Donavyn Coffey

In seconds, Ravi Parikh, MD, an oncologist at the Emory University School of Medicine in Atlanta, had a summary of his patient’s entire medical history. Normally, Parikh skimmed the cumbersome files before seeing a patient. However, the artificial intelligence (AI) tool his institution was testing could list the highlights he needed in a fraction of the time.

“On the whole, I like it ... it saves me time,” Parikh said of the tool. “But I’d be lying if I told you it was perfect all the time. It’s interpreting the [patient] history in some ways that may be inaccurate,” he said.

Within the first week of testing the tool, Parikh started to notice that the large language model (LLM) made a particular mistake in his patients with prostate cancer. If their prostate-specific antigen test results came back slightly elevated — which is part of normal variation — the LLM recorded it as disease progression. Because Parikh reviews all his notes — with or without using an AI tool — after a visit, he easily caught the mistake before it was added to the chart. “The problem, I think, is if these mistakes go under the hood,” he said.

In the data science world, these mistakes are called hallucinations. And a growing body of research suggests they’re happening more frequently than is safe for healthcare. The industry promised LLMs would alleviate administrative burden and reduce physician burnout. But so far, studies show these AI-tool mistakes often create more work for doctors, not less. To truly help physicians and be safe for patients, some experts say healthcare needs to build its own LLMs from the ground up. And all agree that the field desperately needs a way to vet these algorithms more thoroughly.
 

Prone to Error

Right now, “I think the industry is focused on taking existing LLMs and forcing them into usage for healthcare,” said Nigam H. Shah, MBBS, PhD, chief data scientist for Stanford Health. However, the value of deploying general LLMs in the healthcare space is questionable. “People are starting to wonder if we’re using these tools wrong,” he told this news organization.

In 2023, Shah and his colleagues evaluated seven LLMs on their ability to answer electronic health record–based questions. For realistic tasks, the error rate in the best cases was about 35%, he said. “To me, that rate seems a bit high ... to adopt for routine use.”

A study earlier this year by the UC San Diego School of Medicine showed that using LLMs to respond to patient messages increased the time doctors spent on messages. And this summer, a study by the clinical AI firm Mendel found that when GPT-4o or Llama-3 were used to summarize patient medical records, almost every summary contained at least one type of hallucination.

“We’ve seen cases where a patient does have drug allergies, but the system says ‘no known drug allergies’ ” in the medical history summary, said Wael Salloum, PhD, cofounder and chief science officer at Mendel. “That’s a serious hallucination.” And if physicians have to constantly verify what the system is telling them, that “defeats the purpose [of summarization],” he said.
 

A Higher Quality Diet

Part of the trouble with LLMs is that there’s just not enough high-quality information to feed them. The algorithms are insatiable, requiring vast swaths of data for training. GPT-3.5, for instance, was trained on 570 GB of data from the internet, more than 300 billion words. And to train GPT-4o, OpenAI reportedly transcribed more than 1 million hours of YouTube content.

However, the strategies that built these general LLMs don’t always translate well to healthcare. The internet is full of low-quality or misleading health information from wellness sites and supplement advertisements. And even data that are trustworthy, like the millions of clinical studies and the US Food and Drug Administration (FDA) statements, can be outdated, Salloum said. And “an LLM in training can’t distinguish good from bad,” he added.

The good news is that clinicians don’t rely on controversial information in the real world. Medical knowledge is standardized. “Healthcare is a domain rich with explicit knowledge,” Salloum said. So there’s potential to build a more reliable LLM that is guided by robust medical standards and guidelines.

It’s possible that healthcare could use small language models, which are LLM’s pocket-sized cousins, and perform tasks needing only bite-sized datasets requiring fewer resources and easier fine-tuning, according to Microsoft’s website. Shah said training these smaller models on real medical data might be an option, like an LLM meant to respond to patient messages that could be trained with real messages sent by physicians.

Several groups are already working on databases of standardized human medical knowledge or real physician responses. “Perhaps that will work better than using LLMs trained on the general internet. Those studies need to be done,” Shah said.

Jon Tamir, assistant professor of electrical and computer engineering and co-lead of the AI Health Lab at The University of Texas at Austin, said, “The community has recognized that we are entering a new era of AI where the dataset itself is the most important aspect. We need training sets that are highly curated and highly specialized.

“If the dataset is highly specialized, it will definitely help reduce hallucinations,” he said.
 

Cutting Overconfidence

A major problem with LLM mistakes is that they are often hard to detect. Hallucinations can be highly convincing even if they’re highly inaccurate, according to Tamir.

When Shah, for instance, was recently testing an LLM on de-identified patient data, he asked the LLM which blood test the patient last had. The model responded with “complete blood count [CBC].” But when he asked for the results, the model gave him white blood count and other values. “Turns out that record did not have a CBC done at all! The result was entirely made up,” he said.

Making healthcare LLMs safer and more reliable will mean training AI to acknowledge potential mistakes and uncertainty. Existing LLMs are trained to project confidence and produce a lot of answers, even when there isn’t one, Salloum said. They rarely respond with “I don’t know” even when their prediction has low confidence, he added.

Healthcare stands to benefit from a system that highlights uncertainty and potential errors. For instance, if a patient’s history shows they have smoked, stopped smoking, vaped, and started smoking again. The LLM might call them a smoker but flag the comment as uncertain because the chronology is complicated, Salloum said.

Tamir added that this strategy could improve LLM and doctor collaboration by honing in on where human expertise is needed most.
 

Too Little Evaluation

For any improvement strategy to work, LLMs — and all AI-assisted healthcare tools — first need a better evaluation framework. So far, LLMs have “been used in really exciting ways but not really well-vetted ways,” Tamir said.

While some AI-assisted tools, particularly in medical imaging, have undergone rigorous FDA evaluations and earned approval, most haven’t. And because the FDA only regulates algorithms that are considered medical devices, Parikh said that most LLMs used for administrative tasks and efficiency don’t fall under the regulatory agency’s purview.

But these algorithms still have access to patient information and can directly influence patient and doctor decisions. Third-party regulatory agencies are expected to emerge, but it’s still unclear who those will be. Before developers can build a safer and more efficient LLM for healthcare, they’ll need better guidelines and guardrails. “Unless we figure out evaluation, how would we know whether the healthcare-appropriate large language models are better or worse?” Shah asked.
 

A version of this article appeared on Medscape.com.

In seconds, Ravi Parikh, MD, an oncologist at the Emory University School of Medicine in Atlanta, had a summary of his patient’s entire medical history. Normally, Parikh skimmed the cumbersome files before seeing a patient. However, the artificial intelligence (AI) tool his institution was testing could list the highlights he needed in a fraction of the time.

“On the whole, I like it ... it saves me time,” Parikh said of the tool. “But I’d be lying if I told you it was perfect all the time. It’s interpreting the [patient] history in some ways that may be inaccurate,” he said.

Within the first week of testing the tool, Parikh started to notice that the large language model (LLM) made a particular mistake in his patients with prostate cancer. If their prostate-specific antigen test results came back slightly elevated — which is part of normal variation — the LLM recorded it as disease progression. Because Parikh reviews all his notes — with or without using an AI tool — after a visit, he easily caught the mistake before it was added to the chart. “The problem, I think, is if these mistakes go under the hood,” he said.

In the data science world, these mistakes are called hallucinations. And a growing body of research suggests they’re happening more frequently than is safe for healthcare. The industry promised LLMs would alleviate administrative burden and reduce physician burnout. But so far, studies show these AI-tool mistakes often create more work for doctors, not less. To truly help physicians and be safe for patients, some experts say healthcare needs to build its own LLMs from the ground up. And all agree that the field desperately needs a way to vet these algorithms more thoroughly.
 

Prone to Error

Right now, “I think the industry is focused on taking existing LLMs and forcing them into usage for healthcare,” said Nigam H. Shah, MBBS, PhD, chief data scientist for Stanford Health. However, the value of deploying general LLMs in the healthcare space is questionable. “People are starting to wonder if we’re using these tools wrong,” he told this news organization.

In 2023, Shah and his colleagues evaluated seven LLMs on their ability to answer electronic health record–based questions. For realistic tasks, the error rate in the best cases was about 35%, he said. “To me, that rate seems a bit high ... to adopt for routine use.”

A study earlier this year by the UC San Diego School of Medicine showed that using LLMs to respond to patient messages increased the time doctors spent on messages. And this summer, a study by the clinical AI firm Mendel found that when GPT-4o or Llama-3 were used to summarize patient medical records, almost every summary contained at least one type of hallucination.

“We’ve seen cases where a patient does have drug allergies, but the system says ‘no known drug allergies’ ” in the medical history summary, said Wael Salloum, PhD, cofounder and chief science officer at Mendel. “That’s a serious hallucination.” And if physicians have to constantly verify what the system is telling them, that “defeats the purpose [of summarization],” he said.
 

A Higher Quality Diet

Part of the trouble with LLMs is that there’s just not enough high-quality information to feed them. The algorithms are insatiable, requiring vast swaths of data for training. GPT-3.5, for instance, was trained on 570 GB of data from the internet, more than 300 billion words. And to train GPT-4o, OpenAI reportedly transcribed more than 1 million hours of YouTube content.

However, the strategies that built these general LLMs don’t always translate well to healthcare. The internet is full of low-quality or misleading health information from wellness sites and supplement advertisements. And even data that are trustworthy, like the millions of clinical studies and the US Food and Drug Administration (FDA) statements, can be outdated, Salloum said. And “an LLM in training can’t distinguish good from bad,” he added.

The good news is that clinicians don’t rely on controversial information in the real world. Medical knowledge is standardized. “Healthcare is a domain rich with explicit knowledge,” Salloum said. So there’s potential to build a more reliable LLM that is guided by robust medical standards and guidelines.

It’s possible that healthcare could use small language models, which are LLM’s pocket-sized cousins, and perform tasks needing only bite-sized datasets requiring fewer resources and easier fine-tuning, according to Microsoft’s website. Shah said training these smaller models on real medical data might be an option, like an LLM meant to respond to patient messages that could be trained with real messages sent by physicians.

Several groups are already working on databases of standardized human medical knowledge or real physician responses. “Perhaps that will work better than using LLMs trained on the general internet. Those studies need to be done,” Shah said.

Jon Tamir, assistant professor of electrical and computer engineering and co-lead of the AI Health Lab at The University of Texas at Austin, said, “The community has recognized that we are entering a new era of AI where the dataset itself is the most important aspect. We need training sets that are highly curated and highly specialized.

“If the dataset is highly specialized, it will definitely help reduce hallucinations,” he said.
 

Cutting Overconfidence

A major problem with LLM mistakes is that they are often hard to detect. Hallucinations can be highly convincing even if they’re highly inaccurate, according to Tamir.

When Shah, for instance, was recently testing an LLM on de-identified patient data, he asked the LLM which blood test the patient last had. The model responded with “complete blood count [CBC].” But when he asked for the results, the model gave him white blood count and other values. “Turns out that record did not have a CBC done at all! The result was entirely made up,” he said.

Making healthcare LLMs safer and more reliable will mean training AI to acknowledge potential mistakes and uncertainty. Existing LLMs are trained to project confidence and produce a lot of answers, even when there isn’t one, Salloum said. They rarely respond with “I don’t know” even when their prediction has low confidence, he added.

Healthcare stands to benefit from a system that highlights uncertainty and potential errors. For instance, if a patient’s history shows they have smoked, stopped smoking, vaped, and started smoking again. The LLM might call them a smoker but flag the comment as uncertain because the chronology is complicated, Salloum said.

Tamir added that this strategy could improve LLM and doctor collaboration by honing in on where human expertise is needed most.
 

Too Little Evaluation

For any improvement strategy to work, LLMs — and all AI-assisted healthcare tools — first need a better evaluation framework. So far, LLMs have “been used in really exciting ways but not really well-vetted ways,” Tamir said.

While some AI-assisted tools, particularly in medical imaging, have undergone rigorous FDA evaluations and earned approval, most haven’t. And because the FDA only regulates algorithms that are considered medical devices, Parikh said that most LLMs used for administrative tasks and efficiency don’t fall under the regulatory agency’s purview.

But these algorithms still have access to patient information and can directly influence patient and doctor decisions. Third-party regulatory agencies are expected to emerge, but it’s still unclear who those will be. Before developers can build a safer and more efficient LLM for healthcare, they’ll need better guidelines and guardrails. “Unless we figure out evaluation, how would we know whether the healthcare-appropriate large language models are better or worse?” Shah asked.
 

A version of this article appeared on Medscape.com.

In seconds, Ravi Parikh, MD, an oncologist at the Emory University School of Medicine in Atlanta, had a summary of his patient’s entire medical history. Normally, Parikh skimmed the cumbersome files before seeing a patient. However, the artificial intelligence (AI) tool his institution was testing could list the highlights he needed in a fraction of the time.

“On the whole, I like it ... it saves me time,” Parikh said of the tool. “But I’d be lying if I told you it was perfect all the time. It’s interpreting the [patient] history in some ways that may be inaccurate,” he said.

Within the first week of testing the tool, Parikh started to notice that the large language model (LLM) made a particular mistake in his patients with prostate cancer. If their prostate-specific antigen test results came back slightly elevated — which is part of normal variation — the LLM recorded it as disease progression. Because Parikh reviews all his notes — with or without using an AI tool — after a visit, he easily caught the mistake before it was added to the chart. “The problem, I think, is if these mistakes go under the hood,” he said.

In the data science world, these mistakes are called hallucinations. And a growing body of research suggests they’re happening more frequently than is safe for healthcare. The industry promised LLMs would alleviate administrative burden and reduce physician burnout. But so far, studies show these AI-tool mistakes often create more work for doctors, not less. To truly help physicians and be safe for patients, some experts say healthcare needs to build its own LLMs from the ground up. And all agree that the field desperately needs a way to vet these algorithms more thoroughly.
 

Prone to Error

Right now, “I think the industry is focused on taking existing LLMs and forcing them into usage for healthcare,” said Nigam H. Shah, MBBS, PhD, chief data scientist for Stanford Health. However, the value of deploying general LLMs in the healthcare space is questionable. “People are starting to wonder if we’re using these tools wrong,” he told this news organization.

In 2023, Shah and his colleagues evaluated seven LLMs on their ability to answer electronic health record–based questions. For realistic tasks, the error rate in the best cases was about 35%, he said. “To me, that rate seems a bit high ... to adopt for routine use.”

A study earlier this year by the UC San Diego School of Medicine showed that using LLMs to respond to patient messages increased the time doctors spent on messages. And this summer, a study by the clinical AI firm Mendel found that when GPT-4o or Llama-3 were used to summarize patient medical records, almost every summary contained at least one type of hallucination.

“We’ve seen cases where a patient does have drug allergies, but the system says ‘no known drug allergies’ ” in the medical history summary, said Wael Salloum, PhD, cofounder and chief science officer at Mendel. “That’s a serious hallucination.” And if physicians have to constantly verify what the system is telling them, that “defeats the purpose [of summarization],” he said.
 

A Higher Quality Diet

Part of the trouble with LLMs is that there’s just not enough high-quality information to feed them. The algorithms are insatiable, requiring vast swaths of data for training. GPT-3.5, for instance, was trained on 570 GB of data from the internet, more than 300 billion words. And to train GPT-4o, OpenAI reportedly transcribed more than 1 million hours of YouTube content.

However, the strategies that built these general LLMs don’t always translate well to healthcare. The internet is full of low-quality or misleading health information from wellness sites and supplement advertisements. And even data that are trustworthy, like the millions of clinical studies and the US Food and Drug Administration (FDA) statements, can be outdated, Salloum said. And “an LLM in training can’t distinguish good from bad,” he added.

The good news is that clinicians don’t rely on controversial information in the real world. Medical knowledge is standardized. “Healthcare is a domain rich with explicit knowledge,” Salloum said. So there’s potential to build a more reliable LLM that is guided by robust medical standards and guidelines.

It’s possible that healthcare could use small language models, which are LLM’s pocket-sized cousins, and perform tasks needing only bite-sized datasets requiring fewer resources and easier fine-tuning, according to Microsoft’s website. Shah said training these smaller models on real medical data might be an option, like an LLM meant to respond to patient messages that could be trained with real messages sent by physicians.

Several groups are already working on databases of standardized human medical knowledge or real physician responses. “Perhaps that will work better than using LLMs trained on the general internet. Those studies need to be done,” Shah said.

Jon Tamir, assistant professor of electrical and computer engineering and co-lead of the AI Health Lab at The University of Texas at Austin, said, “The community has recognized that we are entering a new era of AI where the dataset itself is the most important aspect. We need training sets that are highly curated and highly specialized.

“If the dataset is highly specialized, it will definitely help reduce hallucinations,” he said.
 

Cutting Overconfidence

A major problem with LLM mistakes is that they are often hard to detect. Hallucinations can be highly convincing even if they’re highly inaccurate, according to Tamir.

When Shah, for instance, was recently testing an LLM on de-identified patient data, he asked the LLM which blood test the patient last had. The model responded with “complete blood count [CBC].” But when he asked for the results, the model gave him white blood count and other values. “Turns out that record did not have a CBC done at all! The result was entirely made up,” he said.

Making healthcare LLMs safer and more reliable will mean training AI to acknowledge potential mistakes and uncertainty. Existing LLMs are trained to project confidence and produce a lot of answers, even when there isn’t one, Salloum said. They rarely respond with “I don’t know” even when their prediction has low confidence, he added.

Healthcare stands to benefit from a system that highlights uncertainty and potential errors. For instance, if a patient’s history shows they have smoked, stopped smoking, vaped, and started smoking again. The LLM might call them a smoker but flag the comment as uncertain because the chronology is complicated, Salloum said.

Tamir added that this strategy could improve LLM and doctor collaboration by honing in on where human expertise is needed most.
 

Too Little Evaluation

For any improvement strategy to work, LLMs — and all AI-assisted healthcare tools — first need a better evaluation framework. So far, LLMs have “been used in really exciting ways but not really well-vetted ways,” Tamir said.

While some AI-assisted tools, particularly in medical imaging, have undergone rigorous FDA evaluations and earned approval, most haven’t. And because the FDA only regulates algorithms that are considered medical devices, Parikh said that most LLMs used for administrative tasks and efficiency don’t fall under the regulatory agency’s purview.

But these algorithms still have access to patient information and can directly influence patient and doctor decisions. Third-party regulatory agencies are expected to emerge, but it’s still unclear who those will be. Before developers can build a safer and more efficient LLM for healthcare, they’ll need better guidelines and guardrails. “Unless we figure out evaluation, how would we know whether the healthcare-appropriate large language models are better or worse?” Shah asked.
 

A version of this article appeared on Medscape.com.

Gitanjali Srivastava, MD, professor of medicine, pediatrics, and surgery, and medical director of obesity medicine at Vanderbilt University School of Medicine in Nashville, Tennessee, was nearly 10 years into practicing pediatric medicine when she graduated from the obesity medicine fellowship at Massachusetts General Hospital in Boston in 2013. “We were the very first sort of fellows to speak of then; there were no standards or curriculum,” she said.

Obesity was already epidemic, but stigma and bias were still pervasive in the medical community and within the public. After graduating, Dr. Srivastava spent months vying for a position with hospital CEOs. She traveled across the country explaining the specialty and its value, going into detail about the budget, business model, space requirement, and revenue potential of obesity medicine. 

Today marks a very different era.

Obesity medicine is exploding. Patients are spilling into doctors’ offices looking for obesity treatment. Healthcare systems are seeking out obesity specialists and building metabolic health centers. Since 2020, the number of doctors board-certified by the American Board of Obesity Medicine has nearly doubled, and the number of obesity medicine fellowships across the country has more than doubled. Next month, another 2115 doctors from primary care, surgery, orthopedics, pediatrics, fertility, endocrinology, and beyond will sit for the 2024 exam. The once niche specialty is quickly becoming intertwined with most of modern medicine.
 

The Need to Treat

It’s no mystery that the rapid expansion of obesity medicine coincides with the US Food and Drug Administration’s approval of GLP-1 injections. The drugs’ radical weight loss properties have captured headlines and driven up patient demand. Meanwhile, doctors are finally able to offer effective treatment for a disease that affects 40% of US adults.

“We are finally treating it as a chronic disease, not as a lifestyle,” said Marcio Griebeler, MD, director of the obesity medicine fellowship at the Cleveland Clinic. And “I think it’s fulfilling for physicians,” he said. 

For so long, the advice for obesity was about lifestyle. Move more, eat less, and harness willpower, “which really is a fallacy,” said Kimberly Gudzune, MD, MPH, an obesity medicine specialist and chief medical officer for the American Board of Obesity Medicine (ABOM) Foundation. For people with obesity, “your brain is operating differently,” she said. “Your body really is set up to work against you.” 

Brianna Johnson-Rabbett, MD, medical director of the ABOM, told this news organization that with the advent of GLP-1s, “there’s a clearer recognition that obesity is a disease that needs to be treated like other diseases.” Some of that is thanks to clinical trial data showing that just as with other diseases such as high blood pressure or diabetes, obesity can be treated with medication and it resurges when the medication is stopped, she said.

Doctors don’t have to go looking for patients with obesity, dr. Griebeler added. Now that treatment options exist, they’re showing up in droves at the doctor’s office — all the doctors’ offices. In primary care, endocrinology, surgery, pediatrics — a wide variety of doctors are being asked about obesity drugs, Dr. Griebeler noted.

And while doctors are often just as excited as patients about the potential for treatment, many find themselves under-equipped when it comes to obesity. “More physicians are ... recognizing the value in treating this, and some are realizing, “Oh gosh, I never learned how to do this,” said Dr. Gudzune.
 

Information Patients Have Been Waiting For

Medical training has traditionally devoted minimal, if any, curriculum to obesity and metabolism. “To be honest, we didn’t really cover this at all in my training,” said Nina Paddu, MD, obesity medicine specialist at Maimonides Medical Center in New York City who finished her training only 2 years ago. “The guidance even in residency was ‘let’s send them to nutrition’ and ‘recommend exercising.’ ”

In addition to the medical education gap, until recently there was a “paucity of robust evidence,” Dr. Srivastava said. Leaders in the field wanted to establish standards and guidelines, but there wasn’t enough strong evidence on obesity and its treatments to build them, she said. 

Only in the last 5 years or so has the evidence-based understanding of obesity’s pathophysiology truly accelerated: The brain’s driving roles, its interplay with hormones, and its interactions with other diseases. “We are just at the cusp of understanding all the different factors,” Dr. Gudzune said.

But already endocrinologists, surgeons, fertility specialists, gynecologists, and oncologists, to name a few, see the critical overlap with their own field. “Conditions were once suspected of being intertwined [with obesity], and now we have data to connect them,” Dr. Srivastava said. For example, there’s now data connecting semaglutide to a 20% reduction in cardiovascular events for people with obesity. That’s a game changer for multiple specialties, she told this news organization. 
 

Getting Trained in Obesity Management

The recent uptick in obesity insights and increased patient need has doctors from every career stage seeking additional training.

The ABOM offers two board certification pathways: 60 hours of CME credits or a 12-month fellowship. Both paths require doctors to pass the board’s exam. 

Many doctors incorporate the training into their existing practice. The CME credit pathway, especially, is designed to help get doctors up to speed without requiring them to upend their lives for a fellowship.

Dr. Srivastava said that the fellowship is more consuming and immersive. While it’s often younger doctors just out of training who apply to fellowship, every year, “I’m astonished at the number of talented physicians with clinical and research experience who want to immerse themselves in a fellowship experience.”

Some doctors return to their previous specialties after fellowship. But many will go on to take obesity medicine–specific roles or set aside clinic hours for obesity medicine. Their credentials are “really attractive to institutions, especially those looking to open up obesity medicine or weight management programs,” said Dr. Srivastava.

Dr. Paddu, who finished her obesity medicine fellowship this year, said there are a variety of obesity medicine jobs to choose from — far different from Dr. Srivastava’s job search 15 years ago. Dr. Paddu’s new role combines 2 days of primary care with 2 days devoted to obesity medicine and 1 day each week set aside for administrative work so she can build up the hospital’s new metabolic health clinic. 
 

Still Not Enough Obesity Specialists

As with all things, rapid growth requires careful oversight. “Part of the responsibility of the board is to think critically of how the field is growing” and conduct ongoing monitoring, Dr. Gudzune said.

This is also why the board’s credentials are time-limited and must be recertified, Dr. Johnson-Rabbett added. 

But even with the rise in certified doctors and obesity medicine positions, the 8263 doctors certified by ABOM are only a tiny fraction of US physicians. As a result, there’s genuine likelihood that many patients seeking GLP-1s or other obesity treatment don’t yet have access to the holistic care they need. Plus, doctors may still not have obesity expertise within their networks.

“The field has grown rapidly, but it’s still such a small field relative to the patient need,” said Dr. Gudzune.
 

A version of this article appeared on Medscape.com.

Gitanjali Srivastava, MD, professor of medicine, pediatrics, and surgery, and medical director of obesity medicine at Vanderbilt University School of Medicine in Nashville, Tennessee, was nearly 10 years into practicing pediatric medicine when she graduated from the obesity medicine fellowship at Massachusetts General Hospital in Boston in 2013. “We were the very first sort of fellows to speak of then; there were no standards or curriculum,” she said.

Obesity was already epidemic, but stigma and bias were still pervasive in the medical community and within the public. After graduating, Dr. Srivastava spent months vying for a position with hospital CEOs. She traveled across the country explaining the specialty and its value, going into detail about the budget, business model, space requirement, and revenue potential of obesity medicine. 

Today marks a very different era.

Obesity medicine is exploding. Patients are spilling into doctors’ offices looking for obesity treatment. Healthcare systems are seeking out obesity specialists and building metabolic health centers. Since 2020, the number of doctors board-certified by the American Board of Obesity Medicine has nearly doubled, and the number of obesity medicine fellowships across the country has more than doubled. Next month, another 2115 doctors from primary care, surgery, orthopedics, pediatrics, fertility, endocrinology, and beyond will sit for the 2024 exam. The once niche specialty is quickly becoming intertwined with most of modern medicine.
 

The Need to Treat

It’s no mystery that the rapid expansion of obesity medicine coincides with the US Food and Drug Administration’s approval of GLP-1 injections. The drugs’ radical weight loss properties have captured headlines and driven up patient demand. Meanwhile, doctors are finally able to offer effective treatment for a disease that affects 40% of US adults.

“We are finally treating it as a chronic disease, not as a lifestyle,” said Marcio Griebeler, MD, director of the obesity medicine fellowship at the Cleveland Clinic. And “I think it’s fulfilling for physicians,” he said. 

For so long, the advice for obesity was about lifestyle. Move more, eat less, and harness willpower, “which really is a fallacy,” said Kimberly Gudzune, MD, MPH, an obesity medicine specialist and chief medical officer for the American Board of Obesity Medicine (ABOM) Foundation. For people with obesity, “your brain is operating differently,” she said. “Your body really is set up to work against you.” 

Brianna Johnson-Rabbett, MD, medical director of the ABOM, told this news organization that with the advent of GLP-1s, “there’s a clearer recognition that obesity is a disease that needs to be treated like other diseases.” Some of that is thanks to clinical trial data showing that just as with other diseases such as high blood pressure or diabetes, obesity can be treated with medication and it resurges when the medication is stopped, she said.

Doctors don’t have to go looking for patients with obesity, dr. Griebeler added. Now that treatment options exist, they’re showing up in droves at the doctor’s office — all the doctors’ offices. In primary care, endocrinology, surgery, pediatrics — a wide variety of doctors are being asked about obesity drugs, Dr. Griebeler noted.

And while doctors are often just as excited as patients about the potential for treatment, many find themselves under-equipped when it comes to obesity. “More physicians are ... recognizing the value in treating this, and some are realizing, “Oh gosh, I never learned how to do this,” said Dr. Gudzune.
 

Information Patients Have Been Waiting For

Medical training has traditionally devoted minimal, if any, curriculum to obesity and metabolism. “To be honest, we didn’t really cover this at all in my training,” said Nina Paddu, MD, obesity medicine specialist at Maimonides Medical Center in New York City who finished her training only 2 years ago. “The guidance even in residency was ‘let’s send them to nutrition’ and ‘recommend exercising.’ ”

In addition to the medical education gap, until recently there was a “paucity of robust evidence,” Dr. Srivastava said. Leaders in the field wanted to establish standards and guidelines, but there wasn’t enough strong evidence on obesity and its treatments to build them, she said. 

Only in the last 5 years or so has the evidence-based understanding of obesity’s pathophysiology truly accelerated: The brain’s driving roles, its interplay with hormones, and its interactions with other diseases. “We are just at the cusp of understanding all the different factors,” Dr. Gudzune said.

But already endocrinologists, surgeons, fertility specialists, gynecologists, and oncologists, to name a few, see the critical overlap with their own field. “Conditions were once suspected of being intertwined [with obesity], and now we have data to connect them,” Dr. Srivastava said. For example, there’s now data connecting semaglutide to a 20% reduction in cardiovascular events for people with obesity. That’s a game changer for multiple specialties, she told this news organization. 
 

Getting Trained in Obesity Management

The recent uptick in obesity insights and increased patient need has doctors from every career stage seeking additional training.

The ABOM offers two board certification pathways: 60 hours of CME credits or a 12-month fellowship. Both paths require doctors to pass the board’s exam. 

Many doctors incorporate the training into their existing practice. The CME credit pathway, especially, is designed to help get doctors up to speed without requiring them to upend their lives for a fellowship.

Dr. Srivastava said that the fellowship is more consuming and immersive. While it’s often younger doctors just out of training who apply to fellowship, every year, “I’m astonished at the number of talented physicians with clinical and research experience who want to immerse themselves in a fellowship experience.”

Some doctors return to their previous specialties after fellowship. But many will go on to take obesity medicine–specific roles or set aside clinic hours for obesity medicine. Their credentials are “really attractive to institutions, especially those looking to open up obesity medicine or weight management programs,” said Dr. Srivastava.

Dr. Paddu, who finished her obesity medicine fellowship this year, said there are a variety of obesity medicine jobs to choose from — far different from Dr. Srivastava’s job search 15 years ago. Dr. Paddu’s new role combines 2 days of primary care with 2 days devoted to obesity medicine and 1 day each week set aside for administrative work so she can build up the hospital’s new metabolic health clinic. 
 

Still Not Enough Obesity Specialists

As with all things, rapid growth requires careful oversight. “Part of the responsibility of the board is to think critically of how the field is growing” and conduct ongoing monitoring, Dr. Gudzune said.

This is also why the board’s credentials are time-limited and must be recertified, Dr. Johnson-Rabbett added. 

But even with the rise in certified doctors and obesity medicine positions, the 8263 doctors certified by ABOM are only a tiny fraction of US physicians. As a result, there’s genuine likelihood that many patients seeking GLP-1s or other obesity treatment don’t yet have access to the holistic care they need. Plus, doctors may still not have obesity expertise within their networks.

“The field has grown rapidly, but it’s still such a small field relative to the patient need,” said Dr. Gudzune.
 

A version of this article appeared on Medscape.com.

Gitanjali Srivastava, MD, professor of medicine, pediatrics, and surgery, and medical director of obesity medicine at Vanderbilt University School of Medicine in Nashville, Tennessee, was nearly 10 years into practicing pediatric medicine when she graduated from the obesity medicine fellowship at Massachusetts General Hospital in Boston in 2013. “We were the very first sort of fellows to speak of then; there were no standards or curriculum,” she said.

Obesity was already epidemic, but stigma and bias were still pervasive in the medical community and within the public. After graduating, Dr. Srivastava spent months vying for a position with hospital CEOs. She traveled across the country explaining the specialty and its value, going into detail about the budget, business model, space requirement, and revenue potential of obesity medicine. 

Today marks a very different era.

Obesity medicine is exploding. Patients are spilling into doctors’ offices looking for obesity treatment. Healthcare systems are seeking out obesity specialists and building metabolic health centers. Since 2020, the number of doctors board-certified by the American Board of Obesity Medicine has nearly doubled, and the number of obesity medicine fellowships across the country has more than doubled. Next month, another 2115 doctors from primary care, surgery, orthopedics, pediatrics, fertility, endocrinology, and beyond will sit for the 2024 exam. The once niche specialty is quickly becoming intertwined with most of modern medicine.
 

The Need to Treat

It’s no mystery that the rapid expansion of obesity medicine coincides with the US Food and Drug Administration’s approval of GLP-1 injections. The drugs’ radical weight loss properties have captured headlines and driven up patient demand. Meanwhile, doctors are finally able to offer effective treatment for a disease that affects 40% of US adults.

“We are finally treating it as a chronic disease, not as a lifestyle,” said Marcio Griebeler, MD, director of the obesity medicine fellowship at the Cleveland Clinic. And “I think it’s fulfilling for physicians,” he said. 

For so long, the advice for obesity was about lifestyle. Move more, eat less, and harness willpower, “which really is a fallacy,” said Kimberly Gudzune, MD, MPH, an obesity medicine specialist and chief medical officer for the American Board of Obesity Medicine (ABOM) Foundation. For people with obesity, “your brain is operating differently,” she said. “Your body really is set up to work against you.” 

Brianna Johnson-Rabbett, MD, medical director of the ABOM, told this news organization that with the advent of GLP-1s, “there’s a clearer recognition that obesity is a disease that needs to be treated like other diseases.” Some of that is thanks to clinical trial data showing that just as with other diseases such as high blood pressure or diabetes, obesity can be treated with medication and it resurges when the medication is stopped, she said.

Doctors don’t have to go looking for patients with obesity, dr. Griebeler added. Now that treatment options exist, they’re showing up in droves at the doctor’s office — all the doctors’ offices. In primary care, endocrinology, surgery, pediatrics — a wide variety of doctors are being asked about obesity drugs, Dr. Griebeler noted.

And while doctors are often just as excited as patients about the potential for treatment, many find themselves under-equipped when it comes to obesity. “More physicians are ... recognizing the value in treating this, and some are realizing, “Oh gosh, I never learned how to do this,” said Dr. Gudzune.
 

Information Patients Have Been Waiting For

Medical training has traditionally devoted minimal, if any, curriculum to obesity and metabolism. “To be honest, we didn’t really cover this at all in my training,” said Nina Paddu, MD, obesity medicine specialist at Maimonides Medical Center in New York City who finished her training only 2 years ago. “The guidance even in residency was ‘let’s send them to nutrition’ and ‘recommend exercising.’ ”

In addition to the medical education gap, until recently there was a “paucity of robust evidence,” Dr. Srivastava said. Leaders in the field wanted to establish standards and guidelines, but there wasn’t enough strong evidence on obesity and its treatments to build them, she said. 

Only in the last 5 years or so has the evidence-based understanding of obesity’s pathophysiology truly accelerated: The brain’s driving roles, its interplay with hormones, and its interactions with other diseases. “We are just at the cusp of understanding all the different factors,” Dr. Gudzune said.

But already endocrinologists, surgeons, fertility specialists, gynecologists, and oncologists, to name a few, see the critical overlap with their own field. “Conditions were once suspected of being intertwined [with obesity], and now we have data to connect them,” Dr. Srivastava said. For example, there’s now data connecting semaglutide to a 20% reduction in cardiovascular events for people with obesity. That’s a game changer for multiple specialties, she told this news organization. 
 

Getting Trained in Obesity Management

The recent uptick in obesity insights and increased patient need has doctors from every career stage seeking additional training.

The ABOM offers two board certification pathways: 60 hours of CME credits or a 12-month fellowship. Both paths require doctors to pass the board’s exam. 

Many doctors incorporate the training into their existing practice. The CME credit pathway, especially, is designed to help get doctors up to speed without requiring them to upend their lives for a fellowship.

Dr. Srivastava said that the fellowship is more consuming and immersive. While it’s often younger doctors just out of training who apply to fellowship, every year, “I’m astonished at the number of talented physicians with clinical and research experience who want to immerse themselves in a fellowship experience.”

Some doctors return to their previous specialties after fellowship. But many will go on to take obesity medicine–specific roles or set aside clinic hours for obesity medicine. Their credentials are “really attractive to institutions, especially those looking to open up obesity medicine or weight management programs,” said Dr. Srivastava.

Dr. Paddu, who finished her obesity medicine fellowship this year, said there are a variety of obesity medicine jobs to choose from — far different from Dr. Srivastava’s job search 15 years ago. Dr. Paddu’s new role combines 2 days of primary care with 2 days devoted to obesity medicine and 1 day each week set aside for administrative work so she can build up the hospital’s new metabolic health clinic. 
 

Still Not Enough Obesity Specialists

As with all things, rapid growth requires careful oversight. “Part of the responsibility of the board is to think critically of how the field is growing” and conduct ongoing monitoring, Dr. Gudzune said.

This is also why the board’s credentials are time-limited and must be recertified, Dr. Johnson-Rabbett added. 

But even with the rise in certified doctors and obesity medicine positions, the 8263 doctors certified by ABOM are only a tiny fraction of US physicians. As a result, there’s genuine likelihood that many patients seeking GLP-1s or other obesity treatment don’t yet have access to the holistic care they need. Plus, doctors may still not have obesity expertise within their networks.

“The field has grown rapidly, but it’s still such a small field relative to the patient need,” said Dr. Gudzune.
 

A version of this article appeared on Medscape.com.

Holly Wyatt, MD, had spent 20 years in UCHealth with no plans to leave. Her home, support system, and lifestyle were all rooted in Denver. But in 2020, The University of Alabama at Birmingham (UAB) made the endocrinologist an offer she couldn’t resist.

The pay increase and a bump to full professorship weren’t enough to lure her across the country. But then UAB sweetened the deal with fewer clinic hours and paid time to create. “I didn’t have to fit into the typical ‘see patients 5 days a week, bill this many dollars,’ ” she said.

With no minimum billable hours, she could spend her time on clinical trials, designing programs, and recording podcasts. “When they offered that, I said, ‘Ooh, that’s enticing.’ ”

After a couple of visits to the campus, she began the job transition.

Doctors are looking for more than base pay. For many physicians, like Dr. Wyatt, non-salary incentives carry a lot of weight in the recruitment and job-hunting process.

“Some of the usual suspects are CME [continuing medical education] budget, signing bonuses, relocation assistance, loan repayment programs, and housing allowances,” said Jake Jorgovan, partner at Alpha Apex Group, a physician recruiting firm in Denver.

Post pandemic, doctors are vying for other benefits, perks that support their interests, work-life balance, and financial stability. “We’ve come across offers like sabbatical opportunities, paid time for research or personal projects, and even concierge services that handle things like grocery shopping or pet care,” said Mr. Jorgovan.

Amid physician shortages, doctors have more bargaining power than ever.
 

Money Still Talks

Financial perks are still the premiere portion of a benefits package, according to Marc Adam, physician recruiter at MASC Medical, a medical recruitment firm in Fort Lauderdale, Florida.

New data from the medical staffing company AMN Healthcare reported that the average signing bonus for physicians is $31,103. The average relocation allowance is $11,000, and the average CME allowance is $4000.

“CME budget and loan repayment programs are big because they directly impact career advancement and financial well-being,” Mr. Jorgovan said. He said that given the high cost of medical training, loan repayment help, especially, has become a huge deciding factor for clinicians. Employers have historically been hesitant to offer these kinds of long-term benefits because of the financial commitment and planning involved, but that’s changing.

Mr. Adam said that short-term financial perks, like relocation assistance and signing bonuses, tend to be more important for younger doctors. They’re not yet financially established, so the relocation support and bonus funds have more impact as they take on a new role, he said.

Mid- and late-career doctors, on the other hand, are less beholden to these types of bonuses. Mr. Adam has recruited established doctors from across the country to Florida, and he said that the relocation allowance and singing bonus didn’t even rank in their top five priorities. Similarly, in Birmingham, Dr. Wyatt recently reread her offer letter from UAB and was surprised to find a relocation stipend that she never used. “I had no idea,” she said.
 

Vying for Time

Mid- and late-career doctors who have a better financial safety net tend to seek benefits that boost their quality of life.

One of Mr. Adam’s recent job-searching clients was unwilling to compromise on priorities like specific location and a 4-day workweek.

Four-day workweeks, flexible scheduling, and options for remote work are increasingly popular, especially since the pandemic. Some physicians, like those in primary care, are looking for dedicated charting hours — paid days or half-days set aside for updating the electronic medical records. Other doctors are negotiating multistate telehealth licensing paid by their employer and work-from-home telehealth hours.

“Work life has been slowly increasing over the 14 years I’ve been doing this. And post COVID, the employer’s willingness to be flexible with those types of accommodations increased,” said Mr. Adam.

Priya Jaisinghani, MD, an endocrinologist and obesity medicine specialist in her second year of practice, NYU Langone Health, New York City, said work-life balance can be a priority for young doctors, too. After training in New York during the pandemic, Dr. Jaisinghani was all too aware of the risk for burnout. So she negotiated a 4-day workweek when she took her first job out of fellowship in 2022. “I was able to prioritize work-life balance from the start,” she said.
 

Support for the Career You Want

When Dr. Jaisinghani signed her first contract in 2022 with NYU, her move from New Jersey to New York wasn’t far enough to warrant a relocation allowance. “There was a signing bonus, sure,” she said. But what really grabbed her attention were perks like mentorship, access to trainees, and autonomy.

Perks that support long-term growth — like CME allowance, teaching opportunities, or access to leadership tracks — are especially important to young doctors. “After dedicating so many years to medical training, you want to look for some degree of autonomy in building your practice,” she said. NYU offered her that kind of freedom and support.

On top of personal growth, young physicians are looking for perks that will allow them to build the practice they want for their patients,Dr. Jaisinghani told this news organization. A lot of young doctors don’t know that they can negotiate for schedule preferences, office space, their own exam room, and dedicated support staff. However, they can and should because these factors influence their daily work life and patient experience.

Experienced doctors are also looking for perks that support the career they want. Recruitment experts say that doctors tend to look for opportunities that accommodate their interests. One of Mr. Jorgovan’s recent clients took a position because it offered a generous CME budget and dedicated research hours. Similarly, Dr. Wyatt at UAB moved because her contract included paid time to create.

“It really comes down to the need for balance — being able to keep learning while also having time for personal life and family,” Mr. Jorgovan said.
 

Making and Meeting Demand

Thanks to the rising demand, doctors have more power than ever to negotiate the perks they want and need.

The existing physician shortage — driven by retiring doctors and an aging patient population — was only exacerbated by the pandemic. Now, a number of new market entries are further increasing competition for talent, according to AMN Healthcare’s report. Retail clinics, urgent care, telehealth companies, and private equity firms compete for the same doctors, driving up salaries and doctor bargaining power.

“Physicians were always in the driver’s seat, and their bargaining power has only increased,” Mr. Adam said. Healthcare systems, once reticent about flexible working arrangements or loan repayment, are reconsidering.

Even young doctors have more negotiating power than they realize, but they might need help. “It’s underrated to get a contracts lawyer as a young doctor, but I think it’s smart,” Dr. Jaisinghani said. They’re often more familiar with salaries in the area, flexibility options, and potential benefits, none of which doctors are taught in training, she said.

Mr. Adam said that the pandemic opened employers’ eyes to the fact that doctors have the bargaining power. There’s a stark need for their talent and a lot of public support for their service. So hiring managers are listening and are ready to offer “creative benefits to accommodate the market demand,” he said.

In her new position at UAB, Dr. Wyatt said that money will always matter. “When your salary is low, bumping that salary will make you happier.” But after a certain point, she said, other things become more important — like your time, the work you do, and the people you work with. Her perks at UAB offer more than money can. “I get up in the morning, and I’m excited — [the work] excites me,” she said.

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

Holly Wyatt, MD, had spent 20 years in UCHealth with no plans to leave. Her home, support system, and lifestyle were all rooted in Denver. But in 2020, The University of Alabama at Birmingham (UAB) made the endocrinologist an offer she couldn’t resist.

The pay increase and a bump to full professorship weren’t enough to lure her across the country. But then UAB sweetened the deal with fewer clinic hours and paid time to create. “I didn’t have to fit into the typical ‘see patients 5 days a week, bill this many dollars,’ ” she said.

With no minimum billable hours, she could spend her time on clinical trials, designing programs, and recording podcasts. “When they offered that, I said, ‘Ooh, that’s enticing.’ ”

After a couple of visits to the campus, she began the job transition.

Doctors are looking for more than base pay. For many physicians, like Dr. Wyatt, non-salary incentives carry a lot of weight in the recruitment and job-hunting process.

“Some of the usual suspects are CME [continuing medical education] budget, signing bonuses, relocation assistance, loan repayment programs, and housing allowances,” said Jake Jorgovan, partner at Alpha Apex Group, a physician recruiting firm in Denver.

Post pandemic, doctors are vying for other benefits, perks that support their interests, work-life balance, and financial stability. “We’ve come across offers like sabbatical opportunities, paid time for research or personal projects, and even concierge services that handle things like grocery shopping or pet care,” said Mr. Jorgovan.

Amid physician shortages, doctors have more bargaining power than ever.
 

Money Still Talks

Financial perks are still the premiere portion of a benefits package, according to Marc Adam, physician recruiter at MASC Medical, a medical recruitment firm in Fort Lauderdale, Florida.

New data from the medical staffing company AMN Healthcare reported that the average signing bonus for physicians is $31,103. The average relocation allowance is $11,000, and the average CME allowance is $4000.

“CME budget and loan repayment programs are big because they directly impact career advancement and financial well-being,” Mr. Jorgovan said. He said that given the high cost of medical training, loan repayment help, especially, has become a huge deciding factor for clinicians. Employers have historically been hesitant to offer these kinds of long-term benefits because of the financial commitment and planning involved, but that’s changing.

Mr. Adam said that short-term financial perks, like relocation assistance and signing bonuses, tend to be more important for younger doctors. They’re not yet financially established, so the relocation support and bonus funds have more impact as they take on a new role, he said.

Mid- and late-career doctors, on the other hand, are less beholden to these types of bonuses. Mr. Adam has recruited established doctors from across the country to Florida, and he said that the relocation allowance and singing bonus didn’t even rank in their top five priorities. Similarly, in Birmingham, Dr. Wyatt recently reread her offer letter from UAB and was surprised to find a relocation stipend that she never used. “I had no idea,” she said.
 

Vying for Time

Mid- and late-career doctors who have a better financial safety net tend to seek benefits that boost their quality of life.

One of Mr. Adam’s recent job-searching clients was unwilling to compromise on priorities like specific location and a 4-day workweek.

Four-day workweeks, flexible scheduling, and options for remote work are increasingly popular, especially since the pandemic. Some physicians, like those in primary care, are looking for dedicated charting hours — paid days or half-days set aside for updating the electronic medical records. Other doctors are negotiating multistate telehealth licensing paid by their employer and work-from-home telehealth hours.

“Work life has been slowly increasing over the 14 years I’ve been doing this. And post COVID, the employer’s willingness to be flexible with those types of accommodations increased,” said Mr. Adam.

Priya Jaisinghani, MD, an endocrinologist and obesity medicine specialist in her second year of practice, NYU Langone Health, New York City, said work-life balance can be a priority for young doctors, too. After training in New York during the pandemic, Dr. Jaisinghani was all too aware of the risk for burnout. So she negotiated a 4-day workweek when she took her first job out of fellowship in 2022. “I was able to prioritize work-life balance from the start,” she said.
 

Support for the Career You Want

When Dr. Jaisinghani signed her first contract in 2022 with NYU, her move from New Jersey to New York wasn’t far enough to warrant a relocation allowance. “There was a signing bonus, sure,” she said. But what really grabbed her attention were perks like mentorship, access to trainees, and autonomy.

Perks that support long-term growth — like CME allowance, teaching opportunities, or access to leadership tracks — are especially important to young doctors. “After dedicating so many years to medical training, you want to look for some degree of autonomy in building your practice,” she said. NYU offered her that kind of freedom and support.

On top of personal growth, young physicians are looking for perks that will allow them to build the practice they want for their patients,Dr. Jaisinghani told this news organization. A lot of young doctors don’t know that they can negotiate for schedule preferences, office space, their own exam room, and dedicated support staff. However, they can and should because these factors influence their daily work life and patient experience.

Experienced doctors are also looking for perks that support the career they want. Recruitment experts say that doctors tend to look for opportunities that accommodate their interests. One of Mr. Jorgovan’s recent clients took a position because it offered a generous CME budget and dedicated research hours. Similarly, Dr. Wyatt at UAB moved because her contract included paid time to create.

“It really comes down to the need for balance — being able to keep learning while also having time for personal life and family,” Mr. Jorgovan said.
 

Making and Meeting Demand

Thanks to the rising demand, doctors have more power than ever to negotiate the perks they want and need.

The existing physician shortage — driven by retiring doctors and an aging patient population — was only exacerbated by the pandemic. Now, a number of new market entries are further increasing competition for talent, according to AMN Healthcare’s report. Retail clinics, urgent care, telehealth companies, and private equity firms compete for the same doctors, driving up salaries and doctor bargaining power.

“Physicians were always in the driver’s seat, and their bargaining power has only increased,” Mr. Adam said. Healthcare systems, once reticent about flexible working arrangements or loan repayment, are reconsidering.

Even young doctors have more negotiating power than they realize, but they might need help. “It’s underrated to get a contracts lawyer as a young doctor, but I think it’s smart,” Dr. Jaisinghani said. They’re often more familiar with salaries in the area, flexibility options, and potential benefits, none of which doctors are taught in training, she said.

Mr. Adam said that the pandemic opened employers’ eyes to the fact that doctors have the bargaining power. There’s a stark need for their talent and a lot of public support for their service. So hiring managers are listening and are ready to offer “creative benefits to accommodate the market demand,” he said.

In her new position at UAB, Dr. Wyatt said that money will always matter. “When your salary is low, bumping that salary will make you happier.” But after a certain point, she said, other things become more important — like your time, the work you do, and the people you work with. Her perks at UAB offer more than money can. “I get up in the morning, and I’m excited — [the work] excites me,” she said.

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

Holly Wyatt, MD, had spent 20 years in UCHealth with no plans to leave. Her home, support system, and lifestyle were all rooted in Denver. But in 2020, The University of Alabama at Birmingham (UAB) made the endocrinologist an offer she couldn’t resist.

The pay increase and a bump to full professorship weren’t enough to lure her across the country. But then UAB sweetened the deal with fewer clinic hours and paid time to create. “I didn’t have to fit into the typical ‘see patients 5 days a week, bill this many dollars,’ ” she said.

With no minimum billable hours, she could spend her time on clinical trials, designing programs, and recording podcasts. “When they offered that, I said, ‘Ooh, that’s enticing.’ ”

After a couple of visits to the campus, she began the job transition.

Doctors are looking for more than base pay. For many physicians, like Dr. Wyatt, non-salary incentives carry a lot of weight in the recruitment and job-hunting process.

“Some of the usual suspects are CME [continuing medical education] budget, signing bonuses, relocation assistance, loan repayment programs, and housing allowances,” said Jake Jorgovan, partner at Alpha Apex Group, a physician recruiting firm in Denver.

Post pandemic, doctors are vying for other benefits, perks that support their interests, work-life balance, and financial stability. “We’ve come across offers like sabbatical opportunities, paid time for research or personal projects, and even concierge services that handle things like grocery shopping or pet care,” said Mr. Jorgovan.

Amid physician shortages, doctors have more bargaining power than ever.
 

Money Still Talks

Financial perks are still the premiere portion of a benefits package, according to Marc Adam, physician recruiter at MASC Medical, a medical recruitment firm in Fort Lauderdale, Florida.

New data from the medical staffing company AMN Healthcare reported that the average signing bonus for physicians is $31,103. The average relocation allowance is $11,000, and the average CME allowance is $4000.

“CME budget and loan repayment programs are big because they directly impact career advancement and financial well-being,” Mr. Jorgovan said. He said that given the high cost of medical training, loan repayment help, especially, has become a huge deciding factor for clinicians. Employers have historically been hesitant to offer these kinds of long-term benefits because of the financial commitment and planning involved, but that’s changing.

Mr. Adam said that short-term financial perks, like relocation assistance and signing bonuses, tend to be more important for younger doctors. They’re not yet financially established, so the relocation support and bonus funds have more impact as they take on a new role, he said.

Mid- and late-career doctors, on the other hand, are less beholden to these types of bonuses. Mr. Adam has recruited established doctors from across the country to Florida, and he said that the relocation allowance and singing bonus didn’t even rank in their top five priorities. Similarly, in Birmingham, Dr. Wyatt recently reread her offer letter from UAB and was surprised to find a relocation stipend that she never used. “I had no idea,” she said.
 

Vying for Time

Mid- and late-career doctors who have a better financial safety net tend to seek benefits that boost their quality of life.

One of Mr. Adam’s recent job-searching clients was unwilling to compromise on priorities like specific location and a 4-day workweek.

Four-day workweeks, flexible scheduling, and options for remote work are increasingly popular, especially since the pandemic. Some physicians, like those in primary care, are looking for dedicated charting hours — paid days or half-days set aside for updating the electronic medical records. Other doctors are negotiating multistate telehealth licensing paid by their employer and work-from-home telehealth hours.

“Work life has been slowly increasing over the 14 years I’ve been doing this. And post COVID, the employer’s willingness to be flexible with those types of accommodations increased,” said Mr. Adam.

Priya Jaisinghani, MD, an endocrinologist and obesity medicine specialist in her second year of practice, NYU Langone Health, New York City, said work-life balance can be a priority for young doctors, too. After training in New York during the pandemic, Dr. Jaisinghani was all too aware of the risk for burnout. So she negotiated a 4-day workweek when she took her first job out of fellowship in 2022. “I was able to prioritize work-life balance from the start,” she said.
 

Support for the Career You Want

When Dr. Jaisinghani signed her first contract in 2022 with NYU, her move from New Jersey to New York wasn’t far enough to warrant a relocation allowance. “There was a signing bonus, sure,” she said. But what really grabbed her attention were perks like mentorship, access to trainees, and autonomy.

Perks that support long-term growth — like CME allowance, teaching opportunities, or access to leadership tracks — are especially important to young doctors. “After dedicating so many years to medical training, you want to look for some degree of autonomy in building your practice,” she said. NYU offered her that kind of freedom and support.

On top of personal growth, young physicians are looking for perks that will allow them to build the practice they want for their patients,Dr. Jaisinghani told this news organization. A lot of young doctors don’t know that they can negotiate for schedule preferences, office space, their own exam room, and dedicated support staff. However, they can and should because these factors influence their daily work life and patient experience.

Experienced doctors are also looking for perks that support the career they want. Recruitment experts say that doctors tend to look for opportunities that accommodate their interests. One of Mr. Jorgovan’s recent clients took a position because it offered a generous CME budget and dedicated research hours. Similarly, Dr. Wyatt at UAB moved because her contract included paid time to create.

“It really comes down to the need for balance — being able to keep learning while also having time for personal life and family,” Mr. Jorgovan said.
 

Making and Meeting Demand

Thanks to the rising demand, doctors have more power than ever to negotiate the perks they want and need.

The existing physician shortage — driven by retiring doctors and an aging patient population — was only exacerbated by the pandemic. Now, a number of new market entries are further increasing competition for talent, according to AMN Healthcare’s report. Retail clinics, urgent care, telehealth companies, and private equity firms compete for the same doctors, driving up salaries and doctor bargaining power.

“Physicians were always in the driver’s seat, and their bargaining power has only increased,” Mr. Adam said. Healthcare systems, once reticent about flexible working arrangements or loan repayment, are reconsidering.

Even young doctors have more negotiating power than they realize, but they might need help. “It’s underrated to get a contracts lawyer as a young doctor, but I think it’s smart,” Dr. Jaisinghani said. They’re often more familiar with salaries in the area, flexibility options, and potential benefits, none of which doctors are taught in training, she said.

Mr. Adam said that the pandemic opened employers’ eyes to the fact that doctors have the bargaining power. There’s a stark need for their talent and a lot of public support for their service. So hiring managers are listening and are ready to offer “creative benefits to accommodate the market demand,” he said.

In her new position at UAB, Dr. Wyatt said that money will always matter. “When your salary is low, bumping that salary will make you happier.” But after a certain point, she said, other things become more important — like your time, the work you do, and the people you work with. Her perks at UAB offer more than money can. “I get up in the morning, and I’m excited — [the work] excites me,” she said.

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

By February of 2022, Ella, a 25-year-old behavioral interventionist in Colorado Springs, Colorado, was sick with strep-like symptoms for the third time in 3 months. She didn’t bother to call her doctor.

The first two times she had strep throat, she’d tried to schedule an appointment with her newest primary care doctor but couldn’t get in. They only had available appointments 5 and even 10 days out, but she’d already had symptoms for 3 days.

Until she graduated college, Ella had only known easy-access primary care. Her childhood family doctor and the nurse practitioners at her college clinic knew her. They anticipated her yearly allergies and knew about her predisposition for strep throat. Appointments were easy to schedule, and providers responded to her messages. But since entering the workforce and leaving her parent’s insurance, the kind of primary care she’d come to rely on was nearly impossible to find.

“I went to urgent care, and that became my primary care,” she told this news organization.
 

Patients Can’t Get Appointments

Primary care is in crisis. A growing number of Americans, like Ella, can’t access care when they need it. According to a 2024 report, 29% of adults and 14% of children don’t have a regular source of care. Those looking for a new primary care provider face extensive research and 6- to 9-month waits for a new patient appointment — if they can get in at all.

But even those with a primary care provider face long wait times: Days to weeks for a sick visit and months for a wellness checkup. Over one third of Medicare beneficiaries wait more than a month to see a doctor. Accessing primary care is more difficult than access to surgery, physical therapy, or rehabilitative care, according to a survey of Medicare beneficiaries by the Commonwealth Fund.

“Shortages tend to be in rural and urban underserved areas, but now, you’re hearing about primary care shortages in Boston, which is a mecca of healthcare,” said Ann Greiner, president and CEO of the Primary Care Coalition.

While retail clinics, urgent care, and telehealth help close the gap in acute needs, they miss one of primary care’s most critical benefits: A doctor who knows you. There’s strong evidence that ongoing treatment from a primary care physician (PCP) who knows your history, family, and context results in better long-term outcomes and fewer hospitalizations and emergency room visits.

If patients continue to find it too hard to break into primary care or set up an appointment, experts are concerned that they’ll stop pursuing primary care altogether.
 

Doctors’ Hands Are Tied

“I want to highlight that this is not an issue of primary care doctors not wanting to be accessible,” said Lisa Rotenstein, MD, MBA, a PCP and medical director of Ambulatory Quality and Safety at the University of California San Francisco Health. “These access issues are symptoms of the design of primary care in the United States.”

Across the United States, there’s a dearth of family medicine doctors, pediatricians, and internists. And without significantly more primary care providers, there’s simply no way for all Americans to get optimal primary care. The Health Resources and Services administration estimates a current shortage of 13,000 primary care providers. And that shortage will skyrocket to 68,000 by 2036 as the number of Americans needing care balloons and existing PCPs retire with too few trainees to fill their shoes.

The American Association of Medical Colleges predicts a slightly lower shortage in 2036 — between 20,000 and 40,000 primary care physicians — only if more residency positions are funded nationwide.

However, even with more positions, medical trainees see little incentive to pursue primary care. Young doctors are avoiding primary care because of the pressures, Dr. Rotenstein said. There’s incredible pressure to get reimbursement for primary care doctors. And the added administrative burden makes “the work life of these specialties not really manageable,” she said.
 

Continued Shortages of PCPs

“We know there’s a documented pajama time,” Ms. Greiner said. For every 1 hour spent with a patient, primary care must spend nearly 2 additional hours on electronic health records and desk work, according to a study by the American Medical Association. Even with all those additional hours devoted to getting paid, primary care doctors make an average of $103,000 less annually compared with their counterparts in surgery and oncology.

It’s not an attractive combination for a new doctor with medical debt. This year, Ms. Greiner said that residency positions in internal medicine and pediatrics went unfilled. Of those trainees who do go into a primary care specialty, many won’t last. Only half of primary care residents practice in primary care 3-5 years later. The rest choose to subspecialize or become hospitalists.

These untenable demands on a primary care provider don’t go unnoticed by patients. In Ella’s attempts to invest in a new primary care relationship, she often doesn’t feel heard and can tell the doctor is rushed. “[Urgent care is] probably not the best care because they don’t know me, but it does seem like they are able to listen to me better,” Ella said.
 

Patients Want to Invest in Primary Care

Primary care should work like putting money in a bank account, Dr. Rotenstein said. Young patients invest in the relationship and reap the benefits of a doctor who knows them later in life when they need more complex care. But if seeing a doctor is so difficult, many young people may stop investing in their PCP relationship.

“One thing ... that I worry about in this kind of situation where patients really have to put in a lot of work to get the care they need is in inequities of care,” Dr. Rotenstein said. “We know some of our patients are more able to undertake that work.”

Alternatively, the primary care shortage could be reshaping how patients seek care. A 2023 study showed the proportion of primary care preventative visits increased over 20 years. Policies under the Affordable Care Act were the driving force. But it’s also true that sick visits are being diverted to urgent care.

Ella told this news organization she doesn’t even consider primary care for sick visits at this point. “I can’t wait 5 days or a week and a half. Unless I have bigger issues, like I need tests, I’m not even going to go to primary care.” It’s possible that other patients also see primary care as a place for testing and wellness checks and leave sick visits to retail and urgent care.
 

The Road Ahead

There’s no single fix for primary care, but experts agree that the fee-for-service model is a core issue for the specialty. In a 2021 report, the National Association of Engineering and Medicine said that primary care reform needs to include higher reimbursement rates for primary care and that US primary care should be restructured so that payers “pay primary care teams to care for people, not doctors to deliver services.”

In the current model, the doctor-patient clinic time is the only income-generating part of a primary care practice. A better model would consider the communication, administration, teams, and support doctors have to fund to provide the best primary care.

“We need to change how we pay and how much we pay, so [primary care doctors] are properly incentivized to build out a team to provide the comprehensive care you need,” Ms. Greiner said.

In the meantime, primary care doctors are adapting. Some drop down to part-time to account for the additional administrative workload. Others are transitioning to concierge services to offer the quality of care they want while getting the income they need. Still, others specialize their practice, offering primary care to a subset of the population, like older adults.

Employers are also looking to improve care access for their employees, hiring in-house doctors to provide primary care on site. Ms. Greiner recently met with a group of chief medical officers from major companies to discuss expanding primary care access via the workplace.

The efforts to adapt amid a broken system are admirable, Dr. Rotenstein said. And whatever a PCP has to do to keep practicing in primary care is laudable. The only problem with these adaptations is they largely limit a doctor’s patient pool and, therefore, limit access, she said. More significant reforms that adequately reimburse primary care and incentivize new doctors are still needed.

As for Ella, she got married. Her wife is in the military, so now she has Tricare, which comes with a more streamlined process to access primary care. However, doctor shortages are just as evident in that system. The couple called to schedule new patient appointments after their recent move to Virginia. The first available ones were 6 weeks out.
 

A version of this article appeared on Medscape.com.

By February of 2022, Ella, a 25-year-old behavioral interventionist in Colorado Springs, Colorado, was sick with strep-like symptoms for the third time in 3 months. She didn’t bother to call her doctor.

The first two times she had strep throat, she’d tried to schedule an appointment with her newest primary care doctor but couldn’t get in. They only had available appointments 5 and even 10 days out, but she’d already had symptoms for 3 days.

Until she graduated college, Ella had only known easy-access primary care. Her childhood family doctor and the nurse practitioners at her college clinic knew her. They anticipated her yearly allergies and knew about her predisposition for strep throat. Appointments were easy to schedule, and providers responded to her messages. But since entering the workforce and leaving her parent’s insurance, the kind of primary care she’d come to rely on was nearly impossible to find.

“I went to urgent care, and that became my primary care,” she told this news organization.
 

Patients Can’t Get Appointments

Primary care is in crisis. A growing number of Americans, like Ella, can’t access care when they need it. According to a 2024 report, 29% of adults and 14% of children don’t have a regular source of care. Those looking for a new primary care provider face extensive research and 6- to 9-month waits for a new patient appointment — if they can get in at all.

But even those with a primary care provider face long wait times: Days to weeks for a sick visit and months for a wellness checkup. Over one third of Medicare beneficiaries wait more than a month to see a doctor. Accessing primary care is more difficult than access to surgery, physical therapy, or rehabilitative care, according to a survey of Medicare beneficiaries by the Commonwealth Fund.

“Shortages tend to be in rural and urban underserved areas, but now, you’re hearing about primary care shortages in Boston, which is a mecca of healthcare,” said Ann Greiner, president and CEO of the Primary Care Coalition.

While retail clinics, urgent care, and telehealth help close the gap in acute needs, they miss one of primary care’s most critical benefits: A doctor who knows you. There’s strong evidence that ongoing treatment from a primary care physician (PCP) who knows your history, family, and context results in better long-term outcomes and fewer hospitalizations and emergency room visits.

If patients continue to find it too hard to break into primary care or set up an appointment, experts are concerned that they’ll stop pursuing primary care altogether.
 

Doctors’ Hands Are Tied

“I want to highlight that this is not an issue of primary care doctors not wanting to be accessible,” said Lisa Rotenstein, MD, MBA, a PCP and medical director of Ambulatory Quality and Safety at the University of California San Francisco Health. “These access issues are symptoms of the design of primary care in the United States.”

Across the United States, there’s a dearth of family medicine doctors, pediatricians, and internists. And without significantly more primary care providers, there’s simply no way for all Americans to get optimal primary care. The Health Resources and Services administration estimates a current shortage of 13,000 primary care providers. And that shortage will skyrocket to 68,000 by 2036 as the number of Americans needing care balloons and existing PCPs retire with too few trainees to fill their shoes.

The American Association of Medical Colleges predicts a slightly lower shortage in 2036 — between 20,000 and 40,000 primary care physicians — only if more residency positions are funded nationwide.

However, even with more positions, medical trainees see little incentive to pursue primary care. Young doctors are avoiding primary care because of the pressures, Dr. Rotenstein said. There’s incredible pressure to get reimbursement for primary care doctors. And the added administrative burden makes “the work life of these specialties not really manageable,” she said.
 

Continued Shortages of PCPs

“We know there’s a documented pajama time,” Ms. Greiner said. For every 1 hour spent with a patient, primary care must spend nearly 2 additional hours on electronic health records and desk work, according to a study by the American Medical Association. Even with all those additional hours devoted to getting paid, primary care doctors make an average of $103,000 less annually compared with their counterparts in surgery and oncology.

It’s not an attractive combination for a new doctor with medical debt. This year, Ms. Greiner said that residency positions in internal medicine and pediatrics went unfilled. Of those trainees who do go into a primary care specialty, many won’t last. Only half of primary care residents practice in primary care 3-5 years later. The rest choose to subspecialize or become hospitalists.

These untenable demands on a primary care provider don’t go unnoticed by patients. In Ella’s attempts to invest in a new primary care relationship, she often doesn’t feel heard and can tell the doctor is rushed. “[Urgent care is] probably not the best care because they don’t know me, but it does seem like they are able to listen to me better,” Ella said.
 

Patients Want to Invest in Primary Care

Primary care should work like putting money in a bank account, Dr. Rotenstein said. Young patients invest in the relationship and reap the benefits of a doctor who knows them later in life when they need more complex care. But if seeing a doctor is so difficult, many young people may stop investing in their PCP relationship.

“One thing ... that I worry about in this kind of situation where patients really have to put in a lot of work to get the care they need is in inequities of care,” Dr. Rotenstein said. “We know some of our patients are more able to undertake that work.”

Alternatively, the primary care shortage could be reshaping how patients seek care. A 2023 study showed the proportion of primary care preventative visits increased over 20 years. Policies under the Affordable Care Act were the driving force. But it’s also true that sick visits are being diverted to urgent care.

Ella told this news organization she doesn’t even consider primary care for sick visits at this point. “I can’t wait 5 days or a week and a half. Unless I have bigger issues, like I need tests, I’m not even going to go to primary care.” It’s possible that other patients also see primary care as a place for testing and wellness checks and leave sick visits to retail and urgent care.
 

The Road Ahead

There’s no single fix for primary care, but experts agree that the fee-for-service model is a core issue for the specialty. In a 2021 report, the National Association of Engineering and Medicine said that primary care reform needs to include higher reimbursement rates for primary care and that US primary care should be restructured so that payers “pay primary care teams to care for people, not doctors to deliver services.”

In the current model, the doctor-patient clinic time is the only income-generating part of a primary care practice. A better model would consider the communication, administration, teams, and support doctors have to fund to provide the best primary care.

“We need to change how we pay and how much we pay, so [primary care doctors] are properly incentivized to build out a team to provide the comprehensive care you need,” Ms. Greiner said.

In the meantime, primary care doctors are adapting. Some drop down to part-time to account for the additional administrative workload. Others are transitioning to concierge services to offer the quality of care they want while getting the income they need. Still, others specialize their practice, offering primary care to a subset of the population, like older adults.

Employers are also looking to improve care access for their employees, hiring in-house doctors to provide primary care on site. Ms. Greiner recently met with a group of chief medical officers from major companies to discuss expanding primary care access via the workplace.

The efforts to adapt amid a broken system are admirable, Dr. Rotenstein said. And whatever a PCP has to do to keep practicing in primary care is laudable. The only problem with these adaptations is they largely limit a doctor’s patient pool and, therefore, limit access, she said. More significant reforms that adequately reimburse primary care and incentivize new doctors are still needed.

As for Ella, she got married. Her wife is in the military, so now she has Tricare, which comes with a more streamlined process to access primary care. However, doctor shortages are just as evident in that system. The couple called to schedule new patient appointments after their recent move to Virginia. The first available ones were 6 weeks out.
 

A version of this article appeared on Medscape.com.

By February of 2022, Ella, a 25-year-old behavioral interventionist in Colorado Springs, Colorado, was sick with strep-like symptoms for the third time in 3 months. She didn’t bother to call her doctor.

The first two times she had strep throat, she’d tried to schedule an appointment with her newest primary care doctor but couldn’t get in. They only had available appointments 5 and even 10 days out, but she’d already had symptoms for 3 days.

Until she graduated college, Ella had only known easy-access primary care. Her childhood family doctor and the nurse practitioners at her college clinic knew her. They anticipated her yearly allergies and knew about her predisposition for strep throat. Appointments were easy to schedule, and providers responded to her messages. But since entering the workforce and leaving her parent’s insurance, the kind of primary care she’d come to rely on was nearly impossible to find.

“I went to urgent care, and that became my primary care,” she told this news organization.
 

Patients Can’t Get Appointments

Primary care is in crisis. A growing number of Americans, like Ella, can’t access care when they need it. According to a 2024 report, 29% of adults and 14% of children don’t have a regular source of care. Those looking for a new primary care provider face extensive research and 6- to 9-month waits for a new patient appointment — if they can get in at all.

But even those with a primary care provider face long wait times: Days to weeks for a sick visit and months for a wellness checkup. Over one third of Medicare beneficiaries wait more than a month to see a doctor. Accessing primary care is more difficult than access to surgery, physical therapy, or rehabilitative care, according to a survey of Medicare beneficiaries by the Commonwealth Fund.

“Shortages tend to be in rural and urban underserved areas, but now, you’re hearing about primary care shortages in Boston, which is a mecca of healthcare,” said Ann Greiner, president and CEO of the Primary Care Coalition.

While retail clinics, urgent care, and telehealth help close the gap in acute needs, they miss one of primary care’s most critical benefits: A doctor who knows you. There’s strong evidence that ongoing treatment from a primary care physician (PCP) who knows your history, family, and context results in better long-term outcomes and fewer hospitalizations and emergency room visits.

If patients continue to find it too hard to break into primary care or set up an appointment, experts are concerned that they’ll stop pursuing primary care altogether.
 

Doctors’ Hands Are Tied

“I want to highlight that this is not an issue of primary care doctors not wanting to be accessible,” said Lisa Rotenstein, MD, MBA, a PCP and medical director of Ambulatory Quality and Safety at the University of California San Francisco Health. “These access issues are symptoms of the design of primary care in the United States.”

Across the United States, there’s a dearth of family medicine doctors, pediatricians, and internists. And without significantly more primary care providers, there’s simply no way for all Americans to get optimal primary care. The Health Resources and Services administration estimates a current shortage of 13,000 primary care providers. And that shortage will skyrocket to 68,000 by 2036 as the number of Americans needing care balloons and existing PCPs retire with too few trainees to fill their shoes.

The American Association of Medical Colleges predicts a slightly lower shortage in 2036 — between 20,000 and 40,000 primary care physicians — only if more residency positions are funded nationwide.

However, even with more positions, medical trainees see little incentive to pursue primary care. Young doctors are avoiding primary care because of the pressures, Dr. Rotenstein said. There’s incredible pressure to get reimbursement for primary care doctors. And the added administrative burden makes “the work life of these specialties not really manageable,” she said.
 

Continued Shortages of PCPs

“We know there’s a documented pajama time,” Ms. Greiner said. For every 1 hour spent with a patient, primary care must spend nearly 2 additional hours on electronic health records and desk work, according to a study by the American Medical Association. Even with all those additional hours devoted to getting paid, primary care doctors make an average of $103,000 less annually compared with their counterparts in surgery and oncology.

It’s not an attractive combination for a new doctor with medical debt. This year, Ms. Greiner said that residency positions in internal medicine and pediatrics went unfilled. Of those trainees who do go into a primary care specialty, many won’t last. Only half of primary care residents practice in primary care 3-5 years later. The rest choose to subspecialize or become hospitalists.

These untenable demands on a primary care provider don’t go unnoticed by patients. In Ella’s attempts to invest in a new primary care relationship, she often doesn’t feel heard and can tell the doctor is rushed. “[Urgent care is] probably not the best care because they don’t know me, but it does seem like they are able to listen to me better,” Ella said.
 

Patients Want to Invest in Primary Care

Primary care should work like putting money in a bank account, Dr. Rotenstein said. Young patients invest in the relationship and reap the benefits of a doctor who knows them later in life when they need more complex care. But if seeing a doctor is so difficult, many young people may stop investing in their PCP relationship.

“One thing ... that I worry about in this kind of situation where patients really have to put in a lot of work to get the care they need is in inequities of care,” Dr. Rotenstein said. “We know some of our patients are more able to undertake that work.”

Alternatively, the primary care shortage could be reshaping how patients seek care. A 2023 study showed the proportion of primary care preventative visits increased over 20 years. Policies under the Affordable Care Act were the driving force. But it’s also true that sick visits are being diverted to urgent care.

Ella told this news organization she doesn’t even consider primary care for sick visits at this point. “I can’t wait 5 days or a week and a half. Unless I have bigger issues, like I need tests, I’m not even going to go to primary care.” It’s possible that other patients also see primary care as a place for testing and wellness checks and leave sick visits to retail and urgent care.
 

The Road Ahead

There’s no single fix for primary care, but experts agree that the fee-for-service model is a core issue for the specialty. In a 2021 report, the National Association of Engineering and Medicine said that primary care reform needs to include higher reimbursement rates for primary care and that US primary care should be restructured so that payers “pay primary care teams to care for people, not doctors to deliver services.”

In the current model, the doctor-patient clinic time is the only income-generating part of a primary care practice. A better model would consider the communication, administration, teams, and support doctors have to fund to provide the best primary care.

“We need to change how we pay and how much we pay, so [primary care doctors] are properly incentivized to build out a team to provide the comprehensive care you need,” Ms. Greiner said.

In the meantime, primary care doctors are adapting. Some drop down to part-time to account for the additional administrative workload. Others are transitioning to concierge services to offer the quality of care they want while getting the income they need. Still, others specialize their practice, offering primary care to a subset of the population, like older adults.

Employers are also looking to improve care access for their employees, hiring in-house doctors to provide primary care on site. Ms. Greiner recently met with a group of chief medical officers from major companies to discuss expanding primary care access via the workplace.

The efforts to adapt amid a broken system are admirable, Dr. Rotenstein said. And whatever a PCP has to do to keep practicing in primary care is laudable. The only problem with these adaptations is they largely limit a doctor’s patient pool and, therefore, limit access, she said. More significant reforms that adequately reimburse primary care and incentivize new doctors are still needed.

As for Ella, she got married. Her wife is in the military, so now she has Tricare, which comes with a more streamlined process to access primary care. However, doctor shortages are just as evident in that system. The couple called to schedule new patient appointments after their recent move to Virginia. The first available ones were 6 weeks out.
 

A version of this article appeared on Medscape.com.

In January 2023, Mark Lewis, MD, stood with the door slammed in his face. His partner in the practice had had enough. She accused him of sugarcoating prognoses and leaving her to tell patients the whole truth.

The reality was he just didn’t know how to grieve.

Dr. Lewis was well acquainted with cancer grief long before he became an oncologist. Dr. Lewis’ father died of a rare, hereditary cancer syndrome when he was only 14. The condition, which causes tumors to grow in the endocrine glands, can be hard to identify and, if found late, deadly.

In some ways, Dr. Lewis’ career caring for patients with advanced cancers was born out of that first loss. He centered his practice around helping patients diagnosed at late stages, like his father.

But that comes at a cost. Many patients will die.

Dr. Lewis’ encounter with his colleague led him to inventory his practice. He found that well over half of his patients died within 2 years following their advanced cancer diagnosis.

To stave off the grief of so many losses, Dr. Lewis became an eternal optimist in the clinic, in search of the Hail Mary chemotherapy, any way to eke out a few more months only to be ambushed by grief when a patient did finally pass.

At funerals — which he made every effort to attend — Dr. Lewis couldn’t help but think, “If I had done my job better, none of us with be here.” His grief started to mingle with this sense of guilt.

It became a cycle: Denial shrouded in optimism, grief, then a toxic guilt. The pattern became untenable for his colleagues. And his partner finally called him out.

Few medical specialties draw physicians as close to their patients as oncology. The long courses of treatment-spanning years can foster an intimacy that is comforting for patients and fulfilling for physicians. But that closeness can also set doctors up for an acute grief when the end of life comes.

Experts agree that no amount of training in medical school prepares an oncologist to navigate the grief that comes with losing patients. Five oncologists spoke with this news organization about the boundaries they rely on to sustain their careers.
 

Don’t Go to Funerals

Don Dizon, MD, who specializes in women’s cancers, established an essential boundary 20 years ago: Never go to funerals. In his early days at Memorial Sloan Kettering Cancer Center, the death of each patient dealt him a crushing blow. He’d go to the funerals in search of closure, but that only added to the weight of his grief.

“When I started in oncology, I just remember the most tragic cases were the ones I was taking care of,” recalled Dr. Dizon, now director of the Pelvic Malignancies Program at Lifespan Cancer Institute in Lincoln, Rhode Island.

Dr. Dizon recalled one young mother who was diagnosed with ovarian cancer. She responded to treatment, but it was short-lived, and her cancer progressed, he said. Multiple treatments followed, but none were effective. Eventually, Dr. Dizon had to tell her that “there’s nothing left to try.”

At her funeral, watching her grieving husband with their daughter who had just started to walk, Dr. Dizon was overwhelmed with despair.

“When you have to do this multiple times a year,” the grief becomes untenable, he said. Sensing the difficulty I was having as a new attending, “my boss stopped sending me patients because he knew I was in trouble emotionally.”

That’s when Dr. Dizon started looking for other ways to get closure.

Today, he tries to say his goodbyes before a patient dies. After the final treatment or before hospice, Dr. Dizon has a parting conversation with his patients to express the privilege of caring for them and all he learned from them. These talks help him and his patient connect in their last moments together.
 

The Price of Wildly Happy Days

Molly Taylor, MD, MS, a pediatric oncologist in Seattle, sees the deeply sad days as the price an oncologist pays to be witness to the “wildly happy ones.”

Dr. Taylor has gone to patients’ funerals, has even been asked to speak at them, but she has also attended patients’ weddings.

To some degree, doctors get good at compartmentalizing, and they become accustomed to tragedy, she said. But there are some patients who stick with you, “and that is a whole other level of grief,” Dr. Taylor said.

Several years into her practice, one of Dr. Taylor’s patients, someone who reminded her of her own child, died. The death came as a surprise, and the finality of it took her breath away, she said. The sadness only deepened as days went by. “I felt that mother’s grief and still do,” she said.

The patient’s funeral was one of the most difficult moments in her career as an oncologist. Even weeks later, she caught herself picturing the family huddled together that day.

Taking long walks, commiserating with colleagues who get it, and watching the occasional cat video can help take the immediate sting away. But the pain of losing a patient can be long lasting and processing that grief can be a lonely endeavor.

“We need space to recognize grief for all providers, all the people that touch these patients’ lives — the nurses, the translators, the cleaning staff,” Dr. Taylor said. Otherwise, you start to believe you’re the only one feeling the weight of the loss.

While it doesn’t make the losses any less poignant, Dr. Taylor finds solace in the good moments: Patient graduations and weddings, survivors who now volunteer at the hospital, and a patient who had a baby of her own this past year. If facing grief daily has taught Dr. Taylor anything, it is to not let the good moments pass unnoticed.
 

Towing the Line

Ten years ago, Tina Rizack, MD, walked into the ICU to see a young mother holding her 6-year-old daughter. The mother had necrotizing fasciitis that had gone undiagnosed.

As Dr. Rizack stood in the doorway watching the embrace, she saw a grim future: A child without her mother. This realization hit too close to home, she said. “I still think about that case.”

In her training, Dr. Rizack, now medical director of hematology/oncology at St. Anne’s in Fall River, Massachusetts, worked with a social worker who taught her how to deal with these tough cases — most importantly, how to not take them home with her.

Over the years, Dr. Rizack learned how to build and sustain a firm barrier between work and outside work.

She doesn’t go to funerals or give out her cell phone number. If charts need to be done, she prefers to stay late at the clinic instead of bringing them home.

And she invests in the simple moments that help her detach from the day-to-day in the clinic — rooting for her kids at their games, carving out time for family meals most days, and having relaxed movie nights on the couch.

“It’s hard sometimes,” she said. But “I really do need the line.” Because without it, she can’t show up for her patients the way she wants and needs to.

Establishing the work-life boundary means that when at work, Dr. Rizack can be all in for her patients. Even after her patients’ treatment ends, she makes sure to check on them at home or in hospice. For her, sticking with patients over the long term offers some closure.

“I want to love work, and if I’m there all the time, I’m not going to love it,” she said.
 

Trading Funerals for the Bedside

Like many other oncologists, Charles Blanke, MD, finds that going to patients’ funerals makes the loss seem more profound. Being at the bedside when they die is not as painful, he said. In fact, being there when his patients die offers him some comfort. He rarely misses a patient’s death because now Dr. Blanke’s patients can schedule their departure.

An oncologist at the Knight Cancer Institute in Portland, Oregon, Dr. Blanke specializes in end-of-life care with an emphasis on death with dignity, also known as medical aid in dying. He admits it’s not a role every physician is comfortable with.

“If you’re paralyzed by grief, you can’t do this for a living,” he said. But he’s able to do the work because he genuinely feels he’s helping patients get “the relief they so strongly desire” in their last moments.

When cancer care can’t give them the life they wanted, he can give them control over when and how they die. And the ability to honor their last wishes offers him some closure as well.

“You know what kind of end they have. You know it was peaceful. You see them achieve the thing that was the most important to them,” he said.

Despite this process, he still encounters some circumstances utterly heart-wrenching — the very young patients who have advanced disease. Some of these patients choose to die because they can’t afford to continue treatment. Others don’t have a support system. In these instances, Dr. Blanke is often the only one in the room.

Believe it or not, he said, the paperwork — and there’s a lot of it in his line of work — helps remind Dr. Blanke that patients’ last wishes are being honored.
 

Making Changes

After Dr. Lewis was confronted by his partner, he began to face the shortcomings of his own coping strategies. His practice hired a social worker to help staff process difficult experiences. After the loss of every patient, the practice comes together to share and process the loss.

For him, funerals remain helpful, providing a sort of solace, so he continues to go when he can. But how to grieve is something each doctor has to figure out, he said.

Deaths still hit hard, especially the ones he doesn’t see coming. The patients who remind him of his dad can also be hard. They restart a cycle of grief from his teenage years.

The difference now is he has space to voice those concerns and someone objective to help his process.

“It’s a privilege to prepare [patients for death] and help them build their legacy,” he said. But it’s also an unrelenting challenge to navigate that grief, he said.

Still, the grief lets Dr. Lewis know he’s still engaged.

“The day I don’t feel something is probably the day I need to take a break or walk away.”
 

A version of this article appeared on Medscape.com.

In January 2023, Mark Lewis, MD, stood with the door slammed in his face. His partner in the practice had had enough. She accused him of sugarcoating prognoses and leaving her to tell patients the whole truth.

The reality was he just didn’t know how to grieve.

Dr. Lewis was well acquainted with cancer grief long before he became an oncologist. Dr. Lewis’ father died of a rare, hereditary cancer syndrome when he was only 14. The condition, which causes tumors to grow in the endocrine glands, can be hard to identify and, if found late, deadly.

In some ways, Dr. Lewis’ career caring for patients with advanced cancers was born out of that first loss. He centered his practice around helping patients diagnosed at late stages, like his father.

But that comes at a cost. Many patients will die.

Dr. Lewis’ encounter with his colleague led him to inventory his practice. He found that well over half of his patients died within 2 years following their advanced cancer diagnosis.

To stave off the grief of so many losses, Dr. Lewis became an eternal optimist in the clinic, in search of the Hail Mary chemotherapy, any way to eke out a few more months only to be ambushed by grief when a patient did finally pass.

At funerals — which he made every effort to attend — Dr. Lewis couldn’t help but think, “If I had done my job better, none of us with be here.” His grief started to mingle with this sense of guilt.

It became a cycle: Denial shrouded in optimism, grief, then a toxic guilt. The pattern became untenable for his colleagues. And his partner finally called him out.

Few medical specialties draw physicians as close to their patients as oncology. The long courses of treatment-spanning years can foster an intimacy that is comforting for patients and fulfilling for physicians. But that closeness can also set doctors up for an acute grief when the end of life comes.

Experts agree that no amount of training in medical school prepares an oncologist to navigate the grief that comes with losing patients. Five oncologists spoke with this news organization about the boundaries they rely on to sustain their careers.
 

Don’t Go to Funerals

Don Dizon, MD, who specializes in women’s cancers, established an essential boundary 20 years ago: Never go to funerals. In his early days at Memorial Sloan Kettering Cancer Center, the death of each patient dealt him a crushing blow. He’d go to the funerals in search of closure, but that only added to the weight of his grief.

“When I started in oncology, I just remember the most tragic cases were the ones I was taking care of,” recalled Dr. Dizon, now director of the Pelvic Malignancies Program at Lifespan Cancer Institute in Lincoln, Rhode Island.

Dr. Dizon recalled one young mother who was diagnosed with ovarian cancer. She responded to treatment, but it was short-lived, and her cancer progressed, he said. Multiple treatments followed, but none were effective. Eventually, Dr. Dizon had to tell her that “there’s nothing left to try.”

At her funeral, watching her grieving husband with their daughter who had just started to walk, Dr. Dizon was overwhelmed with despair.

“When you have to do this multiple times a year,” the grief becomes untenable, he said. Sensing the difficulty I was having as a new attending, “my boss stopped sending me patients because he knew I was in trouble emotionally.”

That’s when Dr. Dizon started looking for other ways to get closure.

Today, he tries to say his goodbyes before a patient dies. After the final treatment or before hospice, Dr. Dizon has a parting conversation with his patients to express the privilege of caring for them and all he learned from them. These talks help him and his patient connect in their last moments together.
 

The Price of Wildly Happy Days

Molly Taylor, MD, MS, a pediatric oncologist in Seattle, sees the deeply sad days as the price an oncologist pays to be witness to the “wildly happy ones.”

Dr. Taylor has gone to patients’ funerals, has even been asked to speak at them, but she has also attended patients’ weddings.

To some degree, doctors get good at compartmentalizing, and they become accustomed to tragedy, she said. But there are some patients who stick with you, “and that is a whole other level of grief,” Dr. Taylor said.

Several years into her practice, one of Dr. Taylor’s patients, someone who reminded her of her own child, died. The death came as a surprise, and the finality of it took her breath away, she said. The sadness only deepened as days went by. “I felt that mother’s grief and still do,” she said.

The patient’s funeral was one of the most difficult moments in her career as an oncologist. Even weeks later, she caught herself picturing the family huddled together that day.

Taking long walks, commiserating with colleagues who get it, and watching the occasional cat video can help take the immediate sting away. But the pain of losing a patient can be long lasting and processing that grief can be a lonely endeavor.

“We need space to recognize grief for all providers, all the people that touch these patients’ lives — the nurses, the translators, the cleaning staff,” Dr. Taylor said. Otherwise, you start to believe you’re the only one feeling the weight of the loss.

While it doesn’t make the losses any less poignant, Dr. Taylor finds solace in the good moments: Patient graduations and weddings, survivors who now volunteer at the hospital, and a patient who had a baby of her own this past year. If facing grief daily has taught Dr. Taylor anything, it is to not let the good moments pass unnoticed.
 

Towing the Line

Ten years ago, Tina Rizack, MD, walked into the ICU to see a young mother holding her 6-year-old daughter. The mother had necrotizing fasciitis that had gone undiagnosed.

As Dr. Rizack stood in the doorway watching the embrace, she saw a grim future: A child without her mother. This realization hit too close to home, she said. “I still think about that case.”

In her training, Dr. Rizack, now medical director of hematology/oncology at St. Anne’s in Fall River, Massachusetts, worked with a social worker who taught her how to deal with these tough cases — most importantly, how to not take them home with her.

Over the years, Dr. Rizack learned how to build and sustain a firm barrier between work and outside work.

She doesn’t go to funerals or give out her cell phone number. If charts need to be done, she prefers to stay late at the clinic instead of bringing them home.

And she invests in the simple moments that help her detach from the day-to-day in the clinic — rooting for her kids at their games, carving out time for family meals most days, and having relaxed movie nights on the couch.

“It’s hard sometimes,” she said. But “I really do need the line.” Because without it, she can’t show up for her patients the way she wants and needs to.

Establishing the work-life boundary means that when at work, Dr. Rizack can be all in for her patients. Even after her patients’ treatment ends, she makes sure to check on them at home or in hospice. For her, sticking with patients over the long term offers some closure.

“I want to love work, and if I’m there all the time, I’m not going to love it,” she said.
 

Trading Funerals for the Bedside

Like many other oncologists, Charles Blanke, MD, finds that going to patients’ funerals makes the loss seem more profound. Being at the bedside when they die is not as painful, he said. In fact, being there when his patients die offers him some comfort. He rarely misses a patient’s death because now Dr. Blanke’s patients can schedule their departure.

An oncologist at the Knight Cancer Institute in Portland, Oregon, Dr. Blanke specializes in end-of-life care with an emphasis on death with dignity, also known as medical aid in dying. He admits it’s not a role every physician is comfortable with.

“If you’re paralyzed by grief, you can’t do this for a living,” he said. But he’s able to do the work because he genuinely feels he’s helping patients get “the relief they so strongly desire” in their last moments.

When cancer care can’t give them the life they wanted, he can give them control over when and how they die. And the ability to honor their last wishes offers him some closure as well.

“You know what kind of end they have. You know it was peaceful. You see them achieve the thing that was the most important to them,” he said.

Despite this process, he still encounters some circumstances utterly heart-wrenching — the very young patients who have advanced disease. Some of these patients choose to die because they can’t afford to continue treatment. Others don’t have a support system. In these instances, Dr. Blanke is often the only one in the room.

Believe it or not, he said, the paperwork — and there’s a lot of it in his line of work — helps remind Dr. Blanke that patients’ last wishes are being honored.
 

Making Changes

After Dr. Lewis was confronted by his partner, he began to face the shortcomings of his own coping strategies. His practice hired a social worker to help staff process difficult experiences. After the loss of every patient, the practice comes together to share and process the loss.

For him, funerals remain helpful, providing a sort of solace, so he continues to go when he can. But how to grieve is something each doctor has to figure out, he said.

Deaths still hit hard, especially the ones he doesn’t see coming. The patients who remind him of his dad can also be hard. They restart a cycle of grief from his teenage years.

The difference now is he has space to voice those concerns and someone objective to help his process.

“It’s a privilege to prepare [patients for death] and help them build their legacy,” he said. But it’s also an unrelenting challenge to navigate that grief, he said.

Still, the grief lets Dr. Lewis know he’s still engaged.

“The day I don’t feel something is probably the day I need to take a break or walk away.”
 

A version of this article appeared on Medscape.com.

In January 2023, Mark Lewis, MD, stood with the door slammed in his face. His partner in the practice had had enough. She accused him of sugarcoating prognoses and leaving her to tell patients the whole truth.

The reality was he just didn’t know how to grieve.

Dr. Lewis was well acquainted with cancer grief long before he became an oncologist. Dr. Lewis’ father died of a rare, hereditary cancer syndrome when he was only 14. The condition, which causes tumors to grow in the endocrine glands, can be hard to identify and, if found late, deadly.

In some ways, Dr. Lewis’ career caring for patients with advanced cancers was born out of that first loss. He centered his practice around helping patients diagnosed at late stages, like his father.

But that comes at a cost. Many patients will die.

Dr. Lewis’ encounter with his colleague led him to inventory his practice. He found that well over half of his patients died within 2 years following their advanced cancer diagnosis.

To stave off the grief of so many losses, Dr. Lewis became an eternal optimist in the clinic, in search of the Hail Mary chemotherapy, any way to eke out a few more months only to be ambushed by grief when a patient did finally pass.

At funerals — which he made every effort to attend — Dr. Lewis couldn’t help but think, “If I had done my job better, none of us with be here.” His grief started to mingle with this sense of guilt.

It became a cycle: Denial shrouded in optimism, grief, then a toxic guilt. The pattern became untenable for his colleagues. And his partner finally called him out.

Few medical specialties draw physicians as close to their patients as oncology. The long courses of treatment-spanning years can foster an intimacy that is comforting for patients and fulfilling for physicians. But that closeness can also set doctors up for an acute grief when the end of life comes.

Experts agree that no amount of training in medical school prepares an oncologist to navigate the grief that comes with losing patients. Five oncologists spoke with this news organization about the boundaries they rely on to sustain their careers.
 

Don’t Go to Funerals

Don Dizon, MD, who specializes in women’s cancers, established an essential boundary 20 years ago: Never go to funerals. In his early days at Memorial Sloan Kettering Cancer Center, the death of each patient dealt him a crushing blow. He’d go to the funerals in search of closure, but that only added to the weight of his grief.

“When I started in oncology, I just remember the most tragic cases were the ones I was taking care of,” recalled Dr. Dizon, now director of the Pelvic Malignancies Program at Lifespan Cancer Institute in Lincoln, Rhode Island.

Dr. Dizon recalled one young mother who was diagnosed with ovarian cancer. She responded to treatment, but it was short-lived, and her cancer progressed, he said. Multiple treatments followed, but none were effective. Eventually, Dr. Dizon had to tell her that “there’s nothing left to try.”

At her funeral, watching her grieving husband with their daughter who had just started to walk, Dr. Dizon was overwhelmed with despair.

“When you have to do this multiple times a year,” the grief becomes untenable, he said. Sensing the difficulty I was having as a new attending, “my boss stopped sending me patients because he knew I was in trouble emotionally.”

That’s when Dr. Dizon started looking for other ways to get closure.

Today, he tries to say his goodbyes before a patient dies. After the final treatment or before hospice, Dr. Dizon has a parting conversation with his patients to express the privilege of caring for them and all he learned from them. These talks help him and his patient connect in their last moments together.
 

The Price of Wildly Happy Days

Molly Taylor, MD, MS, a pediatric oncologist in Seattle, sees the deeply sad days as the price an oncologist pays to be witness to the “wildly happy ones.”

Dr. Taylor has gone to patients’ funerals, has even been asked to speak at them, but she has also attended patients’ weddings.

To some degree, doctors get good at compartmentalizing, and they become accustomed to tragedy, she said. But there are some patients who stick with you, “and that is a whole other level of grief,” Dr. Taylor said.

Several years into her practice, one of Dr. Taylor’s patients, someone who reminded her of her own child, died. The death came as a surprise, and the finality of it took her breath away, she said. The sadness only deepened as days went by. “I felt that mother’s grief and still do,” she said.

The patient’s funeral was one of the most difficult moments in her career as an oncologist. Even weeks later, she caught herself picturing the family huddled together that day.

Taking long walks, commiserating with colleagues who get it, and watching the occasional cat video can help take the immediate sting away. But the pain of losing a patient can be long lasting and processing that grief can be a lonely endeavor.

“We need space to recognize grief for all providers, all the people that touch these patients’ lives — the nurses, the translators, the cleaning staff,” Dr. Taylor said. Otherwise, you start to believe you’re the only one feeling the weight of the loss.

While it doesn’t make the losses any less poignant, Dr. Taylor finds solace in the good moments: Patient graduations and weddings, survivors who now volunteer at the hospital, and a patient who had a baby of her own this past year. If facing grief daily has taught Dr. Taylor anything, it is to not let the good moments pass unnoticed.
 

Towing the Line

Ten years ago, Tina Rizack, MD, walked into the ICU to see a young mother holding her 6-year-old daughter. The mother had necrotizing fasciitis that had gone undiagnosed.

As Dr. Rizack stood in the doorway watching the embrace, she saw a grim future: A child without her mother. This realization hit too close to home, she said. “I still think about that case.”

In her training, Dr. Rizack, now medical director of hematology/oncology at St. Anne’s in Fall River, Massachusetts, worked with a social worker who taught her how to deal with these tough cases — most importantly, how to not take them home with her.

Over the years, Dr. Rizack learned how to build and sustain a firm barrier between work and outside work.

She doesn’t go to funerals or give out her cell phone number. If charts need to be done, she prefers to stay late at the clinic instead of bringing them home.

And she invests in the simple moments that help her detach from the day-to-day in the clinic — rooting for her kids at their games, carving out time for family meals most days, and having relaxed movie nights on the couch.

“It’s hard sometimes,” she said. But “I really do need the line.” Because without it, she can’t show up for her patients the way she wants and needs to.

Establishing the work-life boundary means that when at work, Dr. Rizack can be all in for her patients. Even after her patients’ treatment ends, she makes sure to check on them at home or in hospice. For her, sticking with patients over the long term offers some closure.

“I want to love work, and if I’m there all the time, I’m not going to love it,” she said.
 

Trading Funerals for the Bedside

Like many other oncologists, Charles Blanke, MD, finds that going to patients’ funerals makes the loss seem more profound. Being at the bedside when they die is not as painful, he said. In fact, being there when his patients die offers him some comfort. He rarely misses a patient’s death because now Dr. Blanke’s patients can schedule their departure.

An oncologist at the Knight Cancer Institute in Portland, Oregon, Dr. Blanke specializes in end-of-life care with an emphasis on death with dignity, also known as medical aid in dying. He admits it’s not a role every physician is comfortable with.

“If you’re paralyzed by grief, you can’t do this for a living,” he said. But he’s able to do the work because he genuinely feels he’s helping patients get “the relief they so strongly desire” in their last moments.

When cancer care can’t give them the life they wanted, he can give them control over when and how they die. And the ability to honor their last wishes offers him some closure as well.

“You know what kind of end they have. You know it was peaceful. You see them achieve the thing that was the most important to them,” he said.

Despite this process, he still encounters some circumstances utterly heart-wrenching — the very young patients who have advanced disease. Some of these patients choose to die because they can’t afford to continue treatment. Others don’t have a support system. In these instances, Dr. Blanke is often the only one in the room.

Believe it or not, he said, the paperwork — and there’s a lot of it in his line of work — helps remind Dr. Blanke that patients’ last wishes are being honored.
 

Making Changes

After Dr. Lewis was confronted by his partner, he began to face the shortcomings of his own coping strategies. His practice hired a social worker to help staff process difficult experiences. After the loss of every patient, the practice comes together to share and process the loss.

For him, funerals remain helpful, providing a sort of solace, so he continues to go when he can. But how to grieve is something each doctor has to figure out, he said.

Deaths still hit hard, especially the ones he doesn’t see coming. The patients who remind him of his dad can also be hard. They restart a cycle of grief from his teenage years.

The difference now is he has space to voice those concerns and someone objective to help his process.

“It’s a privilege to prepare [patients for death] and help them build their legacy,” he said. But it’s also an unrelenting challenge to navigate that grief, he said.

Still, the grief lets Dr. Lewis know he’s still engaged.

“The day I don’t feel something is probably the day I need to take a break or walk away.”
 

A version of this article appeared on Medscape.com.

Primary care visits for preventive services have nearly doubled since 2001, and new research suggests these visits give clinicians and patients more valuable time together.

The proportion of preventive services–focused visits to primary care increased from 12.8% in 2001 to 24.6% in 2019, according to findings from a cross-sectional study of adult primary care visits that was published in Health Affairs.

The increase over time persisted across all age groups and insurance types, including private insurance, Medicaid, self-pay, and workers’ compensation. Medicare beneficiaries exhibited the largest increases in preventive visits, up 10 percentage points over the two-decade span.

The uptick is likely associated with policies enacted under the Affordable Care Act, which made preventive exams a unique visit type with no copay for Medicare and most other insurance plans, according to the researchers. The data showed a spike in preventive visits for patients aged 18-44 years shortly after the law was passed.

But “other factors in our health care system could have reduced the impact of the policies,” said Lisa Rotenstein, MD, a primary care physician at the Center for Primary Care at Harvard Medical School, Boston, who is the lead author of the study.

National trends show that fewer Americans have a primary care clinician, and those who do see these specialists less frequently than in previous decades. In addition, the primary care workforce is shrinking, even as more nurse practitioners and physician assistants join the specialty.

“I’m surprised and pleased,” said Ann Greiner, president of the Primary Care Coalition, an organization working to expand access to primary care.

Although the study in Health Affairs did not examine trends in primary care visits overall, the researchers highlighted several findings from previous research that found declines in these visits. That research also found that there were fewer adults who had a usual source of primary care.

“We know there’s a decline in primary care visits, which is where preventive care happens,” Ms. Greiner said.

The new study, which used data from the National Ambulatory Medical Care Survey, showed that physicians spent significantly more time with patients during preventive visits, compared with problem-based visits.

Physicians were also significantly more likely to counsel patients, order preventive labs, or order a preventive image or procedure during these exams. Nurse practitioner visits or physician assistant visits were not included in the study.

Christina Breit, MD, a primary care physician at Norton’s Medical Group, Louisville, Ky., said she usually spends 30-40 minutes conducting a physical exam, compared with only 10 or 15 minutes during an acute visit.

“When they come in for the preventive visit is when we really figure out the social determinants of health,” Dr. Breit said.

During this extended time discussing patient health risks, preferences, and daily routine, Dr. Breit starts to pick up on any red flags that she would have missed in a 10-minute acute care appointment, which helps guide care decisions.

On top of the well-established benefits of preventive care, the extended time fosters an improved physician-patient relationship, Dr. Rotenstein said. Longitudinal relationships between doctor and patient are linked to lower patient costs and hospitalizations.

“That’s supposed to be one of our primary goals, is to use preventive care as a stopgap for chronic illness,” said Diane Thierys, NP, a family nurse practitioner in Columbia, Ky.

Over the past 20 years of her 35-year-long career, she has been able to allot more time to these visits while being adequately reimbursed, she said. In spring 2023, she started providing home wellness visits for Medicare enrollees.

“There’s definitely been a long overdue increase” in preventive care visits in the past 20 years, Ms. Thierys told this news organization. “Before that, visits were focused on the chief complaint of the day.”

But an increase in preventive visits may also reflect the fact that patients are seeking out other specialists for various ailments.

“Some of the simple, problem-based visits have actually left primary care,” said Tim Anderson, MD, MAS, a primary care physician and health services researcher at the University of Pittsburgh. “The results may be indicative of the migration of ear infections and sore throats to urgent care and pharmacy-based minute clinics, for instance.”

Although urgent care clinicians usually do not have medical records or patient histories, this setting can be more accessible and convenient, Ms. Greiner said.

One limitation of the study is that it only evaluated trends through 2019. The COVID-19 pandemic put intense stress on primary care clinicians and limited access to this care.

“Will we continue to see increases in preventive visits? We will have to track and see,” Ms. Greiner said.

The study was independently supported. Dr. Rotenstein reports no relevant financial relationships.

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

Primary care visits for preventive services have nearly doubled since 2001, and new research suggests these visits give clinicians and patients more valuable time together.

The proportion of preventive services–focused visits to primary care increased from 12.8% in 2001 to 24.6% in 2019, according to findings from a cross-sectional study of adult primary care visits that was published in Health Affairs.

The increase over time persisted across all age groups and insurance types, including private insurance, Medicaid, self-pay, and workers’ compensation. Medicare beneficiaries exhibited the largest increases in preventive visits, up 10 percentage points over the two-decade span.

The uptick is likely associated with policies enacted under the Affordable Care Act, which made preventive exams a unique visit type with no copay for Medicare and most other insurance plans, according to the researchers. The data showed a spike in preventive visits for patients aged 18-44 years shortly after the law was passed.

But “other factors in our health care system could have reduced the impact of the policies,” said Lisa Rotenstein, MD, a primary care physician at the Center for Primary Care at Harvard Medical School, Boston, who is the lead author of the study.

National trends show that fewer Americans have a primary care clinician, and those who do see these specialists less frequently than in previous decades. In addition, the primary care workforce is shrinking, even as more nurse practitioners and physician assistants join the specialty.

“I’m surprised and pleased,” said Ann Greiner, president of the Primary Care Coalition, an organization working to expand access to primary care.

Although the study in Health Affairs did not examine trends in primary care visits overall, the researchers highlighted several findings from previous research that found declines in these visits. That research also found that there were fewer adults who had a usual source of primary care.

“We know there’s a decline in primary care visits, which is where preventive care happens,” Ms. Greiner said.

The new study, which used data from the National Ambulatory Medical Care Survey, showed that physicians spent significantly more time with patients during preventive visits, compared with problem-based visits.

Physicians were also significantly more likely to counsel patients, order preventive labs, or order a preventive image or procedure during these exams. Nurse practitioner visits or physician assistant visits were not included in the study.

Christina Breit, MD, a primary care physician at Norton’s Medical Group, Louisville, Ky., said she usually spends 30-40 minutes conducting a physical exam, compared with only 10 or 15 minutes during an acute visit.

“When they come in for the preventive visit is when we really figure out the social determinants of health,” Dr. Breit said.

During this extended time discussing patient health risks, preferences, and daily routine, Dr. Breit starts to pick up on any red flags that she would have missed in a 10-minute acute care appointment, which helps guide care decisions.

On top of the well-established benefits of preventive care, the extended time fosters an improved physician-patient relationship, Dr. Rotenstein said. Longitudinal relationships between doctor and patient are linked to lower patient costs and hospitalizations.

“That’s supposed to be one of our primary goals, is to use preventive care as a stopgap for chronic illness,” said Diane Thierys, NP, a family nurse practitioner in Columbia, Ky.

Over the past 20 years of her 35-year-long career, she has been able to allot more time to these visits while being adequately reimbursed, she said. In spring 2023, she started providing home wellness visits for Medicare enrollees.

“There’s definitely been a long overdue increase” in preventive care visits in the past 20 years, Ms. Thierys told this news organization. “Before that, visits were focused on the chief complaint of the day.”

But an increase in preventive visits may also reflect the fact that patients are seeking out other specialists for various ailments.

“Some of the simple, problem-based visits have actually left primary care,” said Tim Anderson, MD, MAS, a primary care physician and health services researcher at the University of Pittsburgh. “The results may be indicative of the migration of ear infections and sore throats to urgent care and pharmacy-based minute clinics, for instance.”

Although urgent care clinicians usually do not have medical records or patient histories, this setting can be more accessible and convenient, Ms. Greiner said.

One limitation of the study is that it only evaluated trends through 2019. The COVID-19 pandemic put intense stress on primary care clinicians and limited access to this care.

“Will we continue to see increases in preventive visits? We will have to track and see,” Ms. Greiner said.

The study was independently supported. Dr. Rotenstein reports no relevant financial relationships.

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

Primary care visits for preventive services have nearly doubled since 2001, and new research suggests these visits give clinicians and patients more valuable time together.

The proportion of preventive services–focused visits to primary care increased from 12.8% in 2001 to 24.6% in 2019, according to findings from a cross-sectional study of adult primary care visits that was published in Health Affairs.

The increase over time persisted across all age groups and insurance types, including private insurance, Medicaid, self-pay, and workers’ compensation. Medicare beneficiaries exhibited the largest increases in preventive visits, up 10 percentage points over the two-decade span.

The uptick is likely associated with policies enacted under the Affordable Care Act, which made preventive exams a unique visit type with no copay for Medicare and most other insurance plans, according to the researchers. The data showed a spike in preventive visits for patients aged 18-44 years shortly after the law was passed.

But “other factors in our health care system could have reduced the impact of the policies,” said Lisa Rotenstein, MD, a primary care physician at the Center for Primary Care at Harvard Medical School, Boston, who is the lead author of the study.

National trends show that fewer Americans have a primary care clinician, and those who do see these specialists less frequently than in previous decades. In addition, the primary care workforce is shrinking, even as more nurse practitioners and physician assistants join the specialty.

“I’m surprised and pleased,” said Ann Greiner, president of the Primary Care Coalition, an organization working to expand access to primary care.

Although the study in Health Affairs did not examine trends in primary care visits overall, the researchers highlighted several findings from previous research that found declines in these visits. That research also found that there were fewer adults who had a usual source of primary care.

“We know there’s a decline in primary care visits, which is where preventive care happens,” Ms. Greiner said.

The new study, which used data from the National Ambulatory Medical Care Survey, showed that physicians spent significantly more time with patients during preventive visits, compared with problem-based visits.

Physicians were also significantly more likely to counsel patients, order preventive labs, or order a preventive image or procedure during these exams. Nurse practitioner visits or physician assistant visits were not included in the study.

Christina Breit, MD, a primary care physician at Norton’s Medical Group, Louisville, Ky., said she usually spends 30-40 minutes conducting a physical exam, compared with only 10 or 15 minutes during an acute visit.

“When they come in for the preventive visit is when we really figure out the social determinants of health,” Dr. Breit said.

During this extended time discussing patient health risks, preferences, and daily routine, Dr. Breit starts to pick up on any red flags that she would have missed in a 10-minute acute care appointment, which helps guide care decisions.

On top of the well-established benefits of preventive care, the extended time fosters an improved physician-patient relationship, Dr. Rotenstein said. Longitudinal relationships between doctor and patient are linked to lower patient costs and hospitalizations.

“That’s supposed to be one of our primary goals, is to use preventive care as a stopgap for chronic illness,” said Diane Thierys, NP, a family nurse practitioner in Columbia, Ky.

Over the past 20 years of her 35-year-long career, she has been able to allot more time to these visits while being adequately reimbursed, she said. In spring 2023, she started providing home wellness visits for Medicare enrollees.

“There’s definitely been a long overdue increase” in preventive care visits in the past 20 years, Ms. Thierys told this news organization. “Before that, visits were focused on the chief complaint of the day.”

But an increase in preventive visits may also reflect the fact that patients are seeking out other specialists for various ailments.

“Some of the simple, problem-based visits have actually left primary care,” said Tim Anderson, MD, MAS, a primary care physician and health services researcher at the University of Pittsburgh. “The results may be indicative of the migration of ear infections and sore throats to urgent care and pharmacy-based minute clinics, for instance.”

Although urgent care clinicians usually do not have medical records or patient histories, this setting can be more accessible and convenient, Ms. Greiner said.

One limitation of the study is that it only evaluated trends through 2019. The COVID-19 pandemic put intense stress on primary care clinicians and limited access to this care.

“Will we continue to see increases in preventive visits? We will have to track and see,” Ms. Greiner said.

The study was independently supported. Dr. Rotenstein reports no relevant financial relationships.

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

Artificial intelligence can distinguish overlapping inflammatory conditions with total accuracy, according to a new study presented at the annual meeting of the American College of Rheumatology.

Texas pediatricians faced a conundrum during the pandemic. Endemic typhus, a flea-borne tropical infection common to the region, is nearly indistinguishable from multisystem inflammatory syndrome in children (MIS-C), a rare condition set in motion by SARS-CoV-2 infection. Children with either ailment had seemingly identical symptoms: fever, rash, gastrointestinal issues, and in need of swift treatment. A diagnosis of endemic typhus can take 4-6 days to confirm.

Tiphanie Vogel, MD, PhD, a pediatric rheumatologist at Texas Children’s Hospital, Houston, and colleagues sought to create a tool to hasten diagnosis and, ideally, treatment. To do so, they incorporated machine learning and clinical factors available within the first 6 hours of the onset of symptoms.

The team analyzed 49 demographic, clinical, and laboratory measures from the medical records of 133 children with MIS-C and 87 with endemic typhus. Using deep learning, they narrowed the model to 30 essential features that became the backbone of AI-MET, a two-phase clinical-decision support system.

Phase 1 uses 17 clinical factors and can be performed on paper. If a patient’s score in phase 1 is not determinative, clinicians proceed to phase 2, which uses an additional 13 weighted factors and machine learning.

In testing, the two-part tool classified each of the 220 test patients perfectly. And it diagnosed a second group of 111 patients with MIS-C with 99% (110/111) accuracy.

Of note, “that first step classifies [a patient] correctly half of the time,” Dr. Vogel said, so the second, AI phase of the tool was necessary for only half of cases. Dr. Vogel said that’s a good sign; it means that the tool is useful in settings where AI may not always be feasible, like in a busy ED.

Melissa Mizesko, MD, a pediatric rheumatologist at Driscoll Children’s Hospital in Corpus Christi, Tex., said that the new tool could help clinicians streamline care. When cases of MIS-C peaked in Texas, clinicians often would start sick children on doxycycline and treat for MIS-C at the same time, then wait to see whether the antibiotic brought the fever down.

“This [new tool] is helpful if you live in a part of the country that has typhus,” said Jane Burns, MD, director of the Kawasaki Disease Research Center at the University of California, San Diego, who helped develop a similar AI-based tool to distinguish MIS-C from Kawasaki disease. But she encouraged the researchers to expand their testing to include other conditions. Although the AI model Dr. Vogel’s group developed can pinpoint MIS-C or endemic typhus, what if a child has neither condition? “It’s not often you’re dealing with a diagnosis between just two specific diseases,” Dr. Burns said.

Dr. Vogel is also interested in making AI-MET more efficient. “This go-round we prioritized perfect accuracy,” she said. But 30 clinical factors, with 17 of them recorded and calculated by hand, is a lot. “Could we still get this to be very accurate, maybe not perfect, with less inputs?”

In addition to refining AI-MET, which Texas Children’s eventually hopes to make available to other institutions, Dr. Vogel and associates are also considering other use cases for AI. Lupus is one option. “Maybe with machine learning we could identify clues at diagnosis that would help recommend targeted treatment,” she said

Dr. Vogel disclosed potential conflicts of interest with Moderna, Novartis, Pfizer, and SOBI. Dr. Burns and Dr. Mizesko disclosed no relevant conflicts of interest.

A version of this article appeared on Medscape.com.

Artificial intelligence can distinguish overlapping inflammatory conditions with total accuracy, according to a new study presented at the annual meeting of the American College of Rheumatology.

Texas pediatricians faced a conundrum during the pandemic. Endemic typhus, a flea-borne tropical infection common to the region, is nearly indistinguishable from multisystem inflammatory syndrome in children (MIS-C), a rare condition set in motion by SARS-CoV-2 infection. Children with either ailment had seemingly identical symptoms: fever, rash, gastrointestinal issues, and in need of swift treatment. A diagnosis of endemic typhus can take 4-6 days to confirm.

Tiphanie Vogel, MD, PhD, a pediatric rheumatologist at Texas Children’s Hospital, Houston, and colleagues sought to create a tool to hasten diagnosis and, ideally, treatment. To do so, they incorporated machine learning and clinical factors available within the first 6 hours of the onset of symptoms.

The team analyzed 49 demographic, clinical, and laboratory measures from the medical records of 133 children with MIS-C and 87 with endemic typhus. Using deep learning, they narrowed the model to 30 essential features that became the backbone of AI-MET, a two-phase clinical-decision support system.

Phase 1 uses 17 clinical factors and can be performed on paper. If a patient’s score in phase 1 is not determinative, clinicians proceed to phase 2, which uses an additional 13 weighted factors and machine learning.

In testing, the two-part tool classified each of the 220 test patients perfectly. And it diagnosed a second group of 111 patients with MIS-C with 99% (110/111) accuracy.

Of note, “that first step classifies [a patient] correctly half of the time,” Dr. Vogel said, so the second, AI phase of the tool was necessary for only half of cases. Dr. Vogel said that’s a good sign; it means that the tool is useful in settings where AI may not always be feasible, like in a busy ED.

Melissa Mizesko, MD, a pediatric rheumatologist at Driscoll Children’s Hospital in Corpus Christi, Tex., said that the new tool could help clinicians streamline care. When cases of MIS-C peaked in Texas, clinicians often would start sick children on doxycycline and treat for MIS-C at the same time, then wait to see whether the antibiotic brought the fever down.

“This [new tool] is helpful if you live in a part of the country that has typhus,” said Jane Burns, MD, director of the Kawasaki Disease Research Center at the University of California, San Diego, who helped develop a similar AI-based tool to distinguish MIS-C from Kawasaki disease. But she encouraged the researchers to expand their testing to include other conditions. Although the AI model Dr. Vogel’s group developed can pinpoint MIS-C or endemic typhus, what if a child has neither condition? “It’s not often you’re dealing with a diagnosis between just two specific diseases,” Dr. Burns said.

Dr. Vogel is also interested in making AI-MET more efficient. “This go-round we prioritized perfect accuracy,” she said. But 30 clinical factors, with 17 of them recorded and calculated by hand, is a lot. “Could we still get this to be very accurate, maybe not perfect, with less inputs?”

In addition to refining AI-MET, which Texas Children’s eventually hopes to make available to other institutions, Dr. Vogel and associates are also considering other use cases for AI. Lupus is one option. “Maybe with machine learning we could identify clues at diagnosis that would help recommend targeted treatment,” she said

Dr. Vogel disclosed potential conflicts of interest with Moderna, Novartis, Pfizer, and SOBI. Dr. Burns and Dr. Mizesko disclosed no relevant conflicts of interest.

A version of this article appeared on Medscape.com.

Artificial intelligence can distinguish overlapping inflammatory conditions with total accuracy, according to a new study presented at the annual meeting of the American College of Rheumatology.

Texas pediatricians faced a conundrum during the pandemic. Endemic typhus, a flea-borne tropical infection common to the region, is nearly indistinguishable from multisystem inflammatory syndrome in children (MIS-C), a rare condition set in motion by SARS-CoV-2 infection. Children with either ailment had seemingly identical symptoms: fever, rash, gastrointestinal issues, and in need of swift treatment. A diagnosis of endemic typhus can take 4-6 days to confirm.

Tiphanie Vogel, MD, PhD, a pediatric rheumatologist at Texas Children’s Hospital, Houston, and colleagues sought to create a tool to hasten diagnosis and, ideally, treatment. To do so, they incorporated machine learning and clinical factors available within the first 6 hours of the onset of symptoms.

The team analyzed 49 demographic, clinical, and laboratory measures from the medical records of 133 children with MIS-C and 87 with endemic typhus. Using deep learning, they narrowed the model to 30 essential features that became the backbone of AI-MET, a two-phase clinical-decision support system.

Phase 1 uses 17 clinical factors and can be performed on paper. If a patient’s score in phase 1 is not determinative, clinicians proceed to phase 2, which uses an additional 13 weighted factors and machine learning.

In testing, the two-part tool classified each of the 220 test patients perfectly. And it diagnosed a second group of 111 patients with MIS-C with 99% (110/111) accuracy.

Of note, “that first step classifies [a patient] correctly half of the time,” Dr. Vogel said, so the second, AI phase of the tool was necessary for only half of cases. Dr. Vogel said that’s a good sign; it means that the tool is useful in settings where AI may not always be feasible, like in a busy ED.

Melissa Mizesko, MD, a pediatric rheumatologist at Driscoll Children’s Hospital in Corpus Christi, Tex., said that the new tool could help clinicians streamline care. When cases of MIS-C peaked in Texas, clinicians often would start sick children on doxycycline and treat for MIS-C at the same time, then wait to see whether the antibiotic brought the fever down.

“This [new tool] is helpful if you live in a part of the country that has typhus,” said Jane Burns, MD, director of the Kawasaki Disease Research Center at the University of California, San Diego, who helped develop a similar AI-based tool to distinguish MIS-C from Kawasaki disease. But she encouraged the researchers to expand their testing to include other conditions. Although the AI model Dr. Vogel’s group developed can pinpoint MIS-C or endemic typhus, what if a child has neither condition? “It’s not often you’re dealing with a diagnosis between just two specific diseases,” Dr. Burns said.

Dr. Vogel is also interested in making AI-MET more efficient. “This go-round we prioritized perfect accuracy,” she said. But 30 clinical factors, with 17 of them recorded and calculated by hand, is a lot. “Could we still get this to be very accurate, maybe not perfect, with less inputs?”

In addition to refining AI-MET, which Texas Children’s eventually hopes to make available to other institutions, Dr. Vogel and associates are also considering other use cases for AI. Lupus is one option. “Maybe with machine learning we could identify clues at diagnosis that would help recommend targeted treatment,” she said

Dr. Vogel disclosed potential conflicts of interest with Moderna, Novartis, Pfizer, and SOBI. Dr. Burns and Dr. Mizesko disclosed no relevant conflicts of interest.

A version of this article appeared on Medscape.com.

Adolescents and young adults who smoked and vaped were more likely to report ocular problems including dryness, redness, pain, blurry vision, light sensitivity, and headaches, according to an observational study published in JAMA Ophthalmology.

Eye symptoms were significantly worse among young people who reported using both cigarettes and e-cigarettes than for those who said they used only one of the products, according to researchers. Symptoms were particularly frequent and severe among those who had used both products in the prior week. 

“In ophthalmology clinics, I’ve increasingly noticed patients, particularly adolescents and young adults, presenting with eye-related symptoms such as dryness, irritation, and even vision disturbances,” said Anne Xuan-Lan Nguyen, MDCM, an ophthalmology resident at the University of Toronto, who led the study. 

Many of these patients said they did not use contact lenses or take medications associated with eye problems, but they did report a history of using e-cigarettes and cigarettes. 

This “sparked my curiosity about the possible link between smoking or vaping and ocular symptoms,” Dr. Nguyen, who conducted the research as a medical student at McGill University in Montreal, told this news organization. 

E-cigarettes are the most popular tobacco product among young people. Public health data show an increasing trend toward both vaping and smoking cigarettes, known as dual use. An estimated 40% of middle- and high school–aged tobacco users report using two or more tobacco products, according to the Centers for Disease Control and Prevention. Cigarette use has been linked to ocular damage, but the effects of e-cigarettes on eyesight and the combined effect with cigarettes are not as well known. 

Dr. Nguyen and her colleagues surveyed more than 4,000 people aged 13-24 about their use of cigarettes or e-cigarettes in the last 30 days, the last 7 days, or ever. Half said they had never used any tobacco product and one quarter reported having used cigarettes, vapes, or both in the last month. More than 900 respondents said they had used one or both tobacco products in the last week. 

Of the respondents who had ever vaped, 55.9% said they also used cigarettes. These dual users reported more severe and frequent eye symptoms compared with users of either product alone. Up to 4% of respondents who had ever been a dual user reported daily, severe, or very severe ocular symptoms – more than in the cigarette-only or e-cigarette-only groups. 

More frequent tobacco use also was associated with more ocular symptoms. Young people who smoked or vaped in the previous week reported more symptoms than did the 30-day group, who reported more symptoms than the ever-user group (those who had taken at least a puff but not in the last month).

“All these conditions we know are worse as you get older,” said Laura B. Enyedi, MD, pediatric ophthalmologist at the Duke Eye Center in Durham, N.C., who was not associated with the study. “So if young people are having symptoms, it doesn’t bode well for them as they age.”

E-cigarette use alone did not appear to be linked to eye ailments, according to the findings. But to Dr. Nguyen’s surprise the survey results showed users of vaping products spent the most time worried about their eye health compared with all other participants. Users who smoked only cigarettes reported ocular symptoms, but not as severe or frequent as those of dual users. 

The researchers hypothesized that ocular problems caused by vapes and cigarettes could be classified as oxidative damage. The combustion of the cigarette and the e-cigarette solvent (propylene glycol) potentially generates free radicals that can cause oxidative stress, damaging the ocular surface and film, Dr. Nguyen said. 

Ophthalmologists are “always asking about contact lens use, lid hygiene, and screen time. Here’s another thing to consider when we get those common, nonspecific complaints of symptoms like dryness, redness, and burning,” Dr. Enyedi said.

Given the observational nature of the study, the researchers cannot confirm that dual use causes ocular symptoms. But given the public health challenge that tobacco use already presents for young people, the findings provide yet another reason to counsel against tobacco use and provide cessation options, Dr. Nguyen said. 

“This study is just one of many, many studies showing a significant relationship among smoking, e-cigarette use, and health outcomes,” said Bonnie Halpern-Felsher, PhD, professor of pediatrics at Stanford (Calif.) University and a coauthor of the study. “We clearly need to help young people not use at all, or quit or cut back if using.” 

This study was supported by the Taube Research Faculty Scholar Endowment; the National Heart, Lung, and Blood Institute; the Food and Drug Administration Center for Tobacco Products; the National Cancer Institute; the Stanford Maternal and Child Health Research Institute; and the Research to Prevent Blindness and National Eye Institute. Dr. Halpern-Felsher reported receiving personal fees as an expert scientist in litigation against some e-cigarette companies. The other study authors and Dr. Enyedi reported no relevant financial relationships.

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

Adolescents and young adults who smoked and vaped were more likely to report ocular problems including dryness, redness, pain, blurry vision, light sensitivity, and headaches, according to an observational study published in JAMA Ophthalmology.

Eye symptoms were significantly worse among young people who reported using both cigarettes and e-cigarettes than for those who said they used only one of the products, according to researchers. Symptoms were particularly frequent and severe among those who had used both products in the prior week. 

“In ophthalmology clinics, I’ve increasingly noticed patients, particularly adolescents and young adults, presenting with eye-related symptoms such as dryness, irritation, and even vision disturbances,” said Anne Xuan-Lan Nguyen, MDCM, an ophthalmology resident at the University of Toronto, who led the study. 

Many of these patients said they did not use contact lenses or take medications associated with eye problems, but they did report a history of using e-cigarettes and cigarettes. 

This “sparked my curiosity about the possible link between smoking or vaping and ocular symptoms,” Dr. Nguyen, who conducted the research as a medical student at McGill University in Montreal, told this news organization. 

E-cigarettes are the most popular tobacco product among young people. Public health data show an increasing trend toward both vaping and smoking cigarettes, known as dual use. An estimated 40% of middle- and high school–aged tobacco users report using two or more tobacco products, according to the Centers for Disease Control and Prevention. Cigarette use has been linked to ocular damage, but the effects of e-cigarettes on eyesight and the combined effect with cigarettes are not as well known. 

Dr. Nguyen and her colleagues surveyed more than 4,000 people aged 13-24 about their use of cigarettes or e-cigarettes in the last 30 days, the last 7 days, or ever. Half said they had never used any tobacco product and one quarter reported having used cigarettes, vapes, or both in the last month. More than 900 respondents said they had used one or both tobacco products in the last week. 

Of the respondents who had ever vaped, 55.9% said they also used cigarettes. These dual users reported more severe and frequent eye symptoms compared with users of either product alone. Up to 4% of respondents who had ever been a dual user reported daily, severe, or very severe ocular symptoms – more than in the cigarette-only or e-cigarette-only groups. 

More frequent tobacco use also was associated with more ocular symptoms. Young people who smoked or vaped in the previous week reported more symptoms than did the 30-day group, who reported more symptoms than the ever-user group (those who had taken at least a puff but not in the last month).

“All these conditions we know are worse as you get older,” said Laura B. Enyedi, MD, pediatric ophthalmologist at the Duke Eye Center in Durham, N.C., who was not associated with the study. “So if young people are having symptoms, it doesn’t bode well for them as they age.”

E-cigarette use alone did not appear to be linked to eye ailments, according to the findings. But to Dr. Nguyen’s surprise the survey results showed users of vaping products spent the most time worried about their eye health compared with all other participants. Users who smoked only cigarettes reported ocular symptoms, but not as severe or frequent as those of dual users. 

The researchers hypothesized that ocular problems caused by vapes and cigarettes could be classified as oxidative damage. The combustion of the cigarette and the e-cigarette solvent (propylene glycol) potentially generates free radicals that can cause oxidative stress, damaging the ocular surface and film, Dr. Nguyen said. 

Ophthalmologists are “always asking about contact lens use, lid hygiene, and screen time. Here’s another thing to consider when we get those common, nonspecific complaints of symptoms like dryness, redness, and burning,” Dr. Enyedi said.

Given the observational nature of the study, the researchers cannot confirm that dual use causes ocular symptoms. But given the public health challenge that tobacco use already presents for young people, the findings provide yet another reason to counsel against tobacco use and provide cessation options, Dr. Nguyen said. 

“This study is just one of many, many studies showing a significant relationship among smoking, e-cigarette use, and health outcomes,” said Bonnie Halpern-Felsher, PhD, professor of pediatrics at Stanford (Calif.) University and a coauthor of the study. “We clearly need to help young people not use at all, or quit or cut back if using.” 

This study was supported by the Taube Research Faculty Scholar Endowment; the National Heart, Lung, and Blood Institute; the Food and Drug Administration Center for Tobacco Products; the National Cancer Institute; the Stanford Maternal and Child Health Research Institute; and the Research to Prevent Blindness and National Eye Institute. Dr. Halpern-Felsher reported receiving personal fees as an expert scientist in litigation against some e-cigarette companies. The other study authors and Dr. Enyedi reported no relevant financial relationships.

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

Adolescents and young adults who smoked and vaped were more likely to report ocular problems including dryness, redness, pain, blurry vision, light sensitivity, and headaches, according to an observational study published in JAMA Ophthalmology.

Eye symptoms were significantly worse among young people who reported using both cigarettes and e-cigarettes than for those who said they used only one of the products, according to researchers. Symptoms were particularly frequent and severe among those who had used both products in the prior week. 

“In ophthalmology clinics, I’ve increasingly noticed patients, particularly adolescents and young adults, presenting with eye-related symptoms such as dryness, irritation, and even vision disturbances,” said Anne Xuan-Lan Nguyen, MDCM, an ophthalmology resident at the University of Toronto, who led the study. 

Many of these patients said they did not use contact lenses or take medications associated with eye problems, but they did report a history of using e-cigarettes and cigarettes. 

This “sparked my curiosity about the possible link between smoking or vaping and ocular symptoms,” Dr. Nguyen, who conducted the research as a medical student at McGill University in Montreal, told this news organization. 

E-cigarettes are the most popular tobacco product among young people. Public health data show an increasing trend toward both vaping and smoking cigarettes, known as dual use. An estimated 40% of middle- and high school–aged tobacco users report using two or more tobacco products, according to the Centers for Disease Control and Prevention. Cigarette use has been linked to ocular damage, but the effects of e-cigarettes on eyesight and the combined effect with cigarettes are not as well known. 

Dr. Nguyen and her colleagues surveyed more than 4,000 people aged 13-24 about their use of cigarettes or e-cigarettes in the last 30 days, the last 7 days, or ever. Half said they had never used any tobacco product and one quarter reported having used cigarettes, vapes, or both in the last month. More than 900 respondents said they had used one or both tobacco products in the last week. 

Of the respondents who had ever vaped, 55.9% said they also used cigarettes. These dual users reported more severe and frequent eye symptoms compared with users of either product alone. Up to 4% of respondents who had ever been a dual user reported daily, severe, or very severe ocular symptoms – more than in the cigarette-only or e-cigarette-only groups. 

More frequent tobacco use also was associated with more ocular symptoms. Young people who smoked or vaped in the previous week reported more symptoms than did the 30-day group, who reported more symptoms than the ever-user group (those who had taken at least a puff but not in the last month).

“All these conditions we know are worse as you get older,” said Laura B. Enyedi, MD, pediatric ophthalmologist at the Duke Eye Center in Durham, N.C., who was not associated with the study. “So if young people are having symptoms, it doesn’t bode well for them as they age.”

E-cigarette use alone did not appear to be linked to eye ailments, according to the findings. But to Dr. Nguyen’s surprise the survey results showed users of vaping products spent the most time worried about their eye health compared with all other participants. Users who smoked only cigarettes reported ocular symptoms, but not as severe or frequent as those of dual users. 

The researchers hypothesized that ocular problems caused by vapes and cigarettes could be classified as oxidative damage. The combustion of the cigarette and the e-cigarette solvent (propylene glycol) potentially generates free radicals that can cause oxidative stress, damaging the ocular surface and film, Dr. Nguyen said. 

Ophthalmologists are “always asking about contact lens use, lid hygiene, and screen time. Here’s another thing to consider when we get those common, nonspecific complaints of symptoms like dryness, redness, and burning,” Dr. Enyedi said.

Given the observational nature of the study, the researchers cannot confirm that dual use causes ocular symptoms. But given the public health challenge that tobacco use already presents for young people, the findings provide yet another reason to counsel against tobacco use and provide cessation options, Dr. Nguyen said. 

“This study is just one of many, many studies showing a significant relationship among smoking, e-cigarette use, and health outcomes,” said Bonnie Halpern-Felsher, PhD, professor of pediatrics at Stanford (Calif.) University and a coauthor of the study. “We clearly need to help young people not use at all, or quit or cut back if using.” 

This study was supported by the Taube Research Faculty Scholar Endowment; the National Heart, Lung, and Blood Institute; the Food and Drug Administration Center for Tobacco Products; the National Cancer Institute; the Stanford Maternal and Child Health Research Institute; and the Research to Prevent Blindness and National Eye Institute. Dr. Halpern-Felsher reported receiving personal fees as an expert scientist in litigation against some e-cigarette companies. The other study authors and Dr. Enyedi reported no relevant financial relationships.

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

In Colorado and Wyoming, nearly every baby born since 2020 is tested for signs of a mutation in the SMN1 gene, an indicator of spinal muscular atrophy (SMA). And in 4 years, genetic counselor Melissa Gibbons has seen 24 positive results. She has prepped 24 different pediatricians and family doctors to deliver the news: A seemingly perfect newborn likely has a lethal genetic disease.

Most of these clinicians had never cared for a child with SMA before, nor did they know that lifesaving gene therapy for the condition now exists. Still, the physicians were foundational to getting babies emergency treatment and monitoring the child’s safety after the fact.

“They are boots on the ground for this kind of [work],” Ms. Gibbons, who is the newborn screen coordinator for SMA in both states, told this news organization. “I’m not even sure they realize it.” As of today, the U.S. Food and Drug Administration has approved 16 gene therapies for the treatment of rare and debilitating diseases once considered lethal, such as SMA and cerebral adrenoleukodystrophy.

The newest addition to the list of approvals is Elevidys, Sarepta’s gene therapy for Duchenne muscular dystrophy (DMD). These conditions can now be mitigated, abated for years at a time, and even cured using treatments that tweak a patient’s DNA or RNA.

Hundreds of treatments are under development using the same mechanism. Viruses, liposomes, and other vectors of all kinds are being used to usher new genes into cells, correcting faulty copies or equipping a cell to fight disease. Cells gain the ability to make lifesaving proteins – proteins that heal wounds, restore muscle function, and fight cancer.

Within the decade, a significant fraction of the pediatric population will have gone through gene therapy, experts told this news organization. And primary care stands to be a linchpin in the scale-up of this kind of precision genetic medicine. Pediatricians and general practitioners will be central to finding and monitoring the patients that need these treatments. But the time and support doctors will need to fill that role remain scarce.

“This is a world we are creating right now, quite literally,” said Stanley Nelson, MD, director of the center for Duchenne muscular dystrophy at the University of California, Los Angeles. These cases – some before gene therapy and some after – will show up in primary care offices before the textbook is written.
 

Unknown side effects, new diseases

Even now, gene therapy is sequestered away in large academic medical research centers. The diagnosis, decision-making, and aftercare are handled by subspecialists working on clinical trials. While the research is ongoing, trial sponsors are keeping a close eye on enrolled patients. But that’s only until these drugs get market approval, Phil Beales, MD, chief medical officer at Congenica, a digital health company specializing in genome analysis support, said. Afterward, “the trialists will no longer have a role in looking after those patients.”

At that point, the role of primary care clinicians will be critically important. Although they probably will not manage gene-therapy patients on their own – comanaging them instead with subspecialists – they will be involved in the ordering and monitoring of safety labs and other tests.

General practitioners “need to know side effects because they are going to deal with side effects when someone calls them in the middle of the night,” said Dr. Beales, who also is chief executive officer of Axovia Therapeutics, a biotech company developing gene therapies.

Some of the side effects that come with gene therapy are established. Adeno-associated virus (AAV) or AAV-mediated gene therapies carry an increased risk for damage to the heart and liver, Dr. Nelson said. Other side effects are less well known and could be specific to the treatment and the tissue it targets. Primary care will be critical in detecting these unexpected side effects and expediting visits with subspecialists, he said.

In rural Wyoming, pediatricians and family doctors are especially important, Ms. Gibbons said. In the 30-90 days after gene therapy, patients need a lot of follow-up for safety reasons.

But aftercare for gene therapy will be more than just monitoring and managing side effects. The diseases themselves will change. Patients will be living with conditions that once were lethal.

In some cases, gene therapy may largely eliminate the disease. The data suggest that thalassemia, for example, can be largely cured for decades with one infusion of a patient’s genetically modified hematopoietic stem cells made using bluebird bio’s Zynteglo, according to Christy Duncan, MD, medical director of clinical research at the gene therapy program at Boston Children’s Hospital.

But other gene therapies, like the one for DMD, will offer a “spectrum of benefits,” Dr. Nelson said. They will be lifesaving, but the signs of the disease will linger. Clinicians will be learning alongside specialists what the new disease state for DMD and other rare diseases looks like after gene therapy.

“As we get hundreds of such therapies, [post–gene therapy] will amount to a substantial part of the pediatric population,” Dr. Nelson said.
 

Finding patients

Many of these rare diseases that plague young patients are unmistakable. Children with moderate or severe dystrophic epidermolysis bullosa, for instance, carry a mutation that prevents them from making type VII collagen. The babies suffer wounds and excessive bleeding and tend to receive a quick diagnosis within the first 6 months of life, according to Andy Orth, chief commercial officer at Krystal Bio, manufacturer of a new wound-healing gene therapy, Vyjuvek, for the disorder.

Other rare neurologic or muscular diseases can go undiagnosed for years. Until recently, drug companies and researchers have had little motivation to speed up the timeline because early diagnosis of a disease like DMD would not change the outcome, Dr. Nelson said.

But with gene therapy, prognoses are changing. And finding diseases early could soon mean preserving muscular function or preventing neurologic damage, Dr. Duncan said.

Newborn sequencing “is not standard of care yet, but it’s certainly coming,” Josh Peterson, MD, MPH, director of the center for precision medicine at Vanderbilt University Medical Center, in Nashville, Tenn., told this news organization.

A recent survey of 238 specialists in rare diseases found that roughly 90% believe whole-genome sequencing should be available to all newborns. And 80% of those experts endorse 42 genes as disease predictors. Screening for rare diseases at birth could reveal a host of conditions in the first week of life and expedite treatment. But this strategy will often rely on primary care and pediatricians interpreting the results.

Most pediatricians think sequencing is a great idea, but they do not feel comfortable doing it themselves, Dr. Peterson said. The good news, he said, is that manufacturers have made screening tests straightforward. Some drug companies even offer free screenings for gene therapy candidates.

Dr. Peterson predicts pediatricians will need to be equipped to deliver negative results on their own, which will be the case for around 97%-99% of patients. They also will need to be clear on whether a negative result is definitive or if more testing is warranted.

Positive results are more nuanced. Genetic counseling is the ideal resource when delivering this kind of news to patients, but counselors are a scarce resource nationally – and particularly in rural areas, Dr. Nelson said. Physicians likely will have to rely on their own counseling training to some degree.

“I feel very strongly that genetic counselors are in short supply,” Ms. Gibbons in Colorado said. Patients need a friendly resource who can talk them through the disease and how it works. And that discussion is not a one-off, she said.

The number of board-certified genetic counselors in the United States has doubled to more than 6,000 in the past 10 years – a pace that is expected to continue, according to the National Society of Genetic Counselors. “However, the geographical distribution of genetic counselors is most concentrated in urban centers.”

Equally important to the counseling experience, according to Dr. Duncan at Boston Children’s, is a primary care physician’s network of connections. The best newborn screening rollouts across the country have succeeded because clinicians knew where to send people next and how to get families the help they needed, she said.

But she also cautioned that this learning curve will soon be overwhelming. As gene therapy expands, it may be difficult for primary care doctors to keep up with the science, treatment studies, and commercially available therapies. “It’s asking too much,” Dr. Duncan said.

The structure of primary care already stretches practitioners thin and will “affect how well precision medicine can be adopted and disseminated,” Dr. Peterson said. “I think that is a key issue.”

Artificial intelligence may offer a partial solution. Some genetic counseling models already exist, but their utility for clinicians so far is limited, Dr. Beales said. But he said he expects these tools to improve rapidly to help clinicians and patients. On the patient’s end, they may be able to answer questions and supplement basic genetic counseling. On the physician’s end, algorithms could help triage patients and help move them along to the next steps in the care pathway for these rare diseases.
 

The whole patient

Primary care physicians will not be expected to be experts in gene therapy or solely in charge of patient safety. They will have support from industry and subspecialists leading the development of these treatments, experts agreed.

But generalists should expect to be drawn into multidisciplinary care teams, be the sounding boards for patients making decisions about gene therapy, help arrange insurance coverage, and be the recipients of late-night phone calls about side effects.

All that, while never losing sight of the child’s holistic health. In children so sick, specialists, subspecialists, and even parents tend to focus only on the rare disease. The team can “get distracted from good normal routine care,” Dr. Nelson said. But these children aren’t exempt from check-ups, vaccine regimens, or the other diseases of childhood.

“In a world where we mitigate that core disease,” he said, “we need a partner in the general pediatrics community” investing in their long-term health.

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

In Colorado and Wyoming, nearly every baby born since 2020 is tested for signs of a mutation in the SMN1 gene, an indicator of spinal muscular atrophy (SMA). And in 4 years, genetic counselor Melissa Gibbons has seen 24 positive results. She has prepped 24 different pediatricians and family doctors to deliver the news: A seemingly perfect newborn likely has a lethal genetic disease.

Most of these clinicians had never cared for a child with SMA before, nor did they know that lifesaving gene therapy for the condition now exists. Still, the physicians were foundational to getting babies emergency treatment and monitoring the child’s safety after the fact.

“They are boots on the ground for this kind of [work],” Ms. Gibbons, who is the newborn screen coordinator for SMA in both states, told this news organization. “I’m not even sure they realize it.” As of today, the U.S. Food and Drug Administration has approved 16 gene therapies for the treatment of rare and debilitating diseases once considered lethal, such as SMA and cerebral adrenoleukodystrophy.

The newest addition to the list of approvals is Elevidys, Sarepta’s gene therapy for Duchenne muscular dystrophy (DMD). These conditions can now be mitigated, abated for years at a time, and even cured using treatments that tweak a patient’s DNA or RNA.

Hundreds of treatments are under development using the same mechanism. Viruses, liposomes, and other vectors of all kinds are being used to usher new genes into cells, correcting faulty copies or equipping a cell to fight disease. Cells gain the ability to make lifesaving proteins – proteins that heal wounds, restore muscle function, and fight cancer.

Within the decade, a significant fraction of the pediatric population will have gone through gene therapy, experts told this news organization. And primary care stands to be a linchpin in the scale-up of this kind of precision genetic medicine. Pediatricians and general practitioners will be central to finding and monitoring the patients that need these treatments. But the time and support doctors will need to fill that role remain scarce.

“This is a world we are creating right now, quite literally,” said Stanley Nelson, MD, director of the center for Duchenne muscular dystrophy at the University of California, Los Angeles. These cases – some before gene therapy and some after – will show up in primary care offices before the textbook is written.
 

Unknown side effects, new diseases

Even now, gene therapy is sequestered away in large academic medical research centers. The diagnosis, decision-making, and aftercare are handled by subspecialists working on clinical trials. While the research is ongoing, trial sponsors are keeping a close eye on enrolled patients. But that’s only until these drugs get market approval, Phil Beales, MD, chief medical officer at Congenica, a digital health company specializing in genome analysis support, said. Afterward, “the trialists will no longer have a role in looking after those patients.”

At that point, the role of primary care clinicians will be critically important. Although they probably will not manage gene-therapy patients on their own – comanaging them instead with subspecialists – they will be involved in the ordering and monitoring of safety labs and other tests.

General practitioners “need to know side effects because they are going to deal with side effects when someone calls them in the middle of the night,” said Dr. Beales, who also is chief executive officer of Axovia Therapeutics, a biotech company developing gene therapies.

Some of the side effects that come with gene therapy are established. Adeno-associated virus (AAV) or AAV-mediated gene therapies carry an increased risk for damage to the heart and liver, Dr. Nelson said. Other side effects are less well known and could be specific to the treatment and the tissue it targets. Primary care will be critical in detecting these unexpected side effects and expediting visits with subspecialists, he said.

In rural Wyoming, pediatricians and family doctors are especially important, Ms. Gibbons said. In the 30-90 days after gene therapy, patients need a lot of follow-up for safety reasons.

But aftercare for gene therapy will be more than just monitoring and managing side effects. The diseases themselves will change. Patients will be living with conditions that once were lethal.

In some cases, gene therapy may largely eliminate the disease. The data suggest that thalassemia, for example, can be largely cured for decades with one infusion of a patient’s genetically modified hematopoietic stem cells made using bluebird bio’s Zynteglo, according to Christy Duncan, MD, medical director of clinical research at the gene therapy program at Boston Children’s Hospital.

But other gene therapies, like the one for DMD, will offer a “spectrum of benefits,” Dr. Nelson said. They will be lifesaving, but the signs of the disease will linger. Clinicians will be learning alongside specialists what the new disease state for DMD and other rare diseases looks like after gene therapy.

“As we get hundreds of such therapies, [post–gene therapy] will amount to a substantial part of the pediatric population,” Dr. Nelson said.
 

Finding patients

Many of these rare diseases that plague young patients are unmistakable. Children with moderate or severe dystrophic epidermolysis bullosa, for instance, carry a mutation that prevents them from making type VII collagen. The babies suffer wounds and excessive bleeding and tend to receive a quick diagnosis within the first 6 months of life, according to Andy Orth, chief commercial officer at Krystal Bio, manufacturer of a new wound-healing gene therapy, Vyjuvek, for the disorder.

Other rare neurologic or muscular diseases can go undiagnosed for years. Until recently, drug companies and researchers have had little motivation to speed up the timeline because early diagnosis of a disease like DMD would not change the outcome, Dr. Nelson said.

But with gene therapy, prognoses are changing. And finding diseases early could soon mean preserving muscular function or preventing neurologic damage, Dr. Duncan said.

Newborn sequencing “is not standard of care yet, but it’s certainly coming,” Josh Peterson, MD, MPH, director of the center for precision medicine at Vanderbilt University Medical Center, in Nashville, Tenn., told this news organization.

A recent survey of 238 specialists in rare diseases found that roughly 90% believe whole-genome sequencing should be available to all newborns. And 80% of those experts endorse 42 genes as disease predictors. Screening for rare diseases at birth could reveal a host of conditions in the first week of life and expedite treatment. But this strategy will often rely on primary care and pediatricians interpreting the results.

Most pediatricians think sequencing is a great idea, but they do not feel comfortable doing it themselves, Dr. Peterson said. The good news, he said, is that manufacturers have made screening tests straightforward. Some drug companies even offer free screenings for gene therapy candidates.

Dr. Peterson predicts pediatricians will need to be equipped to deliver negative results on their own, which will be the case for around 97%-99% of patients. They also will need to be clear on whether a negative result is definitive or if more testing is warranted.

Positive results are more nuanced. Genetic counseling is the ideal resource when delivering this kind of news to patients, but counselors are a scarce resource nationally – and particularly in rural areas, Dr. Nelson said. Physicians likely will have to rely on their own counseling training to some degree.

“I feel very strongly that genetic counselors are in short supply,” Ms. Gibbons in Colorado said. Patients need a friendly resource who can talk them through the disease and how it works. And that discussion is not a one-off, she said.

The number of board-certified genetic counselors in the United States has doubled to more than 6,000 in the past 10 years – a pace that is expected to continue, according to the National Society of Genetic Counselors. “However, the geographical distribution of genetic counselors is most concentrated in urban centers.”

Equally important to the counseling experience, according to Dr. Duncan at Boston Children’s, is a primary care physician’s network of connections. The best newborn screening rollouts across the country have succeeded because clinicians knew where to send people next and how to get families the help they needed, she said.

But she also cautioned that this learning curve will soon be overwhelming. As gene therapy expands, it may be difficult for primary care doctors to keep up with the science, treatment studies, and commercially available therapies. “It’s asking too much,” Dr. Duncan said.

The structure of primary care already stretches practitioners thin and will “affect how well precision medicine can be adopted and disseminated,” Dr. Peterson said. “I think that is a key issue.”

Artificial intelligence may offer a partial solution. Some genetic counseling models already exist, but their utility for clinicians so far is limited, Dr. Beales said. But he said he expects these tools to improve rapidly to help clinicians and patients. On the patient’s end, they may be able to answer questions and supplement basic genetic counseling. On the physician’s end, algorithms could help triage patients and help move them along to the next steps in the care pathway for these rare diseases.
 

The whole patient

Primary care physicians will not be expected to be experts in gene therapy or solely in charge of patient safety. They will have support from industry and subspecialists leading the development of these treatments, experts agreed.

But generalists should expect to be drawn into multidisciplinary care teams, be the sounding boards for patients making decisions about gene therapy, help arrange insurance coverage, and be the recipients of late-night phone calls about side effects.

All that, while never losing sight of the child’s holistic health. In children so sick, specialists, subspecialists, and even parents tend to focus only on the rare disease. The team can “get distracted from good normal routine care,” Dr. Nelson said. But these children aren’t exempt from check-ups, vaccine regimens, or the other diseases of childhood.

“In a world where we mitigate that core disease,” he said, “we need a partner in the general pediatrics community” investing in their long-term health.

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

In Colorado and Wyoming, nearly every baby born since 2020 is tested for signs of a mutation in the SMN1 gene, an indicator of spinal muscular atrophy (SMA). And in 4 years, genetic counselor Melissa Gibbons has seen 24 positive results. She has prepped 24 different pediatricians and family doctors to deliver the news: A seemingly perfect newborn likely has a lethal genetic disease.

Most of these clinicians had never cared for a child with SMA before, nor did they know that lifesaving gene therapy for the condition now exists. Still, the physicians were foundational to getting babies emergency treatment and monitoring the child’s safety after the fact.

“They are boots on the ground for this kind of [work],” Ms. Gibbons, who is the newborn screen coordinator for SMA in both states, told this news organization. “I’m not even sure they realize it.” As of today, the U.S. Food and Drug Administration has approved 16 gene therapies for the treatment of rare and debilitating diseases once considered lethal, such as SMA and cerebral adrenoleukodystrophy.

The newest addition to the list of approvals is Elevidys, Sarepta’s gene therapy for Duchenne muscular dystrophy (DMD). These conditions can now be mitigated, abated for years at a time, and even cured using treatments that tweak a patient’s DNA or RNA.

Hundreds of treatments are under development using the same mechanism. Viruses, liposomes, and other vectors of all kinds are being used to usher new genes into cells, correcting faulty copies or equipping a cell to fight disease. Cells gain the ability to make lifesaving proteins – proteins that heal wounds, restore muscle function, and fight cancer.

Within the decade, a significant fraction of the pediatric population will have gone through gene therapy, experts told this news organization. And primary care stands to be a linchpin in the scale-up of this kind of precision genetic medicine. Pediatricians and general practitioners will be central to finding and monitoring the patients that need these treatments. But the time and support doctors will need to fill that role remain scarce.

“This is a world we are creating right now, quite literally,” said Stanley Nelson, MD, director of the center for Duchenne muscular dystrophy at the University of California, Los Angeles. These cases – some before gene therapy and some after – will show up in primary care offices before the textbook is written.
 

Unknown side effects, new diseases

Even now, gene therapy is sequestered away in large academic medical research centers. The diagnosis, decision-making, and aftercare are handled by subspecialists working on clinical trials. While the research is ongoing, trial sponsors are keeping a close eye on enrolled patients. But that’s only until these drugs get market approval, Phil Beales, MD, chief medical officer at Congenica, a digital health company specializing in genome analysis support, said. Afterward, “the trialists will no longer have a role in looking after those patients.”

At that point, the role of primary care clinicians will be critically important. Although they probably will not manage gene-therapy patients on their own – comanaging them instead with subspecialists – they will be involved in the ordering and monitoring of safety labs and other tests.

General practitioners “need to know side effects because they are going to deal with side effects when someone calls them in the middle of the night,” said Dr. Beales, who also is chief executive officer of Axovia Therapeutics, a biotech company developing gene therapies.

Some of the side effects that come with gene therapy are established. Adeno-associated virus (AAV) or AAV-mediated gene therapies carry an increased risk for damage to the heart and liver, Dr. Nelson said. Other side effects are less well known and could be specific to the treatment and the tissue it targets. Primary care will be critical in detecting these unexpected side effects and expediting visits with subspecialists, he said.

In rural Wyoming, pediatricians and family doctors are especially important, Ms. Gibbons said. In the 30-90 days after gene therapy, patients need a lot of follow-up for safety reasons.

But aftercare for gene therapy will be more than just monitoring and managing side effects. The diseases themselves will change. Patients will be living with conditions that once were lethal.

In some cases, gene therapy may largely eliminate the disease. The data suggest that thalassemia, for example, can be largely cured for decades with one infusion of a patient’s genetically modified hematopoietic stem cells made using bluebird bio’s Zynteglo, according to Christy Duncan, MD, medical director of clinical research at the gene therapy program at Boston Children’s Hospital.

But other gene therapies, like the one for DMD, will offer a “spectrum of benefits,” Dr. Nelson said. They will be lifesaving, but the signs of the disease will linger. Clinicians will be learning alongside specialists what the new disease state for DMD and other rare diseases looks like after gene therapy.

“As we get hundreds of such therapies, [post–gene therapy] will amount to a substantial part of the pediatric population,” Dr. Nelson said.
 

Finding patients

Many of these rare diseases that plague young patients are unmistakable. Children with moderate or severe dystrophic epidermolysis bullosa, for instance, carry a mutation that prevents them from making type VII collagen. The babies suffer wounds and excessive bleeding and tend to receive a quick diagnosis within the first 6 months of life, according to Andy Orth, chief commercial officer at Krystal Bio, manufacturer of a new wound-healing gene therapy, Vyjuvek, for the disorder.

Other rare neurologic or muscular diseases can go undiagnosed for years. Until recently, drug companies and researchers have had little motivation to speed up the timeline because early diagnosis of a disease like DMD would not change the outcome, Dr. Nelson said.

But with gene therapy, prognoses are changing. And finding diseases early could soon mean preserving muscular function or preventing neurologic damage, Dr. Duncan said.

Newborn sequencing “is not standard of care yet, but it’s certainly coming,” Josh Peterson, MD, MPH, director of the center for precision medicine at Vanderbilt University Medical Center, in Nashville, Tenn., told this news organization.

A recent survey of 238 specialists in rare diseases found that roughly 90% believe whole-genome sequencing should be available to all newborns. And 80% of those experts endorse 42 genes as disease predictors. Screening for rare diseases at birth could reveal a host of conditions in the first week of life and expedite treatment. But this strategy will often rely on primary care and pediatricians interpreting the results.

Most pediatricians think sequencing is a great idea, but they do not feel comfortable doing it themselves, Dr. Peterson said. The good news, he said, is that manufacturers have made screening tests straightforward. Some drug companies even offer free screenings for gene therapy candidates.

Dr. Peterson predicts pediatricians will need to be equipped to deliver negative results on their own, which will be the case for around 97%-99% of patients. They also will need to be clear on whether a negative result is definitive or if more testing is warranted.

Positive results are more nuanced. Genetic counseling is the ideal resource when delivering this kind of news to patients, but counselors are a scarce resource nationally – and particularly in rural areas, Dr. Nelson said. Physicians likely will have to rely on their own counseling training to some degree.

“I feel very strongly that genetic counselors are in short supply,” Ms. Gibbons in Colorado said. Patients need a friendly resource who can talk them through the disease and how it works. And that discussion is not a one-off, she said.

The number of board-certified genetic counselors in the United States has doubled to more than 6,000 in the past 10 years – a pace that is expected to continue, according to the National Society of Genetic Counselors. “However, the geographical distribution of genetic counselors is most concentrated in urban centers.”

Equally important to the counseling experience, according to Dr. Duncan at Boston Children’s, is a primary care physician’s network of connections. The best newborn screening rollouts across the country have succeeded because clinicians knew where to send people next and how to get families the help they needed, she said.

But she also cautioned that this learning curve will soon be overwhelming. As gene therapy expands, it may be difficult for primary care doctors to keep up with the science, treatment studies, and commercially available therapies. “It’s asking too much,” Dr. Duncan said.

The structure of primary care already stretches practitioners thin and will “affect how well precision medicine can be adopted and disseminated,” Dr. Peterson said. “I think that is a key issue.”

Artificial intelligence may offer a partial solution. Some genetic counseling models already exist, but their utility for clinicians so far is limited, Dr. Beales said. But he said he expects these tools to improve rapidly to help clinicians and patients. On the patient’s end, they may be able to answer questions and supplement basic genetic counseling. On the physician’s end, algorithms could help triage patients and help move them along to the next steps in the care pathway for these rare diseases.
 

The whole patient

Primary care physicians will not be expected to be experts in gene therapy or solely in charge of patient safety. They will have support from industry and subspecialists leading the development of these treatments, experts agreed.

But generalists should expect to be drawn into multidisciplinary care teams, be the sounding boards for patients making decisions about gene therapy, help arrange insurance coverage, and be the recipients of late-night phone calls about side effects.

All that, while never losing sight of the child’s holistic health. In children so sick, specialists, subspecialists, and even parents tend to focus only on the rare disease. The team can “get distracted from good normal routine care,” Dr. Nelson said. But these children aren’t exempt from check-ups, vaccine regimens, or the other diseases of childhood.

“In a world where we mitigate that core disease,” he said, “we need a partner in the general pediatrics community” investing in their long-term health.

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

In January 2022, Anthony Arenz, a 51-year-old living in Mesa, Ariz., breathed a small sigh of relief.

The Galleri blood test, which screens for 50 types of cancer, hadn’t detected any positive signs.

It would be welcome news to anyone but especially to a firefighter with a 9% greater risk of developing cancer and a 14% greater risk of dying from it than the average person. The Mesa unit had lost two servicemen to cancer in the past 3 years. Both were more than a decade younger than Mr. Arenz.

When the city of Mesa offered additional free screening – including a full-body MRI – to firefighters over 50, Mr. Arenz initially shrugged it off. With a negative Galleri test in hand, he didn’t want to spend more time dwelling on it.

Still, he began to feel a creeping guilt for skipping a test that many of his fallen colleagues hadn’t been offered. He tried to soothe his anxiety with research. A look through the company’s website didn’t set him at ease. According to Grail Bio, a test result of “no cancer signal detected” does not rule out cancer.

Mr. Arenz booked his free MRI.

The results left him heavy: stage I kidney cancer. The Galleri test had missed it.

Mr. Arenz received his free Galleri test through a cancer screening program funded by the city of Mesa. The program is housed at Vincere Cancer Center in Scottsdale, Ariz. Under the leadership of radiation oncologist and Vincere co-owner Vershalee Shukla, MD, the program currently screens first responders in more than 10 Arizona cities at no cost to them.

Vincere began using Galleri shortly after the test launched for consumers in June 2021. Since then, the first responder program has become the largest commercial user of the test in North America.

But the ability of the Galleri test to identify cancer and, perhaps more importantly, the fallout from erroneous results have been under scrutiny since the test’s launch. The Galleri test, which has not yet been approved by the Food and Drug Administration, is so new that few know what incorrect results look like in practice and how often they might occur.

After running the test on about 2,000 servicemen and servicewomen, Dr. Shukla can offer some insight about the test’s real-world value in a high-risk population.

“Cancer screening is a very complicated issue,” Dr. Shukla said in an interview. “Being honest, the tests are good but are not ready yet [for wider use].”

Mr. Arenz was not the only firefighter who got a surprise after taking a Galleri test.

In nearby Phoenix, 51-year-old firefighter Mike Curtis knew his risk for cancer was high, but he wasn’t that worried. Mr. Curtis had been running into fires since he was 17. His dad, also a firefighter, had died of cancer at age 58.

Mr. Curtis had taken the Vincere Cancer Center up on every free screening service since the program began in late 2018 – well before Dr. Shukla started using Galleri in 2021. His most recent lung CT was clear. But he underwent the Galleri test just to stay vigilant.

His result was a shock. The test detected signs of cancer.

Mr. Curtis decided to tell no one, not even his wife. He’d bear the bad news alone until he was certain.

Dr. Shukla, however, immediately doubted the blood test result. She expedited several follow-up tests. One week, a PET, and CT of the abdomen and pelvis later, her hunch was confirmed. The Galleri test result was wrong, Mr. Curtis did not have cancer.

The price of his peace of mind: an extensive workup with a $4,000 price tag. Fortunately, the bill was covered by the screening program.

Overall, in just over 18 months of using the blood test, Dr. Shukla has only encountered 1 other false positive out of about 2,000 Galleri results.

She also discovered two positive signals for cancer using Galleri that were confirmed with follow-up tests. One was a chordoma, a rare type of bone cancer, and the other was a squamous cell carcinoma of the head and neck. The Galleri test caught both remarkably early, in time for treatment.

For Dr. Shukla, however, false negatives were particularly “horrible.” Mr. Arenz’s was just 1 of 28 cancers that the blood test missed. And because 500 negative tests are yet to be validated, the 28 false negatives may be an underestimate.

In her experience, the binary test result – a simple positive or negative cancer signal – is an oversimplification of risk, she said. It “gives a false perception that you have cancer or you don’t,” although the test itself is not definitive.

Grail senior medical director Whitney Jones, MD, agreed that the test is not meant to be a stand-alone screening test for cancer. The purpose of the Galleri test is to “complement other screenings, not replace them,” Dr. Jones told this news organization.

According to an analysis of Galleri data and Dr. Shukla’s experience, the test’s specificity was over 99%. That means the test successfully minimizes false positives.

But the test’s sensitivity was much lower. From data from first responders, Dr. Shukla determined the sensitivity to be 6.7%. That means the test misses about 93 of every 100 cancers. According to Grail’s latest data from more than 6,300 people older than 50, the test’s sensitivity was 29%.

Specificity and sensitivity are metrics used to credential a test and establish confidence in its ability to detect the target disease. A test with high specificity can correctly identify patients who do not have the condition in question, while a test with high sensitivity can correctly identify patients who do have the disease. But there are trade-offs between sensitivity and specificity. One value is increased at the expense of the other.

It’s normal for a cancer screening test to prioritize specificity, according to Aparna Parikh, MD, an oncologist at Mass General Cancer Center in Boston. In a test like Galleri, which is meant to be an adjunct to other screening modalities, “at least we are seeing a good specificity, which is important, because we don’t want false positives, where the downstream impact on the patient can be high.”

Overall, Dr. Jones said, Grail Bio’s aim is to build a test that’s sensitive enough to catch the most dangerous cancers without inundating the healthcare system with false positives. In addition, Dr. Jones explained, sensitivity varies by cancer type. It tends to be lower for cancers for which other screening modalities are available, as well as for earlier-stage disease.

However, the Galleri sensitivity values are “a little bit scary,” said Ji-Hyun Lee, DrPH, professor of biostatistics at the University of Florida and director of the division of quantitative sciences at the University of Florida Health Cancer Center, both in Gainesville. Dr. Lee, who is not affiliated with Grail, reviewed the company’s publicly available data as well as Dr. Shukla’s data at the request of this news organization.

While there’s no definitive threshold for sensitivity, miss rates as high as 93% and 71% “provide little confidence in the [accuracy of the] test,” Dr. Lee said.

Positive and negative predictive values, however, are more clinically relevant measures of a screening test. These numbers indicate how likely it is that a patient’s results are true and therefore how worried they should be about a positive result and how much they should trust a negative result.

Galleri’s data in the over-50 population and Dr. Shukla’s in first responders suggest the test’s negative predictive value is very high – 98.6% and 98.1%, respectively – which means most people can trust a negative test result.

The positive predictive value, however, was less straightforward. In first responders, Dr. Shukla found that only half of positive Galleri tests were confirmed cases of cancer. And an analysis of Grail’s data found that only 38% of positive Galleri tests – 35 of 92 tests – represented a validated cancer diagnosis.

“In a clinical setting, positive predictive value is more usable for decision-making for the patient,” said Dr. Lee. “Positive predictive value isn’t always high, because everything doesn’t always transfer perfectly to the clinic.” But in the general population, if only 38% of patients with positive Galleri results truly have cancer, the test is “not quite useful to make a decision for the patient or the providers.”

Galleri may also be a costly prospect for patients, no matter the result, cautioned Electra Paskett, PhD, an epidemiologist and cancer screening expert at Ohio State University, Columbus. A positive Galleri test leads to a cascade of follow-up diagnostic tests, which payers may not cover. For a negative result, Galleri recommends that the patient undergo screening again in a year, at an annual cost of $950 plus the cost of any follow-up testing when Galleri does pick something up.

“If a provider wants to offer the Galleri test, all those things need to be made abundantly clear, in my opinion,” Dr. Paskett said.

Following the negative Galleri test, Mr. Arenz’s cancer didn’t slip through the cracks because he received other advanced imaging free of charge. But whether all doctors will go to such lengths to back up Galleri results, even for patients with negative results, is unknown.

A negative result can give patients “a huge false sense of security,” said Dr. Shukla. And if a test is positive, the workup isn’t simple. Chasing cancer, especially one that’s not really there, can be nerve-wracking and expensive.

The question, then, is why perform the Galleri test at all if results require so much validation?

Dr. Parikh explained that a high-risk group such as firefighters represents an ideal-use case for Galleri and other liquid biopsy tests. But she noted that she would be “wary of the ability of the system to manage this test en masse” were the test to be used more widely in the general population.

Dr. Shukla said it’s less about the results she’s getting today and more about making the test more effective for her patients in the future. First responders need a test such as this that can quickly identify multiple cancers. However, to improve the test, Grail needs more data from this high-risk population. That’s what she’s after.

Mr. Curtis doesn’t regret taking the Galleri test. The emotional toll of thinking he had cancer for a few days wasn’t too high a price, in his opinion. It’s part of cancer screening. But he acknowledged that it would have been a much more burdensome experience had he’d been financially responsible for the workup or if he hadn’t had Dr. Shukla to manage his case from start to finish.

Because it was free, Mr. Arenz doesn’t regret undergoing the Galleri test either. But he tells his coworkers to check the site, do their research, and get more screening.

“Any medical center that’s just doing this one test, you just have to be careful,” Dr. Shukla said. “It’s not that easy.”

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

In January 2022, Anthony Arenz, a 51-year-old living in Mesa, Ariz., breathed a small sigh of relief.

The Galleri blood test, which screens for 50 types of cancer, hadn’t detected any positive signs.

It would be welcome news to anyone but especially to a firefighter with a 9% greater risk of developing cancer and a 14% greater risk of dying from it than the average person. The Mesa unit had lost two servicemen to cancer in the past 3 years. Both were more than a decade younger than Mr. Arenz.

When the city of Mesa offered additional free screening – including a full-body MRI – to firefighters over 50, Mr. Arenz initially shrugged it off. With a negative Galleri test in hand, he didn’t want to spend more time dwelling on it.

Still, he began to feel a creeping guilt for skipping a test that many of his fallen colleagues hadn’t been offered. He tried to soothe his anxiety with research. A look through the company’s website didn’t set him at ease. According to Grail Bio, a test result of “no cancer signal detected” does not rule out cancer.

Mr. Arenz booked his free MRI.

The results left him heavy: stage I kidney cancer. The Galleri test had missed it.

Mr. Arenz received his free Galleri test through a cancer screening program funded by the city of Mesa. The program is housed at Vincere Cancer Center in Scottsdale, Ariz. Under the leadership of radiation oncologist and Vincere co-owner Vershalee Shukla, MD, the program currently screens first responders in more than 10 Arizona cities at no cost to them.

Vincere began using Galleri shortly after the test launched for consumers in June 2021. Since then, the first responder program has become the largest commercial user of the test in North America.

But the ability of the Galleri test to identify cancer and, perhaps more importantly, the fallout from erroneous results have been under scrutiny since the test’s launch. The Galleri test, which has not yet been approved by the Food and Drug Administration, is so new that few know what incorrect results look like in practice and how often they might occur.

After running the test on about 2,000 servicemen and servicewomen, Dr. Shukla can offer some insight about the test’s real-world value in a high-risk population.

“Cancer screening is a very complicated issue,” Dr. Shukla said in an interview. “Being honest, the tests are good but are not ready yet [for wider use].”

Mr. Arenz was not the only firefighter who got a surprise after taking a Galleri test.

In nearby Phoenix, 51-year-old firefighter Mike Curtis knew his risk for cancer was high, but he wasn’t that worried. Mr. Curtis had been running into fires since he was 17. His dad, also a firefighter, had died of cancer at age 58.

Mr. Curtis had taken the Vincere Cancer Center up on every free screening service since the program began in late 2018 – well before Dr. Shukla started using Galleri in 2021. His most recent lung CT was clear. But he underwent the Galleri test just to stay vigilant.

His result was a shock. The test detected signs of cancer.

Mr. Curtis decided to tell no one, not even his wife. He’d bear the bad news alone until he was certain.

Dr. Shukla, however, immediately doubted the blood test result. She expedited several follow-up tests. One week, a PET, and CT of the abdomen and pelvis later, her hunch was confirmed. The Galleri test result was wrong, Mr. Curtis did not have cancer.

The price of his peace of mind: an extensive workup with a $4,000 price tag. Fortunately, the bill was covered by the screening program.

Overall, in just over 18 months of using the blood test, Dr. Shukla has only encountered 1 other false positive out of about 2,000 Galleri results.

She also discovered two positive signals for cancer using Galleri that were confirmed with follow-up tests. One was a chordoma, a rare type of bone cancer, and the other was a squamous cell carcinoma of the head and neck. The Galleri test caught both remarkably early, in time for treatment.

For Dr. Shukla, however, false negatives were particularly “horrible.” Mr. Arenz’s was just 1 of 28 cancers that the blood test missed. And because 500 negative tests are yet to be validated, the 28 false negatives may be an underestimate.

In her experience, the binary test result – a simple positive or negative cancer signal – is an oversimplification of risk, she said. It “gives a false perception that you have cancer or you don’t,” although the test itself is not definitive.

Grail senior medical director Whitney Jones, MD, agreed that the test is not meant to be a stand-alone screening test for cancer. The purpose of the Galleri test is to “complement other screenings, not replace them,” Dr. Jones told this news organization.

According to an analysis of Galleri data and Dr. Shukla’s experience, the test’s specificity was over 99%. That means the test successfully minimizes false positives.

But the test’s sensitivity was much lower. From data from first responders, Dr. Shukla determined the sensitivity to be 6.7%. That means the test misses about 93 of every 100 cancers. According to Grail’s latest data from more than 6,300 people older than 50, the test’s sensitivity was 29%.

Specificity and sensitivity are metrics used to credential a test and establish confidence in its ability to detect the target disease. A test with high specificity can correctly identify patients who do not have the condition in question, while a test with high sensitivity can correctly identify patients who do have the disease. But there are trade-offs between sensitivity and specificity. One value is increased at the expense of the other.

It’s normal for a cancer screening test to prioritize specificity, according to Aparna Parikh, MD, an oncologist at Mass General Cancer Center in Boston. In a test like Galleri, which is meant to be an adjunct to other screening modalities, “at least we are seeing a good specificity, which is important, because we don’t want false positives, where the downstream impact on the patient can be high.”

Overall, Dr. Jones said, Grail Bio’s aim is to build a test that’s sensitive enough to catch the most dangerous cancers without inundating the healthcare system with false positives. In addition, Dr. Jones explained, sensitivity varies by cancer type. It tends to be lower for cancers for which other screening modalities are available, as well as for earlier-stage disease.

However, the Galleri sensitivity values are “a little bit scary,” said Ji-Hyun Lee, DrPH, professor of biostatistics at the University of Florida and director of the division of quantitative sciences at the University of Florida Health Cancer Center, both in Gainesville. Dr. Lee, who is not affiliated with Grail, reviewed the company’s publicly available data as well as Dr. Shukla’s data at the request of this news organization.

While there’s no definitive threshold for sensitivity, miss rates as high as 93% and 71% “provide little confidence in the [accuracy of the] test,” Dr. Lee said.

Positive and negative predictive values, however, are more clinically relevant measures of a screening test. These numbers indicate how likely it is that a patient’s results are true and therefore how worried they should be about a positive result and how much they should trust a negative result.

Galleri’s data in the over-50 population and Dr. Shukla’s in first responders suggest the test’s negative predictive value is very high – 98.6% and 98.1%, respectively – which means most people can trust a negative test result.

The positive predictive value, however, was less straightforward. In first responders, Dr. Shukla found that only half of positive Galleri tests were confirmed cases of cancer. And an analysis of Grail’s data found that only 38% of positive Galleri tests – 35 of 92 tests – represented a validated cancer diagnosis.

“In a clinical setting, positive predictive value is more usable for decision-making for the patient,” said Dr. Lee. “Positive predictive value isn’t always high, because everything doesn’t always transfer perfectly to the clinic.” But in the general population, if only 38% of patients with positive Galleri results truly have cancer, the test is “not quite useful to make a decision for the patient or the providers.”

Galleri may also be a costly prospect for patients, no matter the result, cautioned Electra Paskett, PhD, an epidemiologist and cancer screening expert at Ohio State University, Columbus. A positive Galleri test leads to a cascade of follow-up diagnostic tests, which payers may not cover. For a negative result, Galleri recommends that the patient undergo screening again in a year, at an annual cost of $950 plus the cost of any follow-up testing when Galleri does pick something up.

“If a provider wants to offer the Galleri test, all those things need to be made abundantly clear, in my opinion,” Dr. Paskett said.

Following the negative Galleri test, Mr. Arenz’s cancer didn’t slip through the cracks because he received other advanced imaging free of charge. But whether all doctors will go to such lengths to back up Galleri results, even for patients with negative results, is unknown.

A negative result can give patients “a huge false sense of security,” said Dr. Shukla. And if a test is positive, the workup isn’t simple. Chasing cancer, especially one that’s not really there, can be nerve-wracking and expensive.

The question, then, is why perform the Galleri test at all if results require so much validation?

Dr. Parikh explained that a high-risk group such as firefighters represents an ideal-use case for Galleri and other liquid biopsy tests. But she noted that she would be “wary of the ability of the system to manage this test en masse” were the test to be used more widely in the general population.

Dr. Shukla said it’s less about the results she’s getting today and more about making the test more effective for her patients in the future. First responders need a test such as this that can quickly identify multiple cancers. However, to improve the test, Grail needs more data from this high-risk population. That’s what she’s after.

Mr. Curtis doesn’t regret taking the Galleri test. The emotional toll of thinking he had cancer for a few days wasn’t too high a price, in his opinion. It’s part of cancer screening. But he acknowledged that it would have been a much more burdensome experience had he’d been financially responsible for the workup or if he hadn’t had Dr. Shukla to manage his case from start to finish.

Because it was free, Mr. Arenz doesn’t regret undergoing the Galleri test either. But he tells his coworkers to check the site, do their research, and get more screening.

“Any medical center that’s just doing this one test, you just have to be careful,” Dr. Shukla said. “It’s not that easy.”

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

In January 2022, Anthony Arenz, a 51-year-old living in Mesa, Ariz., breathed a small sigh of relief.

The Galleri blood test, which screens for 50 types of cancer, hadn’t detected any positive signs.

It would be welcome news to anyone but especially to a firefighter with a 9% greater risk of developing cancer and a 14% greater risk of dying from it than the average person. The Mesa unit had lost two servicemen to cancer in the past 3 years. Both were more than a decade younger than Mr. Arenz.

When the city of Mesa offered additional free screening – including a full-body MRI – to firefighters over 50, Mr. Arenz initially shrugged it off. With a negative Galleri test in hand, he didn’t want to spend more time dwelling on it.

Still, he began to feel a creeping guilt for skipping a test that many of his fallen colleagues hadn’t been offered. He tried to soothe his anxiety with research. A look through the company’s website didn’t set him at ease. According to Grail Bio, a test result of “no cancer signal detected” does not rule out cancer.

Mr. Arenz booked his free MRI.

The results left him heavy: stage I kidney cancer. The Galleri test had missed it.

Mr. Arenz received his free Galleri test through a cancer screening program funded by the city of Mesa. The program is housed at Vincere Cancer Center in Scottsdale, Ariz. Under the leadership of radiation oncologist and Vincere co-owner Vershalee Shukla, MD, the program currently screens first responders in more than 10 Arizona cities at no cost to them.

Vincere began using Galleri shortly after the test launched for consumers in June 2021. Since then, the first responder program has become the largest commercial user of the test in North America.

But the ability of the Galleri test to identify cancer and, perhaps more importantly, the fallout from erroneous results have been under scrutiny since the test’s launch. The Galleri test, which has not yet been approved by the Food and Drug Administration, is so new that few know what incorrect results look like in practice and how often they might occur.

After running the test on about 2,000 servicemen and servicewomen, Dr. Shukla can offer some insight about the test’s real-world value in a high-risk population.

“Cancer screening is a very complicated issue,” Dr. Shukla said in an interview. “Being honest, the tests are good but are not ready yet [for wider use].”

Mr. Arenz was not the only firefighter who got a surprise after taking a Galleri test.

In nearby Phoenix, 51-year-old firefighter Mike Curtis knew his risk for cancer was high, but he wasn’t that worried. Mr. Curtis had been running into fires since he was 17. His dad, also a firefighter, had died of cancer at age 58.

Mr. Curtis had taken the Vincere Cancer Center up on every free screening service since the program began in late 2018 – well before Dr. Shukla started using Galleri in 2021. His most recent lung CT was clear. But he underwent the Galleri test just to stay vigilant.

His result was a shock. The test detected signs of cancer.

Mr. Curtis decided to tell no one, not even his wife. He’d bear the bad news alone until he was certain.

Dr. Shukla, however, immediately doubted the blood test result. She expedited several follow-up tests. One week, a PET, and CT of the abdomen and pelvis later, her hunch was confirmed. The Galleri test result was wrong, Mr. Curtis did not have cancer.

The price of his peace of mind: an extensive workup with a $4,000 price tag. Fortunately, the bill was covered by the screening program.

Overall, in just over 18 months of using the blood test, Dr. Shukla has only encountered 1 other false positive out of about 2,000 Galleri results.

She also discovered two positive signals for cancer using Galleri that were confirmed with follow-up tests. One was a chordoma, a rare type of bone cancer, and the other was a squamous cell carcinoma of the head and neck. The Galleri test caught both remarkably early, in time for treatment.

For Dr. Shukla, however, false negatives were particularly “horrible.” Mr. Arenz’s was just 1 of 28 cancers that the blood test missed. And because 500 negative tests are yet to be validated, the 28 false negatives may be an underestimate.

In her experience, the binary test result – a simple positive or negative cancer signal – is an oversimplification of risk, she said. It “gives a false perception that you have cancer or you don’t,” although the test itself is not definitive.

Grail senior medical director Whitney Jones, MD, agreed that the test is not meant to be a stand-alone screening test for cancer. The purpose of the Galleri test is to “complement other screenings, not replace them,” Dr. Jones told this news organization.

According to an analysis of Galleri data and Dr. Shukla’s experience, the test’s specificity was over 99%. That means the test successfully minimizes false positives.

But the test’s sensitivity was much lower. From data from first responders, Dr. Shukla determined the sensitivity to be 6.7%. That means the test misses about 93 of every 100 cancers. According to Grail’s latest data from more than 6,300 people older than 50, the test’s sensitivity was 29%.

Specificity and sensitivity are metrics used to credential a test and establish confidence in its ability to detect the target disease. A test with high specificity can correctly identify patients who do not have the condition in question, while a test with high sensitivity can correctly identify patients who do have the disease. But there are trade-offs between sensitivity and specificity. One value is increased at the expense of the other.

It’s normal for a cancer screening test to prioritize specificity, according to Aparna Parikh, MD, an oncologist at Mass General Cancer Center in Boston. In a test like Galleri, which is meant to be an adjunct to other screening modalities, “at least we are seeing a good specificity, which is important, because we don’t want false positives, where the downstream impact on the patient can be high.”

Overall, Dr. Jones said, Grail Bio’s aim is to build a test that’s sensitive enough to catch the most dangerous cancers without inundating the healthcare system with false positives. In addition, Dr. Jones explained, sensitivity varies by cancer type. It tends to be lower for cancers for which other screening modalities are available, as well as for earlier-stage disease.

However, the Galleri sensitivity values are “a little bit scary,” said Ji-Hyun Lee, DrPH, professor of biostatistics at the University of Florida and director of the division of quantitative sciences at the University of Florida Health Cancer Center, both in Gainesville. Dr. Lee, who is not affiliated with Grail, reviewed the company’s publicly available data as well as Dr. Shukla’s data at the request of this news organization.

While there’s no definitive threshold for sensitivity, miss rates as high as 93% and 71% “provide little confidence in the [accuracy of the] test,” Dr. Lee said.

Positive and negative predictive values, however, are more clinically relevant measures of a screening test. These numbers indicate how likely it is that a patient’s results are true and therefore how worried they should be about a positive result and how much they should trust a negative result.

Galleri’s data in the over-50 population and Dr. Shukla’s in first responders suggest the test’s negative predictive value is very high – 98.6% and 98.1%, respectively – which means most people can trust a negative test result.

The positive predictive value, however, was less straightforward. In first responders, Dr. Shukla found that only half of positive Galleri tests were confirmed cases of cancer. And an analysis of Grail’s data found that only 38% of positive Galleri tests – 35 of 92 tests – represented a validated cancer diagnosis.

“In a clinical setting, positive predictive value is more usable for decision-making for the patient,” said Dr. Lee. “Positive predictive value isn’t always high, because everything doesn’t always transfer perfectly to the clinic.” But in the general population, if only 38% of patients with positive Galleri results truly have cancer, the test is “not quite useful to make a decision for the patient or the providers.”

Galleri may also be a costly prospect for patients, no matter the result, cautioned Electra Paskett, PhD, an epidemiologist and cancer screening expert at Ohio State University, Columbus. A positive Galleri test leads to a cascade of follow-up diagnostic tests, which payers may not cover. For a negative result, Galleri recommends that the patient undergo screening again in a year, at an annual cost of $950 plus the cost of any follow-up testing when Galleri does pick something up.

“If a provider wants to offer the Galleri test, all those things need to be made abundantly clear, in my opinion,” Dr. Paskett said.

Following the negative Galleri test, Mr. Arenz’s cancer didn’t slip through the cracks because he received other advanced imaging free of charge. But whether all doctors will go to such lengths to back up Galleri results, even for patients with negative results, is unknown.

A negative result can give patients “a huge false sense of security,” said Dr. Shukla. And if a test is positive, the workup isn’t simple. Chasing cancer, especially one that’s not really there, can be nerve-wracking and expensive.

The question, then, is why perform the Galleri test at all if results require so much validation?

Dr. Parikh explained that a high-risk group such as firefighters represents an ideal-use case for Galleri and other liquid biopsy tests. But she noted that she would be “wary of the ability of the system to manage this test en masse” were the test to be used more widely in the general population.

Dr. Shukla said it’s less about the results she’s getting today and more about making the test more effective for her patients in the future. First responders need a test such as this that can quickly identify multiple cancers. However, to improve the test, Grail needs more data from this high-risk population. That’s what she’s after.

Mr. Curtis doesn’t regret taking the Galleri test. The emotional toll of thinking he had cancer for a few days wasn’t too high a price, in his opinion. It’s part of cancer screening. But he acknowledged that it would have been a much more burdensome experience had he’d been financially responsible for the workup or if he hadn’t had Dr. Shukla to manage his case from start to finish.

Because it was free, Mr. Arenz doesn’t regret undergoing the Galleri test either. But he tells his coworkers to check the site, do their research, and get more screening.

“Any medical center that’s just doing this one test, you just have to be careful,” Dr. Shukla said. “It’s not that easy.”

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