Sylvia Chou, 51, Maryland

Program director, National Cancer Institute

Sylvia Chou specializes in communication between patients and their health care providers, and social media’s role in public health. She joined the federal government in 2007 as a fellow and became a civil servant in 2010.

She left her National Cancer Institute job in January, she said, because the “work is no longer based on facts or truth.”

After President Donald Trump returned to office, Chou said, health communication scientists like her were falsely accused of “essentially doing propaganda work.” The administration’s “anti-DEI hysteria,” she said, referring to diversity, equity, and inclusion, meant research funded by the National Institutes of Health was flagged and scrubbed of references to “equity, vulnerable, underserved, poor, even communities of color, minorities.”

She said the agency’s climate in 2025 brought to mind her childhood in Taiwan, when the island was still ruled by an authoritarian regime.

“I could see the difference between a time when, you know, we have a choral competition and we have to sing the same songs to revere the leader of the country, to suddenly they say you can sing any song you want,” Chou said. “I came to this country in part because there was so much opportunity to think freely.”

“To see us going backwards,” she added, “it just made me feel like I have limited time on this earth and I cannot participate anymore inside the system.”

‘One Hurdle After Another’

Philip Stewart, 60, Montana

Staff scientist, National Institute of Allergy and Infectious Diseases

Philip Stewart’s work was about understanding the pathogens ticks carry that make people and animals sick.

That often started with walks through tall grass searching for the arachnids. He analyzed them back at Rocky Mountain Laboratories.

When Trump entered office in 2025, Stewart experienced repeated disruptions to his work.

“It’s been one hurdle after another. Just when you’ve gotten over one and you think it’s finally behind you, another hurdle pops up,” Stewart said. “I don’t see that changing.”

NIH workers responsible for buying laboratory supplies were fired. As a result, Stewart said, he faced delays in getting the basics, including materials used to identify tick species.

Travel bans in early 2025 threatened his fieldwork. When those bans lifted, Stewart said, for the first time in his career he needed a presidential appointee’s approval to travel. Amid last year’s government shutdown, Stewart missed his only opportunity in the year to collect ticks from deer at hunting stations — his best chance to see if deer ticks had become established in Montana.

The review process for scientists to share their research became more burdensome.

He said scientists have debated whether they should try to stay and work within the system, adding that, if everyone leaves, “no cures get found.”

“If I saw a way to stay on and be useful and perhaps to protest, then I think I would’ve stayed,” Stewart said. “But I don’t see any of those alternatives.”

‘Losing a Lot of Expertise’

Alexa Romberg, 48, Maryland

Deputy branch chief, National Institute on Drug Abuse

Alexa Romberg is a scientist who specializes in preventing the use of and addiction to tobacco, electronic cigarettes, and cannabis. The harms that stem from substance use or addiction don’t affect all Americans equally, she said.

Romberg left her “dream job” at the National Institute on Drug Abuse in December, she said, because Trump policies had compromised the research she helped oversee. Among other things, Romberg said, grants were terminated under an initiative she led to reduce health disparities among racial and ethnic minorities related to substance use. Pending applications were also pulled, she said, adding, “I couldn’t be effective from the inside in actively really preserving the science.”

Romberg said her work was undone even though it was consistent with “what the NIH leadership is saying that they want.” In August, NIH Director Jay Bhattacharya on priorities that included “solution-oriented approaches in health disparities research.”

Before the upheaval throughout 2025, she thought she would work at NIDA for the rest of her career.

“We’re losing a lot of expertise,” Romberg said. “Both scientific,” she added, and “institutional knowledge.”

Research ‘for the Benefit of Our Society’

Marc Ernstoff, 73, Maryland and Vermont

Branch chief, National Cancer Institute

Marc Ernstoff spent most of his career in academia before joining the National Cancer Institute in 2020. He led a team of scientists who oversaw grants for research into how the immune system responds to cancer, with the goal of developing drugs that extend patients’ lives.

“I felt that it was important for me to help define a national agenda in immuno-oncology and to give back to a country that I love by working as a civil servant,” Ernstoff said.

Under Trump, the NIH became a “hostile work environment.” Projects with “no weaknesses” were denied funding. Ernstoff left because of those challenges and because he was denied permission to work remotely. He now has a part-time position at Dartmouth Health in New Hampshire.

Leveraging a person’s immune system to fight off cancer is “just the beginning of the story,” Ernstoff said. Understanding how the immune system works — and the environmental and other factors that affect it — all “goes into developing better therapeutics for patients.”

“In my opinion, the government has a responsibility to support this kind of research for the benefit of our society,” he said.

Eyeing Less Stress, Better Pay

Daniel Dulebohn, 45, Montana

Staff scientist, National Institute of Allergy and Infectious Diseases

At Rocky Mountain Laboratories, Daniel Dulebohn studied how molecules come together in infections and diseases. He helped agency researchers across the nation get insight needed for new discoveries and treatments.

Dulebohn said he worked for the government because he knew his research wouldn’t be steered by the pressure to make money. He had planned to stay indefinitely.

“You’re trying to cure a disease or understand something fundamental about biology,” Dulebohn said.

But then his work began to feel insecure, especially as as inept, corrupt, and partisan.

“Reading the news and hearing people discuss the validity of vaccines,” he said, made him think, “Do we need iron lungs again, or people in wheelchairs, to say, ‘Huh, maybe vaccines are a good idea’? I mean, I don’t know; for me, it was just too much.”

He added federal researchers typically have other options for jobs with bigger paychecks.

Dulebohn left his job in September. He’s taking a year off to think about next options with his wife and their three young kids. Dulebohn said he’s considering going into real estate full-time, which until recently was a weekend hobby.

“It’s a lot less stress,” he said. “Pay is better.”

‘Susceptible to Political Decision-Making’

Jennifer Troyer, 57, Maryland

Division director, National Human Genome Research Institute

Jennifer Troyer’s work for the NIH most recently involved reviewing research and overseeing funding awarded to institutions for genomics research. Genomics studies all of a person’s genes to better understand health and disease risk.

She called it quits at the end of December, more than two decades after she arrived. She left for one reason, she said: “The way that the NIH is making the agreement to fund science is now susceptible to political decision-making in a way that it was not before.”

“NIH is looking at not the value of the science but whether the science falls within particular political or socially-acceptable-to-this-administration constructs,” she said. “Not whether it’s valuable for human health but whether it might offend somebody.”

For example, she saw HHS move to to Harvard after alleging that it had shown “deliberate indifference” to antisemitism on campus. Early-career investigators from minority backgrounds lost their research dollars because the money was awarded under programs to make the science workforce more diverse.

The loss of staff means the NIH has “lost so much of that institutional knowledge and leadership, which is not something that is easy or can be learned overnight,” she said.

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In a to NIH Director Jay Bhattacharya, NIH workers said they felt “compelled to speak up when our leadership prioritizes political momentum over human safety and faithful stewardship of public resources.”

“For staff across the National Institutes of Health (NIH), we dissent to Administration policies that undermine the NIH mission, waste public resources, and harm the health of Americans and people across the globe,” they said.

The letter is an extraordinary rebuke of the Trump administration’s actions against the NIH, which include: terminating hundreds of grants funding scientific and biomedical research; firing more than 1,000 employees this year; and moving to end billions in funds to partner institutions overseas, a move current and former NIH workers say will harm research on rare cancers and infectious diseases, as well as research that aims to minimize tobacco use and related chronic illnesses, among other areas.

Some NIH workers signed their names publicly, openly daring to challenge a president who has sought to purge the government of employees he views as disloyal to him. Others signed anonymously.

“It’s about the harm that these policies are having on research participants and American public health, and global public health,” said Jenna Norton, who works at the National Institute of Diabetes and Digestive and Kidney Diseases, one of NIH’s 27 institutes. “There are research participants who generously decide to donate their time and literal pieces of their body, with the understanding that that service is going to help advance research for diseases that they are living with and help the next person who comes along with that disease.”

“These policies are preventing us from delivering on the promise we made to them and honoring the commitment that they made, and putting them at risk,” she said.

The workers wrote that they hope Bhattacharya welcomes their criticisms given his and to respect dissenting views as leader of the NIH, which is based in Bethesda, Maryland. Its authors called it the “Bethesda Declaration” — a play on the controversial “Great Barrington Declaration” that Bhattacharya co-authored during the covid-19 pandemic.

Bhattacharya’s declaration advocated against lockdown measures and proposed that widespread immunity against covid could be achieved by allowing healthy people to get infected with the virus and instituting protective measures only for medically vulnerable people. It was criticized at the time by Francis Collins, then-director of the NIH, who called Bhattacharya and his co-authors “fringe epidemiologists,” the American Institute for Economic Research obtained through a Freedom of Information Act request.

In their letter, NIH workers demanded that Bhattacharya restore grants that were “delayed or terminated for political reasons.” Those grants funded a range of projects, including those addressing Alzheimer’s disease, ways to boost vaccination rates, and efforts to combat health disparities or health misinformation.

“Academic freedom should not be applied selectively based on political ideology. To achieve political aims, NIH has targeted multiple universities with indiscriminate grant terminations, payment freezes for ongoing research, and blanket holds on awards regardless of the quality, progress, or impact of the science,” the NIH workers wrote.

The funding terminations, they said, “throw away years of hard work and millions of dollars,” “risk participant health,” and “damage hard-earned public trust, counter to your stated goal to improve trust in NIH.”

In an emailed comment, Bhattacharya said, “The Bethesda Declaration has some fundamental misconceptions about the policy directions the NIH has taken in recent months, including the continuing support of the NIH for international collaboration. Nevertheless, respectful dissent in science is productive. We all want the NIH to succeed.”

The NIH’s nearly $48 billion budget makes it the world’s largest public funder of scientific research. Its work has led to countless scientific discoveries that have helped improve health and save lives around the globe. But it hasn’t been without controversies, including instances of and grant awards and the related research.

Researchers and some states have sued NIH and HHS over the grant cuts. An April 3 deposition by NIH official Michelle Bulls said Rachel Riley, a senior adviser at HHS who is part of the Department of Government Efficiency created by executive order, provided NIH officials lists of grants to terminate and language for termination notices. Elon Musk, the world’s richest person, led DOGE through May.

Norton has worked at the NIH as a federal employee or contractor for about a decade. She said the current administration’s policies are “definitely unethical and very likely illegal,” listing a string of developments  in recent months. They include terminating studies early and putting participating patients at risk because they have had to abruptly stop taking medications, and holding up research that would predominantly or exclusively recruit participants from minority races and ethnicities, who have historically been underrepresented in medical research.

“They’re saying that doing studies exclusively on Black Americans to try to develop interventions that work for that population, or interventions that are culturally tailored to Hispanic-Latino populations — that that kind of research can’t go forward is extremely problematic,” Norton said. “And, as a matter of fact, studies that over-recruit from white people have been allowed to go forward.”

The NIH workers also demanded that Bhattacharya reinstate workers who were dismissed under recent mass firings and allow research that is done in partnership with institutions in foreign countries “to continue without disruption.” The NIH works with organizations around the globe to combat major public health issues, including types of cancer, tobacco-related illnesses, and HIV.

In addition to the firing of probationary workers, NIH fired 1,200 civil servants as part of a rapid “reduction in force” at federal health agencies. During a May 19 town hall meeting with NIH staff, a recording of which was obtained by ºÚÁϳԹÏÍø News, Bhattacharya said the decisions about RIFs “happened before I got here. I actually don’t have any transparency into how those decisions were made.”

He started at NIH on April 1, the day many workers at NIH and other agencies were told they were fired. Other workers have been fired since Bhattacharya took the helm — nearly all the National Cancer Institute’s communications staff were fired in early May, three former employees told ºÚÁϳԹÏÍø News.

The letter is the latest salvo in a growing movement by scientists and others against the Trump administration’s actions. In addition to in-person protests outside HHS headquarters and elsewhere, some former employees are organizing patients to get involved.

Peter Garrett, who led the National Cancer Institute’s communications work, has created an advocacy nonprofit called Patient Action for Cancer Research. The aim is to engage patients “in the conversation and federal funding and science policymaking,” he said in an interview.

His group aims to get patients and their relatives to speak out about how federal cancer research affects them directly, he said — a “guerrilla lobbying” effort to put the issue squarely before members of Congress. Garrett said he retired early from the cancer institute because of concerns about political interference.

Career officials routinely work under both Republican and Democratic presidents. It is par for the course for their priorities and assignments to evolve when a new president, Cabinet secretaries, and other political appointees take over. Usually, those changes occur without much protest.

This time, workers said the upheaval and harm done to the NIH is so extensive that they felt they had no choice but to protest.

In 11 years at NIH, Norton said, “I’ve never seen anything that comes anywhere near this.”

In the June 9 letter, the workers said, “Many have raised these concerns to NIH leadership, yet we remain pressured to implement harmful measures.”

“It’s not about our jobs,” said one NIH worker who signed the letter anonymously. “It is about humanity. It is about the future.”

Senior correspondent Arthur Allen contributed to this report.

We’d like to speak with current and former personnel from the Department of Health and Human Services or its component agencies who believe the public should understand the impact of what’s happening within the federal health bureaucracy. Please message ºÚÁϳԹÏÍø News on Signal at (415) 519-8778 or .

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As a joint investigation by ºÚÁϳԹÏÍø News and Cox Media Group television stations reported in September, the agency has harmed people it is supposed to help by reducing or halting benefit checks to recoup billions of dollars in payments it sent them but later said they should never have received.

Testifying at two Senate hearings on March 20, Social Security Commissioner Martin O’Malley said he is to address the problem.

Starting next week, O’Malley said, the agency will stop “that clawback cruelty” of intercepting 100% of a beneficiary’s monthly Social Security check if they fail to respond to a demand for repayment.

Instead, the agency will default to withholding 10% of the recipient’s monthly benefits to recoup the debt, he said.

That would have helped Denise Woods, a Savannah, Georgia, woman who ended up living in her car after the SSA clawed back her entire monthly benefit to recoup a $58,000 overpayment. The agency restored some of her benefits after ºÚÁϳԹÏÍø News-CMG reported her story in December.

“People like Denise and others shouldn’t be penalized for situations they did not create,” Sen. Raphael Warnock (D-Ga.) said during one of the hearings. “I think it’s always important that we center the people as we discuss policy, remember the human face of the issues we talk about.”

On the question of who caused an overpayment — the beneficiary or someone at the agency — the burden of proof will shift from the beneficiary to the agency, O’Malley said.

The agency will make it much easier for people who believe they weren’t at fault or can’t repay the debt to seek a waiver, O’Malley said, which he later clarified means simplifying the form people must submit.

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O’Malley’s plan also includes making notices to beneficiaries easier to understand. Now, they’re “like Mad Libs designed by mad lawyers,” he testified.

In addition, the agency recently changed a policy to allow most beneficiaries to arrange repayment plans of as long as five years, up from three years, he said.

Millions of people a year have been hit with clawbacks, including retirees, people receiving Social Security disability benefits, and the poorest of the poor. The alleged debts can stretch back years or decades and reach tens of thousands of dollars or more.

At the end of the last fiscal year, uncollected overpayments totaled $23 billion.

In December, ºÚÁϳԹÏÍø News and Cox Media Group television stations obtained an internal agency document showing that more than 2 million Americans each year are subjected to overpayment demands, out of about 70 million beneficiaries.

O’Malley, a former Maryland governor who was sworn in as commissioner in December, had previewed his planned changes in a recent interview with ºÚÁϳԹÏÍø News.

On Wednesday, he appeared before the Senate Special Committee on Aging in the morning and the Finance Committee in the afternoon.

In hours of testimony, O’Malley said nothing about one of the reforms he heralded in the interview: limiting how far back in time the agency can reach to recover overpayments.

In an interview between the hearings, O’Malley said, “That’s still being unpacked and may well require a change in regulation.” He said he expected an announcement within a few months.

O’Malley said he didn’t know how far back the limit would go but noted that other agencies tend to have a look-back period of four years.

Establishing a statute of limitations is one of the most important steps the government can take to address overpayments, Boston University economist Laurence Kotlikoff, who has studied and written about clawbacks, said in an interview.

“If Social Security can’t figure out its mistakes within 18 months, it should be on them,” Kotlikoff said.

Having to repay a year and a half of benefits could cost people their homes, Kotlikoff said.

Rebecca Vallas, who has helped beneficiaries navigate overpayments as a legal aid attorney and has called for reform of clawbacks, said the steps O’Malley announced “are nothing short of historic.”

Shifting the burden of proof “is a dramatic change,” said David Camp, chief executive of the National Organization of Social Security Claimants’ Representatives. While a lot is riding on the details and how O’Malley’s plans are implemented, that change alone should lead to “a very different experience” for anyone challenging a clawback, Camp added.

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In the past, there has been a gap between what the agency says and what it does. O’Malley said 10% has been the default withholding rate in one of the Social Security programs, Supplemental Security Income. But ºÚÁϳԹÏÍø News and Cox Media Group have found people whose entire SSI benefit checks were suspended on account of alleged overpayments.

The changes announced won’t apply automatically to people already on a repayment plan or whose monthly benefits are already being docked, O’Malley said outside the hearings. To take advantage of the new terms, beneficiaries would have to contact the agency and request relief, he said. The agency will notify people that they have that option, he added.

O’Malley implored lawmakers to increase funding for the agency. On average, customers trying to reach the agency by phone wait 38 minutes, he said. Most who call the 800 number “hang up in disgust after waiting far too long,” he said in written testimony.

Trouble getting through to anyone at the agency can contribute to overpayments and make it harder for recipients to resolve them.

Sen. Bob Casey (D-Pa.), chair of the Special Committee on Aging, said that unless Congress provides adequate funding for the agency, fixing problems “will be really difficult.”

Sen. Mike Braun of Indiana, the top Republican on that committee, called for looking at how the agency is run “before we throw more money at it.” He suggested focusing on what can be done to prevent overpayments “rather than forgiving them once they occur” or trying to claw them back, “which is insult on top of injury.”

O’Malley noted that the Social Security Administration recently on a long-delayed plan to reduce overpayments by automatically obtaining monthly wage and employment data on beneficiaries.

Finance Committee Chairman Ron Wyden (D-Ore.) praised O’Malley for tackling what Wyden called “the scourge of overpayments.”

“I think you’re really off to a strong start in terms of righting wrongs,” Wyden said.

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Then it got busy.

A student fell from the monkey bars and another tripped while playing tag. Two kids hit each other’s heads with lunchboxes and needed ice packs. A young boy had a stomachache. Bobbitt also saw her regular kiddos: one who has special needs and uses a wheelchair and another who has diabetes and gets his blood sugar checked daily before lunch.

“Every day, I’m seeing more and more [youngsters],” Bobbitt, who is a certified nurse practitioner, said with a smile. “I saw more today than yesterday, so we just have to wait and see what the year has in store.”

As the only school nurse at this suburban Washington, D.C., elementary school, Bobbitt’s responsibilities extend beyond treating scraped knees and sniffles for the school’s 600 pupils. At her under-the-sea-themed clinic, she administers medications, teaches kids about health care, and conducts routine health screenings. As the school nurse, she also serves as a public health point person — tracking student vaccinations, linking parents to local health care resources, and communicating sometimes difficult messages to them, such as warnings about sexually transmitted diseases and signs of depression.

It’s a full plate, but Bobbitt considers herself lucky. In a previous school nursing job, she split her time between two buildings within the same school district — some years three. What hasn’t changed is that school nurses play a critical role in keeping students healthy and ready to learn, but it’s an often-unrecognized field for which schools struggle to attract and retain employees.

More than a third of schools nationwide on-site, according to a 2021 survey by the National Association of School Nurses. The schools that don’t have a dedicated nurse either share one with other campuses, or don’t have one at all. Meanwhile, the nation is facing among K-12 students, such as diabetes and asthma, along with an unprecedented , and — often, alone.

School nurses’ roles were further complicated by covid-19. Since the pandemic took hold, they’ve been tasked with tracking cases and tracing exposures. An “extreme load of work was put on school nurses’ shoulders during the pandemic,” said .

They got caught in the middle between anti-maskers and maskers and anti-vaccine and pro-vaccine parents, and were the point of contact whenever students had to quarantine. “School nurses are used to interacting with parents who are angry,” said King, but because of the pandemic “that anger just got to levels we had never seen before.”

In general, kids’ attendance and learning can suffer when students don’t have access to a school nurse. “You’re going to see more absences,” she said, citing a that found students with illnesses or injuries were sent home 18% of the time when evaluated by an unlicensed school employee while only 5% went home after being seen by a school nurse.

Teachers and administrators are shouldering some of the burden by learning how to handle injuries and illnesses themselves, but “it doesn’t take the place of having a school nurse who can respond immediately,” King said.

Though there is no federal law requiring schools to have nurses on staff, the at least one full-time nurse for every 750 students enrolled — but most states are missing the mark by miles. School nurses in California have one of the heaviest workloads in the country with a student-to-school-nurse ratio of 2,410 students for every nurse, .

According to research organization , California, along with 34 other states and the District of Columbia, requires schools to employ school nurses. Of those, 12 set required nurse-to-student ratios. Seven states encourage schools to have nurses on staff. Eight states don’t have mandates on the books.

Still, schools were scrambling over the summer to hire nurses.

Jessica Sawko, director of education for Children Now, a California-based nonprofit organization, said schools struggle not only to retain nurses but also encourage aspiring nurses to consider working in schools. Districts can’t compete with the salaries and benefits hospitals offer. The national median salary for school nurses is , but a registered nurse could make annually working at a hospital.

In some states, school nurses need in addition to their nursing degrees.

The lack of school nurses is a byproduct of a larger issue: the nation’s overall nursing shortage. Health organizations in general — even those that offer healthy salaries — are facing difficulties hiring and keeping nurses. Around 40% of nurses who participated in a said they were considering leaving their position.

As a nurse for junior high students, King said she is keenly aware that school nurses sometimes serve as students’ only contact with a health care professional, especially at her campus.

World Language Middle School in Columbus, Ohio, where King works, has a diverse student body and takes in many students who are new to the country. “So that requires school nurses like myself to have a very broad range of knowledge of diseases and symptoms,” she said.

Robin Wallin, director of school health services for Alexandria City Public Schools, said that another layer of this issue is that school nursing “is an aging cohort.” The district has at least one school nurse in each of its 18 campuses — but this year it was a challenge to fill every spot. That’s partly because many school nurses are aging out, starting to retire, she said. “We need to start to replenish our cohorts.”

Bobbitt said the nursing students who shadow her almost never imagine themselves working in a school. “They want to work in the ER, they want to work in the hospital, they want to work in the NICU, or somewhere where they can have that adrenaline,” Bobbitt said. “This is a little different,” she said, adding that it is fast paced in its own way.

is a clinical coordinator at in New Jersey, and she said one of the biggest learning curves for nurses who opt to work in school settings is that they are “often an independent practitioner,” which involves juggling a lot of responsibilities.

Meanwhile, Bobbitt, working in her brightly colored clinic, stays focused on her daily mission: to address the students’ needs as quickly as possible. “We don’t want them to miss very much school or much class work,” Bobbit said. “That’s our goal, right?”

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A needle inserted into her arm had fallen loose, breaking a circuit that the machine used to clean her blood. It was still pumping, drawing and filtering blood as designed, but the blood was now spilling into her bed instead of returning to her body.

Gedney, a leader of the , knew what to do. Armed with a decade of experience with hemodialysis, she calmly applied pressure to her arm and pressed a red button that turned off the pump. Her blood loss stopped. In the seconds her needle was loose, Gedney’s blood had soaked through her pajamas, bedsheets, and quilt.

“I sat up and looked down, and I was literally covered in blood,” said Gedney, 71. “It was a bloodbath.”

On that frightful night last year, Gedney survived a rare and very dangerous complication of hemodialysis — a venous needle dislodgment, or VND. About 500,000 Americans with kidney failure rely on hemodialysis to mimic the function of healthy kidneys by pumping their blood through an external cleaning machine. If the venous needle dislodges, the machine continues to pump and clean blood, but the blood escapes. The patient is methodically drained and, unless someone intervenes, can die in minutes.

By some estimates, at least one American is killed this way every week.

A relatively simple solution is available in Europe: An alarm detects blood loss with a disposable sensor patch, then automatically shuts off the dialysis pump. Dialysis companies in the United States have not embraced this fail-safe technology, so it is largely unavailable to Americans. The alarm costs $649 and each patch about $2.25. Neither is covered by Medicare, which insures most dialysis patients.

“That’s the ugly side of dialysis,” said Debbie Brouwer-Maier, a 40-year dialysis nurse and member of the American Nephrology Nurses Association’s VND task force. She said the dialysis industry resists “any item that’s going to improve care if there is added cost.”

“The patch is the problem,” Brouwer-Maier said. “It’s a disposable you have to buy without being reimbursed for every single treatment the patient does.”

Currently, most American dialysis treatment occurs in a nationwide network of clinics where patients sit in rows of chairs for hours at a time about three times a week. Only about 2% of patients undergo hemodialysis at home, sometimes with the aid of family or a caregiver.

But hemodialysis is changing: The Trump and Biden administrations promoted home dialysis with increased Medicare payments. A new generation of portable machines offer better results, more independence, and a lower overall cost to the government and insurers. Home patients can be treated more often or for longer periods, putting less stress on their bodies, and may find it easier to travel or keep a day job.

Dialysis experts and patient advocates interviewed for this article agreed that many hemodialysis patients, if carefully selected and thoroughly trained, would benefit greatly from the momentum toward home care. Some also worry that no amount of training could erase the increased threat of needle dislodgment for those who dialyze at home while alone or asleep.

“It is the widowmaker heart attack of dialysis,” said Ankur Shah, a Brown University nephrologist. “If you have a VND at home, and you go one or two minutes before you recognize it, you are now trying to intervene while you are physically going into shock.”

Shah’s concerns are shared by others. In 2020, the nurse association task force found that patients who do hemodialysis at home or while asleep “may be at higher risk.” ECRI, a nonprofit focused on health care safety, named needle dislodgments with a “particular concern” for patients at home. Both organizations said dialysis machines don’t reliably detect dislodgments, so blood pumps cannot be counted on to turn themselves off.

Ismael Cordero, an ECRI engineer who evaluates medical devices, said the absence of an automatic shut-off may also endanger patients in dialysis clinics, where a patient’s blanket could obscure a loose needle or staff members may not react in time.

Decades ago, Cordero witnessed a few dislodgments while working his way through college at a clinic in Pennsylvania. It was his job to mop up the blood.

“If that needle slips out, and no alarm goes off, and nobody notices, then within 10 minutes that patient would lose all of their blood,” he said.

Two companies make hemodialysis machines that the FDA has approved for home use.

Outset Medical, whose resemble a mini-fridge and were approved for home use in 2020, said in response to emailed questions that it has received no reports of VNDs among Tablo patients at home. The company said it believes VNDs may be more common or dangerous in a clinical setting than at home because staffers monitor multiple patients who are “frequently sleeping under blankets” and “completely disengaged from their treatment.”

“At home, a patient has been trained to manage themselves, including this rare event,” the company said in an email. “And despite the potential severity of the event, the treatment is simple and a procedure the patient performs every time they dialyze. Stop the blood pump.”

Fresenius, one of the world’s largest dialysis companies, which has sold for home use in the U.S. since 2005, declined to comment.

Despite the lethality of venous needle dislodgments, there is no accounting of how often they occur. The National Institutes of Health maintains but does not track VND events in clinics or at home. The Centers of Medicare & Medicaid Services requires dialysis companies to log them internally but not to report them to the government or the public.

But research shows they do happen. A 2017 study by researchers in Portugal reported among about 733,000 dialysis sessions in one year. A 2012 survey of more than 1,100 dialysis nurses reported that 76% witnessed a dislodgment in the prior five years, and 8% said they had seen five or more. A 2008 study of dialysis clinics run by the Veterans Health Administration found among 2.5 million sessions over a six-year span, including many that required hospitalization and some that were fatal.

, a Swedish company that makes dialysis safety products, estimates that needle dislodgment kills three Americans and 21 people globally each week. But these estimates are extrapolated from a mid-2000s study from a single Pittsburgh hospital — one of the few efforts in the U.S. to count them.

Redsense’s signature product is a stand-alone alarm system, used by some clinics and home patients in the U.S., Canada, Europe, and Australia. The system detects a needle dislodgment with a blood sensor patch, then sounds an alarm and flashes red lights to alert someone to turn off the pump.

But these alarms could be doing more. Since 2017, some Redsense alarms have also been able to send a signal that will automatically turn off a blood pump without human intervention. This fail-safe was requested by dialysis clinics in Europe, said Redsense CEO Pontus Nobréus, but it has never been submitted to the FDA for approval because no companies showed interest in using it in the United States.

Currently, no hemodialysis machine used in the U.S. is programmed to respond to the shut-off signal, Nobréus said.

“It hasn’t been used to its full potential, which is a pity,” Nobréus said. “We can send a signal to the machine, but the manufacturer has to have the software integrated to actually tell the machine to stop.”

Although Redsense alarms are not covered by Medicare, new legislation could change that. In May, Rep. Adrian Smith (R-Neb.) and Rep. Melanie Stansbury (D-N.M.) introduced the “,” which would extend Medicare coverage to VND alarms and related supplies for home patients only.

The bill was motivated in part by rural constituents who drive hours to dialysis clinics, Smith said, and he believes Medicare coverage lags far behind the latest dialysis technology.

“We want our public policy to be parallel with what technology can deliver,” Smith said, “and more than that, encourage innovation and more technology that will ultimately help patients.”

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But that fast-track focus is missing from another, less publicized epidemic: an explosion in sexually transmitted diseases that can cause chronic pain and infertility among infected adults and disable or kill infected newborns. The disparity has amplified calls from researchers, public health advocates, and health care companies urging the federal government to greenlight at-home testing kits that could vastly multiply the number of Americans testing for STDs.

Online shoppers can already choose from more than a dozen self-testing kits, typically ranging in price from $69 to $500, depending on the brand and the variety of infections they can detect.

But, except for HIV tests, the Food and Drug Administration hasn’t approved STD test kits for use outside a medical setting. That leaves consumers unsure about their reliability even as at-home use grows dramatically.

The STD epidemic is “out of control,” said Dr. Amesh Adalja, a senior scholar at the Johns Hopkins University Center for Health Security. “We know we are missing diagnoses. We know that contact tracing is happening late or not at all. If we’re really serious about tackling the STD crisis, we have to get more people diagnosed.”

Preliminary data for 2021 showed reported cases of chlamydia, gonorrhea, and syphilis in the U.S., according to the Centers for Disease Control and Prevention. Reported cases of syphilis and gonorrhea have been climbing for about a decade. In its most recent prevalence estimate, the agency said that on any given day, 1 in 5 Americans are infected with any of eight common STDs.

The push to make at-home testing for STDs as easy and commonplace as at-home covid and pregnancy testing is coming from several sectors. Public health officials say their overextended staffers can’t handle the staggering need for testing and surveillance. Diagnostic and pharmaceutical companies see a business opportunity in the unmet demand.

The medical science underpinning STD testing is not particularly new or mysterious. Depending on the test, it may involve collecting a urine sample, pricking a finger for blood, or swabbing the mouth, genitals, or anus for discharge or cell samples. Medical centers and community health clinics have performed such testing for decades.

The issue for regulators is whether sampling kits can be reliably adapted for in-home use. Unlike rapid antigen tests for covid, which produce results in 15 to 20 minutes, the home STD kits on the market require patients to collect their own samples, and then package and mail them to a lab for analysis.

In the past three years, as the pandemic prompted clinics that provide low-cost care to drastically curtail in-person services, a number of public health departments — among them state agencies in , , and — have started mailing free STD test kits to residents. and are also spearheading at-home testing efforts.

And dozens of commercial enterprises are jumping into or ramping up direct-to-consumer sales. Everly Health, a digital health company that sells a variety of lab tests online, reported sales for its suite of STD kits in the first half of this year compared with the first half of 2021.

CVS Health began selling bundled STD kit in October, priced at $99.99. Unlike most home kits, CVS’ version is available in stores.

Hologic, Abbott, and Molecular Testing Labs are among the companies urgently developing tests. And , which sells covid tests, is poised to launch a clinical trial for a rapid home test for chlamydia and gonorrhea that would set a new bar, providing results in about 20 minutes.

Alberto Gutierrez, who formerly led the FDA office that oversees diagnostic tests, said agency officials have been concerned about the reliability of home tests for years. The FDA wants companies to prove that home collection kits are as accurate as those used in clinics, and that samples don’t degrade during shipping.

“The agency doesn’t believe these tests are legally marketed at this point,” said Gutierrez, a partner at NDA Partners, a consulting firm that advises companies seeking to bring health care products to market.

“CVS should not be selling that test,” he added.

In response to KHN questions, the FDA said it considers home collection kits, which can include swabs, lancets, transport tubes, and chemicals to stabilize the samples, to be devices that require agency review. The FDA “generally does not comment” on whether it plans to take action on any specific case, the statement said.

CVS spokesperson Mary Gattuso said the pharmacy chain is following the law. “We are committed to ensuring the products we offer are safe, work as intended, comply with regulations, and satisfy customers,” Gattuso said.

Everly Health and other companies described their kits as , akin to the diagnostics some hospitals create for in-house use. And they contend their tests can be legally marketed because their labs have been certified by a different agency, the Centers for Medicare & Medicaid Services.

“The instruments and assays used by the laboratories we use are comparable to — and often the same as — those used by the labs a doctor’s office uses,” said Dr. Liz Kwo, chief medical officer at Everly Health. “Our at-home sample collection methods, like dried blood spots and saliva, have been widely used for decades.”

Home collection kits appeal to Uxmal Caldera, 27, of Miami Beach, Florida, who prefers to test in the privacy of his home. Caldera, who doesn’t have a car, said home testing saves him the time and expense of getting to a clinic.

Caldera has been testing himself for HIV and other STDs every three months for more than a year, part of routine monitoring for people taking PrEP, a regimen of daily pills to prevent HIV infection.

“Doing it by yourself is not hard at all,” said Caldera, who is uninsured but receives the tests free through a community foundation. “The instructions are really clear. I get the results in maybe four days. For sure, I would recommend it to other people.”

Dr. Leandro Mena, director of the CDC’s Division of STD Prevention, said he would like to see at-home STD testing become as routine as home pregnancy tests. An estimated 16 million to 20 million tests for gonorrhea and chlamydia are performed in the U.S. each year, Mena said. Widespread use of at-home STD testing, he said, could double or triple that number.

He noted that doctors have years of experience using home collection kits.

The for Point-of-Care Technologies Research for Sexually Transmitted Diseases has distributed roughly 23,000 at-home STD kits since 2004, said Charlotte Gaydos, a principal investigator with the center. The FDA generally allows such use if it’s part of research overseen by medical professionals. The center’s tests are now used by the Alaska health department, as well as Native American tribes in Arizona and Oklahoma.

Gaydos has published establishing that home collection kits for diseases such as chlamydia and gonorrhea are accurate and easy to use.

“There’s a huge amount of data showing that home testing works,” said Gaydos.

But Gaydos noted that her studies have been limited to small sample sizes. She said she doesn’t have the millions of dollars in funding it would take to run the sort of comprehensive trial the FDA typically requires for approval.

Jenny Mahn, director of clinical and sexual health at the National Coalition of STD Directors, said many public health labs are reluctant to handle home kits. “The public health labs won’t touch it without FDA’s blessing,” Mahn said.

Public health clinics often provide STD testing at little to no cost, while health insurance typically covers in-person testing at a private practice. But most consumers pay out-of-pocket for direct-to-consumer kits. Commercial pricing puts them out of reach for many people, particularly teens and , who account for nearly half of STDs.

Adalja, at Johns Hopkins, said the FDA has a history of moving slowly on home testing. The agency spent seven years evaluating the it approved, which hit the market in 2012.

“Home testing is the way of the future,” said Laura Lindberg, a professor of public health at Rutgers University. “The pandemic opened the door to testing and treatment at home without traveling to a health care provider, and we aren’t going to be able to put the genie back in the bottle.”

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Her doctors told her she would have to get insurance to pay for an interpreter, which is incorrect: Under federal law, it is the physician’s responsibility to provide one.

Goel’s mother stepped in to interpret instead. But her signing is limited, so Goel, who has only some vision, is not sure her mother fully conveyed what the doctors said. Goel worries about the medical ramifications — a wrong medicine or treatment — if something got lost in translation.

“It’s really, really hard to get real information, and so I feel very stuck in my situation,” she signed through an interpreter.

Telemedicine, teleworking, rapid tests, virtual school, and vaccine drive-thrus have become part of Americans’ routines as they enter Year 3 of life amid covid-19. But as innovators have raced to make living in a pandemic world safer, some people with disabilities have been left behind.

Those with a physical disability may find the at-home covid tests that allow reentry into society hard to perform. Those with limited vision may not be able to read the small print on the instructions, while cannot see the results. The American Council of the Blind is engaged in litigation against the two dominant medical testing companies, Labcorp and Quest Diagnostics, over touch-screen check-in kiosks at their testing locations.

Sometimes the obstacles are basic logistics. “If you’re blind or low-vision and you live alone, you don’t have a car,” said Sheila Young, president of the Florida Council of the Blind, pointing to the long lines of cars at drive-thru testing and vaccination sites. “Who can afford an Uber or Lyft to sit in line for three hours?”

in the U.S. have some sort of disability, according to the Centers for Disease Control and Prevention. Though barriers for the disabled have long existed, the pandemic brings life-or-death stakes to such long-running inequities.

“The only thing that I see is that folks with disabilities are cared for last and are dying first,” said , a founding member and the current litigation director of the Disability Independence Group in Florida.

People directly affected by accessibility barriers, especially those living in communal settings or the homebound, often don’t have the time, money, or energy to file legal complaints.

Federal, state, and local governments also violate disability statutes. A KHN investigation last year found that government vaccine registration websites were inaccessible to the blind. Spurred by that story, the Department of Justice reached an agreement with five New York local and state government agencies to correct such issues. The DOJ has since reached settlements with , , , and to ensure accessible registration for vaccination appointments.

Following an outcry from disability advocates, the CDC of those with increased risk of severe covid to include people with disabilities. And in mid-February, the National Institutes of Health’s Rapid Acceleration of Diagnostics Tech program to create accessible at-home covid tests, while the Department of Health and Human Services called on manufacturers to assess at-home covid tests’ operability for those with disabilities.

But as many doctor appointments to keep patients safe amid covid surges, the inaccessibility of telemedicine has become , said Howard A. Rosenblum, CEO of the . The Americans with Disabilities Act and other disability statutes are being violated, he said, when health care providers do not provide telemedicine technology with captioning or the ability for interpreters to be in the same teleconference.

When needed to see her nurse practitioner in the 2020 depths of the pandemic, she was initially thrilled to set up a telemedicine appointment to avoid the risk of covid exposure. Until she realized the virtual visit wouldn’t have captioning.

As a person with hearing loss, Hamlin lip-reads and uses captions to help understand video meetings. The resident of Germantown, Maryland, could barely follow along during the appointment. As director of public policy for the , she was enraged. But she was hesitant to do much about it.

“You’re in the middle of a pandemic, how much do you want to alienate your doctor?” she asked.

A small number of health care providers, such as UAB Medicine in Birmingham, Alabama, and MedStar Health in the Washington, D.C., area, do offer interpretive services. Zoom also has a . But more than 35% of physicians have no idea what their legal responsibilities are to disabled patients under the ADA, according to a article published in January.

“There’s no ADA police,” Hamlin said. “All the burden is on the consumer.”

Goel’s doctors broke the law, but they are not being punished or penalized for it. And she doesn’t know whom she would talk to about suing.

Although the technology advancements in Goel’s lifetime — like the used to conduct this interview with her — have given her more independence and connection with others, the pandemic has stripped much of it away, she said. It has limited her ability to use Uber to travel places due to increased cost and pandemic risk, and isolated her at home with her parents.

“Instead of growing in independence, it just feels like I’ve gone backwards,” she said.

The accelerating shift toward at-home testing that used to be done in doctors’ offices is another growing problem for disabled Americans, said Bryan Bashin, CEO of the LightHouse for the Blind and Visually Impaired in San Francisco.

Take colon cancer screening, he said. Many doctors now recommend patients do a fecal collection at home: Put a portion of one’s poop in a test tube, write the date on it, and send it to the lab.

“Let me tell you, I will never subject a friend of mine to help me with this,” said Bashin, who is blind. While he was eventually able to schedule a screening appointment with his doctor after talking to his insurance company, it delayed his care.

“Accessibility needs to be part of what we do as a government, as a society,” Bashin said. “The ADA says that you don’t just have accessibility when things are running normal.”

Michelle Hackman, a blind Wall Street Journal reporter in Washington, D.C., via her Aetna health care flexible spending account. But Aetna insisted she print out and mail or fax the receipts, even after she called and explained how difficult that would be for her. It then asked her to have someone help her — something Hackman is all too used to hearing.

“That’s really the indignity,” she said, especially when she didn’t want to risk infecting anyone. Eventually, she talked a manager at Aetna into letting her forward her Amazon receipts.

“Imagine going through this for every single receipt I want to submit,” she said.

When asked about its response to Hackman’s situation, Aetna spokesperson Ethan Slavin said: “We’re committed to making all of our services accessible to our members and make appropriate accommodations for members with disabilities.” The company then reached back out to Hackman to process her forms.

Slavin also sent KHN a medical information release form for Hackman to fill out, which would have allowed the company to discuss her situation. But she would have had to print, write on, and rescan it — the problem she called them about at the start.

KHN reporters Victoria Knight and Hannah Recht contributed to this article.

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