke harassment.

That fear is warranted. Some doctors will be forced to choose between doing what is legal – even though the law is vague – and doing what is right for patients, says law professor Jamie Abrams, who was recently diagnosed with breast cancer.

To live in a world where there’s talk of criminalizing doctors for taking care of their patients, where there’s “this national movement to position some women to be shunned and exiled for seeking care that’s right for them, their health, and might save their life is staggering and beyond comprehension,” says Ms. Abrams, professor of law at the American University Washington College of Law.

Ms. Abrams, who was diagnosed with hormone receptor–positive invasive breast cancer the same day she read the leaked Supreme Court draft on the decision to end of Roe v. Wade, said that “overnight, I became a person who would need an abortion if I became pregnant, because my treatment would compromise a healthy birth or delay necessary cancer care.” Ms. Abrams was also told she could no longer use hormonal contraception.

Dr. Harris’s advice to clinicians is to try to do what they feel is best for patients, including referring them to centers that have legal resources and protections regarding abortions.

Dr. Mims agrees and recommends that doctors reach out to those with more resources and legal backing for support. “I would advise doctors in [states with restrictive laws] to familiarize themselves with available resources and organizations taking action to deal with questionable cases,” Dr. Mims says.
 

‘Baby killers work here’

Following her 10-hour drive to Albuquerque, Ms. DeSpain encountered lines of protesters at the clinic. They were holding signs that said, “Abortion is murder,” and “Baby killers work here.”

“Please don’t kill your baby – we have resources for you,” a woman screeched through a megaphone as Ms. DeSpain, nearly 20 weeks’ pregnant, stepped out of the car to enter the clinic.

“I remember turning around, looking at her and making eye contact, and yelling back, ‘My baby has triploidy – he is dying! He is going to suffocate if I carry him full term. You don’t know what you’re talking about!’ “

A nurse held her hand during the procedure.

“He said, ‘You’re doing great, you’re okay,’ “ she recalls. She knew there was a chance that Finley’s face would be crushed by contractions during labor because of the lack of amniotic fluid, but she hoped not. Ms. DeSpain longed for a photo.

There was no photo to take home the next day, but Ms. DeSpain did receive Finley’s footprints, and his heartbeat – as captured by the specialty team in Houston – lives on in a stuffed giraffe.

His ashes arrived a few weeks later.

By then, the Supreme Court draft had been leaked. Ms. DeSpain knew her predicament in Texas would soon affect women across the United States and make any future pregnancy attempt for her even more risky.

The weeks and months that followed were a blur of grief, anger, and medical testing.

But she received some good news. A second triploidy pregnancy was extremely unlikely.

Several weeks later, Ms. DeSpain got more good news.

“I had a follow-up cancer appointment, and everything was completely clear,” she says.

She remains hopeful that she will be able to give birth, but her doctor cautioned that it’s no longer safe to become pregnant in Texas.

“I need you to understand that if you get pregnant and you have complications, we can’t intervene unless the baby doesn’t have a heartbeat, even if it would save your life,” Ms. DeSpain recalls her doctor saying.

If Texas remains a dangerous place to be pregnant, Ms. DeSpain and her husband will have to move.

For now, Ms. DeSpain wants people to know her story and to continue to fight for her right to govern her body.

In a public post to Facebook, she laid bare her pregnancy journey.

“No one should have to share a story like mine to justify abortion,” she wrote. “My choice is not yours to judge, and my rights are not yours to gleefully take away.”

Ms. Abrams, Ms. DeSpain, Dr. Harris, Dr. Jain, and Dr. Mims have disclosed no relevant financial relationships.

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

The drive from Texas to the clinic in Albuquerque, N.M., took 10 hours. It was mid-April of this year. There wasn’t much to see along the mostly barren stretch, and there wasn’t much for Kailee DeSpain to do aside from think about where she was going and why.

Her husband was driving. She sensed his nervous glances toward the passenger seat where she sat struggling to quiet her thoughts.

No, she wasn’t having any pain, she told him. No, she wasn’t feeling like she did the last time or the two times before that.

This pregnancy was different. It was the first in which she feared for her own life. Her fetus – Finley – had triploidy, a rare chromosomal abnormality. Because of the condition, which affects 1%-3% of pregnancies, his heart, brain, and kidneys were not developing properly.

At 19 weeks, Finley was already struggling to draw breath from lungs squeezed inside an overcrowded chest cavity. Ms. DeSpain wanted nothing more than to carry Finley to term, hold him, meet him even for a moment before saying goodbye.

But his condition meant he would likely suffocate in utero well before that. And Ms. DeSpain knew that carrying him longer would likely raise her risk of bleeding and of her blood pressure increasing to dangerous highs.

“This could kill you,” her husband told her. “Do you realize you could die bringing a baby into this world who is not going to live? I don’t want to lose you.’”

Unlike her other pregnancies, the timing of this one and the decision she faced to end it put her health in even greater danger.
 

Imminent danger

On Sept. 1, 2021, a bill went into effect in Texas that banned abortions from as early as 6 weeks’ gestation. Texas Senate Bill 8 (SB8) became one of the most restrictive abortion laws in the country. It prohibited abortions whenever a fetal heartbeat, defined by lawmakers, could be detected on an ultrasound, often before many women knew they were pregnant.

The Texas abortion law was hardly the last word on the topic. Ms. DeSpain didn’t know it on her drive to New Mexico in April, but the U.S. Supreme Court was weeks away from overturning the landmark Roe v. Wade decision.

On June 24, the Supreme Court delivered its 6-3 ruling overturning Roe v. Wade, the 1973 case that granted women the right to abortion.

This decision set in motion “trigger laws” in some states – laws that essentially fully banned abortions. Those states included Ms. DeSpain’s home state of Texas, where abortion is now a felony except when the life of the mother is in peril.

However, legal definitions of what qualifies as “life-threatening” remain murky.

The law is unclear, says Lisa Harris, MD, PhD, professor in the department of obstetrics and gynecology at the University of Michigan, Ann Arbor. “What does the risk of death have to be, and how imminent must it be?” she asked in a recent editorial in the New England Journal of Medicine. Is 25% enough? 50%? Or does a woman have to be moments from dying?

“This whole thing makes me so angry,” says Shikha Jain, MD, a medical oncologist at University of Illinois Health, Chicago. “A patient may not be experiencing an emergency right now, but if we don’t take care of the situation, it may become an emergency in 2 hours or 2 days.”

Even before the Roe v. Wade decision, pregnancy had been a high-stakes endeavor for many women. In 2019, more than 750 women died from pregnancy-related events in the United States. In 2020, that number rose to 850. Each year dozens more suffer pregnancy-related events that require lifesaving interventions.

Now, in a post-Roe world, the number of maternal deaths will likely climb as more abortion bans take effect and fewer women have access to lifesaving care, experts say. A 2021 study that compared 2017 maternal mortality rates in states with different levels of abortion restrictions found that the rate of maternal mortality was almost two times higher in states that restricted abortion access compared with those that protected it – 28.5 per 100,000 women vs. 15.7.

Some women living in states with abortion bans won’t have the resources to cross state lines for care.

“This is just going to widen the health care disparities that are already so prevalent in this country,” Dr. Jain says.
 

Navigating a crossroads

Ms. DeSpain’s medical history reads like a checklist of pregnancy-related perils: chronic high blood pressure, persistent clotting problems, and a high risk of hemorrhage. She was also diagnosed with cervical cancer in 2020, which left her body more fragile.

Cardiovascular conditions, including hypertension and hemorrhage, are the leading causes of maternal mortality, responsible for more than one-third of pregnancy-related deaths. Preeclampsia, characterized by high blood pressure, accounts for more than 7% of maternal deaths in the United States. Although less common, genetic disorders, such as spinal muscular atrophy and triploidy, or cancer during pregnancy can put a mother and fetus at risk.

Cancer – which affects about 1 in 1,000 pregnant women and results in termination in as many as 28% of cases – brings sharp focus to the new dangers and complex decision-making patients and their doctors face as abortion bans take hold.

Before the Supreme Court decision, a pregnant woman with cancer was already facing great uncertainty. The decision to treat cancer during pregnancy involves “weighing the risk of exposing the fetus to medication vs. the risk to the mother’s untreated illness if you don’t expose the fetus to medication,” Elyce Cardonick, MD, an obstetrician at Cooper University Health Care, Camden, N.J., who specializes in high-risk pregnancies, told the National Cancer Institute.

Oncologists generally agree that it’s safe for pregnant women to receive chemotherapy during the second and third trimesters. But for women with aggressive cancers that are diagnosed in the first trimester, chemotherapy is dangerous. For women who need immunotherapy, the risks of treatment remain unclear.

In these cases, Alice S. Mims, MD, must broach the possibility of terminating the pregnancy.

“Cancer is a very urgent condition,” says Dr. Mims, a hematology specialist at the Ohio State University Comprehensive Cancer Center, Columbus, who sees patients who are pregnant. “These women may have other children at home, and they want to do their best to fight the disease so they can be around for their family long term.”

Now the changing legal landscape on abortion will put hundreds more pregnant women with cancer in danger. In a recent viewpoint article published in JAMA Oncology, Jordyn Silverstein and Katherine Van Loon, MD, MPH, estimate that during the next year, up to 420 pregnant women living in states with restricted abortion access will face threats to their cancer care and potentially their life.

“The repercussions of overturning Roe v. Wade – and the failure of the Supreme Court to provide any guidance on exceptions related to the life and health of the mother – are potentially catastrophic for a subset of women who face a life-threating diagnosis of [pregnancy-associated cancer],” they write.

The choice Ms. DeSpain faced after her cervical cancer diagnosis was different. She was not pregnant at the time, but she was at a crossroads.

Although it was caught early, the cancer was aggressive. Her oncologist recommended that she undergo a hysterectomy – the surgery that would give her the best chance for a cancer-free future. It would also mean she could no longer become pregnant.

With a less invasive procedure, on the other hand, she could still carry a child, but she would face a much greater chance that the cancer would come back.

At 27, Ms. DeSpain was not ready to close the pregnancy door. She opted for a surgery in which part of her cervix was removed, allowing her to try for another baby.

But she faced a ticking clock in the event her cancer returned.

If you want to have a baby, “try soon,” her doctor warned.
 

A dead end

After her cancer surgery and a third miscarriage, Ms. DeSpain and her husband were surprised and excited when in late 2021 she again became pregnant.

The first trimester seemed blissfully uneventful. As the weeks passed, Finley’s heart started to beat.

But the 16-week ultrasound signaled a turning point. The sonographer was too quiet.

“This is really bad, isn’t it?” Ms. DeSpain asked her sonographer.

The doctors told her he wouldn’t survive. Finley had no heart chambers. His heart couldn’t pump blood properly. He was missing one kidney, and his brain was split in the back. With almost no amniotic fluid, her doctor said he would likely die in utero, crushed to death without support from the protective liquid.

She fought for him anyway. She sought specialty care, followed bed rest orders, and traveled 3 hours to Houston to enroll in a clinical trial.

But every road was a dead end.

Ultimately, testing revealed Finley had triploidy, and all lines led to one point.

“There were too many things wrong, too much wrong for them to fix,” says Ms. DeSpain, recalling the news from her doctor in Houston. “I was in shock. My husband was just sitting with his hands flat on the table, staring at nothing, shaking a little bit.”

However, Finley still had a heartbeat, making an abortion after 6 weeks a felony in Texas. Even a compassionate induction was now out of the question unless her death was imminent.

Ms. DeSpain called the abortion clinic in Albuquerque and made an appointment. She would have to wait 2 weeks because of an influx of pregnant patients coming from Texas.

She welcomed the wait … just in case she changed her mind.

“At that point I wanted to carry him as far as I could,” she says.

For those 2 weeks, Ms. DeSpain remained on bed rest. She cried all day every day. She worried that Finley was experiencing pain.

Through this process, her doctor’s support helped keep her grounded.

“She cried with us in her office and said, ‘I wish that you didn’t have to go, but I think you’re doing the right thing, doing what keeps you safest,’ “ Ms. DeSpain recalls.

Ms. DeSpain declined to share the name of her doctor out of fear that even expressing compassion for a patient’s safety could put the physician in legal jeopardy and provoke harassment.

That fear is warranted. Some doctors will be forced to choose between doing what is legal – even though the law is vague – and doing what is right for patients, says law professor Jamie Abrams, who was recently diagnosed with breast cancer.

To live in a world where there’s talk of criminalizing doctors for taking care of their patients, where there’s “this national movement to position some women to be shunned and exiled for seeking care that’s right for them, their health, and might save their life is staggering and beyond comprehension,” says Ms. Abrams, professor of law at the American University Washington College of Law.

Ms. Abrams, who was diagnosed with hormone receptor–positive invasive breast cancer the same day she read the leaked Supreme Court draft on the decision to end of Roe v. Wade, said that “overnight, I became a person who would need an abortion if I became pregnant, because my treatment would compromise a healthy birth or delay necessary cancer care.” Ms. Abrams was also told she could no longer use hormonal contraception.

Dr. Harris’s advice to clinicians is to try to do what they feel is best for patients, including referring them to centers that have legal resources and protections regarding abortions.

Dr. Mims agrees and recommends that doctors reach out to those with more resources and legal backing for support. “I would advise doctors in [states with restrictive laws] to familiarize themselves with available resources and organizations taking action to deal with questionable cases,” Dr. Mims says.
 

‘Baby killers work here’

Following her 10-hour drive to Albuquerque, Ms. DeSpain encountered lines of protesters at the clinic. They were holding signs that said, “Abortion is murder,” and “Baby killers work here.”

“Please don’t kill your baby – we have resources for you,” a woman screeched through a megaphone as Ms. DeSpain, nearly 20 weeks’ pregnant, stepped out of the car to enter the clinic.

“I remember turning around, looking at her and making eye contact, and yelling back, ‘My baby has triploidy – he is dying! He is going to suffocate if I carry him full term. You don’t know what you’re talking about!’ “

A nurse held her hand during the procedure.

“He said, ‘You’re doing great, you’re okay,’ “ she recalls. She knew there was a chance that Finley’s face would be crushed by contractions during labor because of the lack of amniotic fluid, but she hoped not. Ms. DeSpain longed for a photo.

There was no photo to take home the next day, but Ms. DeSpain did receive Finley’s footprints, and his heartbeat – as captured by the specialty team in Houston – lives on in a stuffed giraffe.

His ashes arrived a few weeks later.

By then, the Supreme Court draft had been leaked. Ms. DeSpain knew her predicament in Texas would soon affect women across the United States and make any future pregnancy attempt for her even more risky.

The weeks and months that followed were a blur of grief, anger, and medical testing.

But she received some good news. A second triploidy pregnancy was extremely unlikely.

Several weeks later, Ms. DeSpain got more good news.

“I had a follow-up cancer appointment, and everything was completely clear,” she says.

She remains hopeful that she will be able to give birth, but her doctor cautioned that it’s no longer safe to become pregnant in Texas.

“I need you to understand that if you get pregnant and you have complications, we can’t intervene unless the baby doesn’t have a heartbeat, even if it would save your life,” Ms. DeSpain recalls her doctor saying.

If Texas remains a dangerous place to be pregnant, Ms. DeSpain and her husband will have to move.

For now, Ms. DeSpain wants people to know her story and to continue to fight for her right to govern her body.

In a public post to Facebook, she laid bare her pregnancy journey.

“No one should have to share a story like mine to justify abortion,” she wrote. “My choice is not yours to judge, and my rights are not yours to gleefully take away.”

Ms. Abrams, Ms. DeSpain, Dr. Harris, Dr. Jain, and Dr. Mims have disclosed no relevant financial relationships.

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