Despite Controversies, Many Older People Have Faith in Vaccines

By Paula Span, KFF Health News

Kim Beckham, an insurance agent in Victoria, Texas, had seen friends suffer so badly from shingles that she wanted to receive the first approved shingles vaccine as soon as it became available, even if she had to pay for it out-of-pocket.

Her doctor and several pharmacies turned her down because she was below the recommended age at the time, which was 60. So, in 2016, she celebrated her 60th birthday at her local CVS.

“I was there when they opened,” Beckham recalled. After getting her Zostavax shot, she said, “I felt really relieved.” She has since received the newer, more effective shingles vaccine, as well as a pneumonia shot, an RSV vaccine to guard against respiratory syncytial virus, annual flu shots and all recommended covid-19 vaccinations.

Some older people are really eager to be vaccinated.

Robin Wolaner, 71, a retired publisher in Sausalito, California, has been known to badger friends who delay getting recommended shots, sending them relevant medical studies. “I’m sort of hectoring,” she acknowledged.

Deana Hendrickson, 66, who provides daily care for three young grandsons in Los Angeles, sought an additional MMR shot, though she was vaccinated against measles, mumps, and rubella as a child, in case her immunity to measles had waned.

For older adults who express more confidence in vaccine safety than younger groups, the past few months have brought welcome research. Studies have found important benefits from a newer vaccine and enhanced versions of older ones, and one vaccine may confer a major bonus that nobody foresaw.

The new studies are coming at a fraught political moment. The nation’s health secretary, Robert F. Kennedy Jr., has long disparaged certain vaccines, calling them unsafe and saying that the government officials who regulate them are compromised and corrupt.

On June 9, Kennedy fired a panel of scientific advisers to the Centers for Disease Control and Prevention, and later replaced them with some who have been skeptical of vaccines. But so far, Kennedy has not tried to curb access to the shots for older Americans.

The evidence that vaccines are beneficial remains overwhelming.

The phrase “Vaccines are not just for kids anymore” has become a favorite for William Schaffner, an infectious diseases specialist at Vanderbilt University Medical Center.

“The population over 65, which often suffers the worst impact of respiratory viruses and others, now has the benefit of vaccines that can prevent much of that serious illness,” he said.

Vaccines Reduce Hospitalizations

Take influenza, which annually sends from 140,000 to 710,000 people to hospitals, most of them seniors, and is fatal to 10% of hospitalized older adults. 

For about 15 years, the CDC has approved several enhanced flu vaccines for people 65 and older. More effective than the standard formulation, they either contain higher levels of the antigen that builds protection against the virus or incorporate an adjuvant that creates a stronger immune response. Or they’re recombinant vaccines, developed through a different method, with higher antigen levels.

In a meta-analysis in the Journal of the American Geriatrics Society, “all the enhanced vaccine products were superior to the standard dose for preventing hospitalizations,” said Rebecca Morgan, a health research methodologist at Case Western Reserve University and an author of the study.

Compared with the standard flu shot, the enhanced vaccines reduced the risk of hospitalization from the flu in older adults, by at least 11% and up to 18%. The CDC advises adults 65 and older to receive the enhanced vaccines, as many already do.

More good news: Vaccines to prevent respiratory syncytial virus in people 60 and older are performing admirably.

RSV is the most common cause of hospitalization for infants, and it also poses significant risks to older people. “Season in and season out,” Schaffner said, “it produces outbreaks of serious respiratory illness that rivals influenza.”

Because the FDA first approved an RSV vaccine in 2023, the 2023-24 season provided “the first opportunity to see it in a real-world context,” said Pauline Terebuh, an epidemiologist at Case Western Reserve School of Medicine and an author of a recent study in the journal JAMA Network Open.

In analyzing electronic health records for almost 800,000 patients, the researchers found the vaccines to be 75% effective against acute infection, meaning illness that was serious enough to send a patient to a health care provider.

The vaccines were 75% effective in preventing emergency room or urgent care visits, and 75% effective against hospitalization, both among those ages 60 to 74 and those older.

Immunocompromised patients, despite having a somewhat lower level of protection from the vaccine, will also benefit from it, Terebuh said. As for adverse effects, the study found a very low risk for Guillain-Barré syndrome, a rare condition that causes muscle weakness and that typically follows an infection, in about 11 cases per 1 million doses of vaccine. That, she said, “shouldn’t dissuade people.”

The CDC now recommends RSV vaccination for people 75 and older, and for those 60 to 74 if they’re at higher risk of severe illness (from, say, heart disease).

As data from the 2024-25 season becomes available, researchers hope to determine whether the vaccine will remain a one-and-done, or whether immunity will require repeated vaccination.

People 65 and up express the greatest confidence in vaccine safety of any adult group, a KFF survey found in April. More than 80% said they were “very “or “somewhat confident” about MMR, shingles, pneumonia, and flu shots.

Although the covid vaccine drew lower support among all adults, more than two-thirds of older adults expressed confidence in its safety.

Shingles Vaccine Reduces Dementia Risk

Even skeptics might become excited about one possible benefit of the shingles vaccine: This spring, Stanford researchers reported that over seven years, vaccination against shingles reduced the risk of dementia by 20%, a finding that made headlines.

Biases often undermine observational studies that compare vaccinated with unvaccinated groups. “People who are healthier and more health-motivated are the ones who get vaccinated,” said Pascal Geldsetzer, an epidemiologist at the Knight Initiative for Brain Resilience at Stanford and lead author of the study.

“It’s hard to know whether this is cause and effect,” he said, “or whether they’re less likely to develop dementia anyway.”

So the Stanford team took advantage of a “natural experiment” when the first shingles vaccine, Zostavax, was introduced in Wales. Health officials set a strict age cutoff: People who turned 80 on or before Sept. 1, 2013, weren’t eligible for vaccination, but those even slightly younger were eligible.

In the sample of nearly 300,000 adults whose birthdays fell close to either side of that date, almost half of the eligible group received the vaccine, but virtually nobody in the older group did.

“Just as in a randomized trial, these comparison groups should be similar in every way,” Geldsetzer explained. A substantial reduction in dementia diagnoses in the vaccine-eligible group, with a much stronger protective effect in women, therefore constitutes “more powerful and convincing evidence,” he said.

The team also found reduced rates of dementia after shingles vaccines were introduced in Australia and other countries. “We keep seeing this in one dataset after another,” Geldsetzer said.

In the United States, where a more potent vaccine, Shingrix, became available in 2017 and supplanted Zostavax, Oxford investigators found an even stronger effect.

By matching almost 104,000 older Americans who received a first dose of the new vaccine (full immunization requires two) with a group that had received the earlier formulation, they found delayed onset of dementia in the Shingrix group.

How a shingles vaccine might reduce dementia remains unexplained. Scientists have suggested that viruses themselves may contribute to dementia, so suppressing them could protect the brain. Perhaps the vaccine revs up the immune system in general or affects inflammation.

“I don’t think anybody knows,” said Paul Harrison, a psychiatrist at Oxford and a senior author of the study. But, he added, “I’m now convinced there’s something real here.”

Shingrix, now recommended for adults over 50, is 90% effective in preventing shingles and the lingering nerve pain that can result. In 2021, however, only 41% of adults 60 and older had received one dose of either shingles vaccine.

A connection to dementia will require further research, and Geldsetzer is trying to raise philanthropic funding for a clinical trial.

And “if you needed another reason to get this vaccine,” Schaffner said, “here it is.”

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

Kennedy’s HHS Sent Congress ‘Junk Science’ To Defend Vaccine Changes

By Jackie Fortiér, KFF Health News

A document the Department of Health and Human Services sent to lawmakers to support Secretary Robert F. Kennedy Jr.’s decision to change U.S. policy on covid vaccines cites scientific studies that are unpublished or under dispute and mischaracterizes others.

One health expert called the document “willful medical disinformation” about the safety of covid vaccines for children and pregnant women.

“It is so far out of left field that I find it insulting to our members of Congress that they would actually give them something like this. Congress members are relying on these agencies to provide them with valid information, and it’s just not there,” said Mark Turrentine, a professor of obstetrics and gynecology at Baylor College of Medicine.

Kennedy, who was an anti-vaccine activist before taking a role in the Trump administration, announced May 27 that the Centers for Disease Control and Prevention would no longer recommend covid vaccines for pregnant women or healthy children, bypassing the agency’s formal process for adjusting its vaccine schedules for adults and kids.

The announcement, made on the social platform X, has been met with outrage by many pediatricians and scientists.

The HHS document meant to support Kennedy’s decision, obtained by KFF Health News, was sent to members of Congress who questioned the science and process behind his move, according to one federal official who asked not to be identified because he wasn’t authorized to discuss the matter publicly.

The document has not been posted on the HHS website, though it is the first detailed explanation of Kennedy’s announcement from the agency.

Titled “Covid Recommendation FAQ,” the document distorts some legitimate studies and cites others that are disputed and unpublished, medical experts say.

HHS director of communications Andrew Nixon told KFF Health News, “There is no distortion of the studies in this document. The underlying data speaks for itself, and it raises legitimate safety concerns. HHS will not ignore that evidence or downplay it. We will follow the data and the science.”

HHS did not respond to a request to name the author of the document.

‘RFK Jr.’s Playbook’

One of the studies the HHS document cites is under investigation by its publisher regarding “potential issues with the research methodology and conclusions and author conflicts of interest,” according to a link on the study’s webpage.

“This is RFK Jr.’s playbook,” said Sean O’Leary, chair of the Committee on Infectious Diseases for the American Academy of Pediatrics and an assistant professor of pediatrics at the University of Colorado School of Medicine. “Either cherry-pick from good science or take junk science to support his premise — this has been his playbook for 20 years.”

Another study cited in the document is a preprint that has not been peer-reviewed. Under the study’s title is an alert that “it reports new medical research that has yet to be evaluated and so should not be used to guide clinical practice.” Though the preprint was made available a year ago, it has not been published in a peer-reviewed journal.

The FAQ supporting Kennedy’s decision claims that “post-marketing studies” of covid vaccines have identified “serious adverse effects, such as an increased risk of myocarditis and pericarditis” — conditions in which the heart’s muscle or its covering, the pericardium, suffer inflammation.

False claims that the 2024 preprint showed myocarditis and pericarditis only in people who received a covid vaccine, and not in people infected with covid, circulated on social media. One of the study’s co-authors publicly rejected that idea, because the study did not compare outcomes between people who were vaccinated and those infected with the covid virus. The study also focused only on children and adolescents.

The HHS document omitted numerous other peer-reviewed studies that have shown that the risk of myocarditis and pericarditis is greater after contracting covid for both vaccinated and non-vaccinated people than the risk of the same complications after vaccination alone.

O’Leary said that while some cases of myocarditis were reported in vaccinated adolescent boys and young men early in the covid pandemic, the rates declined after the two initial doses of covid vaccines were spaced further apart.

Now, adolescents and adults who have not been previously vaccinated receive only one shot, and myocarditis no longer shows up in the data, O’Leary said, referring to the CDC’s Vaccine Safety Datalink. “There is no increased risk at this point that we can identify,” he said.

In two instances, the HHS memo makes claims that are actively refuted by the papers it cites to back them up. Both papers support the safety and effectiveness of covid vaccines for pregnant women.

The HHS document says that another paper it cites found “an increase in placental blood clotting in pregnant mothers who took the vaccine.” But the paper doesn’t contain any reference to placental blood clots or to pregnant women.

“I’ve now read it three times. And I cannot find that anywhere,” said Turrentine, the OB-GYN professor.

If he were grading the HHS document, “I would give this an ‘F,’” Turrentine said. “This is not supported by anything and it’s not using medical evidence.”

While members of Congress who are physicians should know to check references in the paper, they may not take the time to do so, said Neil Silverman, a professor of clinical obstetrics and gynecology who directs the Infectious Diseases in Pregnancy Program at the David Geffen School of Medicine at UCLA.

“They’re going to assume this is coming from a scientific agency. So they are being hoodwinked along with everyone else who has had access to this document,” Silverman said.

The offices of three Republicans in Congress who are medical doctors serving on House and Senate committees focused on health, including Sen. Bill Cassidy (R-La.), did not respond to requests for comment about whether they received the memo. Emily Druckman, communications director for Rep. Kim Schrier (D-Wash.), a physician serving on the House Energy and Commerce Committee, confirmed that Schrier’s office did receive a copy of the document.

“The problem is a lot of legislators and even their staffers, they don’t have the expertise to be able to pick those references apart,” O’Leary said. “But this one — I’ve seen much better anti-vaccine propaganda than this, frankly.”

C.J. Young, deputy communications director for the House Energy and Commerce Committee, confirmed that Democratic staff members of the committee received the document from HHS. In the past, he said, similar documents would help clarify the justification and scope of an administration’s policy change and could be assumed to be scientifically accurate, Young said.

“This feels like it’s breaking new ground. I don’t think that we saw this level of sloppiness or inattention to detail or lack of consideration for scientific merit under the first Trump administration,” Young said.

On June 4, Rep. Frank Pallone (D-N.J.) and Schrier introduced a bill that would require Kennedy to adopt official vaccine decisions from the Advisory Committee on Immunization Practices, or ACIP.

Young said the motivation behind the bill was Kennedy’s decision to change the covid vaccine schedule without the input of ACIP’s vaccine experts, who play a key role in setting CDC policies around vaccine schedules and access.

Kennedy announced June 9 on X that he would remove all 17 members of ACIP, citing alleged conflicts of interest he did not detail, and replace them. He announced eight replacements June 11, including people who had criticized vaccine mandates during the covid pandemic.

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

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

How and Where the Trump Administration Will Cut Healthcare Spending

By Elisabeth Rosenthal, KFF Health News

Health care has proved a vulnerable target for the firehose of cuts and policy changes President Donald Trump ordered in the name of reducing waste and improving efficiency. But most of the impact isn’t as tangible as, say, higher egg prices at the grocery store.

One thing experts from a wide range of fields, from basic science to public health, agree on: The damage will be varied and immense.

“It’s exceedingly foolish to cut funding in this way,” said Harold Varmus, a Nobel Prize-winning scientist and former director of both the National Institutes of Health and the National Cancer Institute.

The blaze of cuts have yielded nonsensical and perhaps unintended consequences. Consider instances in which grant funding gets canceled after two years of a three-year project. That means, for example, that $2 million has already been spent but there will be no return on that investment.

Some of the targeted areas are not administration priorities. That includes the abrupt termination of studies on long covid, which afflicts more than 100,000 Americans, and the interruption of work on mRNA vaccines, which hold promise not just in infectious disease but also in treating cancer.

While charitable dollars have flowed in to plug some gaps, “philanthropy cannot replace federal funding,” said Dustin Sposato, communications manager for the Science Philanthropy Alliance, a group that works to boost support from charities for basic science research.

Here are critical ways in which Trump administration cuts — proposed and actual — could affect American health care and, more important, the health of American patients.

Cuts to the National Institutes of Health

The Trump administration has cut $2.3 billion in new grant funding since its term began, as well as terminated existing grants on a wide range of topics — vaccine hesitancy, HIV/AIDS, and covid-19 — that do not align with its priorities. National Institutes of Health grants do have yearly renewal clauses, but it is rare for them to be terminated, experts say. The administration has also cut “training grants” for young scientists to join the NIH.

Why It Matters: The NIH has long been a crucible of basic science research — the kind of work that industry generally does not do. Most pharmaceutical patents have their roots in work done or supported by the NIH, and many scientists at pharmaceutical manufacturers learned their craft at institutions supported by the NIH or at the NIH itself.

The termination of some grants will directly affect patients since they involved ongoing clinical studies on a range of conditions, including pediatric cancer, diabetes, and long covid. And, more broadly, cuts in public funding for research could be costly in the longer term as a paucity of new discoveries will mean fewer new products:

A 25% cut to public research and development spending would reduce the nation’s economic output by an amount comparable to the decline in gross domestic product during the Great Recession, a new study found.

Cuts to Universities

The Trump administration also tried to deal a harrowing blow — currently blocked by the courts — to scientific research at universities by slashing extra money that accompanies research grants for “indirect costs,” like libraries, lab animal care, support staff, and computer systems.

Why It Matters: Wealthier universities may find the funds to make up for draconian indirect cost cuts. But poorer ones — and many state schools, many of them in red states — will simply stop doing research. A good number of crucial discoveries emerge from these labs.

“Medical research is a money-losing proposition,” said one state school dean with former ties to the Ivies. (The dean requested anonymity because his current employer told him he could not speak on the record.) “If you want to shut down research, this will do it, and it will go first at places like the University of Tennessee and the University of Arkansas.”

That also means fewer opportunities for students at state universities to become scientists.

Cuts to Public Health

These hits came in many forms. The administration has cut or threatened to cut long-standing block grants from the Centers for Disease Control and Prevention; covid-related grants; and grants related to diversity, equity, and inclusion activities — which often translated into grants to improve health care for the underserved. Though the covid pandemic has faded, those grants were being used by states to enhance lab capacity to improve detection and surveillance. And they were used to formally train the nation’s public health workforce, many of whom learn on the job.

Why It Matters: Public health officials and researchers were working hard to facilitate a quicker, more thoughtful response to future pandemics, of particular concern as bird flu looms and measles is having a resurgence. Mati Hlatshwayo Davis, the St. Louis health director, had four grants canceled, three in one day.

One grant that fell under the covid rubric included programs to help community members make lifestyle changes to reduce the risk of hypertension and diabetes — the kind of chronic diseases that Health and Human Services Secretary Robert F. Kennedy Jr. has said he will focus on fighting. Others paid the salaries of support staff for a wide variety of public health initiatives.

“What has been disappointing is that decisions have been made without due diligence,” Davis said.

Health-Related Impact of Tariffs

Though Trump has exempted prescription drugs from his sweeping tariffs on most imports thus far, he has not ruled out the possibility of imposing such tariffs. “It’s a moving target,” said Michael Strain, an economist at the American Enterprise Institute, noting that since high drug prices are already a burden, adding any tax to them is problematic.

Why It Matters: That supposed exemption doesn’t fully insulate American patients from higher costs. About two-thirds of prescription drugs are already manufactured in the U.S. But their raw materials are often imported from China — and those enjoy no tariff exemption. Many basic supplies used in hospitals and doctors’ offices — syringes, surgical drapes, and personal protective equipment — are imported, too.

Finally, even if the tariffs somehow don’t themselves magnify the price to purchase ingredients and medical supplies, Americans may suffer: Across-the-board tariffs on such a wide range of products, from steel to clothing, means fewer ships will be crossing the Pacific to make deliveries — and that means delays.

“I think there’s an uncomfortably high probability that something breaks in the supply chain and we end up with shortages,” Strain said.

Changes to Medicaid

Trump has vowed to protect Medicaid, the state-federal health insurance program for Americans with low incomes and disabilities. But House Republicans have eyed the program as a possible source of offsets to help pay for what Trump calls “the big, beautiful bill” — a sweeping piece of budget legislation to extend his 2017 tax cuts.

The amount of money GOP leaders have indicated they could squeeze from Medicaid, which now covers about 20% of Americans, has been in the hundreds of billions of dollars. But deep cuts are politically fraught.

To generate some savings, administration officials have at times indicated they are open to at least some tweaks to Medicaid. One idea on the table — work requirements — would require adults on Medicaid to be working or in some kind of job training. (Nearly two-thirds of Medicaid recipients ages 19-64 already work.)

Why It Matters: In 2024 the uninsured rate was 8.2%, near the all-time low, in large part because of the Medicaid expansion under the 2010 Affordable Care Act. Critics say work requirements are a backhanded way to slim down the Medicaid rolls, since the paperwork requirements of such programs have proved so onerous that eligible people drop out, causing the uninsured rate to rise.

A Congressional Budget Office report estimates that the proposed change would reduce coverage by at least 7.7 million in a decade. This leads to higher rates of uncompensated care, putting vulnerable health care facilities — think rural hospitals — at risk.

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

Social Security Was Boosted by Covid Deaths, But at What Cost?

By Crystal Lindell

Three years ago, on Feb. 24, 2022, I woke up at 3 am to use the bathroom, and realized I had double-digit missed text messages and voice mails – all of them filled with words like “urgent” and “immediately.”

I called my brother and he gave me the news. Overnight, our dad, David Jeffery Lindell, had died.

He had been fighting a bad COVID infection for three weeks and was hospitalized multiple times. But then he was sent home, where he had a heart attack. Paramedics tried to save his life, but my dad died hours later at the local hospital, just before midnight. 

He was 67 years old, and because he had been battling chronic physical and mental health problems for decades, he had long been declared permanently disabled by the federal government.

So, like millions of Americans who died of COVID over the last few years, my dad was on Social Security.

Now, a new report from the National Bureau of Economic Research reveals a dark twist to the pandemic: So many people died of COVID between 2020 and 2023, that it increased the Social Security Trust Fund by $205 billion.  

CRYSTAL AT AGE 3 WITH HER FATHER

Well, more specifically, the 1.7 million “excess deaths” during those years saved the fund about $294 billion. Many of those deaths were working people, which resulted in less future payroll tax contributions and more payments to surviving loved ones. Factoring that in resulted in a net increase in the fund of $205 billion. 

The most heartbreaking revelation from the report though is that $205 billion isn’t a lot of money when it comes to Social Security. According to a Marketplace article about the report, the $205 billion in savings “won’t change much in the long term; the government pays that amount in benefits every couple of months."

In other words, all those human lives lost, and it’s barely even a blip when it comes to the federal government’s finances. 

It’s easy to forget that economic reports like this are talking about real, human lives. And that those human lives touched many other lives around them. My dad’s death was like a meteor hitting our whole family, and three years later, we are only just now starting to find solid ground again. 

A lot of the framing and discourse about this new report makes it sound like the government should be happy about the financial savings. But, as a country, now would be a good time to remember that human life has value in and of itself.

My dad mattered and would still be alive today, if not for COVID. He lived at poverty levels on his monthly Social Security benefits. His death, and the deaths of millions of others who were either on social security or set to receive it, should never be framed as a “good thing” by bean counters simply because it saved our government a miniscule amount of money.  

And to be clear, it wasn’t just people currently on Social Security who “boosted” the fund. People like my long-time friend Bronson Peshlaki, who had diabetes and died of COVID in 2020 at just 44 years old, will never collect on the Social Security payments he made his entire working life. Yes, that means his death was a cost-benefit for the U.S. government, but it was also a detrimental loss to the world. 

It can feel easy to dismiss the lives of the disabled, the elderly, the mentally ill – especially as their deaths are framed as some sort of economic boost for the rest of us.

But as someone with a disability, my life has value in this world. My dad’s life also had value, and so did my friend Bronson’s life. Now, as the U.S. healthcare system faces the possibility of more severe cuts and harmful policies under the Trump administration, it’s even more urgent that we remember that.

Every time the government lets a deadly disease spread a little more or cuts back on Medicaid, real people, with souls, will die. Regardless of how much money those deaths might save us, the cost is too high.

Covid Contrarians Are Now in Power

By Arthur Allen, KFF Health News

In October, Stanford University professor Jay Bhattacharya hosted a conference on the lessons of covid-19 in order “to do better in the next pandemic.” He invited scholars, journalists, and policy wonks who, like him, have criticized the U.S. management of the crisis as overly draconian.

Bhattacharya also invited public health authorities who had considered his alternative approach reckless. None of them showed up.

Now, the “contrarians” are seizing the reins: President Donald Trump has nominated Bhattacharya to lead the National Institutes of Health and Johns Hopkins University surgeon Marty Makary to run the Food and Drug Administration. Yet the polarized disagreements about what worked and what didn’t in the fight against the biggest public health disaster in modern times have yet to be aired in a nonpartisan setting — and it seems unlikely they ever will be.

“The whole covid discussion turned into culture war dialogue, with one side saying, ‘I believe in the economy and liberty,’ and the other saying, ‘I believe in science and saving people’s lives,’” said Philip Zelikow, a scholar and former diplomat based at Stanford’s Hoover Institution.

Frances Lee, a Princeton University political scientist, has a book coming out that calls for a national inquiry to determine the lockdown and mandate approaches that were most effective.

“This is an open question that needs to be confronted,” she said. “Why not look back?”

For now, even with the threat of an H5N1 bird flu pandemic on the horizon, and some other plague waiting in the wings of a bat or goose in a far-flung corner of the world, U.S. public health officials face ebbing public trust as well as a disruptive new health administration led by skeptics of established medicine. On Feb. 7, the Trump administration announced devastating NIH budget cuts, although a judge put them on hold three days later.

Zelikow led the 34-member Covid Crisis Group, funded by four private foundations in 2021, whose work was intended to inform an independent inquiry along the lines of the 9/11 Commission, which Zelikow headed.

The covid group published a book detailing its findings, after Congress and the Biden administration abandoned initiatives to create a commission.

That was a shame, said Jennifer Nuzzo, director of the Pandemic Center at the Brown University School of Public Health, because “while there are some real ideological battles over covid, there’s also lots of stuff that potentially could be fixed related to government efficiency and policy.”

Bhattacharya, Makary, and others in 2023 called for a larger study of the pandemic. It’s not known whether the Trump administration would support one, Lee said.

The new CIA director, John Ratcliffe, however, has reopened the Wuhan lab leak theory, an issue that Republicans have used to try to cast blame on Anthony Fauci, an infectious disease expert and a top covid adviser to both the first Trump and Biden administrations. Sen. Ron Johnson (R-Wis.), the new head of the Senate’s Permanent Subcommittee on Investigations, says he’ll investigate what he described as a cover-up of covid vaccine safety problems.

Bhattacharya declined to respond to questions for this article. Makary did not respond to requests for comment.

Stanford epidemiologist John Ioannidis said his colleague Bhattacharya has an opportunity to advance understanding of the pandemic.

“Until now it has been mostly a war on impressions and media, kind of mobilizing the troops. That’s not really how science should be done,” Ioannidis said. “We need to move forward with some calm reflection, with no retaliation.”

Mistakes Were Made

In October 2020, Bhattacharya co-authored the “Great Barrington Declaration” with Trump White House support. It called for people to ignore covid and go about their business while protecting the old and vulnerable — without specifics about how.

Bhattacharya and Makary championed the policies of Sweden, which did not impose a harsh lockdown but emerged with a death rate far lower than that of the United States. The Swedes had advantages including lower poverty rates, greater access to health care, and high levels of social trust. For instance, by April 2022, 87% of Swedes ages 12 and over were vaccinated against covid — without mandates. The U.S. figure, for adults over 18, was 76% at the time.

After Bhattacharya’s earlier research was rebuffed by most of the public health establishment, he “curdled into a theological position that the risk wasn’t that severe and the economic costs were so high that we had to roll the dice, or segregate the elderly — which you cannot do,” Zelikow said.

Ten experts interviewed for this article largely agreed that the health establishment lost public trust after bungling the initial handling of the pandemic. Existing pandemic plans were faulty or ignored. Shortages of protective gear and inadequate testing rendered containment of the virus impossible. As time wore on, government scientists failed to emphasize that their recommendations would change as new data came in.

“We totally blew it,” former NIH Director Francis Collins said, in a discussion sponsored by Braver Angels, a group that promotes dialogue among political opponents. Though he blamed disinformation about vaccines for many deaths, he also wished public health officials had said “we don’t know” more often.

Collins said he didn’t pay enough attention to the socioeconomic impact of lockdowns. “You attach infinite value to stopping the disease and saving a life,” he said. “You attach zero value to whether this actually totally disrupts people’s lives, ruins the economy, and has many kids kept out of school in a way that they never quite recover from.”

While Fauci and other public health officials did express worries about collateral damage from mandates, U.S. measures were stricter than in much of the world. That’s left unresolved issues, such as how long schools should have been shuttered, whether mask mandates worked, and whether the public was misled about the efficacy of vaccines.

At the same time, U.S. officials failed to communicate clearly that vaccines prevented most deaths and hospitalizations. An estimated 232,000 unvaccinated Americans died from covid during the first 15 months in which shots were freely available.

Experiences with HIV control taught public health officials not to moralize about behavior, to focus on harm reduction, and to use the least restrictive methods possible, Nuzzo said. Yet politicization led to shaming of people who wouldn’t mask or refused vaccination.

Harm reduction was top of mind for infectious disease doctor Monica Gandhi when she defied lockdown orders by keeping open Ward 86, the clinic she runs for 2,600 HIV patients at Zuckerberg San Francisco General Hospital. Her patients — many poor or homeless — had to be treated in person to keep their HIV in check, she said.

In general, the lockdowns hurt low-income people most, she said. The wealthy “were happy to be shut down, and the poor struggled and struggled.” Gandhi’s two children attended a private school that quickly reopened, she said. Yet she recalled how a medical assistant burst into tears when asked how her family was doing.

“My 8-year-old is at home, on Zoom, all by himself,” the woman told Gandhi. “I have to work and he doesn’t know how to learn that way. There’s no one to give him food.”

Despite strictures, including school closures that were longer than in most European countries, the U.S.’ death rate from covid was the highest in the world, except for Bulgaria, according to an Ioannidis study of countries with reliable data.

Part of the blame lies with the first Trump administration, which “more or less just said, ‘You states manage this crisis,’” Zelikow said. “They went through a lot of somersaults. They did a lot of feckless things and then they basically just gave up,” he said. Pandemic deaths peaked in the four months after the November 2020 election that Trump lost.

Ioannidis, a critic of lockdowns, said the United States was doomed to a bad outcome in any case because of vulnerabilities in the population including poverty, inequality, lack of health care access, poorly protected nursing homes, high rates of obesity, and low levels of trust.

But the disappearance of viral diseases such as respiratory syncytial virus and flu in late 2020 showed how much worse it could have been without lockdowns, said Paul Offit, director of the Vaccine Education Center at Children’s Hospital of Philadelphia, who has noted that, while children were the least vulnerable to covid, it killed 1,700 of them by April 2023. More than a million American children had long covid by 2022, according to a new Centers for Disease Control and Prevention study.

Still Disagreement

After arising by accidental passage from bats and other animals to humans (or, alternatively, from a Chinese lab accident), the coronavirus was uncannily adept at frustrating containment efforts — and aggravating political tensions. Its ability to infect up to 50% of people asymptomatically, infection outcomes ranging from sniffles to death, waning immunity after infection and vaccination, and the shifting health impact of new variants meant “the deck was stacked against public health,” said biology professor Joshua Weitz of the University of Maryland.

In the end, teams formed along political lines. Conservatives attacked governors for depriving them of liberty, and Trump’s erroneous ramblings about curing the disease with bleach and ultraviolet light inspired intolerance on the left.

“If anyone else was president we would have had a better result,” Gandhi said. “But if Trump said the sky was blue, then goddamn it, the infection disease doctors disagreed.”

The right and left don’t even agree on the correct questions to ask about the pandemic, said Josh Sharfstein, a vice dean of the Bloomberg School of Public Health at Johns Hopkins University.

“Everyone knew that 9/11 was a terrorist attack,” he said. “But what the pandemic was and represents — there’s so much disagreement still.”

“We let children down, we let poor people down,” Ioannidis said in closing remarks at the Stanford conference. “We let our future down.”

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

Do Cats With Bird Flu Pose a Health Risk to Humans?

By Sarah Boden, KFF Health News

More than 80 domestic cats, among many other types of mammals, have been confirmed to have had bird flu since 2022 — generally barn cats that lived on dairy farms, as well as feral cats and pets that spend time outdoors and likely caught it by hunting diseased rodents or wild birds.

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

The strain of bird flu currently circulating has not adapted to efficiently spread among people. And there have been no known cases of cat-to-human transmission during the current outbreak of H5N1.

Still, there’s always been the risk that cats, which are arguably only semi-domesticated, could bring home a disease from a midnight prowl.

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

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

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

Signs of bird flu in cats include runny nose and discharge around the eyes, explained Michael Q. Bailey, president-elect of the American Veterinary Medical Association.

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

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

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

‘This Is a Very Scary Virus’

Some people feed their pets raw meat or unpasteurized milk because they think it’s a more nutritious or natural diet. The American Veterinary Medical Association’s website discourages this due to foodborne pathogens like salmonella and listeria, and now the highly pathogenic H5N1.

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

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

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

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

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

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

Raw Farm voluntarily recalled its milk and cream after retail products tested positive for H5N1, but it denies any food safety issues, calling the concern “a political issue.”

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

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

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

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

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

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

Most people who have caught H5N1 are agricultural workers who had direct contact with infected poultry or cattle. Of at least 67 confirmed human cases of H5N1 in the U.S., there’s been one fatality in an immunocompromised person who had contact with birds.

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

Virus Mutation

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

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

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

Kuchipudi said that reassortments are relatively rare events, but the outcome is completely unpredictable. Sometimes the results are benign, though it was likely a reassortment that involved an avian virus that led to the 1918 flu pandemic, which killed an estimated 50 million people. In the century since, virologists have established a global surveillance network to monitor influenza viruses. Scientists say continued investment in this network is key to preparing for and hopefully preventing another pandemic.

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

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

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

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

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

Dogs Have Lower Risk

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

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

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

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

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

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

This article is from a partnership that includes NPR and KFF Health News, a national newsroom that produces in-depth journalism about health issues.  

Trump Administration Delays Release of Bird Flu Studies

By Amy Maxmen, KFF Health News

The Trump administration has intervened in the release of important studies on the bird flu, as an outbreak escalates across the United States.

One of the studies would reveal whether veterinarians who treat cattle have been unknowingly infected by the bird flu virus. Another report documents cases in which people carrying the virus might have infected their pet cats.

The studies were slated to appear in the official journal of the Centers for Disease Control and Prevention, the Morbidity and Mortality Weekly Report. The distinguished journal has been published without interruption since 1952.

Its scientific reports have been swept up in an “immediate pause” on communications by federal health agencies ordered by Dorothy Fink, the acting secretary of the Department of Health and Human Services. Fink’s memo covers “any document intended for publication,” she wrote, “until it has been reviewed and approved by a presidential appointee.” It was sent on President Donald Trump’s first full day in office.

That’s concerning, former CDC officials said, because a firewall has long existed between the agency’s scientific reports and political appointees.

“MMWR is the voice of science,” said Tom Frieden, a former CDC director and the CEO of the nonprofit organization Resolve to Save Lives.

“This idea that science cannot continue until there’s a political lens over it is unprecedented,” said Anne Schuchat, a former principal deputy director at the CDC. “I hope it’s going to be very short-lived, but if it’s not short-lived, it’s censorship.”

White House officials meddled with scientific studies on covid-19 during the first Trump administration, according to interviews and emails collected in a 2022 report from congressional investigators. Still, the MMWR came out as scheduled.

“What’s happening now is quite different than what we experienced in covid, because there wasn’t a stop in the MMWR and other scientific manuscripts,” Schuchat said.

Neither the White House nor HHS officials responded to requests for comment. CDC spokesperson Melissa Dibble said, “This is a short pause to allow the new team to set up a process for review and prioritization.”

News of the interruption hit suddenly last week, just as Fred Gingrich, executive director of the American Association of Bovine Practitioners, a group for veterinarians specializing in cattle medicine, was preparing to hold a webinar with members. He planned to disclose the results of a study he helped lead, slated for publication in the MMWR later that week.

Back in September, about 150 members had answered questions and donated blood for the study. Researchers at the CDC analyzed the samples for antibodies against the bird flu virus, to learn whether the veterinarians had been unknowingly infected earlier last year.

Although it would be too late to treat prior cases, the study promised to help scientists understand how the virus spreads from cows to people, what symptoms it causes, and how to prevent infection. “Our members were very excited to hear the results,” Gingrich said.

Like farmworkers, livestock veterinarians are at risk of bird flu infections. The study results could help protect them. And having fewer infections would lessen the chance of the H5N1 bird flu virus evolving within a person to spread efficiently between people — the gateway to a bird flu pandemic.

At least 67 people have tested positive for the bird flu in the U.S., with the majority getting the virus from cows or poultry. But studies and reporting suggest many cases have gone undetected, because testing has been patchy.

Just before the webinar, Gingrich said, the CDC informed him that because of an HHS order, the agency was unable to publish the report last week or communicate its findings. “We had to cancel,” he said.

Another bird flu study slated to be published in the MMWR last week concerns the possibility that people working in Michigan’s dairy industry infected their pet cats. These cases were partly revealed last year in emails obtained by KFF Health News. In one email from July 22, an epidemiologist pushed to publish the group’s investigation to “inform others about the potential for indirect transmission to companion animals.”

Jennifer Morse, medical director at the Mid-Michigan District Health Department and a scientist on the pending study, said she got a note from a colleague last week saying that “there are delays in our publication — outside of our control.”

A person close to the CDC, speaking on the condition of anonymity because of concerns about reprisal, expected the MMWR to be on hold at least until Feb. 6. The journal typically posts on Thursdays, and the HHS memo says the pause will last through Feb. 1.

“It’s startling,” Frieden said. He added that it would become dangerous if the reports aren’t restored. “It would be the equivalent of finding out that your local fire department has been told not to sound any fire alarms,” he said.

In addition to publishing studies, the MMWR keeps the country updated on outbreaks, poisonings, and maternal mortality, and provides surveillance data on cancer, heart disease, HIV, and other maladies. Delaying or manipulating the reports could harm Americans by stunting the ability of the U.S. government to detect and curb health threats, Frieden said.

The freeze is also a reminder of how the first Trump administration interfered with the CDC’s reports on covid, revealed in emails detailed in 2022 by congressional investigators with the House Select Subcommittee on the Coronavirus Crisis. That investigation found that political appointees at HHS altered or delayed the release of five reports and attempted to control several others in 2020.

In one instance, Paul Alexander, then a scientific adviser to HHS, criticized a July 2020 report on a coronavirus outbreak at a Georgia summer camp in an email to MMWR editors, which was disclosed in the congressional investigation.

“It just sends the wrong message as written and actually reads as if to send a message of NOT to re-open,” he wrote. Although the report’s data remained the same, the CDC removed remarks on the implications of the findings for schools.

Later that year, Alexander sent an email to then-HHS spokesperson Michael Caputo citing this and another example of his sway over the reports: “Small victory but a victory nonetheless and yippee!!!”

Schuchat, who was at the CDC at the time, said she had never experienced such attempts to spin or influence the agency’s scientific reports in more than three decades with the agency. She hopes it won’t happen again. “The MMWR cannot become a political instrument,” she said.

Gingrich remains hopeful that the veterinary study will come out soon. “We’re an apolitical organization,” he said. “Maintaining open lines of communication and continuing research with our federal partners is critical as we fight this outbreak.”

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

Long Covid Patients Frustrated by Lack of New Treatments

By Sarah Boden, KFF Health News

Erica Hayes, 40, has not felt healthy since November 2020 when she first fell ill with covid.

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

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

Along with claiming the lives of 1.2 million Americans, the covid-19 pandemic has been described as a mass disabling event. Hayes is one of millions of Americans who suffer from long covid.

Depending on the patient, the condition can rob someone of energy, scramble the autonomic nervous system, or fog their memory, among many other symptoms.

In addition to the brain fog and chronic fatigue, Hayes’ constellation of symptoms includes frequent hives and migraines. Also, her tongue is constantly swollen and dry.

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

ERICA HAYES

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

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

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

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

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

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

Now the NIH is starting to determine how to allocate an additional $662 million of funding for long-covid research, $300 million of which is earmarked for clinical trials. These funds will be allocated over the next four years. At the end of October, RECOVER issued a request for clinical trial ideas that look at potential therapies, including medications, saying its goal is “to work rapidly, collaboratively, and transparently to advance treatments for Long COVID.”

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

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

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

Good Science Takes Time

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

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

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

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

RECOVER’s website says this research has led to crucial insights on the risk factors for developing long covid and on understanding how the disease interacts with preexisting conditions. It notes that observational studies are important in helping scientists to design and launch evidence-based clinical trials.

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

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

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

NYU received nearly $470 million of RECOVER funds in 2021, which the institution is using to spearhead the collection of data and biospecimens from up to 40,000 patients. Horwitz said nearly 30,000 are enrolled so far.

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

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

‘I’m Just Disgusted’

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

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

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

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

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

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

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

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

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

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

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

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

Insurance Battles Over Experimental Treatments

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

Michael Brode, medical director for UT Health Austin’s Post-COVID-19 Program — said he writes many appeal letters. And some people pay for their own treatment.

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

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

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

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

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

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

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

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

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

(Update: The Trump administration recently ordered an “immediate pause” on all communications, reports, scientific meetings, and funding reviews by federal health agencies. It’s not clear how long the order will last or affect long covid research.)

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

How Vaccine Misinformation Distorts Science

By Mark O'Brian

Vaccinations provide significant protection for the public against infectious diseases and substantially reduce health care costs. Therefore, it is noteworthy that President-elect Donald Trump wants Robert F. Kennedy Jr., a leading critic of childhood vaccination, to be secretary of Health and Human Services.

Doctors, scientists and public health researchers have expressed concerns that Kennedy would turn his views into policies that could undermine public health. As a case in point, news reports have highlighted how Kennedy’s lawyer, Aaron Siri, has in recent years petitioned the Food and Drug Administration to withdraw or suspend approval of numerous vaccines over alleged safety concerns.

I am a biochemist and molecular biologist studying the roles microbes play in health and disease. I also teach medical students and am interested in how the public understands science.

Here are some facts about vaccines that Kennedy and Siri get wrong:

Vaccines Don’t Cause Autism

Public health data from 1974 to the present conclude that vaccines have saved at least 154 million lives worldwide over the past 50 years. Vaccines are also continually monitored for safety in the U.S.

Nevertheless, the false claim that vaccines cause autism persists despite study after study of large populations throughout the world showing no causal link between them.

Claims about the dangers of vaccines often come from misrepresenting scientific research papers. In an interview with podcaster Joe Rogan, Kennedy incorrectly cited studies allegedly showing vaccines cause massive brain inflammation in laboratory monkeys, and that the hepatitis B vaccine increases autism rates in children by over 1,000-fold compared with unvaccinated kids. Those studies make no such claims.

In the same interview, Kennedy also made the unusual claim that a 2002 vaccine study included a control group of children 6 months of age and younger who were fed mercury-contaminated tuna sandwiches. No sandwiches are mentioned in that study.

Similarly, Siri filed a petition in 2022 to withdraw approval of a polio vaccine based on alleged safety concerns. The vaccine in question is made from an inactivated form of the polio virus, which is safer than the previously used live attenuated vaccine.

The inactivated vaccine is made from polio virus cultured in the Vero cell line, a type of cell that researchers have been safely using for various medical applications since 1962. While the petition uses provocative language comparing this cell line to cancer cells, it does not claim that it causes cancer.

Vaccines Undergo Clinical Trials

Clinical trials for vaccines and other drugs are blinded, randomized and placebo-controlled studies. For a vaccine trial, this means that participants are randomly divided into one group that receives the vaccine and a second group that receives a placebo saline solution. The researchers carrying out the study, and sometimes the participants themselves, do not know who has received the vaccine or the placebo until the study has finished. This eliminates bias.

Results are published in the public domain. For example, vaccine trial data for COVID-19, human papilloma virus, rotavirus and hepatitis B are available for anyone to access.

Aluminum Boosts Immunity

Kennedy is co-counsel with a law firm that is suing the pharmaceutical company Merck based in part on the unfounded assertion that the aluminum in one of its vaccines causes neurological disease. Aluminum is added to many vaccines as an adjuvant to strengthen the body’s immune response to the vaccine, thereby enhancing the body’s defense against the targeted microbe.

The law firm’s claim is based on a 2020 report showing that brain tissue from some patients with Alzheimer’s disease, autism and multiple sclerosis have elevated levels of aluminum. The authors of that study do not assert that vaccines are the source of the aluminum, and vaccines are unlikely to be the culprit.

Notably, the brain samples analyzed in that study were from 47- to 105-year-old patients. Most people are exposed to aluminum primarily through their diets, and aluminum is eliminated from the body within days. Therefore, aluminum exposure from childhood vaccines is not expected to persist in those patients.

Ironically, Kennedy’s lawyer, Siri, wants the FDA to withdraw some vaccines for containing less aluminum than stated by the manufacturer.

Vaccine Manufacturers Can Be Held Liable

Kennedy’s lawsuit against Merck contradicts his insistence that vaccine manufacturers are fully immune from litigation.

His claim is based on an incorrect interpretation of the National Vaccine Injury Compensation Program, or VICP. The VICP is a no-fault federal program created to reduce frivolous lawsuits against vaccine manufacturers, which threaten to cause vaccine shortages and a resurgence of vaccine-preventable disease.

A person claiming injury from a vaccine can petition the U.S. Court of Federal Claims through the VICP for monetary compensation. If the VICP petition is denied, the claimant can then sue the vaccine manufacturer.

The majority of cases resolved under the VICP end in a negotiated settlement between parties without establishing that a vaccine was the cause of the claimed injury. Kennedy and his law firm have incorrectly used the payouts under the VICP to assert that vaccines are unsafe.

The VICP gets the vaccine manufacturer off the hook only if it has complied with all requirements of the Federal Food, Drug and Cosmetic Act and exercised due care. It does not protect the vaccine maker from claims of fraud or withholding information regarding the safety or efficacy of the vaccine during its development or after approval.

Good Nutrition Is Not a Substitute for Vaccination

Kennedy asserts that populations with adequate nutrition do not need vaccines to avoid infectious diseases. While it is clear that improvements in nutrition, sanitation, water treatment, food safety and public health measures have played important roles in reducing deaths and severe complications from infectious diseases, these factors do not eliminate the need for vaccines.

After World War II, the U.S. was a wealthy nation with substantial health-related infrastructure. Yet, Americans reported an average of 1 million cases per year of now-preventable infectious diseases.

Vaccines introduced or expanded in the 1950s and 1960s against diseases like diphtheria, pertussis, tetanus, measles, polio, mumps, rubella and Haemophilus influenza B have resulted in the near or complete eradication of those diseases.

It’s easy to forget why many infectious diseases are rarely encountered today: The success of vaccines does not always tell its own story. RFK Jr.’s potential ascent to the role of secretary of Health and Human Services will offer up ample opportunities to retell this story and counter misinformation.

Mark R. O'Brian, PhD, is a Professor and Chair of Biochemistry at the University at Buffalo. His research is focused on understanding how microbes regulate cellular processes relevant to agriculture, human health and disease.

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

Why Life With Chronic Pain Makes Every New Ache Extra Terrifying

By Crystal Lindell

Late Sunday night, while putting freshly cleaned sheets onto my bed, I twisted a little weird and threw out my back.

By Monday morning, the pain was so debilitating that I was sobbing as my fiancé tried to help me out of our bed. But beyond dealing with the immediate physical pain, I was also terrified of the future.

As a chronic pain patient, every time I get any new illness or affliction I worry that it will become what the rib pain I woke up with in 2013 became: Permanent. 

When you develop chronic health issues of any sort, you lose one of the healthy population’s greatest luxuries: The ability to assume that you’ll eventually get better. 

Thankfully, I seem to be recovering from this flare up of back pain. Three days after the initial onset, I’m able to lift myself out of bed, and even do some light cooking in the kitchen. 

This is the first time I’ve ever experienced any type of severe back pain like this though, and I had been very stressed that my back would never recover.

This isn’t the first time I’ve faced this fear. 

When I had a bad case of COVID in 2022, I spent the first few nights awake with the most severe cold-related muscle aches I’d ever experienced.

In my fever state, I frantically Googled to see if this was a symptom that could become permanent. I was petrified that my body was just broken like this forever. Thankfully it wasn’t, but I know all too well that there’s no guarantee of recovery when it comes to the human body.

It’s not just my health I worry about either. 

Anytime a loved one tells me about a chest cold, some new joint pain, or any type of new health issue, I panic that their body will never recover. Or worse, what if it kills them?

This fear has only been made worse since 2020, when COVID, which first presents as cold symptoms, started spreading. In the years since it has killed multiple people I knew. 

Now anytime anyone I know develops so much as a sore throat, I worry that they’re going to die.

I keep this to myself because there’s nothing to be gained by spreading my worry to them, but I worry nonetheless. I know firsthand how fragile our bodies are, how delicate our health truly is. I am all too aware of the fact that any of us can lose it at any time. 

As I've been enduring the new back pain all week, cursing myself for taking my ability to bend over for granted, I’ve thought a lot about my late-father, who died from COVID in 2022. 

I have vivid memories of him throwing his back multiple times throughout my childhood. Now that it has happened to me, I’ve realized that I didn’t spend nearly enough time asking him how he coped with it, and then seemingly got past it. 

My dad’s back was so bad that he was walking with a cane at age 35, when my younger brother was born in 1989. But the cane was gone within a few years and I don’t remember him needing it again after that. 

Talking with my brother this week, he told me our dad blamed his back pain on driving a truck for a living, a profession he eventually gave up so he could pursue computer programming. So, I assume it was the career change that alleviated his back pain. But now that he’s dead, I’ll never really know for sure how he healed his back, or if he even really did.

My late-grandfather on my mother’s side also spent decades of his life battling seemingly untreatable back pain. He passed away when I was a toddler, but stories about his back pain continued long past his death. 

Now, as an adult, I suspect he was one of the links in the genetic Ehlers-Danlos chain that we now know runs along my mom’s side of the family. We both battled the same condition, but he’ll never know that.

Pain is always bad, but as our bodies age in the same ways our parents, and their parents before them have, it does have one small, silver lining: It can help us connect to our ancestors in new ways, helping us more fully grasp the lives they lived before us. 

After battling this back pain flare up this week, I have a new appreciation for how much pain my dad and my grandfather must have endured due to their back problems, and a more fully developed sense of empathy for their troubles. 

So while I will continue to worry that every new health issue will become permanent, including my new back pain, I can take small comfort in knowing that even if that’s the case, enduring it just makes me part of a long line of my ancestors who’ve endured the same before me. 

Human beings suffer, but when we suffer together, it does tend to alleviate our sorrows ever so slightly. 

Trump’s Picks for Top Health Jobs at Odds With Each Other

By Stephanie Armour and Julie Rovner, KFF Health News

Many of President-elect Donald Trump’s candidates for federal health agencies have promoted policies and goals that put them at odds with one another or with Trump’s choice to run the Department of Health and Human Services, Robert F. Kennedy Jr., setting the stage for internal friction over public health initiatives.

The picks hold different views on matters such as limits on abortion, the safety of childhood vaccines, the covid-19 response, and the use of weight-loss medications.

The divide pits Trump picks who adhere to more traditional and orthodox science, such as the long-held, scientifically supported findings that vaccines are safe, against often unsubstantiated views advanced by Kennedy and other selections who have claimed vaccines are linked with autism.

The Trump transition team and the designated nominees mentioned in this article did not respond to requests for comment.

It’s a potential “team of opponents” at the government’s health agencies, said Michael Cannon, director of health policy studies at the Cato Institute, a libertarian policy organization. Kennedy, he said, is known for rejecting opposing views when confronted with science.

“The heads of the FDA and NIH will be spending all their time explaining to their boss what a confidence interval is,” Cannon said, referring to a statistical term used in medical studies.

Those whose views prevail will have significant power in shaping policy, from who is appointed to sit on federal vaccine advisory committees to federal authorization for covid vaccines to restrictions on abortion medications. If confirmed as HHS secretary, Kennedy is expected to set much of the agenda.

“If President Trump’s nomination of RFK Jr. to be secretary is confirmed, if you don’t subscribe to his views, it will be very hard to rise in that department,” said Amesh Adalja, an infectious disease specialist and senior scholar at the Johns Hopkins Center for Health Security.

“They will need to suppress their views to fit with RFK Jr’s. In this administration, and any administration, independent public disagreement isn’t welcome.”

Kennedy is chair of Children’s Health Defense, an anti-vaccine nonprofit. He has vowed to curb the country’s appetite for ultra-processed food and its incidence of chronic disease. He helped select Trump’s choices to lead the Centers for Disease Control and Prevention, the Food and Drug Administration, and the National Institutes of Health. If confirmed, he would lead them from the helm of HHS, with its more than $1.7 trillion budget.

Clashes are likely. Kennedy has supported access to abortion until a fetus is viable. That puts him at odds with Dave Weldon, the former Florida congressman whom Trump has chosen to run the CDC. Weldon, a physician, is an abortion opponent who wrote one of the major laws allowing health professionals to opt out of participating in the procedure.

Weldon would head an agency that’s been in the crosshairs of conservatives since the covid pandemic began. He has touted his “100% pro-life voting record” on his campaign website. (He unsuccessfully ran earlier this year for a seat in Florida’s House of Representatives.)

Trump has said he would leave decisions about abortion to the states, but the CDC under Weldon could, for example, fund studies on abortion risks. The agency could require states to provide information about abortions performed within their borders to the federal government or risk the loss of federal funds.

Vaccine Safety

Weldon, like Kennedy, has questioned the safety of vaccines and has said he believes they can cause autism. That’s at odds with the views of Marty Makary, a Johns Hopkins surgeon whom Trump plans to nominate for FDA commissioner. The British American said on the “Brian Kilmeade Show” on Fox News Radio that vaccines “save lives,” although he added that it’s good to question the U.S. vaccine schedule for children.

The American Academy of Pediatricians encourages parents and their children’s doctors to stick to the recommended schedule of childhood vaccines. “Nonstandard schedules that spread out vaccines or start when a child is older put entire communities at risk of serious illnesses, including infants and young children,” the group says in guidance for its members.

Jay Bhattacharya, a doctor and economist who is Trump’s selection to lead NIH, has also supported vaccines.

Kennedy has said on NPR that federal authorities under his leadership wouldn’t “take vaccines away from anybody.” But the FDA oversees approval of vaccines, and, under his leadership, the agency could put vaccine skeptics on advisory panels or could make changes to a program that largely protects vaccine makers from consumer injury lawsuits.

“I do believe that autism does come from vaccines,” Kennedy said in 2023 on Fox News. Many scientific studies have discredited the claim that vaccines cause autism.

Ashish Jha, a doctor who served as the White House covid response coordinator from 2022 to 2023, noted that Bhattacharya and Makary have had long and distinguished careers in medicine and research and would bring decades of experience to these top jobs.

But, he said, it “is going to be a lot more difficult than they think” to stand up for their views in the new administration. It’s hard “to do things that displease your boss, and if [Kennedy] gets confirmed, he will be their boss,” Jha said.

“They have their work cut out for them if they’re going to stand up for their opinions on science. If they don’t, it will just demoralize the staff.”

Most of Trump’s picks share the view that federal health agencies bungled the pandemic response, a stance that resonated with many of the president-elect’s voters and supporters — even though Trump led that response until Joe Biden took office in 2021.

Kennedy said in a 2021 Louisiana House oversight meeting that the covid vaccine was the “deadliest” ever made. He has cited no evidence to back the claim.

Federal health officials say the vaccines have saved millions of lives around the globe and offer important protection against covid. Protection lasts even though their effectiveness wanes over time.

The vaccines’ effectiveness against infection stood at 52% after four weeks, according to a May study in The New England Journal of Medicine, and their effectiveness against hospitalization was about 67% after four weeks.

The vaccines were produced through Operation Warp Speed, a public-private partnership Trump launched in his first term to fast-track the shots as well as other treatments.

Makary criticized covid vaccine guidance that called for giving young children the shots. He argued that, for many people, natural immunity from infections could substitute for the vaccine. Bhattacharya opposed measures used to curb the spread of covid in 2020 and advised that everyone except the most vulnerable go about their lives as usual. The World Health Organization warned that such an approach would overwhelm hospitals.

Mehmet Oz, Trump’s choice to head the Centers for Medicare & Medicaid Services, an agency within HHS, has said the vaccines were oversold. He promoted the use of the anti-malaria drug hydroxychloroquine as a treatment. The FDA in 2020 revoked emergency authorization of hydroxychloroquine for covid, saying that it was unlikely to be effective against the virus and that the risk of dangerous side effects was too high.

Janette Nesheiwat, meanwhile, a former Fox News contributor and Trump’s pick for surgeon general, has taken a different stance. The doctor described covid vaccines as a gift from God in a Fox News opinion piece.

Kennedy’s qualms about vaccines are likely to be a central issue early in the administration. He has said he wants federal health agencies to shift their focus from preparing for and combating infectious disease to addressing chronic disease.

The shifting focus and questioning of vaccines concern some public health leaders amid the spread of the H5N1 bird flu virus among dairy cattle. There have been 60 human infections reported in the U.S. this year, all but two of them linked to exposure to cattle or poultry.

“Early on, they’re going to have to have a discussion about vaccinating people and animals” against bird flu, said Georges C. Benjamin, executive director of the American Public Health Association. “We all bring opinions to the table. A department’s cohesive policy is driven by the secretary.”

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

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.

What Qualifies Someone as Disabled?

By Crystal Lindell

There’s a common question in the disability community about what qualifies someone as “disabled.”

My advice to anyone considering this question about themselves is this: People who are not disabled do not sit around contemplating whether or not they are disabled. 

So, if you are wondering if your health issues qualify you as disabled: They do.  

A lot of Americans have a rigid idea of “disability” based on how it’s often portrayed in popular culture. The idea is that “real” disabled people use something like a wheelchair, a walking cane, or a walker. Those Hollywood props are what qualifies someone as legitimately disabled. 

But in real life, that’s not true. Disability is often gradual, slowly chipping away at our abilities – but taking them away nonetheless. Which means it can be hard to know when we’ve crossed the threshold into fully disabled. And we may arrive there without so much as a walking cane. 

In truth, it took me years to fully grasp this about my own diminishing health. 

My pain often makes it so that I cannot leave the house, even with pain medication. Grocery shopping trips leave me exhausted, assuming I even have the energy to push through that day’s pain to navigate the store in the first place. I am on daily medications, I put off showers because they are too difficult for me to handle, and I often cancel plans last minute when my body decides to be uncooperative. 

Yet despite all of that, I still did not know if I should consider myself "disabled."

Over time though, I have come to realize that my health problems impact so many aspects of my life, that of course I am disabled. 

After we decide to take on the label of “disabled” for ourselves, we often meet the next hurdle: pushback from loved ones and strangers who bristle at the distinction. 

There’s also a common sentiment among patients with chronic illness where they think if they meet some imaginary threshold of disabled, then finally people will start to accept their limitations and maybe even show some sympathy. Unfortunately, that is often not the case. 

When it comes to health issues, you will never find validation from others. There is no level of mobility aids or level of diagnosis you can get where people who’ve dismissed your health issues in the past will suddenly start to accept them. 

That’s in large part because when people interact with a disabled person, it requires them to contemplate the fact that their own body could eventually fail them one day. 

Some people choose to hold space for that realization in themselves and then express empathy. But others try to reject it, choosing instead to accuse the disabled person of being overdramatic. That’s because they don’t want to consider just how vulnerable our human bodies really are.  

I’ve heard people dismiss diagnosed cancer patients as “hypochondriacs” for complaining about their symptoms. I’ve seen people claim that POTS is not a real disability, despite the fact that it’s often debilitating and life-altering. And I’ve heard people tell loved ones not to use a wheelchair when they need it, because it might make them “give up.” As though we are ever allowed to give up in our bodies. 

Personally, I think of the time I sprained my ankle back in high school. At the time I was working at Walmart, and I went into work despite the severe pain, swelling and bruising on my ankle. Unable to put any weight on it, I used one of the store’s electric mobility scooters to get around the store during my shift. 

A co-worker felt the need to come right up to me and tell me that I shouldn’t be using it because I should be saving the scooters for people who “really” need them. Apparently being unable to walk did not qualify me. 

My advice here is that other’s opinions of your body are irrelevant. They don’t know what it’s like to live with your symptoms, so it doesn’t matter if they accept the label of disabled for you or not. All that matters is that you accept whatever you label you decide to use. 

And, like I said, if you’re wondering if you are “disabled” you probably are. And that’s okay. Now that you’ve named it, you can get on with the noble work of finding new ways to live with it.

7 Practical Gift Ideas for People with Chronic Pain

By Crystal Lindell

Whether you’re looking for gift ideas for a loved one with chronic pain, or you’re looking for some ideas for your own wish list, we’ve got you covered. 

I’ve been living with chronic pain for more than 10 years now, and below is a list of some of my favorite things that would also make great gifts for the person in pain in your life. 

And don’t worry, it’s not a bunch of medicinal stuff. Being in pain doesn’t represent our entire identities. The list below is a lot of fun items that would be great for anyone on your list, but that also are especially great for people with chronic pain.

There’s also stuff for every price range, so you’re sure to find the perfect holiday gift! 

Note that Pain News Network may receive a small commission from the links provided below. 

1. Heated Blankets

I put heated blankets first on this list for a reason – they are truly invaluable if you have chronic pain. Even if you live in a warm climate, they can be great to use if people you live with want the AC on the high side. 

There’s just something that’s both cozy and comforting about curling up with a blanket that literally warms you up. I can’t recommend them enough, both as a gift and for yourself. 

I personally loved this Tefici Electric Heated Blanket Throw so much that after getting one for my house, I literally ordered 4 more so I could give them out as Christmas gifts to my family. They all loved them too. And so did their pet cats! 

Find it on Amazon here: Tefici Electric Heated Blanket Throw

The Tefici was actually my intro to heated blankets. After purchasing one for my living room, I was hooked. So I leveled up to this Shavel Micro Flannel Heated Blanket. 

It was a little more expensive than the heated throw, but I got it in 2021, and it’s still going strong. We use it in the bedroom every single night during our cold Midwest winters, and I can’t imagine sleeping without it. It offers more heat settings than the throw, and it can stay on for up to 9 hours. The heating mechanism is also more steady than the throw, so it doesn’t feel like it gets too hot overnight. 

Find it on Amazon here: Shavel Micro Flannel Heated Blanket

2. Home Coffee Machine

One thing about chronic pain – or really any sort of chronic illness – is that it makes it difficult to leave the house some days. But that doesn’t mean you have to give up your Starbucks-style coffee. 

With a home espresso machine, and a milk frother it’s really easy to create very similar drinks at home – and they’re much cheaper than Starbucks. 

I’ve personally been a fan of Nespresso machines for years now and I recently got my sister into them as well. Assuming the person you’re buying for likes coffee, and that they don’t already have a Nespresso, getting them one or a related accessory like a frother as a gift can be a really fun idea. 

Plus, then they’ll lovingly think of you every morning when they use it! 

Find it on Amazon: Nespresso Vertuo Pop+ Coffee and Espresso Maker by Breville with Milk Frother, Coconut White

3. Sound Machine

A lot of people with chronic pain have trouble sleeping, but both me and my partner have realized that having some white noise in the background can really help our brains relax overnight. 

There are a lot of options out there, but a basic one at a lower price point is all you really need. I got him the EasyHome Sleep Sound Machine last year for Christmas and we both love it! It now has a permanent place on our bedroom dresser. 

It has 30 Soothing Sounds, 12 Adjustable Night Lights, and 32 Levels of Volume. We use it all winter when it’s too cold to sleep with the fan on for background noise. 

Find it on Amazon: EasyHome Sleep Sound Machine

4. Pajama Pants

As someone with chronic pain, I honestly spend more days in pajama pants than I do in regular pants. And not only do I love wearing them, I also love receiving them as a gift – especially novelty ones. 

My partner is a huge fan of Lord of the Rings, so I got him these Lord of The Rings Men's PJ’s last year for his birthday, and he wears them at least once a week. 

And quick note: If you’re purchasing pajamas as a gift, I always recommend sizing up to make sure they’re super comfortable. 

Find it on Amazon: Lord of The Rings Men's Sleepwear

5. Streaming Devices

There are a lot of streaming devices you can use to connect your TV to the internet, but we’ve had Rokus in our house for years now, so I can personally recommend them. 

We specifically love that they offer this really great search feature, where if you search on the Roku homepage for a movie or TV show title, it will tell you which one of your streaming services offer it, and even which ones have it for free! So no more scrolling in an out of each streaming app trying to find the movie you want to watch. 

As an added bonus, you can also use a feature in the Roku App as a remote if you lose yours, which can come up a lot for people who might be dealing with chronic pain-related brain fog. 

Find it on Amazon: Roku Express 4K+

6. Art Supplies

Having chronic pain means I’m always on the lookout for low-key activities I can do at home, so over the years I’ve gotten really into artistic pursuits. But if you’ve ever tried to start a new hobby, you know that getting all the supplies can be half the battle. 

But that also means that art supplies can make a great gift for someone with chronic pain. Plus, they come at a very wide range of price points, so you can find something perfect without having to overspend. 

I personally have the ai-natebok 36 Colored Fineliner Pens linked below, and I love using them for a wide variety of projects. But there’s also sketch pads, watercolor sets and blank canvas, not to mention color books. 

Find it on Amazon: ai-natebok 36 Colored Fineliner Pens

7. Gift Cards

Of course, when all else fails, sometimes the best gift is a gift card, especially if you’re looking for something last-minute since they can usually be sent via e-mail. 

I especially recommend Amazon gift cards, specifically because they can be used to pay for Amazon Prime Service, which offers both streaming services and fast home delivery – two things that people with chronic pain often love. 

Find it on Amazon: Amazon gift cards

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.