“I call it the unaffordable care act,” he said. He reprised the line in his address, blaming “the crushing cost of health care” on Obamacare.

Trump’s words also play off an ongoing congressional debate that began late last year with the expiration of the enhanced tax subsidies that had lowered the cost of ACA insurance for millions of Americans — and thrust the issue of ACA-related costs back to center stage.

Without those enhanced subsidies, the amount people pay toward monthly Obamacare premiums doubled, on average. The number of people enrolled in ACA coverage for this year has dropped by more than a million, and experts say more people could abandon coverage once premiums come due. Democrats are using this development to crank up the heat on Republicans ahead of the November elections and steer the conversation on the affordability issue.

Republicans fault the law itself for driving up these costs. For instance, Rep. Mike Lawler (R-N.Y.) that premiums “skyrocketed across the country since it took effect.”

Critics routinely point to several provisions within the ACA as the culprits — among them, essential health benefits, or EHBs. Under the law, Obamacare plans must cover certain essential services, including emergency care, hospitalization, maternity, and prescription drugs, without annual or lifetime dollar limits. But connecting EHBs to the premium increases felt by consumers is not straightforward.

Here’s a primer on key issues involved.

Checking the Numbers

It’s clear that Obamacare premiums have increased.

An analysis by the right-leaning Paragon Health Institute shows that the average premium for a 50-year-old with Obamacare since 2014. The average premium for employer-based plans grew 68% during that same time.

Paragon’s president, , told ºÚÁϳԹÏÍø News that this shows the ACA has made health care on the individual market more expensive.

Still, the comparison overlooks a couple of points. Pre-ACA, employer plans generally offered more generous coverage than individual market plans, so work-based coverage cost more. And individual plans were cheaper in part because they could bar applicants with health problems. Beginning in 2014, the ACA forced individual policies to look more like employer plans, covering a broader range of benefits and accepting both healthy and unhealthy applicants. As a result, premiums rose that first year. In the years that followed, ACA plans often experienced faster growth in premiums than job-based plans. Some policy analysts say this isn’t surprising because ACA plans started at a lower dollar base and had more room to rise.

States that saw less dramatic post-ACA premium increases, such as Massachusetts and New York, already mandated that individual-market plans provide EHB-like coverage, noted , a senior research fellow at the Heritage Foundation, a conservative think tank. These states also had higher premiums due to that and other provisions, such as not allowing plans to exclude people with preexisting conditions.

“It was a combination of things,” he said.

Blase acknowledges that the two types of insurance started at different price points. But he said the percentage change over time shows that the ACA faces “underlying inflationary pressures” — including the now-expired, more generous, covid pandemic-era subsidies — that affect its policyholders more so than employer plans.

Aside from that point, however, were on the rise even before the ACA took effect.

An analysis by Jonathan Gruber at the Massachusetts Institute of Technology found that between 2008 and 2010, premiums grew by at least 10% a year and were highly variable across states and insurers.

Consumers’ Other Costs

Over time, ACA deductibles — the amounts policyholders must satisfy in a given year before insurance kicks in — have seen large increases, with “bronze” plans now averaging $7,476 annually, up from $5,113 in 2014, according to KFF, a health information nonprofit that includes ºÚÁϳԹÏÍø News. Bronze plans tend to have lower premiums than the other metal-level categories — “silver,” “gold,” and “platinum” — in part because of their higher deductibles.

The Trump administration is doubling down on high-deductible plans as part of its emphasis on affordability, making it easier this year for people age 30 and up to qualify for what are called “catastrophic plans.” These come with even larger deductibles than bronze plans.

The administration pitched a broad regulatory plan for 2027 to cement those changes, saying it was designed to lower premiums and expand choices. It would raise next year’s deductibles for catastrophic plans to $15,600 a year for an individual or around $30,000 for a family. It isn’t clear how popular such plans would be. Detailed enrollment figures for this year are not yet available, but estimates indicate only about 54,000 people chose catastrophic plans in 2025, and consumers can’t use federal subsidies to purchase them.

Before this Trump proposal, though, recent data showed that the rising rate of ACA plan deductibles had not outpaced deductibles for employer plans.

The weighted average — a calculation that gives more weight to ACA plans with the most people enrolled — shows in annual deductible amounts since 2014, from $1,881 to $2,912. During that same period, deductibles in plans offered by 59%, from $1,186 to $1,886, according to KFF’s annual employer survey.

Essential What?

To be clear, the ACA’s catastrophic and bronze plans must cover essential health benefits, as do all Obamacare plans. These EHBs fall into 10 categories of medical services and were included in the ACA to ensure individual policies meet a minimum standard of coverage and are comparable to employer-based health insurance.

Preventive services, such as annual checkups, vaccines, and certain cancer screenings, must be covered at no additional cost to patients. All plans must completely cover the cost of specific vaccines, including the annual flu shot. And insurers cannot refuse to pay for emergency care provided at an out-of-network hospital. Other EHBs are subject to out-of-pocket costs, such as copays at the doctor’s office or pharmacy counter.

In some ways, EHBs save money because they’ve increased access to preventive care, said , a professor of health policy and management at Johns Hopkins University’s Bloomberg School of Public Health.

Services such as cancer screenings and lab tests can lead to earlier detection of serious conditions, when treatment is less costly, and positive outcomes are more likely.

“If you look down the list of essential health benefits, I think most people would reach the judgment that those are health care services that people should have access to,” said Larry Levitt, KFF’s executive vice president for health policy.

Joseph Antos, a senior fellow emeritus at the conservative American Enterprise Institute, said ACA requirements — such as requiring insurers to accept anyone, regardless of their health status, and limiting insurers’ ability to charge older people more for coverage — also have played roles in boosting premiums.

“Really, it’s practically impossible to tease any one thing out,” Antos said.

States do have latitude to add benefits that fall under the EHB umbrella. For example, bariatric surgery is covered as an EHB in , but not in . Pennsylvania’s EHBs also don’t include hearing aids, but do.

But the Trump administration’s 2027 regulatory proposal : When “states enact benefit mandates, plan premiums must generally increase to account for the additional coverage,” it reads. It also signals that added benefits can raise consumer costs and proposes that states be required to use their own funds to offset some of those costs.

Paragon’s Blase echoed this take in his bottom line. Mandating that plans cover EHBs without annual or lifetime caps, as required under the ACA law, encourages clinicians to overbill and overprescribe, he said. That drives up premiums and means a bigger check for insurers and medical providers at the expense of taxpayers. “You just turn patients into money factories,” he said.

, a senior research fellow at Georgetown University’s Center on Health Insurance Reforms, disagrees, saying that whatever EHBs’ role, they aren’t to blame for the year-over-year premium hikes.

People aren’t consuming medical care at exponential rates just because certain services are now covered: “Me not paying anything for that colonoscopy doesn’t make me want to get more of them,” she said.

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A woman with multiple sclerosis wanted to be able to walk up the stairs at home without losing her balance. Her doctor prescribed medicine that helped, but then approval from her insurance plan for the drug expired.

“Why do I need a prior authorization for something that I am already prior-authorized to take? If my doctor says that they want me on a medication, why does my insurance have another say in that?”

— Jaclyn Mayo, Lunenburg, Massachusetts

Jaclyn Mayo has multiple sclerosis, an autoimmune disease that damages the nervous system and can mess with coordination and balance. To get steadier on her feet, Mayo had been trying to lose weight: A lighter body puts less stress on the joints and leads to greater flexibility.

After Mayo didn’t have much luck with diet and exercise, her physician prescribed Zepbound, a GLP-1 weight loss medication that suppresses appetite.

“It was really helping me,” she said. “I could go up and down stairs and not feel like I was going to fall.”

As a happy bonus, the GLP-1 seemed to ease other MS symptoms for Mayo: She started sleeping through the night, and the frequent numbness in her hands went away.

After being on Zepbound for seven months, she fell into an insurance pitfall: prior authorization.

In August, her pharmacy wouldn’t refill her prescription, and it wasn’t clear why.

She called her pharmacist, then her doctor’s office, the pharmacist again, then her insurance company. After speaking with the insurance company’s pharmacy benefit manager — a third-party company that oversees prescription drug plans for insurers — Mayo figured out that the advance approval her insurer had granted for the drug, known as prior authorization, had expired.

Insurers require prior authorizations for certain treatments or tests, especially costly ones. When they do, your doctor has to make the preauthorization request to your insurance company, explaining why you need the treatment. Next, the insurer decides if it agrees that the care is medically necessary and if it will pay for it.

Mayo had been taking the weight loss medicine for less than a year and didn’t understand why a new prior authorization was needed so soon. She said she never got a letter or email notifying her that the clock had run out on her first prior authorization. As someone with a chronic illness, Mayo said, she keeps close track of her medical paperwork. She feels like she did everything right, which, she said, made the situation especially infuriating.

Her doctor submitted the necessary paperwork then found out the new approval would take seven to 10 business days.

At this point, Mayo had been off her medication for two weeks. Her sleep was getting worse, and the tingling numbness in her hands returned. So she asked that her prior authorization be expedited, only to learn that her doctor, not Mayo, would need to make the request for an urgent review.

“That red tape was completely avoidable,” she said. “And all that they needed to do was communicate clearly to me. And then I could have continued my medication without delays. But they didn’t.”

Why Insurers Want Prior Authorization

Doctors are often frustrated by the prior authorization process, but insurers argue it helps keep costs down.

AHIP, the insurer trade group formerly known as America’s Health Insurance Plans, declined an interview request. But in an emailed statement, it said that prior authorizations are an important safeguard that helps ensure patients receive safe, evidence-based care and keeps coverage affordable.

In a , the American Medical Association, which represents physicians, said the way health plans use prior authorizations is “opaque and overly complex,” creating delays in care and greater administrative burden.

Patients are also frustrated. A found that 1 in 3 insured adults call prior authorizations a “major burden” to accessing health care.

Mayo hit preauthorization hurdles likely because her physician prescribed a GLP-1, an . The more costly the treatment, the greater the scrutiny, said of the University of Pittsburgh, who studies health politics and administrative burdens within the insurance system.

Issues with prior authorizations are common. Policymakers could standardize how insurance companies evaluate prior authorization requests to prevent more Americans from experiencing medical disruptions, Yaver said.

“It’s a solvable problem, if we have the will and the political conditions are ripe. I don’t think that they are at this particular moment,” she said.

Here’s what to know about getting prior authorization requests approved in a timely manner.

1. Find out when your prior authorization expires.

Individual insurance companies, and even the individual plans within those companies, often have different policies for prior authorizations.

“As you can imagine, that becomes an absolute nightmare,” said physician David Aizuss, chair of the AMA’s board of trustees.

While expensive treatments are more likely to be targeted for prior authorization review, Aizuss said it also happens for low-cost generic drugs.

To figure out how long your prior authorization lasts, reach out to customer service at your insurance company or pharmacy benefit manager, whichever handles your plan’s prior authorizations.

2. Don’t procrastinate.

Getting a prior authorization isn’t always quick, so build in time for things to go wrong.

It took Mayo nearly three weeks to sort out the prior authorization issue for her GLP-1 prescription. She made the initial refill request about a week before her medication was set to run out and ended up without the drug for over two weeks.

3. Ask your doctor to request an expedited review.

As you wait for your prior authorization to go through, your doctor might not know how much medication you have left, or that your health may be declining. You can have your doctor request an expedited review. Though, as Mayo found, insurance companies and PBMs won’t always volunteer that as an option.

When an expedited review is appropriate is up for interpretation, said , director of the Program on Patient and Consumer Protections at KFF, a health information nonprofit that includes ºÚÁϳԹÏÍø News.

“No one knows the specifics of what urgent means,” she said.

require that urgent requests made by people with employer-based plans be decided within 72 hours. And, on Jan. 1, a took effect that creates a similar requirement for all Medicare Advantage, Medicaid, and Children’s Health Insurance Program plans. However, this rule doesn’t apply to medications.

4. Consider other treatment options.

When Mayo’s doctor first suggested that she try a GLP-1, approval for the specific medication was taking a long time. When it became clear the request would probably be denied, the doctor canceled that initial request and put in a prior authorization request for a different brand of GLP-1, Zepbound. It was approved.

Ask your doctor about treatment alternatives. Health plans have different formularies — lists of medicines that are routinely approved. It might be easier to switch medications than to fight to get your health plan to approve coverage.

But be aware that your insurance company might change your health plan’s drug formulary anytime and require you to get a new prior authorization.

5. Don’t be afraid to appeal.

Submit an appeal, even if you’re worried you’ll lose. Yaver said that, based on the research set to be published in , Coverage Denied: How Health Insurers Drive Inequality in the United States, people who appeal a prior authorization or claims denial win about half the time.

First figure out where to send your appeal. Usually, it’s an insurance company, but if the treatment you need is medication, it may be a PBM.

Include detailed records in your appeal.

If you’re trying to get approval for a specific medication, Yaver said, send documentation showing that you tried other medications or treatments that didn’t work. This helps make your case and can speed up the process.

“I actually just went through a prior authorization for my migraine drug,” Yaver said. “It actually went through very quickly.”

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When the doctor says you need a prescription or treatment, sometimes you need approval from your health insurance first. That’s called prior authorization. Without that sign-off, insurance won’t pay.

What triggers the need for prior authorization is not fully clear. It’s another “black box” part of the health care system.

You might think insurance companies mostly target expensive treatments or care approaches when a disagreement over effectiveness prompts a prior authorization review. Often that’s not the case. Some doctors complain they spend a lot of time filling out paperwork to try to secure approval for medicine or treatments that are routine.

In the meantime, patients can be left in pain, while their medical conditions worsen.

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Last year was a tough one for farmers. Amid such as corn and soybeans, for supplies like , as well as the Trump tariffs and the , many farms weren’t profitable last year.

And now, the enhanced Affordable Care Act subsidies that many Americans, including farmers, relied on to purchase health insurance are gone, having .

James Davis, 55, who grows cotton, soybeans, and corn in northern Louisiana, said he didn’t know how he and his wife would afford coverage. Their share of their insurance premium quadrupled for 2026, jumping to about $2,700 a month.

“You can’t afford it,” Davis said. “Bottom line. There’s nothing to discuss. You can’t afford it without the subsidies.”

More than a quarter of the agricultural workforce purchases health insurance through the individual marketplace, according to , a health information nonprofit that includes ºÚÁϳԹÏÍø News.

That 27% rate is much higher than the overall population’s — only .

Farmers are used to facing challenges such as unpredictable weather and fluctuating commodity prices. But the loss of the enhanced subsidies, coupled with challenging economic conditions, will make coverage unaffordable for many.

Without major intervention from Washington, farmers say they’ll have to choose between being uninsured or leaving the farm work behind for a job that offers health insurance.

A Gamble for Farmers

Farming is dangerous work. Agricultural workers spend much of their time outside and exposed to the elements. Many of their duties can lead to injury or illness. They drive and operate heavy machinery, work with toxic chemicals, and handle large animals.

The rate of work-related deaths for farmers is .

The financial toll of non-fatal farm injuries is also significant. from the University of Nebraska Medical Center found that the average cost of a farming injury was $10,878 in medical care and $4,735 in lost work.

It’s essential that farmers can purchase comprehensive insurance, said , a rural sociologist and associate professor of agricultural health and safety at Pennsylvania State University, where she studies the social and economic needs of farm households.

In a , Becot found that more than 20% of U.S. farm households had medical debt exceeding $1,000 and that more than half were not confident they could cover the costs of a major illness or injury.

“That shows you the level of vulnerability and concerns that farmers are facing,” she said.

Mental health is also a concern. as likely to die by suicide compared with the general population. Mental health hotlines that serve rural communities have an in calls.

These concerns around farmers’ , coupled with a , conjures memories of the farm crisis of the 1980s, said , a vice president at the industry group . During that decade, there was a raft of foreclosures, and .

“We’re really afraid of what’s going to happen,” Klein said.

Farmers can be reluctant to acknowledge that they rely on government-subsidized insurance, said Meghan Palmer, 43, who runs a dairy farm in northeastern Iowa with her husband, John, 45.

“We’re not handout-takers,” Palmer said.

More than 40% of dairy farmers lack health insurance — among all agricultural sectors.

But going uninsured is not an option for the Palmers.

During their first year of marriage, the couple recalled, they were uninsured and had to pay out-of-pocket for two unexpected health crises: Palmer had an appendectomy, and her husband needed stitches after getting kicked in the face by one of his cows.

“It was stupid of us,” Palmer said of the decision to forgo coverage.

But this year, the combined out-of-pocket monthly cost of their plans is increasing by more than 90%, to $368.18. Their total 2026 deductible is $7,200.

Palmer is a registered nurse who picks up shifts on an as-needed basis, allowing her the flexibility to prioritize her work on the farm. She’s now searching for a job with health benefits. But she worries a job that doesn’t allow her to keep up with the farm work will create a greater burden for her husband.

“John is working exhausted most of the time,” she said. “That’s when mistakes get made and you end up in the ER.”

Political Consequences

Even after the enhanced subsidies expired at the end of 2025, the Palmers estimate their income will still be low enough that they’ll qualify for some tax credits to purchase coverage.

However, under the GOP’s One Big Beautiful Bill Act, , so if the Palmers have a surprisingly profitable 2026, they’ll be forced to pay some, or even all, of that subsidy back at tax time.

A farmer’s income can vary drastically year to year, Becot said, partly because commodity prices can fluctuate rapidly.

Some farmers might deliberately choose to not expand their businesses, because too much profit might mean they lose access to health care subsidies.

Farmers who are insured through Medicaid have similar concerns, Becot said. But prioritizing health care affordability by suppressing operational growth can have long-term consequences for a farm’s success.

Palmer, in Iowa, and Davis, in Louisiana, are both upset that lawmakers aren’t more sensitive to the economic demands of farming and how those have coincided with rising health costs.

President Donald Trump recently pledged $12 billion in one-time to row crop farmers, but that’s not going to stop health care costs from ballooning.

Republicans are aware that health care affordability is a problem and have put forth proposals, said , a political scientist at the University of Northern Iowa. But most don’t support extending the enhanced ACA subsidies, because they don’t see them as a good solution to the problem of rising health care costs.

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Y ahora, los subsidios mejorados de la Ley de Cuidado de Salud a Bajo Precio (ACA, por sus siglas en inglés), en los que muchos estadounidenses —incluidos los agricultores— confiaban para comprar cobertura, desaparecieron luego de .

James Davis, de 55 años, cultiva algodón, soya y maíz en el norte de Louisiana. Dijo que no sabía cómo él y su esposa podrían pagar el seguro. Su parte de la prima mensual se cuadruplicó para 2026, alcanzando unos $2.700.

“No se puede pagar”, dijo Davis. “Así de simple. No hay nada que discutir. Sin los subsidios, no se puede pagar”.

Más de una cuarta parte de la fuerza laboral agrícola compra su seguro médico en el mercado individual, según .

Ese 27% es mucho más alto que el de la población general: solo el tiene cobertura fuera de los seguros de empleadores o programas públicos.

Los agricultores están acostumbrados a enfrentar desafíos como el clima impredecible y los precios variables de los productos. Pero la pérdida de los subsidios mejorados, sumada a las difíciles condiciones económicas, hará que para muchos resulte imposible pagar por cobertura médica.

Sin una intervención importante de Washington, los agricultores dicen que tendrán que elegir entre quedarse sin seguro o dejar el trabajo en el campo para conseguir un empleo que ofrezca cobertura de salud.

Un trabajo de alto riesgo

La agricultura es una actividad peligrosa. Los trabajadores del campo pasan gran parte del tiempo al aire libre. Muchas de sus tareas pueden causar lesiones o enfermedades. Operan maquinaria pesada, trabajan con químicos tóxicos y manipulan animales grandes.

La tasa de muertes relacionadas con el trabajo agrícola es que el promedio nacional.

El costo financiero de las lesiones no fatales también es significativo. del Centro Médico de la Universidad de Nebraska encontró que el costo promedio de una lesión agrícola es de $10.878 en atención médica y $4.735 en salarios perdidos.

Es fundamental que los agricultores puedan acceder a un seguro integral, dijo , socióloga rural y profesora asociada de salud y seguridad agrícola en la Universidad Estatal de Pennsylvania, donde estudia las necesidades sociales y económicas de los hogares agrícolas.

En un , Becot halló que más del 20% de los hogares agrícolas en Estados Unidos tenían deudas médicas mayores a $1.000 y que más de la mitad no confiaban en poder afrontar los costos de una enfermedad o lesión grave.

“Eso muestra el nivel de vulnerabilidad y preocupación que enfrentan los agricultores”, dijo.

La salud mental también es un motivo de alarma. Los agricultores tienen el de morir por suicidio que la población general. Las líneas de ayuda para la salud mental que atienden a comunidades rurales han visto un .

Estas preocupaciones por el de los agricultores, sumadas al , evocan recuerdos de la crisis agrícola de los años 80, dijo , vicepresidente del grupo de la industria . En esa década hubo una ola de ejecuciones hipotecarias y .

“Realmente tememos lo que pueda pasar”, dijo Klein.

Estar sin seguro no es una opción

Los agricultores pueden mostrarse renuentes a admitir que dependen de un seguro subsidiado por el gobierno, dijo Meghan Palmer, de 43 años, quien maneja una granja lechera en el noreste de Iowa junto con su esposo John, de 45.

“No somos de los que piden ayuda”, dijo Palmer.

Más del 40% de los productores lecheros no tiene seguro médico, uno de los entre todos los sectores agrícolas.

Pero quedarse sin seguro no es una opción para los Palmer.

Contaron que, en su primer año de casados, no tenían seguro y tuvieron que pagar de su bolsillo dos crisis de salud inesperadas: a Meghan le hicieron una apendicectomía y su esposo necesitó puntos después de que una vaca lo pateara en la cara.

“Fue una tontería de nuestra parte”, dijo Palmer sobre la decisión de no contratar cobertura médica.

Pero este año, el gasto mensual combinado de su bolsillo aumentará más del 90%, hasta $368.18. Su deducible total en 2026 será de $7.200.

La Granja Prairie Star ha estado en la familia de Palmer por tres generaciones. Ella espera que alguno de sus hijos quiera continuar con la operación, pero cada vez es más difícil que una granja sea rentable.

Palmer es enfermera registrada y trabaja turnos cuando la necesitan, lo que le da la flexibilidad de priorizar su trabajo en la granja. Ahora está buscando un empleo que le ofrezca seguro médico. Pero le preocupa que un trabajo que no le permita ocuparse de las labores del campo termine generándole más carga a su esposo.

“John trabaja agotado casi todo el tiempo”, dijo. “Y así es como se cometen errores y terminas en la sala de emergencias”.

Consecuencias políticas

Aunque los subsidios mejorados expiraron a finales de 2025, los Palmer calculan que su ingreso seguirá siendo lo suficientemente bajo como para que califiquen para algunos créditos fiscales que les permitan pagar la cobertura.

Sin embargo, bajo la ley propuesta por los republicanos, llamada One Big Beautiful Bill Act, . Así que si en 2026 su granja es inesperadamente rentable, tendrían que devolver parte —o incluso la totalidad— de esos subsidios al momento de hacer sus impuestos.

El ingreso de un agricultor puede variar drásticamente de un año a otro, explicó Becot, en parte porque los precios de los productos pueden fluctuar rápido.

Algunos agricultores podrían optar por no expandir su negocio deliberadamente, porque ganar demasiado podría significar perder el acceso a los subsidios de salud.

Los agricultores cubiertos por Medicaid tienen preocupaciones similares, agregó Becot. Pero priorizar la asequibilidad del seguro médico limitando el crecimiento de la operación puede tener consecuencias negativas a largo plazo para el éxito de la granja.

Palmer, en Iowa, y Davis, en Louisiana, están frustrados porque sienten que los legisladores no son suficientemente sensibles ante las exigencias económicas de la agricultura y cómo estas coinciden con el aumento en los costos de atención médica.

El presidente Donald Trump prometió recientemente $12.000 millones en únicos para productores de cultivos extensivos, pero eso no detendrá el aumento de los costos del seguro médico.

Los republicanos saben que la asequibilidad de la atención de salud es un problema y han presentado propuestas, dijo , politóloga de la Universidad del Norte de Iowa. Pero la mayoría no apoya la extensión de los subsidios mejorados de ACA porque no los considera una solución adecuada al problema del aumento en los costos.

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A closet cleanout might not seem a significant accomplishment. But as the people in this Sunday-night class can attest, getting rid of stuff is agonizing for those with .

People with the diagnosis accumulate an excessive volume of things such as household goods, craft supplies, even pets. In extreme cases, their homes become so crammed that moving between rooms is possible only via narrow pathways.

These unsafe conditions can also lead to strained relationships.

“I’ve had a few relatives and friends that have condemned me, and it doesn’t help,” said Bernadette, a Pennsylvania woman in her early 70s who has struggled with hoarding since retiring and no longer allows guests in her home.

People who hoard are often stigmatized as lazy or dirty. NPR, Spotlight PA, and ºÚÁϳԹÏÍø News agreed to use only the first names of people with hoarding disorder interviewed for this article because they fear personal and professional repercussions if their condition is made public.

As baby boomers age into the group most affected by hoarding disorder, the psychiatric condition is a growing public health concern. Effective treatments are scarce. And because hoarding can require expensive interventions that drain municipal resources, more funding and expertise is needed to support those with the diagnosis before the issue grows into a crisis.

For Bernadette, the 16-week course is helping her turn over a new leaf.

The program doubles as a support group and is provided through . The Westmoreland County, Pennsylvania, organization started offering the course at a local Masonic temple after founder Matt Williams realized the area lacked hoarding-specific mental health services.

Fight the Blight based on cognitive behavioral therapy to help participants build awareness of what fuels their hoarding. People learn to be more thoughtful about what they purchase and save, and they create strategies so that decluttering doesn’t become overwhelming.

Perhaps more importantly, attendees say they’ve formed a community knitted together through the shared experience of a psychiatric illness that comes with high rates of and .

“You get friendship,” said Sanford, a classmate of Bernadette’s.

After a lifetime of judgment, these friendships have become an integral part of the changes that might help participants eventually clear out the clutter.

Clutter Catches Up to Baby Boomers

Studies have estimated that hoarding disorder affects of the general population — a higher rate than schizophrenia.

The mental illness was previously considered a subtype of obsessive-compulsive disorder, but in 2013 it was given its in the Diagnostic and Statistical Manual of Mental Disorders, the DSM-5.

The biological and environmental factors that may drive hoarding are not well understood. Symptoms during the teenage years and tend to be more severe among older adults with the disorder. That’s partly because they have had more time to acquire things, said , a University of Miami psychology professor.

“All of a sudden you have to downsize this huge home with all the stuff and so it puts pressures on individuals,” she said. In Bernadette’s case, her clutter includes a collection of VHS tapes, and spices in her kitchen that she said date back to the Clinton administration.

But it’s more than just having decades to stockpile possessions; the urge to accumulate strengthens with age, according to , a psychiatry professor at the University of California-San Diego.

Researchers are working to discern why. Ayers and Timpano theorize that age-related cognitive changes — particularly in the frontal lobe, which regulates impulsivity and problem-solving — might exacerbate the disorder.

“It is the only mental health disorder, besides dementia, that increases in prevalence and severity with age,” Ayers said.

As the U.S. population ages, hoarding presents a growing public health concern: Some 1 in 5 U.S. residents are baby boomers, all of whom will be 65 or older .

This population shift will require the federal government to address hoarding disorder, among other age-related issues that it has not previously prioritized, according to a by the Democratic staff of the U.S. Senate Special Committee on Aging, chaired then by former Sen. Bob Casey (D-Pa.).

Health Hazards of Hoarding

Clutter creates physical risks. A cramped and disorderly home is especially dangerous for older adults because the risk of falling and breaking a bone . And having too many things in one space can be a .

Last year, the wrote to the Senate committee’s leadership that “hoarding conditions are among the most dangerous conditions the fire service can encounter.” The group also said that cluttered homes delay emergency care and increase the likelihood of a first responder being injured on a call.

The Bucks County Board of Commissioners in Pennsylvania told Casey that hoarding-related mold and insects can spread to adjacent households, endangering the health of neighbors.

Due to these safety concerns, it might be tempting for a family member or public health agency to quickly empty someone’s home in one fell swoop.

That can backfire, Timpano said, as it fails to address people’s underlying issues and can be traumatic.

“It can really disrupt the trust and make it even less likely that the individual is willing to seek help in the future,” she said.

It’s more effective, Timpano said, to help people build internal motivation to change and help them identify goals to manage their hoarding.

For example, at the Fight the Blight class, a woman named Diane told the group she wanted a cleaner home so she could invite people over and not feel embarrassed.

Sanford said he is learning to keep his documents and record collection more organized.

Bernadette wants to declutter her bedroom so she can start sleeping in it again. Also, she’s glad she cleared enough space on the first floor for her cat to play.

“Because now he’s got all this room,” she said, “he goes after his tail like a crazy person.”

Ultimately, the home of someone with hoarding disorder might always be a bit cluttered, and that’s OK. The goal of treatment is to make the space healthy and safe, Timpano said, not to earn Marie Kondo’s approval.

Lack of Treatment Leaves Few Options

A found that hoarding correlates with homelessness, and are more .

Housing advocates argue that under the Fair Housing Act, tenants with the diagnosis are entitled to reasonable accommodation. This might include allowing someone time to declutter a home and seek therapy before forcing them to leave their home.

But as outlined in the Senate aging committee’s report, a lack of resources limits efforts to carry out these accommodations.

Hoarding is difficult to treat. In a led by Ayers, the UCSD psychiatrist, researchers found that people coping with hoarding need to be highly motivated and often require substantial support to remain engaged with their therapy.

The challenge of sticking with a treatment plan is exacerbated by a shortage of clinicians with necessary expertise, said Janet Spinelli, the co-chair of Rhode Island’s .

Could Changes to Federal Policy Help?

Casey, the former Pennsylvania senator, advocated for more education and technical assistance for hoarding disorder.

In September, he the to develop training, assistance, and guidance for communities and clinicians. He also said the Centers for Medicare & Medicaid Services should explore ways to cover evidence-based treatments and services for hoarding.

This might include increased Medicare funding for mobile crisis services to go to people’s homes, which is one way to connect someone to therapy, Spinelli said.

Another strategy would involve allowing Medicaid and Medicare to reimburse community health workers who assist patients with light cleaning and organizing; that many who hoard struggle with categorization tasks.

Williams, of Fight the Blight, agrees that in addition to more mental health support, taxpayer-funded services are needed to help people address their clutter.

When someone in the group reaches a point of wanting to declutter their home, Fight the Blight helps them start the process of cleaning, removing, and organizing.

The service is free to those earning less than 150% of the federal poverty level. People making above that threshold can pay for assistance on a sliding scale; the cost varies also depending on the size of a property and severity of the hoarding.

Also, Spinelli thinks Medicaid and Medicare should fund more peer-support specialists for hoarding disorder. These mental health workers draw on their own life experiences to help people with similar diagnoses. For example, peer counselors could lead classes like Fight the Blight’s.

Bernadette and Sanford say courses like the one they enrolled in should be available all over the U.S.

To those just starting to address their own hoarding, Sanford advises patience and persistence.

“Even if it’s a little job here, a little job there,” he said, “that all adds up.”

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Now, a small but growing number of house cats have gotten sick from H5N1, the bird flu strain driving the current U.S. outbreak, after eating raw food or drinking unpasteurized milk. Some of those cats died.

The strain of bird flu currently circulating has to efficiently spread among people. And there have been no known cases of cat-to-human transmission during the current outbreak of H5N1.

Still, there’s , which are arguably , could bring home a disease from a midnight prowl.

“Companion animals, and especially cats, are 100% a public health risk in terms of the risk of zoonotic transmission to people,” said virologist , who studies disease progression in emerging viruses at the University of Saskatchewan’s .

This is because we snuggle with and sleep in bed with our cats. When we’re not looking, cats drink from our water glasses and walk on kitchen counters. So, cat owners should be aware of the ongoing spread of bird flu. “By reducing the risk to your cats, you reduce the risk to yourself,” Rasmussen said.

Rasmussen doesn’t think pet owners should be afraid their cats will give them bird flu but said taking precautions is good for pets, and for public health.

Signs of bird flu in cats include runny nose and discharge around the eyes, explained president-elect of the .

H5N1 also causes neurological problems like dizziness and seizures, which are symptoms of rabies, too. Rabies is almost always fatal, and it poses a threat to human health, so any animal suspected of having the viral disease must be euthanized. Bailey encourages people to ensure pets are up-to-date on their vaccinations.

Veterinarian , who specializes in infectious diseases in cats and dogs at the University of California-Davis School of Veterinary Medicine, said people should not assume it’s bird flu if their cat is sick — even if their animal spends time outdoors or eats a raw diet. Upper-respiratory illnesses are common in cats, while H5N1 is “still pretty rare.”

Sykes gives her indoor cat, Freckles, regular kibble exclusively. She told NPR and ºÚÁϳԹÏÍø News she has no concerns about Freckles getting H5N1 because the heating process of making dry or canned pet food kills viruses.

More Cases in Cats, More Risk to Humans

Some people feed their pets raw meat or unpasteurized milk because they think it’s a more nutritious or natural diet. The American Veterinary Medical Association’s website like salmonella and listeria, and now the .

By keeping pets healthy, veterinarians play an essential role in protecting humans from zoonotic diseases. The American Veterinary Medical Association says the risk of H5N1 spilling over from a pet to a person is “considered extremely low, but not zero.”

State and local public health agencies, including those in and , have issued similar warnings against raw food diets for pets.

Concerns for human health are partly why the FDA it is now requiring cat and dog food companies to update their safety plans to protect against bird flu.

This came after the Oregon Department of Agriculture discovered a cat that was had contracted H5N1 and died after consuming a frozen turkey product made by the raw pet food brand . It stated that “tests confirmed a genetic match between the virus in the raw and frozen pet food and the infected cat.”

Northwest Naturals voluntarily recalled that batch of its frozen turkey-based product. The company told ºÚÁϳԹÏÍø News and NPR that the recall involved “a small product run” and that it has concerns about the accuracy of the Oregon Agriculture Department’s testing.

Los Angeles County’s public health department said five cats from two households tested positive for bird flu after drinking unpasteurized raw milk from the Raw Farm dairy in California’s Central Valley.

Raw Farm its milk and cream after retail products tested positive for H5N1, but it , calling the concern “a political issue.”

Veterinarians also warn pet owners not to allow cats unsupervised time outside as there’s the risk of them getting H5N1 by interacting with other animals that might carry the disease.

“This is a very scary virus, given that it can infect so many different host species,” said , director of Cornell University’s Feline Health Center.

At least one instance of a cat infecting a person with bird flu occurred in 2016. As , a veterinarian in New York City caught the virus after having close contact with infected cats. The vet experienced mild symptoms and quickly recovered.

In that case, the strain of bird flu was H7N2, not the H5N1 that is now circulating in the U.S.

H7N2 is a very different type of virus, Sykes explained. But she said it shows that cat-to-human transmission of avian influenza is theoretically possible.

There isn’t a lot of research on transmission of bird flu from companion animals like cats or dogs to humans, though Rasmussen agreed it’s definitely a concern: The more infections you have in animals, “the more your luck is potentially going to run out.”

Most people who have caught H5N1 are agricultural workers who had direct contact with infected poultry or cattle. Of at least human cases of H5N1 in the U.S., there’s been one fatality in an immunocompromised person who had contact with birds.

In general, zoonotic disease researchers want more in companion animals of all types. Even if the human death toll of H5N1 remains relatively low, it remains a public health risk.

Chances for Mutation

Part of the concern with this H5N1 outbreak is that bird flu viruses change. Just a few mutations could make this strain adept at spreading between people. And the more people who catch H5N1, the more likely it would adapt to be more efficient, said , a virologist at the University of Pittsburgh School of Public Health, where he researches zoonotic diseases. H5N1 in cats.

Another concern is . If an animal or person is infected with two viruses at once, the viruses can trade genetic material, creating something new. This is common in influenza, so virologists are on the lookout for a case in which the bird flu reassorts to make a virus that’s far more contagious, and potentially more virulent.

Virologist Rasmussen is way more worried about this happening in pigs. Human respiratory physiology is more like that of swines than felines. So far, the current outbreak of H5N1 has not reached commercial hog operations. Rasmussen hopes it stays that way.

Kuchipudi said that reassortments are relatively rare events, but the outcome is completely unpredictable. Sometimes the results are benign, though it was likely a reassortment that involved an avian virus that led to the 1918 flu pandemic, which killed an . In the century since, virologists have established a global surveillance network to monitor influenza viruses. Scientists say to preparing for and hopefully preventing another pandemic.

Winter is “reassortment season” because of all the influenza viruses circulating, Rasmussen said. A reassortment in cats could technically be possible since these pets , but it’s highly unlikely. Rather, Rasmussen said, it’s more likely that a cat would pass H5N1 to a human who already has seasonal flu, and then a reassortment happens in the sick person. While the risk isn’t zero, Rasmussen doubts this will happen. It would depend on how ill the human was, and how much virus they’re exposed to from their cat.

“Unless the cat is really shedding a ton of virus, and you’re kind of making out with the cat, I think it would be hard,” she said.

Rasmussen and Kuchipudi caution there isn’t enough research to know for sure how much virus cats shed, or even how they shed the virus.

The Centers for Disease Control and Prevention was poised to release a new study about H5N1 in cats, but that was delayed when the Trump administration paused the Morbidity and Mortality Weekly Report. That investigation, revealed through emails obtained by ºÚÁϳԹÏÍø News in a public records request, found that house cats likely got bird flu from dairy workers.

Scientists and public health agencies should question previously held assumptions about bird flu, Kuchipudi urged. He noted that 20 years ago nobody would have predicted that bird flu would infect dairy cattle the way it is now.

Dogs Seem To Fare Better

The other domesticated animals, including dogs, can get bird flu infections. There are no confirmed cases of H5N1 among dogs in the U.S., though in other countries they have died from the virus.

There’s some disagreement and an overall lack of research on whether cat biology makes them more susceptible to H5N1 than other mammals, including humans, pigs, or dogs.

But cat behaviors, such as their love of dairy and predation of wild birds, put them at higher risk, Kuchipudi said. Also, living in groups might play a role as there are more feral cat colonies in the U.S. than packs of stray dogs.

There’s very little people can do about the H5N1 circulating in wild birds. As Rasmussen explained, “It’s flying around in the skies. It’s migrating north and south with the seasons.”

But she said there’s a lot people can do to keep the virus out of their homes.

That includes limiting a pet’s exposure to H5N1 by not feeding them raw food or unpasteurized milk, and trying to keep them from interacting with animals like rodents and wild birds that could be infected with the virus.

This article is from a partnership that includes and ºÚÁϳԹÏÍø News.

ºÚÁϳԹÏÍø 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 .

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Ahora, un pequeño pero creciente número de gatos domésticos se han enfermado con H5N1, la cepa de gripe aviar protagonista del brote actual en el país, después de comer alimentos crudos o beber leche sin pasteurizar. Algunos de ellos murieron.

La cepa de gripe aviar que circula actualmente para propagarse de manera eficiente entre las personas. Y no se han conocido casos de transmisión de gato a humano durante el brote actual de H5N1.

Aun así, de que los gatos, que posiblemente solo estén , puedan traer a casa una enfermedad al acecho nocturno.

“Los animales de compañía, y especialmente los gatos, son un riesgo para la salud pública en un 100% en términos de riesgo de transmisión zoonótica a las personas”, dijo la viróloga , que estudia la progresión de la enfermedad en virus emergentes en la de la Universidad de Saskatchewan.

Las personas duermen con sus gatos. Los gatos beben de los vasos de agua humanos y caminan sobre la mesada de la cocina. Por eso, los dueños de gatos deben ser conscientes de la propagación continua de la gripe aviar. “Al reducir el riesgo para sus gatos, se reduce el riesgo para tí mismo”, dijo Rasmussen.

Rasmussen no cree que los dueños de mascotas deban tener miedo de que sus gatos les transmitan la gripe aviar, pero dijo que tomar precauciones es bueno para las mascotas y para la salud pública.

Los síntomas de la gripe aviar en los gatos incluyen secreción nasal y alrededor de los ojos, explicó , presidente electo de la .

El H5N1 también causa problemas neurológicos como mareos y convulsiones, que comparte con los síntomas de la rabia. La rabia es casi siempre mortal y supone una amenaza para la salud humana, por lo que cualquier animal sospechoso de tener esta enfermedad viral debe ser sacrificado. Bailey anima a las personas a asegurarse de que sus mascotas estén al día con sus vacunas.

La veterinaria , que se especializa en enfermedades infecciosas en gatos y perros en la Facultad de Medicina Veterinaria de la Universidad de California-Davis, dijo que las personas no deben asumir que se trata de gripe aviar si su gato está enfermo, incluso si su animal pasa tiempo al aire libre o come una dieta cruda. Las enfermedades de las vías respiratorias superiores son comunes en los gatos, mientras que el H5N1 es “todavía bastante raro”.

Sykes le da a su gato, Freckles, alimento para mascotas. Dijo a NPR y ºÚÁϳԹÏÍø News que no le preocupa que Freckles contraiga el H5N1 porque el proceso de calentamiento para hacer alimentos secos o enlatados para mascotas mata los virus.

Más casos en gatos, más riesgo para los humanos

Algunas personas alimentan a sus mascotas con carne cruda o leche no pasteurizada porque creen que es una dieta más nutritiva o natural. El sitio web de la American Veterinary Medical Association desaconseja esta práctica debido a los , como la salmonella y la listeria, y ahora el H5N1.

Al mantener sanas a las mascotas, los veterinarios desempeñan un papel esencial en la protección de los humanos contra las enfermedades zoonóticas. La asociación afirma que el riesgo que el H5N1 se transmita de una mascota a una persona se considera “extremadamente bajo, pero no cero”.

Las agencias de salud pública estatales y locales, incluidas las del condado de y del estado de , han emitido advertencias similares sobre alimentar a las mascotas con alimentos crudos.

Las preocupaciones por la salud humana son en parte la razón por la que la Administración de Drogas y Alimentos (FDA) que ahora exige a las empresas de alimentos para perros y gatos que actualicen sus planes de seguridad para protegerse contra la gripe aviar.

Esto se produjo después que el Departamento de Agricultura de Oregon descubriera que un gato que era había contraído H5N1 y había muerto después de consumir un producto de pavo congelado elaborado por la marca de comida cruda para mascotas . Afirmó que “las pruebas confirmaron una coincidencia genética entre el virus en la comida cruda y congelada para mascotas y el gato infectado”.

Northwest Naturals retiró voluntariamente ese lote de su producto a base de pavo congelado. La empresa dijo a ºÚÁϳԹÏÍø News y NPR que el retiro del mercado involucraba “una pequeña producción de producto” y que tenía inquietudes sobre la precisión de las pruebas del Departamento de Agricultura de Oregón.

El departamento de salud pública del condado de Los Ángeles dijo que cinco gatos de dos hogares dieron positivo en la prueba de gripe aviar después de beber leche cruda no pasteurizada de la lechería Raw Farm en el Valle Central de California.

Raw Farm su leche y crema después que los productos minoristas dieran positivo en la prueba de H5N1, pero alimentaria, calificando la preocupación como “un problema político”.

Los veterinarios también advierten a los dueños de mascotas que no permitan que los gatos pasen tiempo sin supervisión al aire libre, ya que existe el riesgo de que contraigan el H5N1 al interactuar con otros animales que podrían transmitir la enfermedad.

“Este es un virus muy aterrador, dado que puede infectar a muchas especies diferentes de huéspedes”, dijo , director del Centro de Salud Felina de la Universidad Cornell.

Al menos un caso de un gato que infectó a una persona con gripe aviar ocurrió en 2016. Como , un veterinario de la ciudad de Nueva York contrajo el virus después de tener contacto cercano con gatos infectados. El veterinario experimentó síntomas leves y se recuperó rápidamente.

En ese caso, la cepa de gripe aviar era H7N2, no el H5N1 que ahora circula en el país.

La mayoría de las personas que han contraído el H5N1 son trabajadores agrícolas que tuvieron contacto directo con aves de corral o ganado infectados. De al menos humanos confirmados de H5N1, ha habido una muerte en una persona inmunodeprimida que tuvo contacto con aves.

En general, los investigadores de enfermedades zoonóticas quieren del H5N1 en animales de compañía de todo tipo. Incluso si el número de muertes humanas por H5N1 todavía es relativamente bajo, sigue siendo un riesgo para la salud pública.

Posibles mutaciones

Parte de la preocupación con este brote de H5N1 es que los virus de la gripe aviar cambian. Sólo unas pocas mutaciones podrían hacer que esta cepa sea capaz de propagarse entre personas. Y cuantas más personas se contagien del H5N1, más probable es que se adapte y se vuelva más eficiente, dijo Suresh Kuchipudi, virólogo de la Facultad de Salud Pública de la Universidad de Pittsburgh, donde investiga enfermedades zoonóticas. Kuchipudi ha estudiado el H5N1 en gatos.

Otro motivo de preocupación es algo llamado . Si un animal o una persona se infecta con dos virus a la vez, los virus pueden intercambiar material genético y crear algo nuevo. Esto es común en la gripe, por lo que los virólogos están atentos a un caso en el que la gripe aviar se recombine para crear un virus mucho más contagioso y potencialmente más virulento.

El virólogo Rasmussen está mucho más preocupado por que esto suceda en los cerdos. La fisiología respiratoria humana se parece más a la de los cerdos que a la de los felinos. Hasta ahora, el brote actual de H5N1 no ha llegado a las explotaciones porcinas comerciales. Rasmussen espera que siga así.

Kuchipudi dijo que las recombinaciones son eventos relativamente raros, pero el resultado es completamente impredecible. A veces los resultados son benignos. Aunque es probable que haya sido una recombinación que involucrara un virus aviar lo que condujera a la pandemia de gripe de 1918, . En el siglo transcurrido desde entonces, los virólogos han establecido una red de vigilancia mundial para controlar los virus de la gripe. Los científicos dicen que la en esta red es clave para prepararse y, con suerte, prevenir otra pandemia.

El invierno es la “temporada de redistribución” debido a todos los virus de la gripe que circulan, dijo Rasmussen. Una redistribución en gatos podría ser técnicamente posible ya que estas mascotas ocasionalmente contraen gripe estacional, pero es muy poco probable. En cambio, dijo Rasmussen, es más probable que un gato transmita el H5N1 a un humano que ya tiene gripe estacional, y luego se produzca una redistribución en la persona enferma. Si bien el riesgo no es cero, Rasmussen duda que esto suceda. Dependería de qué tan enfermo esté el humano y a qué cantidad de virus esté expuesto a través de su gato.

“A menos que el gato esté realmente eliminando una tonelada de virus y la persona se esté besando con el gato, creo que sería difícil”, dijo.

Rasmussen y Kuchipudi advierten que no hay suficiente investigación para saber con certeza cuánto virus eliminan los gatos, o incluso cómo lo eliminan.

Los Centros para el Control y la Prevención de Enfermedades (CDC) estaban a punto de publicar un nuevo estudio sobre el H5N1 en gatos, pero eso se retrasó cuando la administración Trump detuvo el Informe Semanal de Morbilidad y Mortalidad.

Esa investigación, revelada a través de correos electrónicos obtenidos por ºÚÁϳԹÏÍø News en una solicitud de registros públicos, encontró que los gatos domésticos probablemente contrajeron la gripe aviar de los trabajadores de las lecherías.

Los científicos y las agencias de salud pública deberían cuestionar las suposiciones previas sobre la gripe aviar, instó Kuchipudi. Señaló que hace 20 años nadie habría predicho que la gripe aviar infectaría al ganado lechero de la forma en que lo hace ahora.

Los perros parecen tener mejor suerte

La FDA dice que otros animales domésticos, incluidos los perros, pueden contraer infecciones de gripe aviar. No hay casos confirmados de H5N1 entre perros en los EE. UU., aunque en otros países han muerto a causa del virus.

Hay cierto desacuerdo y una falta general de investigación sobre si la biología de los gatos los vuelve más susceptibles al H5N1 que otros mamíferos, incluidos los humanos, los cerdos o los perros.

Pero los comportamientos de los gatos, como su amor por los productos lácteos y la depredación de aves silvestres, los ponen en mayor riesgo, dijo Kuchipudi. Además, vivir en grupos podría desempeñar un papel, ya que hay más colonias de gatos salvajes en los que grupos de perros callejeros.

Hay muy poco que la gente pueda hacer sobre el H5N1 que circula en las aves silvestres. Como explicó Rasmussen, “Está volando por los cielos. “Está migrando de norte a sur con las estaciones”.

Pero dijo que hay muchas cosas que la gente puede hacer para mantener el virus fuera de sus hogares.

Eso incluye limitar la exposición de una mascota al H5N1 no alimentándola con alimentos crudos o leche no pasteurizada, y tratar de evitar que interactúe con animales como roedores y aves silvestres que podrían estar infectados con el virus.

Este artículo es parte de una asociación que incluye a y ºÚÁϳԹÏÍø News.

ºÚÁϳԹÏÍø 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 .

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This story can be republished for free (details).

Hayes is too sick to work, so she has spent much of the last four years sitting on her beige couch, often curled up under an electric blanket.

“My blood flow now sucks, so my hands and my feet are freezing. Even if I’m sweating, my toes are cold,” , who lives in Western Pennsylvania. She misses feeling well enough to play with her 9-year-old son or attend her 17-year-old son’s baseball games.

Along with claiming the lives of 1.2 million Americans, the covid-19 pandemic has been described as a . Hayes is one of millions of Americans who suffer from long covid. Depending on the patient, the condition can rob someone of energy, scramble the autonomic nervous system, or fog their memory, among many other symptoms.In addition to the brain fog and chronic fatigue, Hayes’ constellation of symptoms includes frequent hives and migraines. Also, her tongue is constantly swollen and dry.

“I’ve had multiple doctors look at it and tell me they don’t know what’s going on,” Hayes said about her tongue. 

Estimates of prevalence range considerably, depending on how researchers define long covid in a given study, but the Centers for Disease Control and Prevention puts it at 17 million adults.

Despite long covid’s vast reach, the federal government’s investment in researching the disease — to the tune of $1.15 billion as of December — has so far failed to bring any new treatments to market. 

This disappoints and angers the patient community, who say the National Institutes of Health should focus on ways to stop their suffering instead of simply trying to understand why they’re suffering.

“It’s unconscionable that more than four years since this began, we still don’t have one FDA-approved drug,” said , executive director of the , a patient-led advocacy organization. Stone was among several people with long covid who spoke at a workshop hosted by the NIH in September where patients, clinicians, and researchers discussed their priorities and frustrations around the agency’s approach to long-covid research.

Some doctors and researchers are also critical of the agency’s research initiative, called RECOVER, or Researching COVID to Enhance Recovery. Without clinical trials, physicians specializing in treating long covid must rely on hunches to guide their clinical decisions, said , chief of research and development with the .

“What [RECOVER] lacks, really, is clarity of vision and clarity of purpose,” said Al-Aly, saying he agrees that the NIH has had enough time and money to produce more meaningful progress.

Now the NIH is starting to determine how to allocate an additional of funding for long-covid research, of which is earmarked for clinical trials. These funds will be allocated over the next four years.At the end of October, RECOVER for clinical trial ideas that look at potential therapies, including medications, saying its goal is “to work rapidly, collaboratively, and transparently to advance treatments for Long COVID.”

This turn suggests the NIH has begun to respond to patients. This has stirred cautious optimism among those who say that the agency’s approach to long covid has lacked urgency in the search for effective treatments.Stone calls this $300 million a down payment. She warns it’s going to take a lot more money to help people like Hayes regain some degree of health.“There really is a burden to make up this lost time now,” Stone said.

The NIH told ºÚÁϳԹÏÍø News and NPR via email that it recognizes the urgency in finding treatments. But to do that, there needs to be an understanding of the biological mechanisms that are making people sick, which is difficult to do with post-infectious conditions.

That’s why it has funded research into how long covid affects , or trying to understand why people are afflicted with the condition.

Good Science Takes Time

In December 2020, for the NIH to launch RECOVER, raising hopes in the long-covid patient community.

Then-NIH Director explained that was to better understand long covid as a disease and that clinical trials of potential treatments would come later.

According to RECOVER’s website, it has funded to test the safety and effectiveness of an experimental treatment or intervention. Just one of those trials has .

On the other hand, RECOVER has supported more than 200 observational studies, such as research on how long covid and on which symptoms are . And the initiative has funded more than 40 pathobiology studies, which focus on the basic cellular and molecular mechanisms of long covid.

RECOVER’s this research has led to crucial insights on the risk factors for developing long covid and on understanding how the disease interacts with preexisting conditions.

It notes that observational studies are important in helping scientists to design and launch evidence-based clinical trials.

Good science takes time, said , the co-principal investigator for the RECOVER-Adult Observational Cohort at New York University. And long covid is an “exceedingly complicated” illness that appears to affect nearly every organ system, she said. 

This makes it more difficult to study than many other diseases. Because long covid harms the body in so many ways, with widely variable symptoms, it’s harder to identify precise targets for treatment.

“I also will remind you that we’re only three, four years into this pandemic for most people,” Horwitz said. “We’ve been spending much more money than this, yearly, for 30, 40 years on other conditions.”

NYU received of RECOVER funds in 2021, which the institution is using to spearhead the collection of data and biospecimens from up to 40,000 patients. Horwitz said nearly 30,000 are enrolled so far.

This , Horwitz said, supports ongoing observational research, allowing scientists to understand what is happening biologically to people who don’t recover after an initial infection — and that will help determine which clinical trials for treatments are worth undertaking.

“Simply trying treatments because they are available without any evidence about whether or why they may be effective reduces the likelihood of successful trials and may put patients at risk of harm,” she said.

Delayed Hopes or Incremental Progress?

The NIH told ºÚÁϳԹÏÍø News and NPR that patients and caregivers have been central to RECOVER from the beginning, “playing critical roles in designing studies and clinical trials, responding to surveys, serving on governance and publication groups, and guiding the initiative.”But the consensus from patient advocacy groups is that RECOVER should have done more to prioritize clinical trials from the outset. Patients also say RECOVER leadership ignored their priorities and experiences when determining which studies to fund.

RECOVER has scored some gains, said , co-director of . This includes findings on differences in long covid between adults and kids.But Davids said the NIH shouldn’t have named the initiative “RECOVER,” since it wasn’t designed as a streamlined effort to develop treatments.

“The name’s a little cruel and misleading,” he said.

RECOVER’s initial allocation of $1.15 billion probably wasn’t enough to develop a new medication to treat long covid, said co-director of the University of Pennsylvania’s .

But, he said,Ìý the results of preliminary clinical trials could have spurred pharmaceutical companies to fund more studies on drug development and test how existing drugs influence a patient’s immune response.

Emanuel is one of the authors of a March 2022 covid . He notes that RECOVER’s lack of focus on new treatments was a problem. “Only 15% of the budget is for clinical studies. That is a failure in itself — a failure of having the right priorities,” he told ºÚÁϳԹÏÍø News and NPR via email.

And though the NYU biobank has been impactful, Emanuel said there needs to be more focus on how existing drugs influence immune response.

He said some clinical trials that RECOVER has funded are “ridiculous,” because they’ve focused on symptom amelioration, for example to of over-the-counter medication to improve sleep. Other studies looked at non-pharmacological interventions, such as exercise and “” to help with cognitive fog.

People with long covid say this type of clinical research contributes to what many describe as the “gaslighting” they experience from doctors, who sometimes blame a patient’s symptoms on anxiety or depression, rather than acknowledging long covid as a real illness with a physiological basis.

“I’m just disgusted,” said long-covid patient Hayes. “You wouldn’t tell somebody with diabetes to breathe through it.”

, director and founder of the , said she’s even taken breaks from seeking treatment after getting fed up with being told that her symptoms were due to her diet or mental health.

“You’re at the whim of somebody who may not even understand the spectrum of long covid,” Sweeney said.

Insurance Battles Over Experimental Treatments

Since there are still no long-covid treatments approved by the Food and Drug Administration, anything a physician prescribes is classified as either experimental — for unproven treatments — or an off-label use of a drug approved for other conditions. This means patients can struggle to get insurance to cover prescriptions.

, medical director for — said he writes many appeal letters. And some people pay for their own treatment.

For example, intravenous immunoglobulin therapy, low-dose naltrexone, and hyperbaric oxygen therapy are all promising treatments, he said.

For hyperbaric oxygen, , randomized show improvements for the chronic fatigue and brain fog that often plague long-covid patients. The theory is that higher oxygen concentration and increased air pressure can help heal tissues that were damaged during a covid infection.

However, the out-of-pocket cost for a series of sessions in a hyperbaric chamber can run as much as $8,000, Brode said.

“Am I going to look a patient in the eye and say, ‘You need to spend that money for an unproven treatment’?” he said. “I don’t want to hype up a treatment that is still experimental. But I also don’t want to hide it.”

There’s a host of pharmaceuticals that have promising off-label uses for long covid, said microbiologist , president and chief scientific officer at the Massachusetts-based . For instance, she’s collaborating on a clinical study that repurposes two HIV drugs to treat long covid.

Proal said research on treatments can move forward based on what’s already understood about the disease. For instance, she said that scientists — partly due to — that some patients small amounts of viral material after a covid infection. She has not received RECOVER funds but is researching antivirals.

But to vet a range of possible treatments for the millions suffering now — and to develop new drugs specifically targeting long covid — clinical trials are needed. And that requires money.

Hayes said she would definitely volunteer for an experimental drug trial. For now, though, “in order to not be absolutely miserable,” she said she focuses on what she can do, like having dinner with her family.At the same time, Hayes doesn’t want to spend the rest of her life on a beige couch. 

RECOVER’s deadline to submit research proposals for potential long-covid treatments is Feb. 1.

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Loveland has seen patients and coworkers at the nursing home where she works die from the viral disease.

Now she has a new worry: bringing home the coronavirus and unwittingly infecting her infant daughter, Maya, born in May.

Loveland’s maternity leave ended in late June, when Maya wasn’t yet 2 months old. Infants cannot be vaccinated against covid until they are . Children younger than that suffer of hospitalization of any age group except people 75 or older.

Between her patients’ complex medical needs and their close proximity to one another, covid continues to pose a grave threat to Loveland’s nursing home — and to the in the U.S. where some 1.2 million people live.

Despite this risk, a published in April found that just 4 in 10 nursing home residents in the U.S. received an updated covid vaccine in the winter of 2023-24. The analysis drew on data from Oct. 16, 2023, through Feb. 11, 2024, and was conducted by the Centers for Disease Control and Prevention.

The CDC report also revealed that during January’s covid peak, the rate of hospitalizations among nursing home residents was more than eight times that of all U.S. adults, age 70 and older.

Billing Complexities and Patient Skepticism

Last winter’s low vaccination rate was partly driven by the end of the federal government’s paying for administering the shots, said , a Chicago-based geriatrician.

While the vaccines remain free to patients, clinicians must now bill each person’s insurer separately. That makes vaccinating an entire nursing home more logistically complicated, Kumar said.

Kumar is president of the , which represents clinicians who work in nursing homes and similar settings, such as post-acute care, assisted living, and hospice facilities.

“The challenges of navigating through that process and arranging vaccinations, making sure that somebody gets to bill for services and collect money, that’s what has become a little bit more tedious,” he said.

In April, after the study was released, the that adults 65 and older get an additional dose of an updated vaccine if it’s been more than four months since their last dose. That means most nursing home patients who have had only one shot in fall or winter are not considered up to date on the covid vaccines.

Kumar and his colleagues are encountering more skepticism of the covid vaccines, compared with their rollout.

“The long-term care population is a microcosm of what’s happening across the country and, unfortunately, covid vaccine reluctance remains persistent throughout the general public. It’s our most significant challenge,” according to an emailed statement from David Gifford, chief medical officer at , which represents both for-profit and nonprofit nursing homes.

Nursing aide Loveland also has observed doubts and misinformation cropping up among patients at her job: “It’s the Facebook rabbit hole.”

But there are ways to push back against bad information, and states show wide variation in the proportion of nursing home residents who got vaccinated last winter.

For example, in both North and South Dakota, more than at nursing homes that reported data have gotten an updated covid vaccine this fall. Nationally, that share is 32%.

Building Trust Through Relationships

One major medical system operating in the Dakotas, , has managed more than two dozen nursing homes since a with the long-term care chain .

In some of these nursing homes more than 70% of residents were vaccinated last fall and winter — at one Sanford facility in Canton, South Dakota, the rate exceeded 90%.

Sanford achieved this by leveraging the size of the health system to make delivering vaccines more efficient, said , Sanford’s chief medical officer. He also credited a close working relationship with a South Dakota-based pharmacy chain, .

But the most crucial factor was that many of Sanford’s nursing home patients are cared for by doctors who are also employed by the health system. At most Sanford’s North and South Dakota nursing homes, these clinicians provide on-site primary care, meaning patients don’t have to leave the facilities to see doctors.

These employed doctors have been critical in persuading patients to stay up to date on their covid shots, Cauwels said. For example, a medical director who worked at the Good Samaritan nursing home in Canton was a long-serving physician with close ties to that community.

“An appropriate one-on-one conversation with someone who cares about you and has a history of doing so in the past, for us, has resulted in much better numbers than other places have been able to get to nationally,” said Cauwels, who added that Sanford still needs to work on reaching more patients.

Sanford’s success shows the onus of getting patients vaccinated extends beyond nursing homes, said , director of nursing home quality and public policy for , which represents nonprofit nursing homes. She said primary care providers, hospitalists, pharmacists, and other health care stakeholders need to step up.

“What conversations have occurred before they walked into a nursing home’s doors, between them and their doctors? Because they’re probably seeing their doctors quite frequently before they come into the nursing home,” said Eyigor, who noted these other clinicians are also regulated by Medicare, the federal health insurance program for adults 65 and older.

Critics: Shot Uptake Linked to Residents’ Dissatisfaction

Nursing homes are patients — as well as staff — about the importance of the covid vaccines. Industry critics contend that one-on-one conversations, based on trusted relationships with clinicians, are the least that nursing homes should do.

But many facilities don’t seem to be doing even that, according to , executive director of the , a watchdog group that monitors nursing homes. A 40% recent vaccination rate is inexcusable, he said, given the danger the virus poses to people who live in nursing homes.

A estimates that from the start of the pandemic through Aug. 15, 2021, 21% of covid deaths in the U.S. were among people living in nursing homes.

Mollot said that the alarmingly low covid vaccination rate is a symptom of larger issues throughout the industry. He hears from patients’ families about poor food quality and a general apathy that some nursing homes have toward residents’ concerns. He also cites and substandard, , care.

These problems intensified in the years since the start of the covid pandemic, Mollot said, causing extensive stress throughout the industry.

“That has resulted in much lower care, much more disrespectful interactions between residents and staff, and there’s just that lack of trust,” he added.

Loveland, the nursing aide outside Pittsburgh, also thinks the industry has fundamental problems when it comes to daily interactions between workers and residents. She said the managers at her job often ignore patients’ concerns.

“I feel like if the facilities did more with the patients, they would get more respect from the patients,” she said.

That means that when administrators announced it was time for residents to get one of the newest covid vaccines this year, Loveland said, residents often simply ignored the message, even if it meant putting their own health at risk.

This article is from a partnership that includes and ºÚÁϳԹÏÍø News.

ºÚÁϳԹÏÍø 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 .

USE OUR CONTENT

This story can be republished for free (details).