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 not adapted 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 always been the risk that cats, which are arguably only semi-domesticated, 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 Angela Rasmussen, who studies disease progression in emerging viruses at the University of Saskatchewan’s Vaccine and Infectious Disease Organization.

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 Michael Q. Bailey, president-elect of the American Veterinary Medical Association.

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 Jane Sykes, 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 KFF Health 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 discourages this due to foodborne pathogens like salmonella and listeria, and now the highly pathogenic H5N1.

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 Los Angeles County and Washington state, have issued similar warnings against raw food diets for pets.

Concerns for human health are partly why the FDA announced last month 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 “strictly an indoor cat” had contracted H5N1 and died after consuming a frozen turkey product made by the raw pet food brand Northwest Naturals. 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 KFF Health 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 voluntarily recalled its milk and cream after retail products tested positive for H5N1, but it denies any food safety issues, 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 Bruce Kornreich, 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 NPR reported, 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 67 confirmed 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 H5N1 surveillance 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 Suresh Kuchipudi, a virologist at the University of Pittsburgh School of Public Health, where he researches zoonotic diseases. Kuchipudi has studied H5N1 in cats.

Another concern is something called reassortment. 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 estimated 50 million people. In the century since, virologists have established a global surveillance network to monitor influenza viruses. Scientists say continued investment in this network is key 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 occasionally get seasonal flu, 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 KFF Health 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 FDA says 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 NPR and KFF Health News.

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.

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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 no se ha adaptado 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, siempre ha existido el riesgo de que los gatos, que posiblemente solo estén semi domesticados, 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 Angela Rasmussen, que estudia la progresión de la enfermedad en virus emergentes en la Vaccines and Infectious Disease Organization 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 Michael Q. Bailey, presidente electo de la American Veterinary Medical Association.

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 Jane Sykes, 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 KFF Health 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 patógenos transmitidos por los alimentos, como la salmonella y la listeria, y ahora el altamente patógeno 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 Los Ángeles y del estado de Washington, 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) anunció el mes pasado 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 “estrictamente de interior” había contraído H5N1 y había muerto después de consumir un producto de pavo congelado elaborado por la marca de comida cruda para mascotas Northwest Naturals. 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 KFF Health 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 retiró voluntariamente su leche y crema después que los productos minoristas dieran positivo en la prueba de H5N1, pero niega cualquier problema de seguridad 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 Bruce Kornreich, 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 informó NPR, 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 67 casos 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 una mayor vigilancia 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 recombinación. 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, que mató a unos 50 millones de personas. 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 inversión continua 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 KFF Health 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 NPR y KFF Health News.

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.

USE OUR CONTENT

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,” said Hayes, 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 mass disabling event. 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 Meighan Stone, executive director of the Long COVID Campaign, 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 Ziyad Al-Aly, chief of research and development with the VA St Louis Healthcare System.

“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 $662 million of funding for long-covid research, $300 million of which is earmarked for clinical trials. These funds will be allocated over the next four years.At the end of October, RECOVER issued a request 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 KFF Health 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 lung function, or trying to understand why only some people are afflicted with the condition.

Good Science Takes Time

In December 2020, Congress appropriated $1.15 billion for the NIH to launch RECOVER, raising hopes in the long-covid patient community.

Then-NIH Director Francis Collins explained that RECOVER’s goal 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 eight clinical trials to test the safety and effectiveness of an experimental treatment or intervention. Just one of those trials has published results.

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

RECOVER’s website says 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 Leora Horwitz, 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 nearly $470 million 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 vast repository, 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 KFF Health 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 JD Davids, co-director of Long COVID Justice. 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 Ezekiel J. Emanuel, co-director of the University of Pennsylvania’s Healthcare Transformation Institute.

But, he said,  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 roadmap report. 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 KFF Health 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 study the benefits of over-the-counter medication to improve sleep. Other studies looked at non-pharmacological interventions, such as exercise and “brain training” 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.”

Chimére L. Sweeney, director and founder of the Black Long Covid Experience, 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.

Michael Brode, medical director for UT Health Austin’s Post-COVID-19 Program — 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, two small, randomized controlled studies 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 Amy Proal, president and chief scientific officer at the Massachusetts-based PolyBio Research Foundation. 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 have evidence — partly due to RECOVER research — that some patients continue to harbor 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 6 months old. Children younger than that suffer the highest rates 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 15,000 other certified nursing homes in the U.S. where some 1.2 million people live.

Despite this risk, a CDC report 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 Rajeev Kumar, 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 Post-Acute and Long-Term Care Medical Association, 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 CDC recommended 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 AHCA/NCAL, 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 55% of residents 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, Sanford Health, has managed more than two dozen nursing homes since a 2019 merger with the long-term care chain Good Samaritan Society.

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 Jeremy Cauwels, Sanford’s chief medical officer. He also credited a close working relationship with a South Dakota-based pharmacy chain, Lewis Drug.

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 Jodi Eyigor, director of nursing home quality and public policy for LeadingAge, 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 required to educate 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 Richard Mollot, executive director of the Long Term Care Community Coalition, 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 study from the Journal of Health Economics 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 high rates of staff turnover and substandard, even dangerous, 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 NPR and KFF Health News.

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.

USE OUR CONTENT

This story can be republished for free (details).