How U.S. Set the Stage for a Bird Flu Pandemic

By Amy Maxmen, KFF Health News

Keith Poulsen’s jaw dropped when farmers showed him images on their cellphones at the World Dairy Expo in Wisconsin in October. A livestock veterinarian at the University of Wisconsin, Poulsen had seen sick cows before, with their noses dripping and udders slack.

But the scale of the farmers’ efforts to treat the sick cows stunned him. They showed videos of systems they built to hydrate hundreds of cattle at once. In 14-hour shifts, dairy workers pumped gallons of electrolyte-rich fluids into ailing cows through metal tubes inserted into the esophagus.

“It was like watching a field hospital on an active battlefront treating hundreds of wounded soldiers,” he said.

Nearly a year into the first outbreak of the bird flu among cattle, the virus shows no sign of slowing. The U.S. government failed to eliminate the virus on dairy farms when it was confined to a handful of states, by quickly identifying infected cows and taking measures to keep their infections from spreading. Now at least 875 herds across 16 states have tested positive.

Experts say they have lost faith in the government’s ability to contain the outbreak.

“We are in a terrible situation and going into a worse situation,” said Angela Rasmussen, a virologist at the University of Saskatchewan in Canada. “I don’t know if the bird flu will become a pandemic, but if it does, we are screwed.”

To understand how the bird flu got out of hand, KFF Health News interviewed nearly 70 government officials, farmers and farmworkers, and researchers with expertise in virology, pandemics, veterinary medicine, and more.

Together with emails obtained from local health departments through public records requests, this investigation revealed key problems, including deference to the farm industry, eroded public health budgets, neglect for the safety of agriculture workers, and the sluggish pace of federal interventions.

Case in point: The U.S. Department of Agriculture this month announced a federal order to test milk nationwide. Researchers welcomed the news but said it should have happened months ago — before the virus was so entrenched.

“It’s disheartening to see so many of the same failures that emerged during the covid-19 crisis reemerge,” said Tom Bollyky, director of the Global Health Program at the Council on Foreign Relations.

Far more bird flu damage is inevitable, but the extent of it will be left to the Trump administration and Mother Nature.

Already, the USDA has funneled more than $1.7 billion into tamping down the bird flu on poultry farms since 2022, which includes reimbursing farmers who’ve had to cull their flocks, and more than $430 million into combating the bird flu on dairy farms.

In coming years, the bird flu may cost billions of dollars more in expenses and losses. Dairy industry experts say the virus kills roughly 2% to 5% of infected dairy cows and reduces a herd’s milk production by about 20%.

Worse, the outbreak poses the threat of a pandemic. More than 60 people in the U.S. have been infected, mainly by cows or poultry, but cases could skyrocket if the virus evolves to spread efficiently from person to person. And the recent news of a person critically ill in Louisiana with the bird flu shows that the virus can be dangerous.

RUNNY NOSE OF DAIRY COW

Just a few mutations could allow the bird flu to spread between people. Because viruses mutate within human and animal bodies, each infection is like a pull of a slot machine lever.

“Even if there’s only a 5% chance of a bird flu pandemic happening, we’re talking about a pandemic that probably looks like 2020 or worse,” said Tom Peacock, a bird flu researcher at the Pirbright Institute in the United Kingdom, referring to covid. “The U.S. knows the risk but hasn’t done anything to slow this down,” he added.

Beyond the bird flu, the federal government’s handling of the outbreak reveals cracks in the U.S. health security system that would allow other risky new pathogens to take root.

“This virus may not be the one that takes off,” said Maria Van Kerkhove, director of the emerging diseases group at the World Health Organization. “But this is a real fire exercise right now, and it demonstrates what needs to be improved.”

A Slow Start

It may have been a grackle, a goose, or some other wild bird that infected a cow in northern Texas. In February, the state’s dairy farmers took note when cows stopped making milk. They worked alongside veterinarians to figure out why. In less than two months, veterinary researchers identified the highly pathogenic H5N1 bird flu virus as the culprit.

Long listed among pathogens with pandemic potential, the bird flu’s unprecedented spread among cows marked a worrying shift. It had evolved to thrive in animals that are more like people biologically than birds.

After the USDA announced the dairy outbreak on March 25, control shifted from farmers, veterinarians, and local officials to state and federal agencies. Collaboration disintegrated almost immediately.

Farmers worried the government might block their milk sales or even demand sick cows be killed, as poultry are, said Kay Russo, a livestock veterinarian in Fort Collins, Colorado.

Instead, Russo and other veterinarians said, they were dismayed by inaction. The USDA didn’t respond to their urgent requests to support studies on dairy farms — and for money and confidentiality policies to protect farmers from financial loss if they agreed to test animals.

The USDA announced that it would conduct studies itself. But researchers grew anxious as weeks passed without results. “Probably the biggest mistake from the USDA was not involving the boots-on-the-ground veterinarians,” Russo said.

Will Clement, a USDA senior adviser for communications, said in an email: “Since first learning of H5N1 in dairy cattle in late March 2024, USDA has worked swiftly and diligently to assess the prevalence of the virus in U.S. dairy herds.” The agency provided research funds to state and national animal health labs beginning in April, he added.

The USDA didn’t require lactating cows to be tested before interstate travel until April 29. By then, the outbreak had spread to eight other states. Farmers often move cattle across great distances, for calving in one place, raising in warm, dry climates, and milking in cooler ones. Analyses of the virus’s genes implied that it spread between cows rather than repeatedly jumping from birds into herds.

Milking equipment was a likely source of infection, and there were hints of other possibilities, such as through the air as cows coughed or in droplets on objects, like work boots. But not enough data had been collected to know how exactly it was happening. Many farmers declined to test their herds, despite an announcement of funds to compensate them for lost milk production in May.

“There is a fear within the dairy farmer community that if they become officially listed as an affected farm, they may lose their milk market,” said Jamie Jonker, chief science officer at the National Milk Producers Federation, an organization that represents dairy farmers. To his knowledge, he added, this hasn’t happened.

Speculation filled knowledge gaps. Zach Riley, head of the Colorado Livestock Association, said he suspected that wild birds may be spreading the virus to herds across the country, despite scientific data suggesting otherwise. Riley said farmers were considering whether to install “floppy inflatable men you see outside of car dealerships” to ward off the birds.

Advisories from agriculture departments to farmers were somewhat speculative, too. Officials recommended biosecurity measures such as disinfecting equipment and limiting visitors. As the virus kept spreading throughout the summer, USDA senior official Eric Deeble said at a press briefing, “The response is adequate.”

The USDA, the Centers for Disease Control and Prevention, and the Food and Drug Administration presented a united front at these briefings, calling it a “One Health” approach. In reality, agriculture agencies took the lead.

This was explicit in an email from a local health department in Colorado to the county’s commissioners. “The State is treating this primarily as an agriculture issue (rightly so) and the public health part is secondary,” wrote Jason Chessher, public health director in Weld County, Colorado. The state’s leading agriculture county, Weld’s livestock and poultry industry produces about $1.9 billion in sales each year.

Patchy Surveillance

In July, the bird flu spread from dairies in Colorado to poultry farms. To contain it, two poultry operations employed about 650 temporary workers — Spanish-speaking immigrants as young as 15 — to cull flocks. Inside hot barns, they caught infected birds, gassed them with carbon dioxide, and disposed of the carcasses. Many did the hazardous job without goggles, face masks, and gloves.

By the time Colorado’s health department asked if workers felt sick, five women and four men had been infected. They all had red, swollen eyes — conjunctivitis — and several had such symptoms as fevers, body aches, and nausea.

State health departments posted online notices offering farms protective gear, but dairy workers in several states told KFF Health News that they had none. They also hadn’t heard about the bird flu, never mind tests for it.

Studies in Colorado, Michigan, and Texas would later show that bird flu cases had gone under the radar. In one analysis, eight dairy workers who hadn’t been tested — 7% of those studied — had antibodies against the virus, a sign that they had been infected.

Missed cases made it impossible to determine how the virus jumped into people and whether it was growing more infectious or dangerous.

“I have been distressed and depressed by the lack of epidemiologic data and the lack of surveillance,” said Nicole Lurie, an executive director at the international organization the Coalition for Epidemic Preparedness Innovations, who served as assistant secretary for preparedness and response in the Obama administration.

Citing “insufficient data,” the British government raised its assessment of the risk posed by the U.S. dairy outbreak in July from three to four on a six-tier scale.

Virologists around the world said they were flabbergasted by how poorly the United States was tracking the situation. “You are surrounded by highly pathogenic viruses in the wild and in farm animals,” said Marion Koopmans, head of virology at Erasmus Medical Center in the Netherlands. “If three months from now we are at the start of the pandemic, it is nobody’s surprise.”

Although the bird flu is not yet spreading swiftly between people, a shift in that direction could cause immense suffering. The CDC has repeatedly described the cases among farmworkers this year as mild — they weren’t hospitalized. But that doesn’t mean symptoms are a breeze, or that the virus can’t cause worse.

“It does not look pleasant,” wrote Sean Roberts, an emergency services specialist at the Tulare County, California, health department in an email to colleagues in May. He described photographs of an infected dairy worker in another state: “Apparently, the conjunctivitis that this is causing is not a mild one, but rather ruptured blood vessels and bleeding conjunctiva.”

Over the past 30 years, half of around 900 people diagnosed with bird flu around the world have died. Even if the case fatality rate is much lower for this strain of the bird flu, covid showed how devastating a 1% death rate can be when a virus spreads easily.

Like other cases around the world, the person now hospitalized with the bird flu in Louisiana appears to have gotten the virus directly from birds. After the case was announced, the CDC released a statement saying, “A sporadic case of severe H5N1 bird flu illness in a person is not unexpected.”

‘The Cows Are More Valuable Than Us’

Local health officials were trying hard to track infections, according to hundreds of emails from county health departments in five states. But their efforts were stymied. Even if farmers reported infected herds to the USDA and agriculture agencies told health departments where the infected cows were, health officials had to rely on farm owners for access.

“The agriculture community has dictated the rules of engagement from the start,” said Michael Osterholm, director of the Center for Infectious Disease Research and Policy at the University of Minnesota. “That was a big mistake.”

Some farmers told health officials not to visit and declined to monitor their employees for signs of sickness. Sending workers to clinics for testing could leave them shorthanded when cattle needed care. “Producer refuses to send workers to Sunrise [clinic] to get tested since they’re too busy. He has pinkeye, too,” said an email from the Weld, Colorado, health department.

“We know of 386 persons exposed — but we know this is far from the total,” said an email from a public health specialist to officials at Tulare’s health department recounting a call with state health officials. “Employers do not want to run this through worker’s compensation. Workers are hesitant to get tested due to cost,” she wrote.

Jennifer Morse, medical director of the Mid-Michigan District Health Department, said local health officials have been hesitant to apply pressure after the backlash many faced at the peak of covid. Describing the 19 rural counties she serves as “very minimal-government-minded,” she said, “if you try to work against them, it will not go well.”

Rural health departments are also stretched thin. Organizations that specialize in outreach to farmworkers offered to assist health officials early in the outbreak, but months passed without contracts or funding. During the first years of covid, lagging government funds for outreach to farmworkers and other historically marginalized groups led to a disproportionate toll of the disease among people of color.

Kevin Griffis, director of communications at the CDC, said the agency worked with the National Center for Farmworker Health throughout the summer “to reach every farmworker impacted by H5N1.” But Bethany Boggess Alcauter, the center’s director of public health programs, said it didn’t receive a CDC grant for bird flu outreach until October, to the tune of $4 million. Before then, she said, the group had very limited funds for the task. “We are certainly not reaching ‘every farmworker,’” she added.

Farmworker advocates also pressed the CDC for money to offset workers’ financial concerns about testing, including paying for medical care, sick leave, and the risk of being fired. This amounted to an offer of $75 each. “Outreach is clearly not a huge priority,” Boggess said. “I hear over and over from workers, ‘The cows are more valuable than us.’”

The USDA has so far put more than $2.1 billion into reimbursing poultry and dairy farmers for losses due to the bird flu and other measures to control the spread on farms. Federal agencies have also put $292 million into developing and stockpiling bird flu vaccines for animals and people. In a controversial decision, the CDC has advised against offering the ones on hand to farmworkers.

“If you want to keep this from becoming a human pandemic, you focus on protecting farmworkers, since that’s the most likely way that this will enter the human population,” said Peg Seminario, an occupational health researcher in Bethesda, Maryland. “The fact that this isn’t happening drives me crazy.”

Nirav Shah, principal deputy director of the CDC, said the agency aims to keep workers safe. “Widespread awareness does take time,” he said. “And that’s the work we’re committed to doing.”

As President-elect Donald Trump comes into office in January, farmworkers may be even less protected. Trump’s pledge of mass deportations will have repercussions whether they happen or not, said Tania Pacheco-Werner, director of the Central Valley Health Policy Institute in California.

Many dairy and poultry workers are living in the U.S. without authorization or on temporary visas linked to their employers. Such precarity made people less willing to see doctors about covid symptoms or complain about unsafe working conditions in 2020. Pacheco-Werner said, “Mass deportation is an astronomical challenge for public health.”

First Human-to-Human Transmission?

A switch flipped in September among experts who study pandemics as national security threats. A patient in Missouri had the bird flu, and no one knew why. “Evidence points to this being a one-off case,” Shah said at a briefing with journalists. About a month later, the agency revealed it was not.

Antibody tests found that a person who lived with the patient had been infected, too. The CDC didn’t know how the two had gotten the virus, and the possibility of human transmission couldn’t be ruled out.

Nonetheless, at an October briefing, Shah said the public risk remained low and the USDA’s Deeble said he was optimistic that the dairy outbreak could be eliminated.

Experts were perturbed by such confident statements in the face of uncertainty, especially as California’s outbreak spiked and a child was mysteriously infected by the same strain of virus found on dairy farms.

“This wasn’t just immaculate conception,” said Stephen Morrison, director of the Global Health Policy Center at the Center for Strategic and International Studies. “It came from somewhere and we don’t know where, but that hasn’t triggered any kind of reset in approach — just the same kind of complacency and low energy.”

Sam Scarpino, a disease surveillance specialist in the Boston area, wondered how many other mysterious infections had gone undetected. Surveillance outside of farms was even patchier than on them, and bird flu tests have been hard to get.

Although pandemic experts had identified the CDC’s singular hold on testing for new viruses as a key explanation for why America was hit so hard by covid in 2020, the system remained the same. Bird flu tests could be run only by the CDC and public health labs until this month, even though commercial and academic diagnostic laboratories had inquired about running tests since April. The CDC and FDA should have tried to help them along months ago, said Ali Khan, a former top CDC official who now leads the University of Nebraska Medical Center College of Public Health.

As winter sets in, the bird flu becomes harder to spot because patient symptoms may be mistaken for the seasonal flu. Flu season also raises a risk that the two flu viruses could swap genes if they infect a person simultaneously. That could form a hybrid bird flu that spreads swiftly through coughs and sneezes.

A sluggish response to emerging outbreaks may simply be a new, unfortunate norm for America, said Bollyky, at the Council on Foreign Relations. If so, the nation has gotten lucky that the bird flu still can’t spread easily between people. Controlling the virus will be much harder and costlier than it would have been when the outbreak was small. But it’s possible.

Agriculture officials could start testing every silo of bulk milk, in every state, monthly, said Poulsen, the livestock veterinarian. “Not one and done,” he added. If they detect the virus, they’d need to determine the affected farm in time to stop sick cows from spreading infections to the rest of the herd — or at least to other farms. Cows can spread the bird flu before they’re sick, he said, so speed is crucial.

Curtailing the virus on farms is the best way to prevent human infections, said Jennifer Nuzzo, director of the Pandemic Center at Brown University, but human surveillance must be stepped up, too. Every clinic serving communities where farmworkers live should have easy access to bird flu tests — and be encouraged to use them. Funds for farmworker outreach must be boosted. And, she added, the CDC should change its position and offer farmworkers bird flu vaccines to protect them and ward off the chance of a hybrid bird flu that spreads quickly.

The rising number of cases not linked to farms signals a need for more testing in general. When patients are positive on a general flu test — a common diagnostic that indicates human, swine, or bird flu — clinics should probe more deeply, Nuzzo said.

The alternative is a wait-and-see approach in which the nation responds only after enormous damage to lives or businesses. This tack tends to rely on mass vaccination. But an effort analogous to Trump’s Operation Warp Speed is not assured, and neither is rollout like that for the first covid shots, given a rise in vaccine skepticism among Republican lawmakers.

Change may instead need to start from the bottom up — on dairy farms, still the most common source of human infections, said Poulsen. He noticed a shift in attitudes among farmers at the Dairy Expo: “They’re starting to say, ‘How do I save my dairy for the next generation?’ They recognize how severe this is, and that it’s not just going away.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues.

More Americans Have Chronic Pain Than Ever Before

By Pat Anson

Rates of chronic pain and high-impact pain have risen sharply in the United States since the start of the COVID-19 pandemic, which is likely due to an increase in sedentary lifestyles, anxiety and reduced access to healthcare.

In a study preprinted in medRxiv, researchers estimate that 60 million Americans in 2023 had chronic pain, up from 50 million in 2019. The study is based on results from 2019, 2021 and 2023 National Health Interview Surveys (NHIS) of a nationally representative sample of about 88,500 U.S. adults.

Caution is warranted when research is preprinted before undergoing peer-review, but the findings here are startling. Rates of chronic pain (CP) rose from 20.6% in 2019 (before the pandemic), to 20.9% in 2021, and surged to 24.3% in 2023.

High impact chronic pain (HICP), which is pain strong enough to limit daily life and work activity, rose from 7.5% of adults in 2019 to 8.5% in 2023. That translates to 21 million Americans living with debilitating pain.

“Chronic pain and high-impact chronic pain surged dramatically after the COVID pandemic. The widely-cited 20% prevalence of CP in the adult US population appears obsolete,” wrote co-authors Anna Zajacova, PhD, at Western University in Ontario and Hanna Grol-Prokopczyk, PhD, at the University of Buffalo.

“Our findings indicated that chronic pain, already a widespread issue, has reached new heights in the post-pandemic era, necessitating urgent attention and intervention strategies to address and alleviate this growing health crisis.”

The increases in pain occurred in almost all body areas, such as the head, abdomen, back, arms, hands, hips, knees and feet, except for jaw and dental pain. All age groups and both sexes were affected.  

SOURCE: medRxiv

Researchers say being infected with COVID or having long COVID played a significant role in the increases, but social and economic causes may have also been at work. Pain could have worsened due to anxiety, depression, loneliness, physical inactivity and reduced access to health care, as well as inflation and economic hardships caused by the pandemic.

“The 2023 surge is not restricted to specific demographics or body sites — it is widespread across the population subgroups and affects all examined pain sites except jaw/dental pain. Further, the increase persisted even after accounting for potential drivers such as COVID-19 infections, socioeconomic factors, and other potentially important covariates such as mental health or health behaviors. This suggests that a broader, more complex set of factors may be at play,” researchers reported.

“Thus, while the viral infections certainly had an impact, other societal and lifestyle changes that occurred during and after the pandemic may have contributed to the increase in pain. The role of increased social isolation and loneliness, disrupted health care access, and heightened levels of stress and anxiety, all of which were exacerbated by the pandemic, should be explored in future research.”

Although chronic pain rates have surged over the last few years, there has been little response from healthcare providers and regulators. In fact, the just opposite happening. The Food and Drug Administration predicted a 7.9% decline in medical need for opioid pain medication in 2024, and anticipates a 6.6% decrease in demand next year.

The Drug Enforcement Administration uses those FDA estimates when setting its annual production quotas for opioids, which have fallen for eight straight years. Since 2015, the supply of oxycodone has been reduced by over 68% and hydrocodone by nearly 73%.

Many pain patients feel like they’ve been abandoned by the healthcare system, according to a 2023 PNN survey of nearly 3,000 patients or caregivers. About one in five patients have been unable to find a doctor to treat their pain, and 12% say they were abandoned or discharged by a doctor. Many are now hoarding opioid medication or turning to other substances for relief.

Those findings from our survey are now being reflected in the study on rising pain rates.

“The findings are a call to action for public health professionals, policymakers, and researchers to further investigate the root causes of this increase. Addressing the rise in chronic pain is critical, as pain serves as a sensitive barometer of population health and has profound economic, social, and health consequences,” said Zajacova and Hanna Grol-Prokopczyk.

‘We’re Flying Blind’: Response to Bird Flu Outbreak Mirrors Covid Errors

By Amy Maxmen, KFF Health News

It’s been nearly three months since the U.S. government announced an outbreak of the bird flu virus on dairy farms. The World Health Organization considers the virus a public health concern because of its potential to cause a pandemic, yet the U.S. has tested only about 45 people across the country.

“We’re flying blind,” said Jennifer Nuzzo, director of the Pandemic Center at the Brown University School of Public Health. With so few tests run, she said, it’s impossible to know how many farmworkers have been infected, or how serious the disease is. A lack of testing means the country might not notice if the virus begins to spread between people — the gateway to another pandemic.

“We’d like to be doing more testing. There’s no doubt about that,” said Nirav Shah, principal deputy director of the Centers for Disease Control and Prevention. The CDC’s bird flu test is the only one the Food and Drug Administration has authorized for use right now. Shah said the agency has distributed these tests to about 100 public health labs in states.

“We’ve got roughly a million available now,” he said, “and expect 1.2 million more in the next two months.”

But Nuzzo and other researchers are concerned because the CDC and public health labs aren’t generally where doctors order tests from. That job tends to be done by major clinical laboratories run by companies and universities, which lack authorization for bird flu testing.

As the outbreak grows — with at least 114 herds infected in 12 states as of June 18 — researchers said the CDC and FDA are not moving fast enough to remove barriers that block clinical labs from testing. In one case, the diagnostics company Neelyx Labs was on hold with a query for more than a month.

“Clinical labs are part of the nation’s public health system,” said Alex Greninger, assistant director of the University of Washington Medicine Clinical Virology Laboratory. “Pull us into the game. We’re stuck on the bench.”

The CDC recognized the need for clinical labs in a June 10 memo. It calls on industry to develop tests for the H5 strain of bird flu virus, the one circulating among dairy cattle.

“The limited availability and accessibility of diagnostic tests for Influenza A(H5) poses several pain points,” the CDC wrote. The points include a shortage of tests if demand spikes.

Testing Failures Made Pandemic Worse

Researchers, including former CDC director Tom Frieden and Anthony Fauci, who led the nation’s response to covid, cite testing failures as a key reason the U.S. fared so poorly with covid. Had covid tests been widely available in early 2020, they say, the U.S. could have detected many cases before they turned into outbreaks that prompted business shutdowns and cost lives.

In an article published this month, Nuzzo and a group of colleagues noted that the problem wasn’t testing capability but a failure to deploy that capability swiftly. The U.S. reported excess mortality eight times as high as other countries with advanced labs and other technological advantages.

A covid test vetted by the WHO was available by mid-January 2020. Rather than use it, the United States stuck to its own multistage process, which took several months. Namely, the CDC develops its own test then sends it to local public health labs. Eventually, the FDA authorizes tests from clinical diagnostic labs that serve hospital systems, which must then scale up their operations. That took time, and people died amid outbreaks at nursing homes and prisons, waiting on test results.

In contrast, South Korea immediately rolled out testing through private sector laboratories, allowing it to keep schools and businesses open. “They said, ‘Gear up, guys; we’re going to need a ton of tests,’” said Frieden, now president of the public health organization Resolve to Save Lives. “You need to get commercials in the game.” 

Nuzzo and her colleagues describe a step-by-step strategy for rolling out testing in health emergencies, in response to mistakes made obvious by covid. But in this bird flu outbreak, the U.S. is weeks behind that playbook.

Ample testing is critical for two reasons. First, people need to know if they’re infected so that they can be quickly treated, Nuzzo said. Over the past two decades, roughly half of about 900 people around the globe known to have gotten the bird flu died from it.

Although the three farmworkers diagnosed with the disease this year in the United States had only mild symptoms, like a runny nose and inflamed eyes, others may not be so lucky. The flu treatment Tamiflu works only when given soon after symptoms start.

The CDC and local health departments have tried to boost bird flu testing among farmworkers, asking them to be tested if they feel sick. Farmworker advocates list several reasons why their outreach efforts are failing. The outreach might not be in the languages the farmworkers speak, for example, or address such concerns as a loss of employment.

If people who live and work around farms simply see a doctor when they or their children fall ill, those cases could be missed if the doctors send samples to their usual clinical laboratories. The CDC has asked doctors to send samples from people with flu symptoms who have exposure to livestock or poultry to public health labs.

“If you work on a farm with an outbreak and you’re worried about your welfare, you can get tested,” Shah said.

But sending samples to public health departments requires knowledge, time, and effort.

“I really worry about a testing scheme in which busy clinicians need to figure this out,” Nuzzo said.

‘Get Prepared Before Things Get Crazy’

The other reason to involve clinical laboratories is so the nation can ramp up testing if the bird flu is suddenly detected among people who didn’t catch it from cattle. There’s no evidence the virus has started to spread among people, but that could change in coming months as it evolves.

The fastest way to get clinical labs involved, Greninger said, is to allow them to use a test the FDA has already authorized: the CDC’s bird flu test. On April 16 the CDC opened up that possibility by offering royalty-free licenses for components of its bird flu tests to accredited labs.

Several commercial labs asked for licenses. “We want to get prepared before things get crazy,” said Shyam Saladi, chief executive officer of the diagnostics company Neelyx Labs, which offered covid and mpox tests during shortages in those outbreaks. His experience over the past two months reveals the types of barriers that prevent labs from moving swiftly.

In email exchanges with the CDC, shared with KFF Health News, Saladi specifies the labs’ desire for licenses relevant to the CDC’s test, as well as a “right to reference” the CDC’s data in its application for FDA authorization.

That “right to reference” makes it easier for one company to use a test developed by another. It allows the new group to skip certain analyses conducted by the original maker, by telling the FDA to look at data in the original FDA application. This was commonplace with covid tests at the peak of the pandemic.

At first, the CDC appeared eager to cooperate. “A right of reference to the data should be available,” Jonathan Motley, a patent specialist at the CDC, wrote in an email to Saladi on April 24. Over the next few weeks, the CDC sent him information about transferring its licenses to the company, and about the test, which prompted Neelyx’s researchers to buy testing components and try out the CDC’s process on their equipment.

But Saladi grew increasingly anxious about the ability to reference the CDC’s data in the company’s FDA application. “Do you have an update with respect to the right of reference?” he asked the CDC on May 13. “If there are any potential sticking points with respect to this, would you mind letting us know please?”

He asked several more times in the following weeks, as the number of herds infected with the bird flu ticked upward and more cases among farmworkers were announced. “Given that it is May 24 and the outbreak has only expanded, can CDC provide a date by which it plans to respond?” Saladi wrote.

The CDC eventually signed a licensing agreement with Neelyx but informed Saladi that it would not, in fact, provide the reference. Without that, Saladi said, he could not move forward with the CDC’s test — at least not without more material from the agency. “It’s really frustrating,” he said. “We thought they really intended to support the development of these tests in case they are needed.”

Shah, from the CDC, said test manufacturers should generate their own data to prove that they’re using the CDC’s test correctly. “We don’t have a shortage such that we need to cut corners,” he said. “Quality reigns supreme.”

The CDC has given seven companies, including Neelyx, licenses for its tests — although none have been cleared to use them by the FDA. Only one of those companies asked for the right of reference, Shah said. The labs may be assisted by additional material that the agency is developing now, to allow them to complete the analyses — even without the reference.

“This should have happened sooner,” Saladi told KFF Health News when he was told about the CDC’s pending additional material. “There’s been no communication about this.”

Greninger said the delays and confusion are reminiscent of the early months of covid, when federal agencies prioritized caution over speed. Test accuracy is important, he said, but excessive vetting can cause harm in a fast-moving outbreak like this one. “The CDC should be trying to open this up to labs with national reach and a good reputation,” he said. “I fall on the side of allowing labs to get ready — that’s a no-brainer.”

Clinical laboratories have also begun to develop their own tests from scratch. But researchers said they’re moving cautiously because of a recent FDA rule that gives the agency more oversight of lab-developed tests, lengthening the pathway to approval. In an email to KFF Health News, FDA press officer Janell Goodwin said the rule’s enforcement will occur gradually.

However, Susan Van Meter, president of the American Clinical Laboratory Association, a trade group whose members include the nation’s largest commercial diagnostic labs, said companies need more clarity: “It’s slowing things down because it’s adding to the confusion about what is allowable.”

Creating tests for the bird flu is already a risky bet, because demand is uncertain. It’s not clear whether this outbreak in cattle will trigger an epidemic or fizzle out. In addition to issues with the CDC and FDA, clinical laboratories are trying to figure out whether health insurers or the government will pay for bird flu tests.

These wrinkles will be smoothed eventually. Until then, the vanishingly slim numbers of people tested, along with the lack of testing in cattle, may draw criticism from other parts of the world.

“Think about our judgment of China’s transparency at the start of covid,” Nuzzo said. “The current situation undermines America’s standing in the world.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues.  

Lack of Testing Raises Risk of Bird Flu Pandemic

By Amy Maxmen and Arthur Allen, KFF Health News

Stanford University infectious disease doctor Abraar Karan has seen a lot of patients with runny noses, fevers, and irritated eyes lately. Such symptoms could signal allergies, covid, or a cold. This year, there’s another suspect, bird flu — but there’s no way for most doctors to know.

If the government doesn’t prepare to ramp up H5N1 bird flu testing, he and other researchers warn, the United States could be caught off guard again by a pandemic.

“We’re making the same mistakes today that we made with covid,” Deborah Birx, who served as former President Donald Trump’s coronavirus response coordinator, said June 4 on CNN.

To become a pandemic, the H5N1 bird flu virus would need to spread from person to person. The best way to keep tabs on that possibility is by testing people.

Scientifically speaking, many diagnostic laboratories could detect the virus. However, red tape, billing issues, and minimal investment are barriers to quickly ramping up widespread availability of testing. At the moment, the Food and Drug Administration has authorized only the Centers for Disease Control and Prevention’s bird flu test, which is used only for people who work closely with livestock.

State and federal authorities have detected bird flu in dairy cattle in 12 states. Three people who work on separate dairy farms tested positive, and it is presumed they caught the virus from cows. Yet researchers agree that number is an undercount given the CDC has tested only about 40 people for the disease.

“It’s important to know if this is contained on farms, but we have no information because we aren’t looking,” said Helen Chu, an infectious disease specialist at the University of Washington in Seattle who alerted the country to covid’s spread in 2020 by testing people more broadly.

Reports of untested sick farmworkers — as well as a maternity worker who had flu symptoms — in the areas with H5N1 outbreaks among cattle in Texas suggest the numbers are higher. And the mild symptoms of those who tested positive — a cough and eye inflammation, without a fever — are such that infected people might not bother seeking medical care and, therefore, wouldn’t be tested.

The CDC has asked farmworkers with flu symptoms to get tested, but researchers are concerned about a lack of outreach and incentives to encourage testing among people with limited job security and access to health care. Further, by testing only on dairy farms, the agency likely would miss evidence of wider spread.

“It’s hard to not compare this to covid, where early on we only tested people who had traveled,” said Benjamin Pinsky, medical director of the clinical virology laboratory at Stanford University. “That left us open to not immediately recognizing that it was transmitting among the community.”

In the early months of covid, the rollout of testing in the United States was catastrophically slow. Although the World Health Organization had validated a test and other groups had developed their own using basic molecular biology techniques, the CDC at first insisted on creating and relying on its own test. Adding to delays, the first version it shipped to state health labs didn’t work.

The FDA lagged, too. It didn’t authorize tests from diagnostic laboratories outside of the CDC until late February 2020.

On Feb. 27, 2020, Chu’s research lab detected covid in a teenager who didn’t meet the CDC’s narrow testing criteria. This case sounded an alarm that covid had spread below the radar. Scaling up to meet demand took time: Months passed before anyone who needed a covid test could get one.

Chu notes this isn’t 2020 — not by a long shot. Hospitals aren’t overflowing with bird flu patients. Also, the country has the tools to do much better this time around, she said, if there’s political will.

‘We Should Absolutely Get Prepared’

For starters, tests that detect the broad category of influenzas that H5N1 belongs to, called influenza A, are FDA-approved and ubiquitous. These are routinely run in the “flu season,” from November to February. An unusual number of positives from these garden-variety flu tests this spring and summer could alert researchers that something is awry.

Doctors, however, are unlikely to request influenza A tests for patients with respiratory symptoms outside of flu season, in part because health insurers may not cover them except in limited circumstances, said Alex Greninger, assistant director of the clinical virology laboratory at the University of Washington.

That’s a solvable problem, he added. At the peak of the covid pandemic, the government overcame billing issues by mandating that insurance companies cover tests, and set a lucrative price to make it worthwhile for manufacturers. “You ran into a testing booth on every other block in Manhattan because companies got $100 every time they stuck a swab in someone’s nose,” Greninger said.

Another obstacle is that the FDA has yet to allow companies to run their influenza A tests using eye swabs, although the CDC and public health labs are permitted to do so. Notably, the bird flu virus was detected only in an eye swab from one farmworker infected this year — and not in samples drawn from the nose or throat.

Overcoming such barriers is essential, Chu said, to ramp up influenza A testing in regions with livestock. “The biggest bang for the buck is making sure that these tests are routine at clinics that serve farmworker communities,” she said, and suggested pop-up testing at state fairs, too.

In the meantime, novel tests that detect the H5N1 virus, specifically, could be brought up to speed. The CDC’s current test isn’t very sensitive or simple to use, researchers said.

Stanford, the University of Washington, the Mayo Clinic, and other diagnostic laboratories that serve hospital systems have developed alternatives to detecting the virus circulating now. However, their reach is limited, and researchers stress a need to jump-start additional capacity for testing before a crisis is underway.

“How can we make sure that if this becomes a public health emergency we aren’t stuck in the early days of covid, where things couldn’t move quickly?” Pinsky said.

A recent rule that gives the FDA more oversight of lab-developed tests may bog down authorization. In a statement to KFF Health News, the FDA said that, for now, it may allow tests to proceed without a full approval process. The CDC did not respond to requests for comment.

But the American Clinical Laboratory Association has asked the FDA and the CDC for clarity on the new rule. “It’s slowing things down because it’s adding to the confusion about what is allowable,” said Susan Van Meter, president of the diagnostic laboratory trade group.

Labcorp, Quest Diagnostics, and other major testing companies are in the best position to manage a surge in testing demand because they can process hundreds per day, rather than dozens. But that would require adapting testing processes for their specialized equipment, a process that consumes time and money, said Matthew Binnicker, director of clinical virology at the Mayo Clinic.

“There’s only been a handful of H5N1 cases in humans the last few years,” he said, “so it’s hard for them to invest millions when we don’t know the future.”

The government could provide funding to underwrite its research, or commit to buying tests in bulk, much as Operation Warp Speed did to advance covid vaccine development.

“If we need to move to scale this, there would need to be an infusion of money,” said Kelly Wroblewski, director of infectious disease programs at the Association of Public Health Laboratories. Like an insurance policy, the upfront expense would be slight compared with the economic blow of another pandemic.

Other means of tracking the H5N1 virus are critical, too. Detecting antibodies against the bird flu in farmworkers would help reveal whether more people have been infected and recovered. And analyzing wastewater for the virus could indicate an uptick in infections in people, birds, or cattle.

As with all pandemic preparedness efforts, the difficulty lies in stressing the need to act before a crisis strikes, Greninger said.

“We should absolutely get prepared,” he said, “but until the government insures some of the risk here, it’s hard to make a move in that direction.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues. 

Will Bird Flu Be the Next Pandemic?

By Amy Maxmen, KFF Health News

Headlines are flying after the Department of Agriculture confirmed that the H5N1 bird flu virus has infected dairy cows around the country. Tests have detected the virus among cattle in nine states, mainly in Texas and New Mexico, and most recently in Colorado, said Nirav Shah, principal deputy director at the Centers for Disease Control and Prevention, at a May 1 event held by the Council on Foreign Relations.

A menagerie of other animals have been infected by H5N1, and at least one person in Texas. But what scientists fear most is if the virus were to spread efficiently from person to person. That hasn’t happened and might not. Shah said the CDC considers the H5N1 outbreak “a low risk to the general public at this time.”

Viruses evolve and outbreaks can shift quickly. “As with any major outbreak, this is moving at the speed of a bullet train,” Shah said. “What we’ll be talking about is a snapshot of that fast-moving train.” What he means is that what’s known about the H5N1 bird flu today will undoubtedly change.

With that in mind, KFF Health News explains what you need to know now.

Q: Who gets the bird flu?

Mainly birds. Over the past few years, however, the H5N1 bird flu virus has increasingly jumped from birds into mammals around the world. The growing list of more than 50 species includes seals, goats, skunks, cats, and wild bush dogs at a zoo in the United Kingdom. At least 24,000 sea lions died in outbreaks of H5N1 bird flu in South America last year.

What makes the current outbreak in cattle unusual is that it’s spreading rapidly from cow to cow, whereas the other cases — except for the sea lion infections — appear limited. Researchers know this because genetic sequences of the H5N1 viruses drawn from cattle this year were nearly identical to one another.

The cattle outbreak is also concerning because the country has been caught off guard. Researchers examining the virus’s genomes suggest it originally spilled over from birds into cows late last year in Texas, and has since spread among many more cows than have been tested. “Our analyses show this has been circulating in cows for four months or so, under our noses,” said Michael Worobey, an evolutionary biologist at the University of Arizona in Tucson.

Q: Is this the start of the next pandemic?

Not yet. But it’s a thought worth considering because a bird flu pandemic would be a nightmare. More than half of people infected by older strains of H5N1 bird flu viruses from 2003 to 2016 died. Even if death rates turn out to be less severe for the H5N1 strain currently circulating in cattle, repercussions could involve loads of sick people and hospitals too overwhelmed to handle other medical emergencies.

Although at least one person has been infected with H5N1 this year, the virus can’t lead to a pandemic in its current state. To achieve that horrible status, a pathogen needs to sicken many people on multiple continents. And to do that, the H5N1 virus would need to infect a ton of people. That won’t happen through occasional spillovers of the virus from farm animals into people. Rather, the virus must acquire mutations for it to spread from person to person, like the seasonal flu, as a respiratory infection transmitted largely through the air as people cough, sneeze, and breathe. As we learned in the depths of covid-19, airborne viruses are hard to stop.

That hasn’t happened yet. However, H5N1 viruses now have plenty of chances to evolve as they replicate within thousands of cows. Like all viruses, they mutate as they replicate, and mutations that improve the virus’s survival are passed to the next generation. And because cows are mammals, the viruses could be getting better at thriving within cells that are closer to ours than birds’.

The evolution of a pandemic-ready bird flu virus could be aided by a sort of superpower possessed by many viruses. Namely, they sometimes swap their genes with other strains in a process called reassortment. In a study published in 2009, Worobey and other researchers traced the origin of the H1N1 “swine flu” pandemic to events in which different viruses causing the swine flu, bird flu, and human flu mixed and matched their genes within pigs that they were simultaneously infecting. Pigs need not be involved this time around, Worobey warned.

Q: Can I get sick from contaminated milk?

Cow’s milk, as well as powdered milk and infant formula, sold in stores is considered safe because the law requires all milk sold commercially to be pasteurized. That process of heating milk at high temperatures kills bacteria, viruses, and other teeny organisms. Tests have identified fragments of H5N1 viruses in milk from grocery stores but confirm that the virus bits are dead and, therefore, harmless.

Unpasteurized “raw” milk, however, has been shown to contain living H5N1 viruses, which is why the FDA and other health authorities strongly advise people not to drink it. Doing so could cause a person to become seriously ill or worse. But even then, a pandemic is unlikely to be sparked because the virus — in its current form — does not spread efficiently from person to person, as the seasonal flu does.

Q: What should be done?

A lot! Because of a lack of surveillance, the U.S. Department of Agriculture and other agencies have allowed the H5N1 bird flu to spread under the radar in cattle. To get a handle on the situation, the USDA recently ordered all lactating dairy cattle to be tested before farmers move them to other states, and the outcomes of the tests to be reported.

But just as restricting covid tests to international travelers in early 2020 allowed the coronavirus to spread undetected, testing only cows that move across state lines would miss plenty of cases.

Such limited testing won’t reveal how the virus is spreading among cattle — information desperately needed so farmers can stop it. A leading hypothesis is that viruses are being transferred from one cow to the next through the machines used to milk them.

To boost testing, Fred Gingrich, executive director of a nonprofit organization for farm veterinarians, the American Association of Bovine Practitioners, said the government should offer funds to cattle farmers who report cases so that they have an incentive to test. Barring that, he said, reporting just adds reputational damage atop financial loss.

“These outbreaks have a significant economic impact,” Gingrich said. “Farmers lose about 20% of their milk production in an outbreak because animals quit eating, produce less milk, and some of that milk is abnormal and then can’t be sold.”

The government has made the H5N1 tests free for farmers, Gingrich added, but they haven’t budgeted money for veterinarians who must sample the cows, transport samples, and file paperwork. “Tests are the least expensive part,” he said.

If testing on farms remains elusive, evolutionary virologists can still learn a lot by analyzing genomic sequences from H5N1 viruses sampled from cattle. The differences between sequences tell a story about where and when the current outbreak began, the path it travels, and whether the viruses are acquiring mutations that pose a threat to people. Yet this vital research has been hampered by the USDA’s slow and incomplete posting of genetic data, Worobey said.

The government should also help poultry farmers prevent H5N1 outbreaks since those kill many birds and pose a constant threat of spillover, said Maurice Pitesky, an avian disease specialist at the University of California-Davis.

Waterfowl like ducks and geese are the usual sources of outbreaks on poultry farms, and researchers can detect their proximity using remote sensing and other technologies. By zeroing in on zones of potential spillover, farmers can target their attention. That can mean routine surveillance to detect early signs of infections in poultry, using water cannons to shoo away migrating flocks, relocating farm animals, or temporarily ushering them into barns. “We should be spending on prevention,” Pitesky said.

Q: What could happen to people who get the H5N1 bird flu?

No one really knows. Only one person in Texas has been diagnosed with the disease this year, in April. This person worked closely with dairy cows, and had a mild case with an eye infection. The CDC found out about them because of its surveillance process. Clinics are supposed to alert state health departments when they diagnose farmworkers with the flu, using tests that detect influenza viruses, broadly. State health departments then confirm the test, and if it’s positive, they send a person’s sample to a CDC laboratory, where it is checked for the H5N1 virus, specifically. “Thus far we have received 23,” Shah said. “All but one of those was negative.”

State health department officials are also monitoring around 150 people, he said, who have spent time around cattle. They’re checking in with these farmworkers via phone calls, text messages, or in-person visits to see if they develop symptoms. And if that happens, they’ll be tested.

Another way to assess farmworkers would be to check their blood for antibodies against the H5N1 bird flu virus; a positive result would indicate they might have been unknowingly infected. But Shah said health officials are not yet doing this work.

“The fact that we’re four months in and haven’t done this isn’t a good sign,” Worobey said. “I’m not super worried about a pandemic at the moment, but we should start acting like we don’t want it to happen.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues.

Ageism: A Wake-Up Call for Baby Boomers

By Judith Graham, KFF Health News

The covid-19 pandemic would be a wake-up call for America, advocates for the elderly predicted: incontrovertible proof that the nation wasn’t doing enough to care for vulnerable older adults.

The death toll was shocking, as were reports of chaos in nursing homes and seniors suffering from isolation, depression, untreated illness, and neglect. Around 900,000 older adults have died of covid-19 to date, accounting for 3 of every 4 Americans who have perished in the pandemic.

But decisive actions that advocates had hoped for haven’t materialized. Today, most people — and government officials — appear to accept covid as a part of ordinary life.

Many seniors at high risk aren’t getting antiviral therapies for covid, and most older adults in nursing homes aren’t getting updated vaccines. Efforts to strengthen care quality in nursing homes and assisted living centers have stalled amid debate over costs and the availability of staff. And only a small percentage of people are masking or taking other precautions in public despite a new wave of covid, flu, and respiratory syncytial virus infections hospitalizing and killing seniors.

In the last week of 2023 and the first two weeks of 2024 alone, 4,810 people 65 and older lost their lives to covid — a group that would fill more than 10 large airliners — according to data provided by the CDC. But the alarm that would attend plane crashes is notably absent. (During the same period, the flu killed an additional 1,201 seniors, and RSV killed 126.)

“It boggles my mind that there isn’t more outrage,” said Alice Bonner, 66, senior adviser for aging at the Institute for Healthcare Improvement. “I’m at the point where I want to say, ‘What the heck? Why aren’t people responding and doing more for older adults?’”

It’s a good question. Do we simply not care?

I put this big-picture question, which rarely gets asked amid debates over budgets and policies, to health care professionals, researchers, and policymakers who are older themselves and have spent many years working in the aging field. Here are some of their responses.

Pandemic Made Ageism Worse

Prejudice against older adults is nothing new, but “it feels more intense, more hostile” now than previously, said Karl Pillemer, 69, a professor of psychology and gerontology at Cornell University.

“I think the pandemic helped reinforce images of older people as sick, frail, and isolated — as people who aren’t like the rest of us,” he said. “And human nature being what it is, we tend to like people who are similar to us and be less well disposed to ‘the others.’”

“A lot of us felt isolated and threatened during the pandemic. It made us sit there and think, ‘What I really care about is protecting myself, my wife, my brother, my kids, and screw everybody else,’” said W. Andrew Achenbaum, 76, the author of nine books on aging and a professor emeritus at Texas Medical Center in Houston.

In an environment of “us against them,” where everybody wants to blame somebody, Achenbaum continued, “who’s expendable? Older people who aren’t seen as productive, who consume resources believed to be in short supply. It’s really hard to give old people their due when you’re terrified about your own existence.”

Although covid continues to circulate, disproportionately affecting older adults, “people now think the crisis is over, and we have a deep desire to return to normal,” said Edwin Walker, 67, who leads the Administration on Aging at the Department of Health and Human Services. He spoke as an individual, not a government representative.

The upshot is “we didn’t learn the lessons we should have,” and the ageism that surfaced during the pandemic hasn’t abated, he observed.

“Everyone loves their own parents. But as a society, we don’t value older adults or the people who care for them,” said Robert Kramer, 74, co-founder and strategic adviser at the National Investment Center for Seniors Housing & Care.

“The message to older adults is: ‘Your time has passed, give up your seat at the table, stop consuming resources, fall in line.’”

— Anne Montgomery, Health Policy Expert

Kramer thinks boomers are reaping what they have sown. “We have chased youth and glorified youth. When you spend billions of dollars trying to stay young, look young, act young, you build in an automatic fear and prejudice of the opposite.”

Combine the fear of diminishment, decline, and death that can accompany growing older, with the trauma and fear that arose during the pandemic.

“I think covid has pushed us back in whatever progress we were making in addressing the needs of our rapidly aging society. It has further stigmatized aging,” said John Rowe, 79, professor of health policy and aging at Columbia University’s Mailman School of Public Health.

“The message to older adults is: ‘Your time has passed, give up your seat at the table, stop consuming resources, fall in line,’” said Anne Montgomery, 65, a health policy expert at the National Committee to Preserve Social Security and Medicare. She believes, however, that baby boomers can “rewrite and flip that script if we want to and if we work to change systems that embody the values of a deeply ageist society.”

Integration, Not Separation, Is Needed

The best way to overcome stigma is “to get to know the people you are stigmatizing,” said G. Allen Power, 70, a geriatrician and the chair in aging and dementia innovation at the Schlegel-University of Waterloo Research Institute for Aging in Canada. “But we separate ourselves from older people so we don’t have to think about our own aging and our own mortality.”

The solution: “We have to find ways to better integrate older adults in the community as opposed to moving them to campuses where they are apart from the rest of us,” Power said. “We need to stop seeing older people only through the lens of what services they might need and think instead of all they have to offer society.”

That point is a core precept of the National Academy of Medicine’s 2022 report Global Roadmap for Healthy Longevity. Older people are a “natural resource” who “make substantial contributions to their families and communities,” the report’s authors write in introducing their findings.

Those contributions include financial support to families, caregiving assistance, volunteering, and ongoing participation in the workforce, among other things.

“When older people thrive, all people thrive,” the report concludes.

That’s a message Kramer conveys in classes he teaches at the University of Southern California, Cornell, and other institutions.

“You have far more at stake in changing the way we approach aging than I do,” he tells his students. “You are far more likely, statistically, to live past 100 than I am. If you don’t change society’s attitudes about aging, you will be condemned to lead the last third of your life in social, economic, and cultural irrelevance.”

As for himself and the baby boom generation, Kramer thinks it’s “too late” to effect the meaningful changes he hopes the future will bring.

“I suspect things for people in my generation could get a lot worse in the years ahead,” Pillemer said. “People are greatly underestimating what the cost of caring for the older population is going to be over the next 10 to 20 years, and I think that’s going to cause increased conflict.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues.

Checking the Boxes: Why Therapy Was Not Helpful

By Mia Maysack, PNN Columnist

Living with persistent pain or chronic illness is enough to push anyone to the brink of insanity. I’ve reached out for mental health assistance in the past, and either regretted it or didn’t feel it was much help at all.

I later came to the realization that therapy could only ever be what we make of it, so I decided to release the disappointment from the past and give it another wholehearted try.

I learned that the therapy process, particularly since COVID-19, is a nightmare. The isolation of the pandemic helped us recognize the importance of mental health, along with the fact that there’s a shortage of providers. It’s now nearly impossible to find a therapist.

It’s even more difficult to come across one that is accepting new patients and whatever insurance you might or might not have. I spent the better part of a year researching, making phone calls and being told no, before I finally came across a situation that seemed promising.

After providing extensive documentation exploring every aspect of my life and then playing the waiting game to get the green light from insurance, I was finally able to move forward with scheduling an appointment at a clinic. It would have been many more months before I could be seen in-person, so I settled for a virtual appointment.

I was happy to connect with a provider, who initially seemed warm and caring. Little did I realize how short lived this would be.

During our conversation, we covered the basics. I attempted to explain how anyone who lives the way that I do must experience some form of depression or sadness, but that doesn’t necessarily mean that I always feel that way. I don’t feel a need to label people as “sad” or “depressed,” for I believe there’s a wide spectrum we all exist on. We can allow ourselves to feel sad or anxious in any given moment, without necessarily committing to that experience permanently.

Prior to this therapy session, I’d been participating in a behavioral health program where a provider would call once every few weeks for a momentary check-in. Being that I had no other support at that time, I was thankful for the resource and couldn’t help but imagine what different points in my life would’ve been like had something like that been available then.

I’m under the impression this check-in option was cultivated during the pandemic in an attempt to alleviate the mental health stress that so many of us were having.  It’s more of a band-aid than anything else, but slowing the emotional bleeding can be the difference between life or death for many.

I remember having a pleasant conversation with someone who reached out. We chatted for about a half hour as they listened to some of my health-related goals, then advised me they’d have someone follow up to ensure the plan was proceeding smoothly.  

At the very last second, they requested I complete a survey -- one that I’d done countless times already: the PHQ-9 questionnaire.  It asks how you were feeling in the last two weeks and to rate your experiences on a numeric scale.  Was I tired? Feeling hopeless? Eating enough? Eating too much? Was I thinking of hurting myself?

Ending the phone call on such a note turned an otherwise enjoyable and productive conversation into a traumatic reminder of the ways I’d been struggling. Then the session was over and I was on my own again.

On the next call, I offered feedback -- mentioning the survey should come sooner in the conversation and empower the patient to choose when they’d complete it or even not take it. That should be my right and my choice.

I was advised that the survey was part of the process of getting a diagnosis. The therapist said this wasn’t so much the clinic’s way of doing things, but rather “served insurance purposes.” That rubbed me the wrong way.

Here I was, absolutely desperate for therapy, but instead of receiving actual help, I was reminded once again that the most important thing for a provider is to collect patient data. With a heavy heart, I chose to end my pursuit of counseling. It feels harmful and unsafe to be reminded that “checking the boxes” is prioritized over the quality of human life.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is a healthcare reform advocate and founder of Keepin’ Our Heads Up, a support network; Peace & Love, a life coaching practice; and Still We Rise, an organization that seeks to alleviate pain of all kinds.

Did Covid Vaccine Mandates Do More Harm Than Good?

By Dr. Rachel Gur-Arie, Arizona State University

Ending pandemics is a social decision, not scientific. Governments and organizations rely on social, cultural and political considerations to decide when to officially declare the end of a pandemic. Ideally, leaders try to minimize the social, economic and public health burden of removing emergency restrictions while maximizing potential benefits.

Vaccine policy is a particularly complicated part of pandemic decision-making, involving a variety of other complex and often contradicting interests and considerations. Although COVID-19 vaccines have saved millions of lives in the U.S., vaccine policymaking throughout the pandemic was often reactive and politicized.

A late November 2022 Kaiser Family Foundation poll found that one-third of U.S. parents believed they should be able to decide not to vaccinate their children at all. The World Health Organization and the United Nations Children’s Fund reported that between 2019 and 2021, global childhood vaccination experienced its largest drop in the past 30 years.

The Biden administration formally removed federal COVID-19 vaccination requirements for federal employees and international travelers in May 2023. Soon after, the U.S. government officially ended the COVID-19 public health emergency. But COVID-19’s burden on health systems continues globally.

I am a public health ethicist who has spent most of my academic career thinking about the ethics of vaccine policies. For as long as they’ve been around, vaccines have been a classic case study in public health and bioethics. Vaccines highlight the tensions between personal autonomy and public good, and they show how the decision of an individual can have populationwide consequences.

COVID-19 is here to stay. Reflecting on the ethical considerations surrounding the rise – and unfolding fall – of COVID-19 vaccine mandates can help society better prepare for future disease outbreaks and pandemics.

Types of Vaccine Mandates

Vaccine mandates are the most restrictive form of vaccine policy in terms of personal autonomy. Vaccine policies can be conceptualized as a spectrum, ranging from least restrictive, such as passive recommendations like informational advertisements, to most restrictive, such as a vaccine mandate that fines those who refuse to comply.

Each sort of vaccine policy also has different forms. Some recommendations offer incentives, perhaps in the form of a monetary benefit, while others are only a verbal recommendation. Some vaccine mandates are mandatory in name only, with no practical consequences, while others may trigger termination of employment upon noncompliance.

COVID-19 vaccine mandates took many forms throughout the pandemic, including but not limited to employer mandates, school mandates and vaccination certificates – often referred to as vaccine passports or immunity passports – required for travel and participation in public life.

Because of ethical considerations, vaccine mandates are typically not the first option policymakers use to maximize vaccine uptake. Vaccine mandates are paternalistic by nature because they limit freedom of choice and bodily autonomy. Additionally, because some people may see vaccine mandates as invasive, they could potentially create challenges in maintaining and garnering trust in public health. This is why mandates are usually the last resort.

However, vaccine mandates can be justified from a public health perspective on multiple grounds. They’re a powerful and effective public health intervention.

Mandates can provide lasting protection against infectious diseases in various communities, including schools and health care settings. They can provide a public good by ensuring widespread vaccination to reduce the chance of outbreaks and disease transmission overall. Subsequently, an increase in community vaccine uptake due to mandates can protect immunocompromised and vulnerable people who are at higher risk of infection.

Early in the pandemic, arguments in favor of mandating COVID-19 vaccines for adults rested primarily on evidence that COVID-19 vaccination prevented disease transmission. In 2020 and 2021, COVID-19 vaccines seemed to have a strong effect on reducing transmission, therefore justifying vaccine mandates.

COVID-19 also posed a disproportionate threat to vulnerable people, including the immunocompromised, older adults, people with chronic conditions and poorer communities. As a result, these groups would have significantly benefited from a reduction in COVID-19 outbreaks and hospitalization.

Many researchers found personal liberty and religious objections insufficient to prevent mandating COVID-19 vaccines. Additionally, decision-makers in favor of mandates appealed to the COVID-19 vaccine’s ability to reduce disease severity and therefore hospitalization rates, alleviating the pressure on overwhelmed health care facilities.

However, the emergence of even more transmissible variants of the virus dramatically changed the decision-making landscape surrounding COVID-19 vaccine mandates.

The public health intention (and ethicality) of original COVID-19 vaccine mandates became less relevant as the scientific community understood that achieving herd immunity against COVID-19 was probably impossible because of uneven vaccine uptake, and breakthrough infections among the vaccinated became more common. Many countries like England and various states in the U.S. started to roll back COVID-19 vaccine mandates.

With the rollback and removal of vaccine mandates, decision-makers are still left with important policy questions: Should vaccine mandates be dismissed, or is there still sufficient ethical and scientific justification to keep them in place?

Vaccines are lifesaving medicines that can help everyone eligible to receive them. But vaccine mandates are context-dependent tools that require considering the time, place and population they are deployed in.

Though COVID-19 vaccine mandates are less of a publicly pressing issue today, many other vaccine mandates, particularly in schools, are currently being challenged. I believe this is a reflection of decreased trust in public health authorities, institutions and researchers – resulting in part from tumultuous decision-making during the COVID-19 pandemic.

Engaging in transparent and honest conversations surrounding vaccine mandates and other health policies can help rebuild and foster trust in public health institutions and interventions.

Rachel Gur-Arie, PhD, is an assistant professor with Edson College of Nursing and Health Innovation at Arizona State University. Her expertise lies at the intersection of ethics, global health and policy. Prior to joining ASU, Rachel was a Hecht-Levi postdoctoral Fellow, focused on ethics and infectious disease, at Johns Hopkins University and the University of Oxford. She completed her doctorate in health systems management and served as a Fulbright Scholar at Ben-Gurion University of the Negev in Israel.

This article originally appeared in The Conversation and is republished with permission.

Massage Therapists Ease Pain of Hospice Patients — But Are Hard to Find

By Kate Ruder, KFF Health News

Ilyse Streim views massage for people in hospice care as “whispering to the body through touch.”

“It’s much lighter work. It’s nurturing. It’s slow,” said Streim, a licensed massage therapist.

Massage therapy for someone near the end of life looks and feels different from a spa treatment. Some people stay clothed or lie in bed. Others sit up in their wheelchairs. Streim avoids touching bedsores and fresh surgery wounds and describes her work as “meditating and moving at the same time.”

She recalled massaging the shoulders, hands, and feet of one client as he sat in his favorite recliner and watched baseball on TV in the final weeks of his life.

“When you’re dying and somebody touches you without expectation of anything in return, you just get to be,” said Streim.

Massage therapists like Streim, who specializes in working with people who are dying or have an advanced form of cancer or other illness, are rare. Fewer than 1% of therapists specialize in hospice or palliative care massage, according to research by the American Massage Therapy Association, although many more may periodically offer massage for hospice patients.

Streim has a private practice in Lafayette, Colorado and her clients pay her out-of-pocket, as Medicare and private insurance typically don’t cover massage therapy. She also volunteers as a hospice massage therapist four hours a month.

It’s common for hospice organizations to use volunteer therapists for treatments, though some massage therapists, with physicians backing them, are pushing for paid positions as part of medical teams working alongside nurses and social workers.

In the hospice unit at Palo Alto VA Medical Center, in Palo Alto, California, for example, massage therapists have been integral members of the multidisciplinary team for decades, said VJ Periyakoil, a professor of medicine at Stanford University and the founding director of its palliative care education and training program.

The covid-19 pandemic made the recruitment of specialists for this intimate work, both paid and volunteer, more difficult, as the pool of massage therapists shrank amid school closures and exits from the profession. There are up to 10% fewer massage therapists today than before the pandemic, according to Les Sweeney, president of Associated Bodywork & Massage Professionals.

“It’s still hard for us to hire and recruit therapists,” said Kerry Jordan, operations director at Healwell, a nonprofit that trains and employs massage therapists to work in hospitals in the Washington, D.C., area.

‘We Need to Get More Therapists’

For three weeks in April 2020, licensed massage therapist Cindy Spence, who works at Faith Presbyterian Hospice in Dallas, could not massage patients due to the state’s lockdown orders. Then, the state granted an allowance for massage therapists like her, working in medical settings under supervision, to resume giving massages. But it took several months for many therapists to return to work, and some didn’t return at all, Spence said.

“The pandemic was not kind to massage therapists,” Spence said. “And so we have lost a lot of people like me who are of an age and experience level that would really be called to and suitable” for oncology, hospice, and palliative massage.

“We need to get more therapists trained,” she said. She described receiving several calls each month from people who have found her name online. It has become harder since covid to find a therapist to refer them to, Spence said.

At TRU Community Care, which operates in several locations in Colorado, Volunteer Services Supervisor Wendy Webster said massages are a top request from patients and their families, but they’re limited in how many sessions they can offer, with only two volunteer massage therapists. (A third volunteer did not return after the pandemic.)

Finding new massage therapist volunteers is challenging, said Webster, in part because they can earn money in other settings and “they’re coming to us for free.” Thirty years ago, TRU Community Care’s nonprofit status was the norm, but now the majority of hospices are for-profit, with growing investment from private equity.

Despite that shift, hospices still rely heavily on volunteers. Medicare pays for at least six months of hospice for a patient on the condition that providers use volunteers for at least 5% of the patient-care hours worked by paid staff and contractors. Sometimes, those volunteer hours are filled by massage therapists.

“All hospices, not-for-profit or for profit alike, should aim to include medically-trained massage therapists as part of best holistic care,” Hunter Groninger, a professor of medicine at Georgetown University who directs palliative care at MedStar Washington Hospital Center in Washington, D.C., wrote in an email. Employing these specialists is beneficial and does not diminish the important service of volunteers, particularly in end-of-life care, he added.

Benefits of Massage

More studies on the impact of specialized massage could enact changes in the field, said Cal Cates, founder and executive director of Healwell, which, since 2009, has trained 500 therapists in hospital-based and oncology massage, as well as in how to work collaboratively with doctors and nurses.

In a recent clinical trial of 387 patients in palliative care at MedStar, including some nearing the end of their lives, Groninger, Cates, Jordan, and other co-authors found that massage therapy improved quality of life.

Despite new research on the benefits of massage, Cates said, many hospices bring on volunteers who don’t have advanced training, because hospices may not know that specialized training — such as the kind Healwell offers — exists.

Streim, who paid for her own classes in oncology and lymphatic massage, said that investment in education qualified her for a six-year career as an oncology massage therapist at Good Samaritan Medical Center’s Center for Integrative Medicine in Lafayette and later her private practice. She teaches classes in adapting massage for the elderly and those with illnesses at Boulder Massage Therapy Institute. In her 39 years as a therapist, Streim has done it all: volunteer, staff, entrepreneur, teacher.

Like Streim, Spence has continually redefined her role. She began in private practice before becoming an employee of a large hospice agency in which she traveled across nine counties in Texas, giving thousands of massages to people dying in their homes, assisted living communities, and skilled nursing homes. Today, at Faith Presbyterian Hospice, she is one of three licensed massage therapists on staff and fully integrated as an employee of the organization, which has more than 100 patients.

“Those of us who do this work have made big investments in our profession and I’m glad to see that we can be paid for it,” she said.

Spence collects data on how patients rate their pain on a scale of 1 to 10 before and after a massage. Most fall asleep during the massage, which she takes as an indication their pain has lessened or they became more relaxed. Of those who stay awake, almost all say their pain subsided significantly or went away completely.

That kind of positive engagement with providers is more urgent than ever since the pandemic, Groninger said. Spence agreed: “The pandemic taught us all, in a very painful way, what it’s like to be deprived of human touch and human connections.”

Sometimes the nursing staff at Faith Presbyterian will roll a bed out onto the patio so a patient can hear the sounds of nature and the fountain gurgling during Spence’s massage. There is more teasing and laughter than she would have imagined. For patients unable to speak, Spence watches their reactions carefully: a deep exhalation or the face and body softening. Sometimes it’s tears running down their cheeks.

“It’s profound, helping someone find safe breaths along this very difficult dying journey,” she said.

KFF Health News is a national newsroom that produces in-depth journalism about health issues.

100,000 ‘Unnecessary’ Hospital Procedures Performed in First Year of Pandemic

By Pat Anson, PNN Editor

U.S. hospitals performed over 100,000 “low-value” procedures on Medicare patients in the first year of the Covid pandemic, including tens of thousands of spinal surgeries and knee arthroscopies, according to a recent study by the Lown Institute, a non-profit that seeks to reduce the use of unnecessary and ineffective medical treatments.

In 2020, no vaccines were available, the elderly were particularly vulnerable to the Covid-19 virus, and intensive care units were filled with infected patients. Yet many hospitals continued to perform questionable elective procedures at the same rate they did in 2019.

“You couldn’t go into your local coffee shop, but hospitals brought people in for all kinds of unnecessary procedures,” Vikas Saini, MD, president of the Lown Institute, said in a statement. “The fact that a pandemic barely slowed things down shows just how deeply entrenched overuse is in American healthcare.”

Lown researchers analyzed Medicare claims from U.S. hospitals for eight procedures that the non-profit considers to have “little to no clinical benefit” and are potentially harmful.  

Coronary stents were the most overused procedure, with over 45,000 balloon angioplasties performed to open up blocked arteries. The Lown Institute has long maintained that stents are unnecessary and risky in patients with stable heart disease.

Two spinal surgeries also made the list: 13,541 spinal fusions and 16,553 vertebroplasties were performed on older patients. In vertebroplasty, bone cement is injected into fractured vertebrae to stabilize the spine; while spinal fusions are used to join two or more vertebrae together to prevent them from moving and causing more pain. The Lown Institute considers fusions and vertebroplasties inappropriate for patients with low back pain and osteoporosis.

Nearly 1,600 knee arthroscopies were also performed in 2020, a type of “keyhole” surgery in which a small incision is made in the knee to diagnose and repair ligaments damaged by overuse or osteoarthritis. Recent independent studies have found arthroscopic surgeries provide only temporary relief from knee pain and do not improve function long term.

“There are certain things, certain practices that are just insane. You shouldn’t be doing this. Nobody should pay for this,” said Saini.

Highland Hospital in Rochester, New York was rated as the top hospital in the country for avoiding overuse procedures. Richardson Medical Center in Rayville, Louisiana was ranked as the worst hospital.

The American Hospital Association disputed Lown's ranking system, calling it misleading.

"Throughout the pandemic, but especially in the early months, many nonessential services and procedures were put off due to government restrictions or voluntary actions from hospitals to make room for massive surges of COVID-19 patients," Aaron Wesolowski, AHA's VP of policy research, said in a statement to Becker’s Hospital Review.

"Studies have shown that these delays or sometimes even cancelations in nonemergent care have had some negative outcomes on the health and well-being of patients, who continue to show up at the hospital sicker and with more advanced illnesses. Many of these services may alleviate patients' pain or provide other help to patients. Lown may define these services as 'low value,' but they can be of tremendous value to the patients who receive them."

Cognitive Problems Persist in Patients with Long Covid

By Pat Anson, PNN Editor

About 70% of people with long covid have concentration and memory problems several months after their initial infection with Covid-19, according to new research at the University of Cambridge. The severity of the symptoms appears to be linked to the level of fatigue and headache people experienced during their initial illness.

Long covid is a poorly understood disorder characterized by body pain, fatigue, cognitive impairment and difficulty sleeping. About a third of people infected with coronavirus develop symptoms that can last for many months.   

In their study of 181 long covid patients, published in the journal Frontiers in Aging Neuroscience, researchers found that 78% reported difficulty concentrating, 69% had brain fog, 68% experienced forgetfulness, and 60% had trouble finding the right word to use in speech. They also performed poorly in cognitive tests, with significantly lower ability to remember words and pictures.

“This is important evidence that when people say they’re having cognitive difficulties post-COVID, these are not necessarily the result of anxiety or depression. The effects are measurable - something concerning is happening,” said co-author Muzaffer Kaser, PhD, a psychiatrist and researcher at the University of Cambridge. “Memory difficulties can significantly affect people’s daily lives, including the ability to do their jobs properly.”

The findings are further evidence that Covid-19 will have a lasting impact around the world, long after the pandemic subsides. Cambridge researchers say their study supports other findings that suggest society will face a “long tail” of workforce illness due to long covid.

“Long covid has received very little attention politically or medically. It urgently needs to be taken more seriously, and cognitive issues are an important part of this. When politicians talk about ‘Living with COVID’ – that is, unmitigated infection, this is something they ignore. The impact on the working population could be huge,” said senior author Lucy Cheke, PhD, a psychologist and lecturer at Cambridge.

To help understand the cause of the cognitive problems, Cheke and her colleagues investigated other symptoms that might be linked. They found that people who experienced fatigue and neurological symptoms, such as dizziness and headache, during their initial illness were more likely to have cognitive issues later on.

Participants were assigned to carry out multiple tasks to assess their decision-making and memory. These included remembering words on a list, and remembering which two images appeared together. The results revealed a consistent pattern of memory problems in people with long covid -- problems that were more pronounced in those whose initial neurological symptoms were more severe.

“People think that long covid is ‘just’ fatigue or a cough, but cognitive issues are the second most common symptom - and our data suggest this is because there is a significant impact on the ability to remember. There is growing evidence that COVID-19 impacts the brain, and our findings reflect that,” said Cheke.

Study participants were recruited between October 2020 and March 2021, when the Alpha variant and the original form of SARS-CoV-2 were still the dominant forms of the virus.

Very few of the patients had symptoms severe enough to be admitted to a hospital. But even among those who were not hospitalized, researchers found that people with severe initial symptoms were more likely to develop long covid than those with mild symptoms. They also found that people over 30 were more likely to have severe ongoing symptoms than younger ones.

“Infection with the virus that causes COVID-19 can lead to inflammation in the body, and this inflammation can affect behaviour and cognitive performance in ways we still don’t fully understand, but we think are related to an early excessive immune response,” said Kaser.

As is often the case with chronic illness, half of the patients with long covid reported difficulty getting medical providers to take their symptoms seriously, perhaps because cognitive symptoms do not get the same attention as respiratory problems.

The Cambridge study currently has no data on long covid associated with the Delta or Omicron variants of coronavirus, although new patients are being recruited to fill that void. The researchers say more studies are needed to understand the complex effects of Covid on the brain, cognition and mental health.

One way to reduce your risk of long covid is to get vaccinated. A UK study last year found that people who received the Moderna, Pfizer or AstraZeneca vaccines had significantly lower risk of an infection that turns into long covid.

A Disabled Activist Speaks Out About Feeling ‘Disposable’

By Rachel Scheirer, Kaiser Health News

In early January, one of the country’s top public health officials went on national television and delivered what she called “really encouraging news” on covid-19: A recent study showed that more than three-fourths of fatalities from the omicron variant of the virus occurred among people with several other medical conditions.

“These are people who were unwell to begin with,” said Dr. Rochelle Walensky, director of the Centers for Disease Control and Prevention.

Walensky’s remarks infuriated Americans with disabilities, who say the pandemic has highlighted how the medical establishment — and society at large — treats their lives as expendable. Among those leading the protest was San Franciscan Alice Wong, an activist who took to Twitter to denounce Walensky’s comments as “ableism.” Walensky later apologized.

Wong, 47, moves and breathes with the aid of a power wheelchair and a ventilator because of a genetic neuromuscular condition. Unable to walk from around age 7, she took refuge in science fiction and its stories of mutants and misunderstood minorities.

Her awakening as an activist happened in 1993, when she was in college in Indiana, where she grew up. Indiana’s Medicaid program had paid for attendants who enabled Wong to live independently for the first time, but state cuts forced her to switch schools and move back in with her parents.

Wong relocated to the Bay Area for graduate school, choosing a state that would help her cover the cost of hiring personal care attendants. She has since advocated for better public health benefits for people who are poor, sick, or older or have disabilities.

Eddie Hernandez for KHN

The founder of the Disability Visibility Project, which collects oral histories of Americans with disabilities in conjunction with StoryCorps, Wong has spoken and written about how covid and its unparalleled disruption of lives and institutions have underscored challenges that disabled people have always had to live with. She has exhorted others with disabilities to dive into the political fray, rallying them through her podcast, Twitter accounts with tens of thousands of followers, and a nonpartisan online movement called #CriptheVote.

Wong is nocturnal — she typically starts working at her computer around 9 p.m. On a recent evening, she spoke with KHN via Zoom from her condo in the city’s Mission District, where she lives with her parents, immigrants from Hong Kong, and her pet snail, Augustus. The interview has been edited for length and clarity.

Q: Why do you often refer to people with disabilities as oracles?

Disabled people have always lived on the margins. And people on the margins really notice what’s going on, having to navigate through systems and institutions, not being understood. When the pandemic first hit, the public was up in arms about adjusting to life at home — the isolation, the lack of access. These are things that many disabled and chronically ill people had experienced. Disabled people had been trying forever to advocate for online learning, for accommodations in the workplace. The response was: “Oh, we don’t have the resources. It’s just not possible.”

But with the majority inconvenienced, it happened. Suddenly people actually had to think about access, flexibility. That is ableism, where you don’t think disabled people exist, you don’t think sick people exist.

Q: Have you noticed that kind of thinking more since the pandemic began?

Well, yes, in the way our leaders talk about the risks, the mortality, about people with severe illnesses, as if they’re a write-off. I am so tired of having to assert myself. What kind of world is this where we have to defend our humanity? What is valued in our society? Clearly, someone who can walk and talk and has zero comorbidities. It is an ideology, just like white supremacy. All our systems are centered around it. And so many people are discovering that they’re not believed by their doctors, and this is something that a lot of disabled and sick people have long experienced.

We want to believe in this mythology that everybody’s equal. My critique is not a personal attack against Dr. Walensky; it’s about these institutions that historically devalued and excluded people. We’re just trying to say, “Your messaging is incredibly harmful; your decisions are incredibly harmful.”

Q: Which decisions?

The overemphasis on vaccinations versus other mitigation methods. That is very harmful because people still don’t realize, yeah, there are people with chronic illnesses who are immunocompromised and have other chronic conditions who cannot get vaccinated. And this back and forth, it’s not strong or consistent about mask mandates.

With omicron, there is this huge pressure to reopen schools, to reopen businesses. Why don’t we have free tests and free masks? You’re not reaching the poorest and the most vulnerable who need these things and can’t afford them.

Q: How has your life changed during the pandemic?

For the last two years, I have not been outside except to get my vaccinations.

Q: Because you’re so high-risk?

Yeah. I have delayed so many things for my own health. For example, physiotherapy. I don’t get lab tests. I’ve not been weighed in over two years, which is a big deal for me because I should be monitoring my weight. These are things I’ve put on hold. I don’t see myself going in to see my doctor any time this year. Everything’s been online — it’s in a holding pattern.

How long can I take this? I really don’t know. Things might get better, or they might get worse. So many things disabled people have been saying have been dismissed, and that’s been very disheartening.

Q: What kinds of things?

For example, in California, it was almost this time last year when they removed the third tier for covid vaccine priority. I was really looking forward to getting vaccinated. I was thinking for sure that I was part of a high-risk group, that I’d be prioritized. And then the governor announced that he was eliminating the third tier that I was a part of in favor of an age-based system. For young people who are high-risk, they’re screwed. It just made me so angry.

These kinds of decisions and values and messages are saying that certain people are disposable. They’re saying I’m disposable. No matter what I produce, what value I bring, it doesn’t matter, because on paper I have all these comorbidities and I take up resources. This is wrong, it’s not equity, and it’s not justice. It took a huge community-based effort last year to get the state to backtrack. We’re saying, “Hey we’re here, we exist, we matter just as much as anyone else.”

Q: Do you think there’s any way this pandemic has been positive for disabled people?

I hope so. There’s been a lot of mutual aid efforts, you know, people helping each other. People sharing information. People organizing online. Because we can’t wait for the state. These are our lives on the line. Things were a little more accessible in the last two years, and I say a little because a lot of universities and workplaces are going backward now. They’re doing away with a lot of the hybrid methods that really gave disabled people a chance to flourish.

Q: You mean they’re undoing things that helped level the playing field?

Exactly. People who are high-risk have to make very difficult choices now. That’s really unfortunate. I mean, what is the point of this if not to learn, to evolve? To create a new normal. I can’t really see that yet. But I still have some hope.

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

Covid Made Healthcare Even More Difficult for People with Chronic Illness

By Roger Chriss, PNN Columnist

As the U.S. enters its third year of the pandemic, Covid is changing chronic illness care in important ways. Not only is long Covid being recognized as a new chronic illness, but the pandemic’s impact on hospitals, drugs and medical supplies, and everyday life for people with chronic illnesses is growing.

The CDC recognized the problem last year. Not only are people with chronic illnesses like diabetes, heart disease, chronic obstructive pulmonary disease (COPD) and kidney disease at greater risk of severe illness from Covid-19, the CDC says the pandemic has “raised concerns about safely accessing health care and has reduced the ability to prevent or control chronic disease.”

Hospitals have repeatedly had to delay routine care in the past two years. As hospitals run short on staff and beds, people whose medical conditions require regular care are struggling to keep appointments. NBC News reported last month that “prolonged lack of access to medical care because of Covid surges is having an outsize effect on patient care.”

The American College of Surgeons is warning that delayed elective surgeries “can lead to more complicated operations and longer recovery times because disease can progress during the delay.” Moreover, delays in cancer screening can lead to further progression of the disease and more complex surgeries.

Recently the American Red Cross put out an urgent call for blood donors because the pandemic and winter weather have combined to force the cancellation of hundreds of blood drives, creating the worst blood shortage in over decade. The “blood crisis” is so severe that doctors have to decide which patients will get blood transfusions and who will have to wait.

The pandemic has also impacted the drug supply for chronic illness. False claims about hydroxychloroquine being an effective treatment for Covid in early 2020 led to shortages for people with lupus and other autoimmune disorders who need the drug, which took many months to correct. In 2021, claims the anti-parasitic drug ivermectin could also treat Covid led to shortages.

Now in early 2022 the antibody drug Evusheld, which can help protect immunosuppressed people against COVID-19, is in short supply. NPR reported Evusheld is so hard to get that some hospitals are selecting patients by lottery.

Medical supplies are still difficult to find. While some people protest any form of mandatory face covering, masks have been a way of life for immunocompromised people for many years. A high-quality mask like a N95 can literally save lives, and such masks are still in short supply. The same for nitrile gloves and other simple medical supplies that may be essential for at-home care.

Covid is also impacting everyday life. People with chronic illness, in particular those with compromised immune systems, do not have the luxury of being “done with Covid.” The ongoing presence of a viral pathogen will limit them for the foreseeable future. Even when the omicron Covid surge starts to wane, they will need to keep using high-quality masks, weighing risks when going out, and tracking possible exposure.  

"There is a casual acceptance that the pandemic will turn into something endemic, an inevitability that ‘everyone’ will get COVID eventually,” disability rights advocate Alice Wong told NPR. “Leaders, medical professionals and public health experts have said something along those lines with zero acknowledgement that people will still die and those deaths will be disproportionately from high-risk groups.”

It has become trite to say that Covid mostly affects people with “comorbidities.” It’s important to note that comorbidities are found in the vast majority of people over 30, and that chronic illness is a fact of life for some people that cannot be cured. Covid impacts their lives in significant ways. Hopefully, public health officials can come up with new approaches that don’t require the chronically ill to risk more and endure more as the rest of the country tries to get back to normal.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.  

Covid Lockdowns Hurt Women with Chronic Pain More Than Men

By Pat Anson, PNN Editor

Covid-19 lockdowns appear to have had a bigger impact on women living with chronic pain than men, according to a new study in Europe. Researchers say female patients experienced greater pain severity, as well as more stress, anxiety and financial uncertainty compared to men.

 “Our research suggests that the pandemic may have exacerbated chronic pain problems and some gendered inequalities,” says lead author Kordula Lang-Illievich, MD, from the Medical University of Graz in Austria. “With chronic pain affecting around 20% of the EU adult population, it is vital to understand how people living with chronic pain are being affected by the pandemic and to develop pain management interventions that clearly target women.”

To investigate how the first pandemic lockdown impacted chronic pain patients in Germany, Austria, and Switzerland, researchers invited adults taking part in self-help groups who experienced pain for at least one year to complete an online survey in July 2020. Of the 579 people who responded, over 75% were women.

Participants were asked to rate their pain levels before and during the lockdown using the 0-100 Visual Analogue Scale (VAS), as well as their pain management, physical activity, social and psychological health.

While the average pain intensity score before the lockdown was similar for men (46.5 on the VAS scale) and women (45), the increase in pain levels during the lockdown was much lower in men (0.8) than women (3.9).

“Our data clearly show that women experienced a higher aggravation of chronic pain during the first lockdown,” said Lang-Illievich. “This is likely to reflect the disproportionate impact of lockdowns on women, especially the extra caregiving responsibilities, rise in domestic violence, and their increased vulnerability to anxiety, depression and acute stress — all of which would be expected to impact pain symptoms.”

There are several limits to the study, including the over-representation of young women, single participants, and those with higher education, as well as the reliance on self-reporting. The research is being presented at Euroanaesthesia, the annual meeting of the European Society of Anaesthesiology and Intensive Care.

More Americans Using Cannabis to Treat Chronic Pain Than Opioids

By Pat Anson, PNN Editor

Twice as many Americans are now using cannabis or cannabidiol (CBD) to manage their chronic pain than opioid medication, according to a new Harris Poll that found significant changes in pain management in the U.S. since the onset of the Covid-19 pandemic.

Over-the-counter pain relievers are used by over half (53%) of those surveyed, followed by cannabis products (16%) and non-opioid pain relievers (11%). Opioid pain medication is being used by only 8% of Americans with chronic pain. Non-drug treatments such exercise, heat/ice and healthy eating are also being widely used to relieve pain.

TREATMENTS USED TO MANAGE CHRONIC PAIN

SOURCE: SAMUELI FOUNDATION

The online survey of 2,063 adults was conducted last month on behalf of the Samueli Foundation. About half the participants said they were currently experiencing chronic pain.

One of the more surprising results is that young adults, aged 18 to 34, are more likely to have chronic pain than older ones (65% vs. 52% of those aged 35 and older).

“It is surprising, but we do know from other research that younger people are less healthy overall than older adults were at their age, so the higher prevalence of pain may be related to that. It seems that younger generations are facing health issues that were not experienced by older generations, causing them to be sicker and in more pain at a younger age,” said Wayne Jonas, MD, executive director of Integrative Health Programs at Samueli Foundation.

“There are a number of factors that could be at play here – and most of them can be attributed to lifestyle factors. Things like a poor diet, a lack of exercise, the growing pace of change and stress and very little self-care can lead to issues with a person’s health – physically, mentally, and emotionally. Chronic pain is a whole person issue with stress and social isolation contributing to its perpetuation. This is an issue that needs to be addressed in this population to ensure that as they age, their health doesn’t become precipitously worse.”

More than one in five young adults who have chronic pain (22%) said they use cannabis and/or CBD oil for pain, and they are twice as likely to do so compared to those aged 45 and older (11%).

“I think it’s clear that young people are looking for ways to manage their pain on their own – through self-care. And CBD and cannabis products are increasingly available and legal. People are feeling like they need to find their own ways to manage their pain because the care provided them may be lacking,” said Jonas, a clinical professor of Family Medicine at Georgetown University School of Medicine and former director of the National Institute of Health’s Office of Alternative Medicine.

The survey found that most adults with chronic pain don’t feel that healthcare providers are giving them adequate information on how to manage their pain. Nearly 80% wished their pain was taken more seriously by providers and 68% wished they had more information about how to treat chronic pain.

That lack of information – and no doubt the decreasing availability of opioids – has led to some experimentation. Two-thirds of Americans with chronic pain (66%) say they have changed their pain management since the pandemic began, such as using more OTC pain relievers and cannabis products. There is also more willingness to use non-drug treatments, such as exercise, healthier eating, massage, physical therapy, and mindfulness or meditation to reduce stress.

About 1 in 4 Americans say stress, anxiety and lack of sleep made their chronic pain worse during the pandemic. The vast majority of people in chronic pain (83%) say their quality of life would greatly improve if they were better able to manage it.

“This should be a wake-up call to physicians that their patients are looking for more information from them about managing their chronic pain, especially for non-drug approaches.” said Jonas.