Health and Fitness Tips

How Gold Is Driving the Spread of Ebola

Mining has been the lifeblood of this remote Congolese hill town for decades. Now, it is fueling the spread of a devastating outbreak.

from NYT > Health https://ift.tt/1xVY8pR

‘We Live With Fear’: In Congo, Doctors Face Ebola With Little Protection

Harrowing scenes are unfolding at health facilities at the epicenter of an Ebola outbreak in the Democratic Republic of Congo.

A 25-year-old midwife and a doctor in his early 30s are sick with Ebola symptoms, including fevers and severe joint pain, said their colleague Elisabeth Furaha, the medical director at SOFEPADI’s Karibuni Wa Mama Medical Center in the northeastern province of Ituri.

They had cared for patients with similar symptoms in early May, before the outbreak was detected. One of the patients is now dead, Furaha said, and none of them has been tested for Ebola, even though samples were taken. The hospital still lacks access to tests, and an adequate supply of protective gowns and plastic masks to keep doctors and nurses safe.

“We live with fear in our stomachs,” Furaha said, speaking in French. “Every day, there are healthcare providers and patients dying.”

The outbreak took the world by surprise, with nearly 250 suspected Ebola cases and 80 deaths by the time Ebola was confirmed in Congo. Disturbed by the extent of silent transmission, and by cases in neighboring Uganda, the head of the World Health Organization sounded the group’s highest alarm on May 17, declaring the outbreak a “public health emergency of international concern.” That triggered donations from around the globe, including a pledge of more than $162 million from the U.S. State Department to “stop the outbreak at its source and ensure Ebola does not reach the United States.”

But despite international attention, doctors in northeastern Congo say that many clinics lack even rudimentary supplies: gloves, protective gowns, masks, Ebola tests, and even clean water. Without rapid action to bolster those on the front line, researchers say, the outbreak will grow exponentially, costing even more money and risking lives far beyond Congo.

“All signs point to this becoming the biggest outbreak we’ve ever seen in the DRC,” said Nahid Bhadelia, the director of Boston University’s Center on Emerging Infectious Diseases. “That could lead to regional instability, and that has repercussions for the world.”

Some supplies from the country’s Ministry of Health, the WHO, and other United Nations agencies have landed in northeastern Congo, but not nearly enough to stock hundreds of health facilities where Ebola patients may seek care. Furaha has spent her own money on gloves, masks, and a tarp to build a makeshift tent to isolate patients with Ebola symptoms from the rest of the hospital. But she said it’s “inhumane” to put patients there before she can afford a mattress for them to rest on, or reliable access to tests.

Without testing, patients who turn out to have Ebola can infect those who don’t. Malaria and other diseases have initial symptoms similar to Ebola, causing fevers, soreness, and gastrointestinal problems.

Aid workers say shipments of medical supplies have been delayed by logistical hurdles, such as suspended flights within Congo and between Congo and neighboring countries.

“We need flights to move a lot of things, so this is a big challenge,” said Chikwe Ihekweazu, executive director of the WHO Health Emergencies Program. Small planes used in humanitarian crises have been permitted to move, but Ihekweazu said those are insufficient, expensive, and unsustainable.

Moving between remote clinics can be an impossible task because roads are often badly eroded or blocked by armed groups, said Rafaramalala Volanarisoa, a doctor with Catholic Relief Services in Kinshasa, Congo’s capital. Conflict, combined with the Trump administration’s abrupt withdrawal of funds from the U.S. Agency for International Development, has made Congo’s already ailing health system dysfunctional, Volanarisoa said.

“It’s very dangerous,” she said. “There is no medicine, no equipment, no surveillance.”

Dilapidated Labs

Researchers at Congo’s National Institute of Biomedical Research had built a sophisticated molecular biology laboratory for surveillance in Goma, the country’s eastern economic hub. But the lab stopped functioning last year after the Rwandan-backed armed group M23 violently seized control of Goma and shuttered its airport, stunting the flow of international aid.

An armed guard stands in front of a building behind a barbed wire fence. A medical worker wearing a gauze cap, mask, and gown, looks at the building. — A soldier with the armed group M23 stands guard outside a molecular biology laboratory in Goma, in the Democratic Republic of Congo. The lab, built by Congo’s National Institute of Biomedical Research, stopped functioning after M23 seized the city last year, but the group is now cooperating with aid organizations to get the lab running and supply hospitals. (Jospin Mwisha/AFP via Getty Images)

Other cities in Congo lack well-stocked molecular biology labs, so they have instead relied on simple, automated tests that detect only one type of Ebola virus, said Eddy Kinganda-Lusamaki, a microbiologist at the biomedical institute. The shortcomings of these simple tests became obvious when the first samples tested in early May were negative for Ebola. Doctors were still worried, so they collected more samples, packed them in an icebox, and sent them to the institute’s main lab, in Kinshasa.

It took the samples six days to get there, traveling over bumpy roads and between storage facilities, Kinganda-Lusamaki said, and many were degraded by the time they reached the institute on May 14. Still, researchers identified an unusual variety of Ebola caused by the Bundibugyo virus, with a fatality rate of up to 50% and with no vaccines or drugs existing to treat it. They alerted authorities.

Later, investigators traced the first confirmed cases back to several deaths from unknown causes in a gold-mining town in Ituri. The Red Cross suggests Ebola was spreading there as early as March, with three of the group’s volunteers dying of unknown causes after burying bodies as part of their humanitarian work.

As of June 3, 363 Ebola cases and 62 deaths had been confirmed in the country, according to Congo’s National Institute of Public Health. Tallies of suspected cases have fluctuated dramatically, a reflection of gaps in surveillance.

Researchers at the biomedical institute urgently want to improve labs in eastern Congo so they can test for Bundibugyo.

“We need support for local staff, training, equipment, consumables, and fuel,” for cars and backup generators, Kinganda-Lusamaki said. He also worries that expensive lab equipment could be stolen or destroyed by roving militias if war is permitted to continue in the east. “My brothers and sisters are perishing,” he said.

Conflict Aids Ebola’s Spread

Violence abets Ebola in other ways. As the outbreak was silently spreading in Ituri in late April, nearly 200 people caught in the crossfire of armed groups fled, potentially carrying the virus with them. South of Ituri, Maurice Kakule Mutsunga, a doctor at a large general hospital, said he’s seen a surge of people injured or killed by members of the Allied Democratic Forces, an armed group linked to the Islamic State. “Every day this week we’ve received patients massacred by the ADF,” Kakule Mutsunga said in French, adding that bodies carried into the hospital have been decapitated by machetes.

Two people transport a body cradled in a cloth alongside a group of people walking. — A body is carried in Beni, a city in northeastern Congo, on May 31 after an attack attributed to the Allied Democratic Forces, an armed group linked to the Islamic State. (Seros Muyisa/AFP via Getty Images)

People displaced by attacks are living in dense quarters that provide perfect conditions for a virus that spreads through touch. A person sick with Ebola, or recently killed by it, excretes sweat, blood, and other liquids packed with viruses that cause the disease.

Unpredictable attacks have also prevented health workers from tracking down people who may be infected in remote villages, to offer them care and keep the virus from spreading to others, Kakule Mutsunga said. Less than a quarter of contacts that Ebola responders identified had been monitored for signs of infection, the WHO reported on May 21.

Contact tracing and isolation — the cornerstones of an Ebola response — are also fraught because of the slow turnaround time on tests. Kakule Mutsunga said samples from his hospital in the town of Oicha are shipped to Kinshasa on humanitarian flights that take off only once they are at capacity. Many patients can’t or won’t isolate themselves for a week while they wait on results, he said, so they may pass the deadly virus to those closest to them.

Congolese researcher Gang Karume said that scientific information about Ebola isn’t reaching many communities, partly because of the trauma of daily life. On top of years of conflict, more than 220,000 young children are severely malnourished in provinces where Ebola is spreading. He wasn’t surprised to learn that angry youths have set fire to Ebola treatment centers and stolen corpses from morgues.

“An empty stomach does not have ears to listen,” he said.

To reach people, the Catholic humanitarian group Caritas is relying on its network of some 250 priests in Ituri. “They’re deeply rooted,” said Volanarisoa, with Catholic Relief Services, which partners with Caritas. “They understand how to approach communities who refuse to seek treatment.”

Through this network, Volanarisoa and her colleagues have gotten in touch with health workers seeking medical advice and protective equipment. With private donations, the Catholic charities have transferred money to priests in the northeast who arrange for jeeps to carry cash and supplies to clinics.

“What we’ve provided will only last for a few weeks,” Volanarisoa said. “The need is really immense.”

Another crippling factor is that the United States is far less involved than in the past, aid workers said. The Trump administration left the WHO, dissolved USAID, and downsized the Centers for Disease Control and Prevention.

“The U.S. is just not the player it used to be,” said Jeremy Konyndyk, a former USAID official who led the agency’s response to the world’s largest Ebola outbreak, in West Africa from 2013 to 2016. “We used to have a stockpile of gear for an Ebola response that we could throw on an airplane and get it to where it needs to go,” he said.

The U.S. used to give hundreds of millions of dollars to the WHO and nongovernmental organizations with experience fighting outbreaks. Under President Donald Trump, the State Department has announced that it will give $350 million to a pooled fund maintained by the U.N. Office for the Coordination of Humanitarian Affairs, which will then distribute funds to aid groups.

“This adds steps,” Konyndyk said. “The organizations that are ready to roll now are not confident that they will get money, so they’re kind of frozen.”

A woman walks out of a tent set up during the Ebola outbreak in Congo. — Déborah Nzale leaves her shelter on May 28 in a camp for people displaced by violence in Ituri province. (Glody Murhabazi/AFP via Getty Images)

Even then, aid can take weeks to materialize on the front line. During the West Africa outbreak, more than two months passed between the WHO’s declaration of an international emergency and significant help arriving. In the interim, the Ebola death count more than quadrupled. Nurses, doctors, and ambulance drivers lost their lives.

Front-line workers in Congo face a similar fate if help doesn’t arrive soon. Furaha said her hospital is running out of clean water. “All of this accumulates,” she said. “Healthcare workers will reach a breaking point.”

Chloé Fostier Hernández helped translate interviews for this report.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

This <a target="_blank" href="https://kffhealthnews.org/public-health/ebola-congo-virus-outbreak-drc-africa-health-workers-bundibugyo/">article</a> first appeared on <a target="_blank" href="https://kffhealthnews.org">KFF Health News</a> and is republished here under a <a target="_blank" href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="https://kffhealthnews.org/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150" style="width:1em;height:1em;margin-left:10px;">

<img id="republication-tracker-tool-source" src="https://kffhealthnews.org/?republication-pixel=true&post=2246776&ga4=G-J74WWTKFM0" style="width:1px;height:1px;">

from KFF Health News https://ift.tt/Ew12V7U

In a First, Scientists Precisely Edit Human Embryo Genes

Researchers relied on a newer gene-editing technique that may make it possible to engineer embryos, a prospect that has long alarmed bioethicists.

from NYT > Health https://ift.tt/EvtjUcJ

Bernard Roizman, Virologist Who Demystified Herpes, Dies at 96

He mapped the herpes simplex virus genome, revealing how it invades cells. His work also helped lay the groundwork for potential vaccines and gene therapies.

from NYT > Health https://ift.tt/VIMOo8l

RFK Jr. Seeks To Peek at Americans’ Medical Records for Clues on Autism and Vaccines

U.S. health secretary Robert F. Kennedy Jr. is pursuing federal government access to most Americans’ medical records, in a quest to research a link between vaccines and autism — a connection the medical establishment studied for decades and flatly rejects.

The Department of Health and Human Services is seeking data from little-known state systems that allow hospitals and clinics to exchange detailed, identifiable patient information, KFF Health News has learned.

In private meetings, some public health leaders have objected to giving Kennedy’s team access to such data, raising doubts that it’s legal or that the information would even be useful.

They have also expressed concerns about allowing the federal government to peer into the minutiae of Americans’ medical records, which could mean viewing anything from doctors’ notes to prescription history. HHS has offered no insight into how it will protect or handle the personal health information it obtains.

But Kennedy told KFF Health News that medical records are key to investigating the cause of autism, vaccine safety, and chronic diseases. And millions of dollars in grant money has poured into a Nebraska nonprofit that has assisted Kennedy’s effort, according to state records.

He and his advisers have been frustrated that federal access to Americans’ medical records has been limited.

“We need a good health record system, and one of the things that really surprised me most when I came into office is that there is — that the systems are broken,” Kennedy said in a May interview. “We’ve had to go to the states and, luckily, we’ve got a lot of cooperation from the states, but we now have databases together that we can actually do the studies on. Those studies are in motion.”

HHS has not publicly announced any new projects involving medical records and autism or vaccine research. Kennedy faced blowback last year when he proposed compiling the medical records of people with autism to create a federal disease registry — which health department officials later disputed was underway.

But Kennedy said in May, “We have a whole pipeline of studies that will be done over the next year.”

Though the White House has steered Kennedy away from further changes to U.S. vaccine policy ahead of November’s crucial midterm elections, President Donald Trump has regularly echoed Kennedy’s doubts about vaccine safety and last week signed an executive order calling for the U.S. to reduce the number of vaccines recommended for children.

Kennedy’s political appointees and allies — including William “Reyn” Archer III, a former Texas health official and vaccine critic whom Kennedy hired as a senior adviser — have led the initiative for the health department to collect and examine medical records.

A man sits at a table with a placard with his name on it. Other faces are seen blurred in the foreground in front of him. — William “Reyn” Archer III, a former Texas health commissioner, attends the Advisory Committee on Immunization Practices meeting at Centers for Disease Control and Prevention headquarters on Sept. 20. (Mary Conlon/AP)

Federal officials met with leaders of the state-run health information exchange systems several times over the past year and asked how the personal medical records they maintain could be used for vaccine research, according to seven people who participated in the discussions or were familiar with them.

Craig Behm, who runs the Maryland health information exchange, said Kennedy’s team asked about how the vast trove of medical records they store from hospitals and health systems could be used to study vaccines.

“If this administration wants to conduct research on the effectiveness of vaccines, are you saying you all can help us conduct that research?” Behm recalled being asked by a top official at HHS’ health information technology office.

Last June, Behm and leaders of other state exchanges met with Kennedy’s top advisers to discuss sharing more medical data with federal agencies. The state organizations followed up with a pitch in October for a new surveillance system that would give the federal health department “real-time, 24-hour data feeds on opioid and chronic disease trends” within a year, according to a presentation reviewed by KFF Health News. Under the proposal, HHS would get data from 90% of the population’s medical records by 2028.

Administration officials regularly asked during the meetings how the records could be used to monitor vaccine safety. Kennedy has rejected the federal government’s current vaccine-monitoring systems; decades of research has shown immunizations are safe and effective for most people.

“Vaccine safety, or whatever words you want to use, has come up pretty consistently in those conversations,” said John Kansky, CEO of the Indiana Health Information Exchange.

Kansky sees the potential value of sharing information from the exchanges for public health but is worried about the focus on vaccines: “It’s like, oh man, I wish you would have picked something that pushed fewer buttons for people.”

A System To Monitor Chronic Disease

Nearly every state has at least one health information exchange — often regulated by state laws and run by private companies or nonprofits — that enables hospitals and health systems to immediately share patients’ medical records with one another. The systems allow doctors and nurses to quickly pull up nearly anyone’s medical history and records at emergency rooms or share after-visit summaries and notes with patients’ primary care providers, for example.

In certain circumstances — most often dealing with cases of infectious diseases such as measles or flu — the exchanges notify public health authorities, like the state health department or the Centers for Disease Control and Prevention. Using the exchanges for broader public health purposes is not an unusual idea in itself. But it can present privacy, legal, and ethical complications, health officials say.

In the end, Behm said his organization in Maryland declined to share more data with the federal government for vaccine research, noting that sharing medical records for that purpose would require a rash of approvals from hospitals, state political leaders, and research boards. Any new data-sharing agreement should also have a clear, detailed framework outlining what would be shared and with whom, he added.

“A number of us said, ‘We can’t do anything our agreements don’t allow us to do, so no,’” Behm said. Indeed, most health information exchanges have contractual restrictions on who can access clinical data.

Kansky said Indiana is still weighing whether to provide additional data for Kennedy’s project, and that nothing has yet been shared.

HHS spokesperson Emily Hilliard did not answer questions about how many states are participating in Kennedy’s project, what new data the agency is collecting, how much the federal government is spending on the initiative, how it is protecting patient privacy, or who has access to the data.

“HHS is strengthening public health surveillance and modernizing data systems to better understand and combat the childhood chronic disease epidemic as part of Secretary Kennedy’s Make America Healthy Again agenda,” Hilliard said in an emailed statement. “Americans deserve robust systems to monitor the drivers of chronic illness.”

Kennedy has asserted, without evidence, that vaccines can cause chronic illness.

A Kennedy Partner in Nebraska

At least one state has been cooperative.

The former leader of Nebraska’s state health information exchange has led the effort to share data from medical records with the federal government.

Jaime Bland, former CEO of CyncHealth — the Nebraska health information exchange used by most hospitals and health systems in the state — said several states are looking to “open up channels” to provide more analysis to Kennedy’s team.

“They’re looking at the data differently and providing some insights back to the CDC,” Bland told KFF Health News.

Bland was among a group who proposed that CyncHealth would help kick off the initiative, according to a 43-slide PowerPoint presented to federal officials during an October meeting.

CyncHealth and other state health information exchanges would “ingest data from hospitals, clinics, laboratories, pharmacies, payers, and social services agencies,” then “link claims and clinical records through a master patient index.”

Data from the exchanges “will be deidentified where appropriate,” according to one slide.

The federal government would pay the exchanges for furnishing the records, according to the proposal: $3 a person, annually.

Officials would “frame publicly that this is not a new database, but a federated trust model that delivers real-time data for all HHS missions,” the presentation reads.

After the meeting, Nebraska’s health department was awarded a large grant from the CDC, and CyncHealth in turn got millions of dollars from the state.

On Dec. 19, the CDC announced new funding under its Epidemiology and Laboratory Capacity program, which sends money to state and local health departments for lab work, health information enhancements, and solutions for outbreaks.

Nebraska’s state health department was awarded $18.7 million — the most of any state last year, though Nebraska is the 38th most populous state. By comparison, Texas received $9.2 million, and California got $10.8 million.

CyncHealth was then awarded three contracts totaling $13.6 million from the state health department just weeks later, on Jan. 9 and Jan. 16, according to a publicly accessible database of state contracts.

Grace McNamara, a spokesperson for CyncHealth, said it retained $2.4 million of the funding for Kennedy’s project; the remaining money was distributed to “other participating states and various vendor organizations for implementation support.”

A former CDC official who was aware of the transaction, but not authorized to speak publicly about it, confirmed the money was intended for CyncHealth to supply data for Kennedy’s initiative to look at vaccines and autism. McNamara said that the “work is focused on improving outcomes related to acute and chronic illnesses.”

“The referenced project is not research, but rather a proof-of-concept project on how health information exchange and public health can work together to improve health outcomes and is not specific to autism,” she said in an emailed statement.

McNamara did not answer questions about what type of medical data is being provided to the federal health department or whether patients’ identifying information is removed.

Bland left her post at CyncHealth — where she was paid nearly $420,000 a year — in December. She was named in April as the chief data strategist for the MAHA Institute — a think tank founded by allies of Kennedy and Trump to advance their Make America Healthy Again movement.

Bland agreed with Kennedy that data from state health information exchanges could provide more insight into autism’s causes or vaccine injuries.

“The data is so fragmented, so modeled when it comes to population health and public health, that we lose sight of the individual stories,” Bland said. She told a story she had heard about a woman who had a seizure after receiving the HPV vaccine.

“You know, the vaccine is safe — it absolutely is — but it wasn’t safe for her,” Bland said. “As public health officials, we say the vaccine is safe. But there are cases where it is not.”

Daniel Jernigan, a former top CDC official who left the agency last summer, said he tried to point Kennedy to data that would help the health secretary study vaccine safety and autism.

Dan Jernigan shakes the hand of a man off screen outside of the CDC headquarters. — Former CDC official Daniel Jernigan greets a supporter after resigning from the agency on Aug. 28. (Elijah Nouvelage/Getty Images)

After 31 years at the CDC overseeing public health surveillance, emerging infectious diseases, and the influenza divisions, Jernigan thought the solution was simple. The secretary could work with researchers to obtain huge databases pulled from health systems nationwide and maintained by major electronic health records companies.

Those databases are deidentified, meaning they don’t include patient names or other information that can identify individuals. Jernigan said Kennedy didn’t seem interested.

Instead, as The New York Times first reported, the health secretary dispatched two top advisers — Archer and Hannah Anderson, his former deputy chief of staff — to the CDC’s headquarters in Atlanta last July to download millions of identifiable patient records directly from the Vaccine Safety Datalink, the system the health agency uses to investigate complications from vaccines. The records, though, were decades old.

Jernigan said the federal government has limited legal authority to access medical records from state health information exchanges. In any case, examining those records may provide a view of a person’s medical history that will not necessarily produce answers to Kennedy’s questions about vaccines and autism.

“If they’re just using the electronic health record data, there are limits to that,” Jernigan said. “If they’re only looking at electronic health record data, all you’re going to get is what was captured in the encounter. It’s not going to be very satisfying.”

KFF Health News data reporter Maia Rosenfeld contributed to this article.

This <a target="_blank" href="https://kffhealthnews.org/mental-health/sharing-patients-medical-records-access-rfk-jr-project-link-autism-vaccine-injuries/">article</a> first appeared on <a target="_blank" href="https://kffhealthnews.org">KFF Health News</a> and is republished here under a <a target="_blank" href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="https://kffhealthnews.org/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150" style="width:1em;height:1em;margin-left:10px;">

<img id="republication-tracker-tool-source" src="https://kffhealthnews.org/?republication-pixel=true&post=2245892&ga4=G-J74WWTKFM0" style="width:1px;height:1px;">

from KFF Health News https://ift.tt/MNxEoKC

An Uncertain Path for Americans Exposed to Ebola

Despite long-established procedures for bringing Americans home for monitoring and treatment, the Trump administration has not said that it will allow those at risk of Ebola back into the country.

from NYT > Health https://ift.tt/I6BNWVS

Trump’s Medicaid Work Rules Force States To Scrap Plans and Rework Systems

The Trump administration’s rollout of a federal mandate that millions of Americans on Medicaid must work or risk losing health benefits will force states to scrap months of preparation, according to advocates for Medicaid enrollees and consultants advising states.

And they say an overhaul — less than seven months before states must start enforcing the requirement — will be costly.

Regulations issued June 1 by the Centers for Medicare & Medicaid Services dictate many granular details about how the new work requirements will play out. They cover how states should check whether Medicaid enrollees are following the rules, and how people can claim an exemption so that their health benefits don’t hinge on work, community service, or going to school.

Next year, President Donald Trump’s One Big Beautiful Bill Act could require roughly 18.5 million adults across 42 states and the District of Columbia who receive Medicaid benefits to prove they’re working or participating in a similar activity to keep their health coverage — unless they qualify for an exemption.

Much of the verification will run through state computer systems that assess whether low-income people qualify for Medicaid and other safety net programs — technology often built and run by private companies under contracts routinely worth hundreds of millions of dollars. Many of those systems have a history of errors that can cut off benefits to eligible people.

For months, states have been communicating with federal regulators and rushing to build systems to comply with the looming mandates, said Kinda Serafi, a partner at the Manatt Health consulting and legal firm. The rules released this week represent a “significant policy pivot” from what states were expecting, Serafi said.

“The administration has actually taken what we know to be a tough situation and has just made it even worse,” Serafi said. States had already committed to paying contractors tens of millions to adjust their systems.

After Trump signed his signature tax-and-spending bill into law last July, one of the most significant remaining questions was how much discretion the federal government would give states to define exemptions for people too sick to work. The “medical frailty” exemption allows a person to claim they have a health condition that prevents them from working at least 80 hours a month, as the law requires.

To qualify, a person generally must fit into at least one of five categories: They must be blind or disabled; have a substance use disorder; have a disabling mental disorder; have a physical, intellectual, or developmental disability that significantly impairs their daily life; or have a serious medical condition. States are not allowed to add categories.

Under the new regulations, CMS said having a medical condition alone isn’t sufficient to exempt someone from the work requirements. States must assess “the severity of an individual’s condition” to determine whether they can stay on Medicaid without working — a standard that makes it more difficult for enrollees to meet the criteria.

CMS officials did not list specific conditions that qualify for exemptions, but the agency did say homelessness can’t be a reason to claim that exemption because it is not a medical condition.

To implement the law, states “will have to undo work that they did,” said Daniel Meuse, deputy director of Princeton University’s State Health and Value Strategies program, which works with state governments on various health coverage issues.

The Trump administration previously acknowledged that the work to upgrade state Medicaid eligibility systems to comply with the law is coming at a cost. In January, top CMS officials said government contractors, including Deloitte, Accenture, and Optum, have promised to offer discounts and reduced rates through 2028 to help states adjust their systems.

The discounts “may be helpful” in some states, but they’re “not going to be helpful across the board” due to variations in state contracts, said Heather Howard, director of the State Health and Value Strategies program.

“Anytime you have to go back and say, ‘Oops, we need to reprogram this one thing,’ there’s a cost,” Howard said.

States were prepared to create lists of conditions and diseases to qualify people for work requirement exemptions, according to health care experts advising them. Mining data to verify someone’s illness was already a tall order for states because the computer systems that determine whether someone is eligible for Medicaid often do not communicate with the systems that track medical claims.

America’s health care payment systems rely on a set of standardized codes that correspond to specific diagnoses.

But there’s no “code that designates that someone is too sick to work — that’s a subjective assessment,” said Rachel Klein, deputy executive director of The Aids Institute, a nonpartisan advocacy group for people with HIV. “This is a recipe for disaster.”

The new federal standards pose immediate issues for Nebraska, which launched its Medicaid work requirement on May 1, eight months before the federally mandated deadline. Nebraska handles decisions on medical frailty differently than the Trump administration does.

Nebraska officials had already released a nearly 300-page list of medical conditions that qualify as exemptions, such as types of cancer, dementia, autism, epilepsy, HIV, and Parkinson’s disease. The state, which relies on government workers to check Medicaid eligibility, doesn’t require a person to prove how sick they are.

But under Trump’s rules, people will have to show their qualifying illness is impeding their ability to work.

Now, Nebraska is “going to have to go back and figure out how to assess whether all of these people are too sick to meet the requirement,” Klein said.

Medicaid enrollees are slated to start losing coverage this summer under Nebraska’s early rollout.

Sarah Maresh, a program director with Nebraska Appleseed, an advocacy organization for people with low incomes, said the state should refrain from terminating people’s coverage until next year because of the changes it will need to make. State residents are already confused and scared, she said, and the new rule “makes matters much worse.”

In response to several questions, Jeff Powell, a spokesperson for Nebraska’s Department of Health and Human Services, said the state is reviewing the new federal regulation to determine potential impacts.

The new federal standards will limit people’s ability to attest that they are medically frail starting in 2028 and will require documentation as proof, another change states weren’t expecting, Meuse said. More than two dozen states had planned to allow applicants and enrollees to declare conditions themselves to get exemptions, according to KFF.

Striking the right balance of flexibility was an important part of deliberations when crafting these rules, CMS Administrator Mehmet Oz said on a June 1 call with reporters. “The mantra we kept coming back to was that we’re forgiving, but we’re not foolish,” he said.

Trump officials wrote in the regulation that Medicaid work requirements have “the potential to empower Medicaid beneficiaries” by allowing them to “escape isolation and dependency, build confidence, achieve self-sufficiency and prosperity, and improve health.”

Stephanie Burdick, a leader of the Protect Medicaid Utah coalition, disputed the premise.

“If they want to improve work opportunities or connection and decrease isolation and loneliness, they would be starting job programs and volunteer service programs,” Burdick said. “They wouldn’t just be forcing more administrative burden onto people and then saying that it’s good for them.”

An estimated 5.3 million enrollees will become uninsured by 2034 due to Medicaid work requirements, according to the nonpartisan Congressional Budget Office.

But with the new regulations, Howard said, there’s a risk of “that number being even higher.”

This <a target="_blank" href="https://kffhealthnews.org/medicaid/trump-law-medicaid-work-rules-states-overhaul-eligibility-systems/">article</a> first appeared on <a target="_blank" href="https://kffhealthnews.org">KFF Health News</a> and is republished here under a <a target="_blank" href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="https://kffhealthnews.org/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150" style="width:1em;height:1em;margin-left:10px;">

<img id="republication-tracker-tool-source" src="https://kffhealthnews.org/?republication-pixel=true&post=2246301&ga4=G-J74WWTKFM0" style="width:1px;height:1px;">

from KFF Health News https://ift.tt/uYLboC0

Only the Right Tests Can Stop This Ebola Outbreak. Congo Has Hardly Any.

A chronic lack of investment in development of better tests has left clinicians blind and allows deadly viruses to spread unchecked.

from NYT > Health https://ift.tt/XKiGmHA

Festering Infections to Untreated Cancer: ICE Detainees Describe Medical Neglect Across US

An Albanian man’s pain grew so unbearable, he said, he pulled out his own tooth as he languished for months in a New Mexico immigration detention center. A Honduran mother of two said she was hospitalized for a heart problem after she was denied blood pressure medications while held in Florida. A Venezuelan man said his leg grew purple and swollen from flesh-eating bacteria when staffers at a Vermont facility did not bring him to a scheduled doctor appointment.

Hundreds of detainees across at least 33 states allege in federal suits that immigration detention facilities are failing to provide adequate medical care, an investigation by KFF Health News and The Associated Press found. Detainees say they didn’t get medications on time — or at all — for conditions including high blood pressure, diabetes, depression, epilepsy, Parkinson’s, and HIV. Requests for help went unanswered for weeks. Blood sugars rose. Infections festered. Cancers remained untreated. Detainees collapsed and had seizures.

U.S. jails and immigration detention centers have long struggled to meet the medical needs of the people in their charge. But the system is sagging under an influx of detentions since President Donald Trump returned to office: More than 75,000 immigrants were being detained by U.S. Immigration and Customs Enforcement as of mid-January, up from around 40,000 a year earlier.

KFF Health News and AP analyzed thousands of court cases filed since Trump’s second inauguration that use a legal route known as habeas corpus to argue people are being held illegally by ICE. The records offer a rare window into how those detained say, often under penalty of perjury, ICE is handling their medical needs. Reporters also interviewed more than 50 detainees, family members, and lawyers.

The investigation revealed that medical neglect is alleged across the sprawling detention system, including in offices not designed to house people, county jails, and quickly staged sites with nicknames such as “Alligator Alcatraz.”

ICE custody is deadlier than it has been in two decades, researchers wrote in JAMA in April. The Department of Homeland Security reported 51 people had died in detention since the start of Trump’s second administration — with suicides spiking to an unprecedented number.

KFF Health News and AP asked DHS to respond to the findings six days before publication, but it did not provide comment. The department’s acting Chief Medical Officer Sean Conley has previously said “it is both policy and longstanding practice for aliens to receive timely and appropriate medical care from the moment they enter ICE custody” and that the agency recruits healthcare professionals to maintain high standards. “This is better, more responsive healthcare than many aliens have ever received in their entire lives,” he has said.

Individual facilities and private prison companies contracting with DHS that responded to requests for comment said they follow ICE standards and detainees receive medical care when it is required. Some said they were unfamiliar with the allegations outlined in court documents; others blamed some detainees for lapses in their medical care.

“I have never seen such disregard or medical neglect like this anywhere,” Vardan Gukasian, a political dissident and former paramedic who spent years behind bars in Armenia, wrote in a court declaration in March to contest his detention in Henderson, Nevada, as it stretched to 13 months despite health problems.

Madeleine Skains, a spokesperson for the city of Henderson, said medical care is always available at the facility and that the court had not ordered changes to his care.

Last June, as Gukasian experienced the symptoms of uncontrolled high blood pressure — dizziness, a nosebleed, and a headache — his cellmate banged on their door for help.

“When it did not arrive, the rest of the block banged on their doors,” he wrote. Gukasian was hospitalized that day.

‘Brazen Indifference to Really Obvious Problems’

The administration’s mass deportation effort has swept up hundreds of thousands of people during routine immigration check-ins, at traffic stops, at their homes, and in hospitals.

About 70% of detainees have no criminal conviction. Their immigration proceedings are civil, not criminal.

“I couldn’t understand why they treated me so harshly,” said a father of six in Georgia. He said he was injured while shackled in custody when the vehicle transporting him to an Atlanta facility jolted, throwing him out of his seat and into a metal armrest. His wound became infected with E. coli, he said, because he had to sleep on a dirty concrete floor amid leaking toilets.

Like other detainees interviewed, he spoke on the condition of anonymity; they said they fear for their safety, for the safety of their families, or that speaking out would jeopardize their immigration cases. The AP and KFF Health News are not naming anyone identified in court documents without their consent.

Staffers at Stewart Detention Center in rural Lumpkin, Georgia, didn’t adequately respond to that man’s request for medical help, a court filing says, until he passed out and was taken to a hospital about an hour away. There, he said, a doctor told him he’d narrowly escaped amputation of his left leg. Medical staff found no records of a case matching this description, according to Brian Todd, a spokesperson for CoreCivic, which runs the facility.

The 48-year-old, who moved to the U.S. from Guatemala more than two decades ago, was released in October and is now a legal permanent resident. But he is unsure if he’ll be able to return to his job in construction because, he said, he can no longer lift heavy things due to his injury.

A man in the Atlanta area was injured while in U.S. Immigration and Customs Enforcement custody and developed an *E. coli* infection. “I couldn’t understand why they treated me so harshly,” says the father of six U.S. citizens, who is now a legal permanent resident but did not want to be named to avoid potential retaliation against his family. (Brynn Anderson/AP)

Some detainees or their lawyers said even basic care was denied: gauze to protect an open foot wound, prenatal care for a high-risk pregnancy, a pillow to ease the pain of sleeping with advanced stomach cancer, sanitary pads for postpartum bleeding.

“I would like to believe the government has the best interest of those it holds in detention for whatever period of time,” Judge Benita Pearson, a federal judge in Ohio, said during a hearing in October concerning a 70-year-old who alleged the government lost her glasses during her arrest. “If one is unable to see due to the loss of glasses when detained, that should be fixed.”

Dora Schriro, who worked for ICE and now serves as a special adviser to the American Bar Association, said case law requires the government to treat people in immigration detention with the same care it affords those in traditional jails awaiting trial. But administrators are granted discretion and medical care standards vary.

Detainees are frequently moved across the country, often without warning, interrupting treatment. A woman from El Salvador said she missed a week of HIV medication when she was transferred from Colorado to a county jail in Wyoming.

A Russian man wrote that, while detained in Texas, he saw a gastroenterologist about his painful gallstones and scheduled an appointment with a surgeon. “Unfortunately, I never got to see him, due to my being moved around various detention centers.”

Advocates say that even obvious disabilities, like legal blindness, are ignored.

A detainee who lost one eye and had severe glaucoma in the other required twice-daily drops to maintain what vision remained. But, he said, some days the drops never came.

“Now I can only see a little bit straight in front. It now often looks like I’m seeing through gauze,” the man wrote in a court declaration. “This makes me very afraid that one of these times I am going to open my eyes and not be able to see anything at all.”

He wrote that he was scared he wouldn’t be able to see his infant son grow up.

“It’s just sort of brazen indifference to really obvious problems, things you would have thought absurd a decade ago — like the fact that you can’t see,” the man’s attorney, Brian Hoffman, said. “Before, you could attempt to work with folks on the government side and maybe shame them into doing the right thing. Now, it’s sort of like anything you want done you have to go to court and sue over.”

Even court orders aren’t always enough. One California judge ordered the government to take a man showing signs of prostate cancer to a specialist for diagnosis and treatment. Records show they did not take him.

Lawyers representing ICE told the judge that officials missed the appointment because of an “internal scheduling error.” CoreCivic, which runs that facility, said it was unable to comment on active litigation.

A Surge in Cases

When immigrants file habeas corpus petitions, they exercise a right to challenge unlawful imprisonment that dates back to medieval times.

More than 40,000 such petitions have been filed during Trump’s second term, fueled by decisions last year to deny bond to many people held on immigration charges. Judges are split on whether that’s legal; the question appears headed to the Supreme Court.

Many habeas claims have been successful, but judges typically cite reasons unrelated to the medical neglect described in the petitions, such as detainees’ being held too long before being deported.

The more than 300 medical neglect claims found in this investigation represent a fraction of the problem. The details of habeas corpus cases are often hidden due to a federal rule barring the public from viewing such documents online. KFF Health News and the AP obtained some documents from courthouses and received records on 4,400 cases from Habeas Dockets, a project of the nonprofit Immigration Justice Transparency Initiative. But tens of thousands more remain largely inaccessible.

Some judges have written that the habeas process is not how to raise allegations of medical neglect and have declined to release detainees over those claims. Not every detainee who believes they experienced medical neglect files a habeas petition or cites their medical issues if they do.

Jose-Antonio Segismundo’s petition made no mention of being unable to see an oncologist for the cancer in his abdomen while detained for more than seven months at the Florida detention facility known as Alligator Alcatraz and Folkston D Ray ICE Processing Center in Georgia. Medical records in his court filings show he was arrested about five weeks before his scheduled appointment with a cancer specialist.

His wife, Maria Jose Gonzalez, said he didn’t receive any treatment even though she sent his medical records and explained his condition to officials at Folkston. When his stomach pain erupted, often suddenly and intensely, she said, they gave him Tylenol.

Geo Group, which runs Folkston, follows ICE standards and provides healthcare and access to off-site medical specialists when needed, spokesperson Christopher Ferreira said.

This spring, Segismundo, 48, was deported to Mexico, a country he left nearly 30 years ago, Gonzalez said. Now, she said, he will have to restart his search for care in the Oaxacan village where he grew up.

Maria Jose Gonzalez of Wimauma, Florida, holds a photo of her husband, Jose-Antonio Segismundo, who was detained in U.S. Immigration and Customs Enforcement custody for more than seven months in Florida and Georgia before being deported to Mexico. Medical records show he was arrested about five weeks before his scheduled appointment with a specialist to treat his abdominal cancer. (Chris O'Meara/AP)

Watching Loved Ones Deteriorate

Detainees receiving inadequate healthcare have little recourse. The Department of Homeland Security last year gutted the Office of the Immigration Detention Ombudsman. In early May, it shut the office entirely, arguing that Congress didn’t fund it.

Previously, ombudsman staffers could help facilitate medical care or look into complaints of neglect, according to Matt Boles, an immigration attorney in Georgia. Now, he said, there’s no one to call.

Meanwhile, detainees’ families said they feel helpless, making desperate calls to facilities, the government, and their legislators while watching their loved ones deteriorate.

Riya Khan saw her mother get sicker at the California City Detention Facility, which is owned by CoreCivic. When she visited a week after her mother arrived at the facility in the Mojave Desert, Riya said, the 64-year-old woman stumbled into her seat. She was shaking and her breathing was labored.

Masuma Khan came to the U.S. from Bangladesh in 1997. She has no criminal history, her records say, and was detained in October when she showed up for her regular ICE check-in.

For the month she was detained, according to her daughter, she only intermittently received her medications for conditions including high blood pressure, hypothyroidism, and prediabetes. CoreCivic treats chronic conditions in line with applicable medical standards, Todd said.

“Nothing matters more to CoreCivic than the health, safety and well-being of the people in our care,” Todd said.

Khan said she got her asthma medication for the first time two days before she was released and that her eye drops for glaucoma never arrived. Staffers told Khan she needed to buy some of her medications from the commissary but it didn’t stock them, her daughter said.

Before ICE detained Masuma Khan, she made friends with everyone, her daughter said. She had worked for years at Lucky Boy, an iconic Pasadena fast-food restaurant, and in her free time fed birds and left out fruit for bees that visited her apartment’s balcony.

Now she’s too scared to go outside. She still must regularly check in with ICE, and she’s terrified each time.

Masuma Khan (center) waits in line with her attorney Laboni Hoq (left of Khan) to enter a federal building in Los Angeles for an appointment on April 21. (Jae C. Hong/AP)

Khan (second from right in the front row) and her daughter, Riya (fourth from right in the front row), pose with supporters outside a federal building in Los Angeles on April 21. (Jae C. Hong/AP)

Khan (right) came to the U.S. from Bangladesh in 1997 and was detained for a month after she showed up for a regular check-in with U.S. Immigration and Customs Enforcement in October. Here, she hugs her daughter, Riya (left). (Jae C. Hong/AP)

A “Welcome Home” balloon that was left at the front door of Khan’s apartment in Altadena, California, after she was released from an immigration detention facility. (Jae C. Hong/AP)

Khan’s daughter says that her mother has nightmares and is scared to go outside after being held at an immigration detention facility for a month in 2025. (Jae C. Hong/AP)

A Stroke on a Video Call

Previously, detainees with serious medical needs would likely have been released on humanitarian parole, in part to avoid the cost of their care, Vermont attorney Andrew Pelcher said.

In fiscal year 2023 — before the detained population soared — ICE spent more than $390 million on healthcare for detained noncitizens, according to its most recent annual report to Congress. In May, Todd Lyons, then acting director of ICE, said at a conference that the agency had already spent “almost half a billion dollars” on detainee healthcare this year.

Now, under “mandatory detention,” people are staying locked up with serious — and expensive — conditions.

A Romanian citizen underwent several heart surgeries, including an emergency triple bypass in April 2025, before he was arrested in July. As part of his recovery, the 52-year-old was required to take 16 daily medications. While at an ICE field office in Baltimore, his court filings allege, he went two days without any medication before officials moved him to a facility in New Jersey.

He was hospitalized three times while detained, complaining of chest pains — in part, medical records and court documents say, because despite “countless requests,” the detention center did not provide all his medications. Hospital discharge papers cited by his lawyer show he received only eight of the 16 medications after his second release from the hospital.

“Can you please talk to the ICE facility to make sure they give him his medications?” his treatment providers wrote in medical records included in his court filings. “He was admitted last week for chest pain and today he was readmitted again for chest pain secondary to non compliance for medications.”

Several weeks later in August, he had a stroke while on a video call with his daughter, according to court filings. “He was struggling to breathe, and was pointing at his chest where he was again experiencing pain, and suddenly stopped speaking.” His daughter screamed for help through the video monitor, according to his petition. “Eventually an officer came in to assist him and cut the feed.”

The man lost his ability to speak for four days, the document says. He was returned to detention, where he remained until a federal judge ordered his release in November.

Khan holds medication she takes daily. While detained, she says, she only intermittently received her medications for multiple conditions including high blood pressure, hypothyroidism, and prediabetes. (Jae C. Hong/AP)

Impossible Choices

Cassandra Amador waits for the phone to ring every morning, desperate to ask her husband the question that’s woken her up every night for months: “Did you get your medicine?”

Her husband, Pedro Javier Amador Gutierrez, 36, has high blood pressure and depends on the state-run facility in Florida nicknamed “Deportation Depot” to administer the prescriptions that have kept him alive for years. Many mornings, he tells his wife he did not get them.

When she talks to him, she said, he sounds weaker and more scared every day, not like the upbeat man who would take her kids out for ice cream.

“You can hear in his voice how he feels,” she said.

Now, she said, he’s considering returning to Cuba, which he fled because of political persecution, out of fear that he will die in detention without his medicines. Amador and her children would go with him, she said, even though she was born in New Jersey, has never been to Cuba, and doesn’t speak much Spanish.

But he’s already collapsed twice at the Baker Correctional Institution in Sanderson, Florida, his wife said. She’s terrified that the next time, he won’t get up.

Methodology

KFF Health News and The Associated Press sifted through thousands of immigration habeas corpus claims to find allegations of medical neglect from people detained by U.S. Immigration and Customs Enforcement during the second Trump administration.

Without a comprehensive, publicly available dataset of medical complaints by those in ICE custody, we used immigration habeas corpus claims to identify detainees’ healthcare-related allegations raised in federal court. Although the intended purpose of habeas corpus is to challenge the legality of a petitioner’s detention — rather than conditions of their confinement — these filings sometimes include detainees’ claims of inadequate healthcare.

But habeas corpus filings are not always publicly available. Federal rules restrict how members of the public can access habeas petitions filed by people in immigration detention. For most of these cases, court websites publish only court orders and dockets describing other filings. The initial petitions are available only through in-person visits to federal courthouses across the country. Habeas Dockets, a project of the nonprofit Immigration Justice Transparency Initiative, coordinates a nationwide network of volunteers to gather these petitions and make them available online.

KFF Health News and AP analyzed the dockets of roughly 33,000 cases filed by detainees from Jan. 20, 2025, through March 2026. The vast majority of cases had only basic procedural information, like dates of court filings and rulings. Only about 4,400 included the original petitions.

We also gathered a few dozen case files from courthouses, lawyers, and the Massachusetts federal district court website, which posts most petitions under a unique standing order.

We ran keyword and semantic searches of court records, including petitions, motions, and orders, for terms and phrases potentially related to medical neglect, such as surgery, medications, inadequate medical care, and treatment for chronic conditions such as diabetes and high blood pressure.

We found about 500 cases potentially alleging medical neglect. At least two reporters reviewed each case manually, yielding more than 300 cases containing specific allegations in sworn filings of delayed, denied, or deficient healthcare.

To be conservative, we excluded dozens of cases that alleged inadequate medical care but lacked specifics, for example a petitioner writing, “I have been sick and don’t get proper treatment,” or a judge noting a petitioner “complains that ICE is ignoring his medical problems.” We also excluded cases in which petitioners claimed only that they were denied special diets, exercise, or other accommodations that they said were key to managing their health conditions, such as a petitioner writing, “I suffer from Parkinson’s and cannot properly exercise,” or claiming that the food provided was unfit for a person with diabetes.

The cases we analyzed were neither randomly selected nor representative of immigration habeas filings nationwide. The claims were not independently verified. Many filings are not publicly available, and not all detainees raise medical concerns in court, so our account of cases represents a limited window into the landscape of claims, rather than a comprehensive picture.

Associated Press journalists Garance Burke, Valerie Gonzalez, and Tim Sullivan as well as KFF Health News correspondent Kate Wells contributed to this report.

This report is a collaboration between The Associated Press and KFF Health News.

This <a target="_blank" href="https://kffhealthnews.org/courts/ice-immigration-detention-medical-care-neglect-court-records-ap-investigation/">article</a> first appeared on <a target="_blank" href="https://kffhealthnews.org">KFF Health News</a> and is republished here under a <a target="_blank" href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="https://kffhealthnews.org/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150" style="width:1em;height:1em;margin-left:10px;">

<img id="republication-tracker-tool-source" src="https://kffhealthnews.org/?republication-pixel=true&post=2243229&ga4=G-J74WWTKFM0" style="width:1px;height:1px;">

from KFF Health News https://ift.tt/VLKljta

(Candice Evers for WPLN and KFF Health News)

Jill Woodrow reached a tipping point as a caregiver when her mom began struggling to communicate information about her latest doctor appointments.

Woodrow’s mother, a uterine cancer survivor, was seeing specialists to get to the bottom of several new, concerning symptoms. “When she would try to tell us about what happened or what the conversation was, she couldn’t remember,” Woodrow said.

So Woodrow, a school therapist, started taking her mom to medical appointments. Woodrow was able to ask doctors questions and explain their answers. But it was difficult to juggle her mom’s medical care while working, raising three daughters, and coordinating with her husband’s work schedule.

“I was having to leave work early, take sick time, personal time,” she said. “All of a sudden, my best friend said to me, ‘Jill, have you ever thought about taking FMLA?’ And honestly, I never did.”

FMLA refers to leave protected by the Family and Medical Leave Act, a federal law that guarantees employees up to 12 weeks of unpaid leave per year for their own serious health condition or to care for a parent, spouse, or child with a serious medical condition.

During eight weeks away from work, Woodrow helped with her mom’s medical care, cooked meals, and helped with housework. Her mom was later diagnosed with breast cancer and died in 2023.

“Taking FMLA really helped me focus on my family and my mom, and it was honestly the best thing that I could have ever done,” she said. “I have no regrets.”

But navigating the intricacies — logistical and emotional — of this federal policy can be challenging. Here’s what to know.

1. Read the fine print.

When FMLA was passed in 1993, it was groundbreaking, said Jocelyn Frye, president of the National Partnership for Women & Families. Before then, there were no federal protections for employees who needed to take time off for medical reasons.

Roughly 60% of workers in the U.S. qualify to take FMLA, according to the Department of Labor. To be eligible, people must have worked for a company with 50 or more employees for at least a year. Within that time, employees must have worked at least 1,250 hours, which translates to working full-time for about seven months.

Keep in mind, FMLA applies only to caregiving if your child, spouse, or parent is facing a “serious medical condition,” like inpatient care or continuing treatment. If you need to take time from work to care for someone with a short-term illness or routine medical care, you will likely need to use sick leave or some other kind of paid time off. And FMLA generally does not apply to caring for in-laws, siblings, or close friends.

2. Getting paid on FMLA is possible — but far from guaranteed.

The federal law requires employers only to provide unpaid leave, which limits how many people consider FMLA. According to the Department of Labor, two-thirds of eligible employees said they wouldn’t take FMLA because they could not afford to go without pay.

However, some people can still get a paycheck while taking FMLA. Thirteen states and the District of Columbia now require employers to provide paid family leave programs. Alternatively, you can apply another form of paid time off, like paid vacation or sick leave, to the time you take away from work. This is called concurrent leave. Some employers require employees to apply any available leave they have during the time they’re taking FMLA, which in practice ensures that employees do not take more than the protected 12 weeks of leave within a year.

So why use FMLA instead of just taking PTO or stringing together sick days? Under the federal requirements, FMLA protects an employee’s job and healthcare, which is not the case for other kinds of leave.

3. Communicating clearly about leave with your employer is key.

In a 2018 survey conducted by the Department of Labor, one-third of FMLA-eligible employees shared that they avoided taking leave because they feared losing their job or being treated differently at work, or because they considered their work too important.

Woodrow had to navigate her own hesitation. “I have a lot of students on my caseload, and I felt so guilty about leaving them,” she said.

But FMLA advocate Frye said employees should remember that FMLA exists to help them “take the time that they need to support their families — and not feel like they have to pretend like that’s not a natural part of life. Because it is.”

Frye suggests employees be proactive when approaching their manager about planning a leave. “I’d say, ‘I want to work with you to make this work for everybody,’” she said. In that conversation, employees could also offer to support their manager or other co-workers when those colleagues face a caregiving need in the future. Doing so could help shift a workplace culture to be more accepting of caregiving realities and FMLA leave over time, Frye added.

People and Policy

The Family and Medical Leave Act has had no major updates since it was passed in 1993, although there have been modifications to the leave options available to military service members and their families. A recent survey from the Pew Research Center found that 69% of Americans support the federal government requiring employers to provide paid family leave for caregiving for an aging family member.

Emily Siner at Nashville Public Radio contributed to this report.

HealthQ is a health series from reporters Cara Anthony and Blake Farmer, approachable guides to an unapproachable healthcare system. It’s a collaboration between Nashville Public Radio and KFF Health News.

This <a target="_blank" href="https://kffhealthnews.org/news/healthq-fmla-caregiving-family-leave/">article</a> first appeared on <a target="_blank" href="https://kffhealthnews.org">KFF Health News</a> and is republished here under a <a target="_blank" href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="https://kffhealthnews.org/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150" style="width:1em;height:1em;margin-left:10px;">

<img id="republication-tracker-tool-source" src="https://kffhealthnews.org/?republication-pixel=true&post=2244641&ga4=G-J74WWTKFM0" style="width:1px;height:1px;">

from KFF Health News https://ift.tt/oaJryR9

Giant Stone Urns Hint at the Death Rites of a Lost People in Laos

Thousands of mysterious containers lie scattered across northern Laos. These “death jars” may have provided a form of communal interment, archaeologists reported.

from NYT > Health https://ift.tt/yGiYbak

Baffling. Frustrating. Frightening. What It’s Like To Be Sued Over Medical Debt.

When Christine Wood received a $12,000 bill from Bristol Hospital, she thought it must be a mistake. It was more than she and her husband made in a month combined.

“I’m freaking out,” said Wood, who lives in a 1,700-square-foot home in Terryville, a village just outside Bristol, Connecticut. “I don’t understand it.”

Wood, 52, had weight loss surgery at Bristol Hospital in 2022, hoping it would help with her sleep apnea and the pain in her knees and back. Before scheduling the procedure, she checked with her insurer, she said, and was told the surgery would cost $5,000 out-of-pocket. She paid in advance.

More than six months later, Bristol sent Wood another bill that pushed the cost of her surgery to more than $17,000. Wood said she tried to dispute the charge. The hospital sued her.

“That’s ridiculous. I was told so many times by Aetna: ‘$5,000 out-of-pocket,’” Wood said. “I never would have had the surgery had I known it was going to cost almost 20 grand.”

Wood is among more than three dozen Connecticut patients the Connecticut Mirror and KFF Health News interviewed over the past year who were sued by their hospital or physician over unpaid bills.

The patients include teachers, small-business owners, a postal worker, a retired nursing home aide, a nurse, and a hotel bellhop. Most had jobs and health insurance. Nearly all said they wanted to pay what they owed.

Patients taken to court described baffling bills, confusing health plan rules, and frustrating and fruitless telephone calls to hospital billing offices and health insurers’ customer-service lines. Even when they tried to resolve their outstanding bills, many said they couldn’t get answers.

Bristol Hospital is part of Bristol Health, one of Connecticut’s most financially strained health systems. (Shahrzad Rasekh/CT Mirror)

Their experiences encapsulate breakdowns in the healthcare system that trap patients in debt. Health insurance didn’t cover care for reasons they couldn’t understand. Several patients did not qualify for financial assistance from providers, despite modest incomes. If they committed to pay, patients were hit with liens on their homes or interest payments and court fees that piled new debt onto their medical bills.

The industry’s key players blame one another for a broken system. Providers say insurers’ high-deductible plans saddle patients with massive bills even when they have coverage. Insurers say hospitals raise prices at rates that outpace inflation.

Meanwhile, patients are stuck with the fallout. In 2022, about 4 in 10 adults in the U.S. reported carrying medical or dental debt.

“It’s bad enough that I have bad health and have to pay mountains of medical bills,” said Samantha Mantiera, whom Danbury Hospital sued in 2024 over $10,000 she said she was erroneously charged. “Then to constantly be dealing with incorrect bills and then a lawsuit on top of it took me over the top.”

Mantiera said she spent months trying to explain to the hospital and then a collection agency that her insurance statements indicated she owed just $260. She was sued anyway.

After Mantiera contested the lawsuit, Danbury Hospital withdrew it, court records show.

Mantiera said she and her husband now travel up to an hour from their Brookfield, Connecticut, home to avoid hospitals owned by Danbury’s parent company, now called Northwell Health.

Kathy Holt, who leads the state Office of the Healthcare Advocate, said that in the past several decades healthcare has only gotten harder for patients to navigate. The agency fields thousands of calls every year from residents looking for help with medical billing questions.

“I’ve talked to too many people who have just given up,” Holt said. “The system has been made so hard for them, and I feel like it’s deliberate.”

‘They Would Not Talk to Me’

Debt collection lawsuits against patients have declined in Connecticut since 2019, a CT Mirror-KFF Health News analysis of state court records found. And court records show most Connecticut hospital systems have stopped suing patients, including the state’s two largest systems, Yale New Haven Health and Hartford HealthCare.

Most hospitals stopped suing patients during the covid-19 pandemic as they reevaluated their collection practices, said Sarah Ginnetti, chief revenue cycle officer at UConn Health. The system ceased lawsuits in 2022, records show.

“In some of those circumstances, it just felt misaligned with our mission as an organization,” Ginnetti said. “For the small handful of cases that we might gain some type of legal victory, we really didn’t feel as though that would be our best path forward.”

Yale New Haven Health and Hartford HealthCare would not discuss why they stopped suing patients, instead issuing statements about their financial assistance programs.

Scores of medical providers — including physician groups, dentists, and hospitals — have kept on suing, data shows. The CT Mirror-KFF Health News analysis found more than 1,500 healthcare-related debt cases filed in Connecticut courts in 2024.

This included lawsuits by Bristol Health, an independent local health system that includes Bristol Hospital, and Nuvance Health, a chain of seven hospitals recently acquired by Northwell Health, a multibillion-dollar system based in New York.

Nuvance hospitals filed over 4,000 collection lawsuits from 2019 to 2024, records show. Over the five years, the health system accounted for more than a quarter of the roughly 16,300 medical debt collection lawsuits against patients identified in state court records.

Hospital officials and other medical providers say they try to work with patients who have trouble paying their bills. Nikki Schulz, chief revenue officer for Northwell’s Connecticut hospitals, said in a statement that years ago the system “eased” its collection practices, leading to a “precipitous decline” in medical debt referred to collections.

“We fundamentally retooled our approach to align with industry best practices,” Schulz said. Records show the health system sued about 200 patients in 2024, down from 2,200 in 2019.

Healthcare executives also say they have a responsibility to try to collect.

“I don’t have a choice,” said Bristol Hospital CEO Kurt Barwis. “What we’re trying to do is sustain a mission of taking care of this community.”

This is a stacked bar chart that shows total hospital lawsuits declining from roughly 5,000 cases in 2019 to fewer than 500 in 2024.

Bristol Health is one of Connecticut’s most financially strained systems, and executives are currently in talks with the administration of Democratic Gov. Ned Lamont about an acquisition by state-owned UConn Health. The proposed deal is, in part, an effort to keep the hospital afloat.

Barwis said the hospital has taken steps to help patients with unexpected bills, including enlisting financial counselors to reach out to patients before elective procedures to discuss cost and financial assistance.

But Wood, who was sued by Bristol, said no one from the hospital talked to her before her surgery. When she called the hospital after receiving the $12,000 bill, she said she was told there was nothing they could do because her insurance had denied the claim.

“They would not talk to me about it,” Wood said. “They wanted their money.”

Bristol spokesperson Albert Peguero also blamed Wood’s insurer and said the hospital worked with Wood as she went through numerous insurance appeals with Aetna.

Wood didn’t fare any better with Aetna. It turned out that her health plan covered only $15,000 worth of bariatric surgery, meaning she was responsible for any bills that exceeded that.

Aetna spokesperson Shelly Bandit said Wood had been notified of this provision, though Wood disputes this.

The back-and-forth with the hospital and the insurer enraged Wood. But after she was sued, she concluded she had no more options. She settled with Bristol, agreeing to pay the full balance on a payment plan of $150 a month, court records show. Under the agreement, it would take Wood almost seven years to pay off the debt.

Last year, Wood faced additional financial challenges after her mother died and her husband lost his job and was unemployed for six months.

Wood said she’s regained about a third of the 100 pounds she lost after her surgery because of the stress. Some months she pays Bristol less than $150. In January, the hospital placed a lien on her home.

“We don’t have savings. We don’t have the extra money. We’re living check by check,” Wood said. “We’re working-class people trying to make a living, trying to do the right thing. And we always get screwed.”

‘I Don’t Have Hours on End’

It’s difficult to know how many medical debt lawsuits arise from disputed bills. But most U.S. adults with healthcare debt say they’ve received a bill in the past five years that they thought contained an error, according to a national survey.

The prevalence of disputed medical bills is one reason many advocates for patients say hospitals and other healthcare providers shouldn’t sue people they treat.

“Understanding insurance to begin with and then navigating denials or bills that are not plainly understood leaves patients stuck in an opaque system where they have the least leverage and power,” said Eva Stahl, a vice president of Undue Medical Debt, a nonprofit that has worked with states to buy and retire debt — including for more than 150,000 Connecticut residents.

“Patients understandably are left with questions and confusion,” Stahl said.

Last year, a judge dismissed one of Danbury Hospital’s lawsuits against a patient over a $64,000 unpaid bill, citing the hospital’s “failure to prosecute with reasonable diligence,” according to court records. (Shahrzad Rasekh/CT Mirror)

Timothy Bigham, who owns a construction company and was sued in 2023 by Danbury Hospital, said he never understood why he was billed more than $64,000 after he was hospitalized following a 2019 heart attack.

Bigham, who lives in Danbury, Connecticut, said he was insured at the time. But soon after he got home, Bigham began getting regular calls from the hospital. He was told his insurer wasn’t paying the bill because he refused to “release medical records,” he recalled.

“I had insurance when I had the heart attack, but it’s my job to get the insurance company to pay?” Bigham said. “I’m self-employed. I work in construction. I don’t have hours on end to sit on the phone trying to talk to somebody at an insurance company.”

Bigham said he ultimately “stopped dealing with it” because he didn’t know what else to do.

Then, in 2023, Danbury Hospital sued him. A judge dismissed the case in 2025, citing the hospital’s “failure to prosecute with reasonable diligence,” according to court records. But by then, the alleged debt had devastated Bigham’s credit score, tanking it by over 100 points, he said.

Northwell’s Schulz declined to comment on any specific patient cases, citing privacy laws.

Connecticut passed a law in 2024 barring medical debt from consumer credit reports.

A handful of states have tried to protect patients from lawsuits through measures including limiting when hospitals can pursue legal action. Illinois, for example, prohibits lawsuits against uninsured patients who prove they can’t afford their unpaid bills. Nevada, New York, North Carolina, Maryland, and Virginia prohibit liens and foreclosures for medical debt.

Dominique Jean Pierre was sued by Norwalk Hospital for over $20,000 after being hospitalized. (Joe Buglewicz for KFF Health News)

‘It Was a Nightmare’

Dominique Jean Pierre was equally surprised by the $20,000 bill he got after he was hospitalized at Norwalk Hospital with a urinary tract infection in July 2020.

Jean Pierre, 66, had worked for nearly two decades as a bellhop at a Hilton hotel in Stamford owned and operated by Atrium Hospitality, a Georgia-based company. When he got sick, the hotel was temporarily closed because of covid lockdowns.

What Jean Pierre didn’t realize, he said, was that the hotel had also cut off employee health benefits. He said he was told by the hospital that he’d be responsible for the bill.

“It was a nightmare,” he said.

Jean Pierre said he begged his manager for help but was told there was nothing the company could do. Atrium Hospitality did not respond to requests for comment.

Two years after Jean Pierre’s hospitalization, Norwalk Hospital sued him for more than $20,000, court records show.

Jean Pierre said he tried twice to apply for financial assistance, but the hospital told him he and his wife made too much to qualify, even though his medical bills totaled almost a quarter of their annual income of about $87,000.

With nowhere to turn, Jean Pierre settled with Norwalk Hospital, now part of the Northwell system, in 2025, agreeing to pay the full bill in $100 monthly installments, records show. At that rate, he will be paying off the debt until 2042.

After the settlement, he said, the judge encouraged him to reach out to elected officials to try to get the debt canceled. Jean Pierre was exhausted.

“He says to me, ‘You have to go to your senators. Go to the governor.’ I said, ‘That’s too much. [I’m just going to] let it go.’”

Jean Pierre has left the Hilton and now works as a personal care attendant, as does his wife. But he said it still nags him that businesses and healthcare providers received millions of dollars in government aid during the pandemic, while he was left with $20,000 in medical debt.

“They gave money for the hotel. They gave money for the hospital. They gave money for a lot of stuff,” he said. “But we don’t see none.”

Jean Pierre settled the lawsuit that Norwalk Hospital brought against him, agreeing to pay his bill in $100 monthly installments, records show. At that rate, the debt will be paid off in 2042. (Joe Buglewicz for KFF Health News)

‘I’m Not Trying To Run Away’

Other patients said they felt trapped, even if they tried to do the right thing.

Deneen Brown, who runs a small daycare out of her home in Norwalk, was sued by Norwalk Hospital in 2024 for $7,200 over bills she allegedly incurred “on or about 2019 and 2020,” according to the lawsuit.

Brown said she was stunned by the lawsuit, as she believed she’d had health insurance at the time. But as a small-business owner who took pride in maintaining good credit and staying on top of her finances, she said she committed to taking care of it.

“I’m not trying to run away from something that may be my responsibility,” Brown said. “If you say I owe it, I’m going to figure it out, and I’m going to pay it.”

In January 2025, she agreed to a nearly 13-year payment plan of $50 a month, court records show. Often she pays more, she said.

The following month, the hospital placed a lien on her home. Brown said she never realized the hospital would continue to penalize her, even after she agreed to a payment plan.

“Had I known that, I would have never settled,” she said.

Norwalk Hospital in Norwalk, Connecticut, and other medical providers owned by Nuvance Health, now known as Northwell Health, filed over 4,000 debt collection lawsuits from 2019 to 2024, records show — accounting for more than a quarter of such suits against patients identified in state court records during that period. (Shahrzad Rasekh/CT Mirror)

This article was produced in partnership with The Connecticut Mirror, a statewide nonprofit newsroom that covers public policy and politics.

This <a target="_blank" href="https://kffhealthnews.org/health-care-costs/connecticut-hospitals-medical-debt-patient-lawsuits-frustration/">article</a> first appeared on <a target="_blank" href="https://kffhealthnews.org">KFF Health News</a> and is republished here under a <a target="_blank" href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="https://kffhealthnews.org/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150" style="width:1em;height:1em;margin-left:10px;">

<img id="republication-tracker-tool-source" src="https://kffhealthnews.org/?republication-pixel=true&post=2244633&ga4=G-J74WWTKFM0" style="width:1px;height:1px;">

from KFF Health News https://ift.tt/5wV4OJB

Health and Fitness Tips

How Gold Is Driving the Spread of Ebola

‘We Live With Fear’: In Congo, Doctors Face Ebola With Little Protection

In a First, Scientists Precisely Edit Human Embryo Genes

Bernard Roizman, Virologist Who Demystified Herpes, Dies at 96

RFK Jr. Seeks To Peek at Americans’ Medical Records for Clues on Autism and Vaccines

An Uncertain Path for Americans Exposed to Ebola

Trump’s Medicaid Work Rules Force States To Scrap Plans and Rework Systems

Only the Right Tests Can Stop This Ebola Outbreak. Congo Has Hardly Any.

Festering Infections to Untreated Cancer: ICE Detainees Describe Medical Neglect Across US

Focused on Work, Needed at Home: A Federal Caregiving Policy Might Help

Giant Stone Urns Hint at the Death Rites of a Lost People in Laos

Baffling. Frustrating. Frightening. What It’s Like To Be Sued Over Medical Debt.

Health

Categories

How Gold Is Driving the Spread of Ebola

Search This Blog

Labels

Popular Posts

Pages - Menu

About