The federal government is restricting COVID-19 vaccine access. Here’s what that means for the ongoing pandemic and people with Long COVID.

Like many, Lily (a pseudonym) has been concerned about her ability to get future COVID-19 vaccines under the Trump administration’s increasingly anti-vaccine policymaking. So a few weeks ago, she went to her local Walgreens in Washington state to get a booster.

Lily got her last booster over six months ago. She has fibromyalgia and type 2 diabetes. Type 2 diabetes is a condition listed by the Centers for Disease Control and Prevention (CDC) as one that puts her at higher risk for COVID-19 complications. She should have been eligible for a vaccine even under the new restrictions.

But she was turned away. 

“The pharmacy tech came out and asked if I had ‘any other health conditions, like cancer’ that would qualify me,” Lily said. After responding that she had diabetes, the pharmacy worker “didn’t even bother going back to the computer, she just smiled and said she couldn’t do anything,” and claimed the system locked her out. “It was very frustrating.” Lily added that she had submitted a complaint but has yet to hear back, even after following up.

A Walgreens spokesperson told The Sick Times that the company continues to “closely monitor and review” vaccine guidance and is “committed” to keeping its workers updated.

But Lily’s experiences show how recent policy changes around COVID-19 vaccines are already sowing chaos and confusion and restricting vaccine access — including for people who should still be eligible to receive them.

Recent policy changes around COVID-19 vaccines are already sowing chaos and confusion and restricting vaccine access — including for people who should still be eligible to receive them.

These changes, which top health officials unveiled last month essentially by decree, will bar people under 65 with no qualifying underlying health conditions from getting COVID-19 vaccinations. Their new policies also restrict vaccinations for children and pregnant people.

Health Secretary Robert F. Kennedy Jr. shared policy updates on Twitter/X alongside National Institutes of Health director Dr. Jay Bhattacharya and Food & Drug Administration (FDA) commissioner Dr. Marty Makary. The officials erroneously claimed that there are no clinical data to support the safety or effectiveness of COVID-19 vaccines for these populations, despite ample evidence to the contrary. 

Amid unprecedented attacks on public health and health research in the U.S., restricting access to COVID-19 vaccines will put the public at increased risk for COVID-19 transmission, hospitalization, death, and Long COVID. COVID-19 is still among the leading causes of death in the U.S., killing tens of thousands each year, according to the CDC. 

Long COVID is not listed as a high-risk condition that would qualify someone for a vaccine under the new policy, and despite abundant science on the disease, some high-ranking members of the Department of Health and Human Services (HSS) don’t even believe it exists.

Restricting access to vaccines for the general public will disproportionately affect vulnerable people, especially those who can’t get vaccines themselves for health reasons, such as those with post-vaccine syndrome or transplant patients. 

The new HHS policy goes against established, transparent norms for vaccine approval processes. But there are still options for the CDC and other government bodies to push back. The CDC kept COVID-19 vaccines on its immunization schedule for children, contradicting RFK Jr.’s announcement. And public health advocates and organizations like the People’s CDC are urging people to call their representatives and leave comments for the CDC’s vaccine advisory committee ahead of a meeting next week.

Policy by “decree”

Beyond the guidance itself, the way federal health officials issued it was “irregular,” and they didn’t sufficiently explain the decision, said Dorit Reiss, a law professor at the University of California, San Francisco, and expert in legal issues around vaccines. She explained that the move could be challenged in court with a directly affected plaintiff. 

For decades, the CDC has regularly revised vaccine guidance based on the advice of its Advisory Committee on Immunization Practices (ACIP). This committee historically includes scientists, doctors, and other medical experts and involves a transparent review process and public comment period.

ACIP recommendations are also used to guide insurance companies in determining which vaccines they will cover. Though coverage variability has been an issue since the COVID-19 vaccines were commercialized in 2023, if ACIP doesn’t recommend it for the general public, this could become a much bigger issue, said Reiss. 

But in a shocking move on June 9, Kennedy removed all 17 of ACIP’s members and announced plans to replace them ahead of ACIP’s planned meeting on June 25 to 27. He quickly named eight new appointees, many of whom are COVID-19 contrarians and vaccine skeptics. The committee will need a quorum to proceed.

Major medical associations and lawmakers quickly denounced these actions, with the American Medical Association calling for a Senate investigation of Kennedy. Several top CDC vaccine advisors have resigned. 

All 17 dismissed ACIP members published a letter in JAMA this week denouncing the decision as well as the recent changes to COVID-19 vaccination policy. 

“Appointing people this fast means they were not properly vetted, and there is no real time to check conflict of interest issues,” said Reiss. “Kennedy is not at all committed to transparency and deliberation.” After the ACIP expert purge, CDC employees protested outside headquarters. 

Rather than bypassing the ACIP process entirely — as some experts had feared — RFK Jr. appears to still be holding the meeting, but stacking the committee with his own allies. It’s possible this was a way to get around explicitly breaking promises he had made to Republican Louisiana Senator Dr. Bill Cassidy, who agreed to confirm Kennedy if he promised not to alter processes in place for approving vaccines.

As head of the Senate Committee on Health, Education, Labor and Pensions, Cassidy was instrumental in RFK Jr.’s confirmation. While he publicly expressed concern about RFK Jr.’s anti-vaccine viewpoints during confirmation hearings, he is not among the senators who sent a letter to the Secretary last week urging that he restore the original ACIP committee.

Restricting COVID-19 vaccine access amid attacks on public health

With a new variant on the rise and a summer COVID-19 wave likely, losing access to  COVID-19 vaccines could have devastating consequences, experts and patients told The Sick Times. COVID-19 vaccine uptake has already been low, and this decision will discourage it further, experts say, and sow mistrust in vaccines generally. 

The new guidance effectively bans the vaccine for the majority of the U.S. public, including healthcare workers. The recommendations also ignore the risk of Long COVID, which can affect anyone, including children — in fact, Long COVID recently surpassed asthma as the most common chronic condition in kids. Vaccination has been shown to reduce the likelihood of developing Long COVID. The vaccines have been critical in curbing hospitalizations and deaths, preventing some 68,000 hospitalizations in the 2023–2024 season. 

The move also could allow insurance companies to deny coverage for COVID-19 vaccines — which currently cost around $140 each out of pocket — for “low-risk” groups. That would further restrict access, especially impacting low-income communities, people of color, and those with disabilities or chronic illnesses, including Long COVID.

As Dr. Jonathan Howard, a neurologist in New York City and author of the book We Want Them Infected, put it, Secretary Kennedy’s decision to “ban” the vaccine for so-called healthy people under 65 “shows an incredible use of power.”

This ban comes amid an unprecedented decimation of the country’s health infrastructure that puts the public at risk.

Though the Biden administration unraveled almost all COVID-19 mitigations, Trump officials have taken things much further. The Trump administration shut down the Healthcare Infection Control Practices Advisory Committee, defunded the National Institute for Occupational Safety and Health, and gutted funding for the National Institutes of Health and CDC, including Long COVID responses and research. HHS has spread ample misinformation and threatened to censor medical journals. It has also halted several Moderna contracts for the development of a bird flu vaccine and a combination COVID-19/flu shot.

“RFK Jr. … seems to be intent on seeing more people die and become disabled,” said Jessica Dye, who has Long COVID and myalgic encephalomyelitis (ME). “What he is being allowed to do is a truly insidious form of violence that will disproportionately affect people who are already vulnerable. Vaccines save lives, and rejecting all accepted science kills people.” 

What [RFK Jr.] is being allowed to do is a truly insidious form of violence that will disproportionately affect people who are already vulnerable. Vaccines save lives, and rejecting all accepted science kills people.

Jessica Dye, person with Long COVID and ME

To justify the decision to reduce vaccine access, RFK Jr. pointed to an op-ed in the New England Journal of Medicine coauthored by Makary and Dr. Vinay Prasad, the new lead at the FDA’s Center for Biologics Evaluation and Research, who is known for his vaccine skepticism and mockery of people with Long COVID. 

Prasad and Makary have repeatedly expressed concern over myocarditis, a very rare side effect of the vaccine — and more commonly triggered by COVID-19 than by the vaccine, according to the American Heart Association. “They treated these hypothetical potential future concerns as much more serious than actual death from COVID-19” or infinite repeat infections, said Howard.

The officials also state that randomized controlled trials are needed to determine the vaccines’ safety and efficacy. Howard said that placebo-controlled studies for new boosters would also be impractical, considering rapidly emerging new variants and ethical concerns. Plus, responsibility for these RCTs would be put into the hands of the very pharmaceutical companies these figures so heavily criticize. 

Yet in their calls for a “safer” approach to vaccine policy, these officials have been all too willing to spread their own misinformation and create further confusion. In an appearance on Face the Nation on June 1, Makary contradicted RFK’s statements on X, saying that children getting vaccinated should be a decision between a doctor and the parents.

“We don’t want to see kids kicked out of schools because a 12-year-old girl is not getting her fifth COVID booster shot,” Makary added. In fact, no school district requires this.

“Sending a soldier into a war and not being prepared”

People with Long COVID are concerned that the new guidance will make it harder for them and their families to get vaccinated. One is Jessica Summers, a mother who lives in Richmond, Virginia. “I know firsthand how devastating COVID can be, and I think everyone should have access to vaccines to protect themselves as much as possible,” she told The Sick Times. Indeed, some parents are pushing back on the policy. 

The policy also carries grave consequences for healthcare workers. In addition to their own protection, higher COVID-19 transmission and more serious illness will lead to further understaffing and hospital overcrowding, according to Nancy Hagans, a nurse and president of the union National Nurses United. 

Restricting vaccine availability is like “sending a soldier into a war and not being prepared,” she said. “Healthcare workers need to be able to go to work and feel protected.” Advocacy groups recently published a letter asking insurance companies to continue covering the vaccine for pregnant people. Meanwhile, funding for the CDC’s Vaccines for Children program is, unsurprisingly, on the chopping block.

Uncertainty for future vaccines

Restricting COVID-19 vaccines and their approval processes is likely just the beginning of anti-vaccine policy under RFK Jr., Howard warned. In fact, some doctors have recommended that people who won’t be eligible for COVID-19 shots in the future get all their vaccines updated as soon as possible. 

But Howard, who is under 65 and doesn’t have any of the listed underlying conditions, said he was turned away at a CVS appointment for a COVID-19 booster because it had been less than a year since his previous vaccination. He hadn’t faced any questions or scrutiny other times he attempted to get a COVID-19 shot. Others have reported similar experiences. 

When asked about their policy for COVID-19 vaccinations, CVS spokesperson Amy Thibault said, “We follow federal guidance and state law regarding vaccine administration and are monitoring any changes that the government may make regarding vaccine eligibility.” Thibault offered to investigate any cases of people being turned away inappropriately. 

It’s important to note that many people under 65 do still qualify for vaccinations under a fairly expansive CDC list of conditions. The list includes asthma, cancer, diabetes, HIV, COPD, mental health conditions including depression, and a body mass index (BMI) over 30. 

“While everyone must have the right to get vaccinated, we do need to make sure as many people as possible are aware that they do qualify even under these rules,” said Elana Levin, a COVID-19 justice activist.

While everyone must have the right to get vaccinated, we do need to make sure as many people as possible are aware that they do qualify even under these rules.

Elana Levin, COVID-19 Justice activist

Though the Novavax vaccine was finally approved in May, both it and a recently-approved Moderna vaccine face the same restrictions as other COVID-19 shots. Plus, all the available doses of the prior version of Novavax have expired. This also raises equity and access issues for people with chronic illnesses or those who react adversely to the mRNA vaccine. Novavax is as effective as the mRNA vaccines, but can cause fewer side effects for people with autoimmune conditions and chronic illnesses. 

Levin explained that she has had a better experience with Novavax than the mRNA vaccines. Fewer side effects not only means a more comfortable experience, but also not missing work due to feeling poorly after the shot.

The future for upcoming vaccines targeted at new variants is uncertain, too. 

Doctors could also potentially still prescribe vaccinations “off label” to those not included in the recommendation schedule as a workaround, though whether insurance would cover that is also an open question. And the new guidance could mean companies will produce fewer vaccine doses, which would also restrict their availability. 

Those looking to go to Canada to get future COVID-19 vaccines would have to pay out of pocket, should Canada even have enough supply to serve them.

Dye, whose ME became severe after she contracted COVID-19 in 2023, relies on her family members to care for her. But even if they’re permitted to get COVID-19 vaccines going forward, without insurance coverage, her family would only be able to afford a shot for one person.

“Keeping my health from crumbling further is what we chose as a family,” she said. “It’s a position I don’t think anyone should ever have to be put in — having to choose which one family member gets their health protected.”

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Advocacy opportunities:

• Call your representatives to advocate for vaccine access and public health funding. 
• Leave a public comment ahead of the upcoming June 25–27 ACIP meeting. The comment period closes June 20. 
• Follow the Vaccine Integrity Project at the University of Minnesota for upcoming guidance and other opportunities. 

Laura Weiss (she/her) is a writer and editor focusing on social justice issues including health justice, disability, immigration and labor. She previously worked on the digital team at The New Republic and as managing editor at the North American Congress on Latin America (NACLA). Follow her on Bluesky at @lauralew105.bsky.social‬ or X at @lauralew105.

All articles by The Sick Times are available for other outlets to republish free of charge. We request that you credit us and link back to our website.

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