Key points you should know:

  • Incoming President Donald Trump plans to appoint people who have denied public health measures, including COVID-19 precautions, to lead top health agencies. He’ll be supported by Republican majorities in both houses of Congress.
     
  • Long COVID was already minimized and government-funded research was already moving slowly under current President Joe Biden, but Trump’s “clown car of appointees” will contribute to a worse status quo.
     
  • Long COVID and related disease advocates predict that funding for the National Institutes of Health (NIH) and other health agencies may decrease, and legislation like the Long COVID Research Moonshot Act will be harder to pass.
     
  • While some Republicans have expressed interest in reforming the NIH — which could be advantageous for long COVID research — there is no guarantee that these legislators’ priorities will align with the community’s.
     
  • There may be other potential openings for long COVID research, such as more leniency at the Food and Drug Administration (FDA) and funding from the defense department.
     
  • Advocates encourage the community to not lose hope, reminding that promising research and support has come from outside government-funded programs. Mutual aid and other grassroots efforts are also important at this time.

As incoming President Donald Trump has announced a growing list of top nominees who’ve denied science and public health, people with long COVID are preparing for an administration likely to be less friendly for research and advocacy. Along with Trump in power, Republican majorities in the House and Senate may lead to reduced funding for federal health programs, worse odds for new legislation, misinformation, and other challenges, advocates say.

“Cautiously pessimistic,” is how Michael Sieverts, policy advisor for the Patient-Led Research Collaborative,* described his overall attitude toward government-funded Long COVID research under Trump. He predicts funding for the National Institutes of Health (NIH) and other agencies will decrease and new legislation such as the Long COVID Research Moonshot Act will be less likely to pass.

Trump’s prospective appointees have denounced COVID-19 precautions, such as mask and vaccine requirements that likely saved hundreds of thousands of lives early in the pandemic. Potential head of the Food and Drug Administration, Marty Makary, stated in 2022 that long COVID is “exaggerated,” “over played,” and “not as bad as advertised,” writing off the lived experience of millions of people living with a debilitating and disabling disease. Jay Bhattacharya, Trump’s pick for the NIH, was an author of the Great Barrington Declaration, a fall 2020 letter claiming that the U.S. should “resume life as normal” months before the first vaccines became available.

Trump’s cabinet may be more likely to recognize people experiencing symptoms similar to long COVID following vaccination, though advocate Sara Johnson described this in an emailed statement as a “no-win situation.” Johnson added, “We’re so neglected that almost any attention feels welcome, but having controversial figures like Robert F. Kennedy Jr., Vinay Prasad, or former Centers for Disease Control and Prevention (CDC) Director Robert Redfield involved won’t help our credibility.”

Still, Sieverts and other advocates say it’s important for lobbying work to continue, as potential opportunities for long COVID research remain. Advocates also emphasized that the incoming status quo under Trump follows four years of minimizing the ongoing pandemic under current President Joe Biden. “The reality is, the outgoing administration really did not prioritize addressing long COVID,” said Meighan Stone, executive director of the advocacy group Long COVID Campaign.

Advocates and experts encouraged the long COVID community not to lose hope. Promising research and organizing has already happened — and will continue — without the federal government’s support, such as studies supported by groups like the PolyBio Research Foundation and Open Medicine Foundation.

“The re-election of Trump and this clown car of appointees really demands that we build things that are better, that are not so vulnerable to election cycles, and that we focus our advocacy efforts outside of the traditional realm of electoral politics,” said Beatrice Adler-Bolton, cohost of the Death Panel podcast and coauthor of the book “Health Communism.”


While many in the long COVID community had high hopes for Biden’s administration in 2020, the current president’s actions have led to great disappointment. Biden has overseen a complete rollback of COVID-19 measures, from the end of the government paying for vaccines to the CDC recommending shorter and shorter isolation periods for those infected. Over 800,000 Americans have died of COVID-19 and millions have developed long COVID since Biden took office.

People with long COVID, related diseases, and the broader disability community have been up against “a really terrible status quo” under Democratic leadership in the last four years, Adler-Bolton said. But things could get worse: “We’re going to see the rhetoric of disposability that has been on display during the Biden administration get out of control,” she said.

Biden’s administration has taken some actions to recognize long COVID, such as creating the Office of Long COVID Research and Practice and identifying ways for different federal agencies to respond to the crisis. But it has fallen short on supporting the patient community, said Karyn Bishof, founder of the COVID-19 Longhauler Advocacy Project (C19LAP), in an emailed statement.

Before leaving office, the current administration should build on its prior work “to take meaningful action for the tens of millions living with long COVID,” Bishof said. Bishof called on Biden to declare long COVID a national public health emergency during his final weeks in power.

Government-supported long COVID research, such as the NIH’s flagship RECOVER program, has also moved slowly and led to limited progress under Biden. RECOVER has received about $1.6 billion total in funding, a fraction of what scientists say is needed to understand this complex disease. Yet the Biden administration has failed to request substantial additional research funding in its budget proposals, Stone said.

This lack of investment in long COVID research follows decades of underfunding for other infection-associated chronic diseases, such as myalgic encephalomyelitis (ME), said Ian Lipkin, who has run a ME research center at Columbia University for years with limited NIH support.

Sieverts similarly pointed out that long COVID and related diseases have not received sufficient attention under the current NIH. “We can’t be total defenders of the status quo,” he said.

Long COVID researchers may thus benefit from NIH reform efforts championed by some Republicans in Congress, Sieverts suggested. One reform plan from the Republican-led House Energy and Commerce Committee specifically cites RECOVER as an example of institutional issues at the agency. Ben HsuBorger, U.S. advocacy director at #MEAction, similarly noted that a NIH reform bill passed in 1993 created the agency’s Office for AIDS Research and required better representation of women and other minority groups in science.

“NIH reform should be on the table,” HsuBorger said. But it’s unclear to what extent Republican reformers’ goals will align with the goals of long COVID, ME, and related disease communities, he added. It’s also unclear how recent initiatives like the Office of long COVID will fare under Trump.

Looking ahead to budget cuts, uncertainty

People that Trump has tapped for top health positions — such as RFK Jr., nominated for secretary of Health and Human Services — hold anti-science, conspiracy-theorist views and have indicated they will cut support for medical research. “At a town hall earlier this year, RFK Jr. stated that he would instruct the NIH to pause drug development and infectious disease research for eight years,” Bishof said.

Other advocates agreed that research efforts like the Moonshot bill will face worse odds under Trump and a Republican-controlled Congress. However, there may still be opportunities to add Republican co-sponsors who would help champion the bill, Stone said.

In response to questions during a recent webinar about how the incoming administration may impact RECOVER’s upcoming clinical trials, Foundation for the National Institutes of Health CEO Julie Gerberding expressed confidence that this program, at least, would continue. “I feel from a realistic point of view, this work will get done,” she said. “Even if there are significant changes in administrative overview of the NIH, the work will go forward.”

Opportunities for continued long COVID research may also come from other agencies. For example, the FDA may be “looser or more open to considering different drugs, other treatments that might be useful,” Lipkin said. This could be both advantageous and dangerous, as FDA standards are important for ensuring safety in clinical trials, he said.

The Department of Defense is another potential research supporter. This agency’s current fiscal year 2025 budget proposal adds long COVID to a list of priority areas for medical research, Stone said. If this makes it to the final budget, likely to be passed by Congress in the spring, the update opens up $370 million in funding for applications by long COVID researchers.

Even if research funding continues, however, support for public health measures for COVID-19 and other infectious diseases is likely to get even more difficult. Of all the federal health agencies, the CDC may be most under threat by the new administration due to continued animosity from Republicans for life-saving measures early in the pandemic, health experts have suggested. “The CDC is going to be hit hard, I predict, harder than NIH,” Lipkin said.

Ongoing COVID-19 surveillance — already severely diminished following the end of the federal public health emergency in 2023 — may receive less support under potential RFK Jr. leadership. Well-established public health measures like childhood vaccinations will be challenged, and the new administration may be unprepared for emerging threats like the bird flu H5N1.

RFK Jr. may also help spread misinformation that is harmful to long COVID, ME, and related disease communities, said Jaime Seltzer, scientific director at #MEAction. For example, RFK Jr. has claimed he will cut support for infectious disease research and “focus more on chronic illness,” not acknowledging that the two areas are, in fact, deeply interconnected, she said.

Don’t lose hope, keep organizing

In the face of threats and uncertainty, long COVID advocates will need to get creative over the next four years, Stone said: “We’re going to have to go from really broad, simple asks to a mixed portfolio of interventions and funding opportunities and policy openings, to ensure that we’re pushing everywhere we can.”

Stone is optimistic about advocates’ ability to continue building relationships with policymakers during the next administration. The disease is “not inherently partisan,” she said, emphasizing that people in every part of the country and of every demographic have been impacted by long COVID.

To build those relationships, Stone and her colleagues at the Long COVID Campaign are planning a dedicated Long COVID Hill Day in early 2025. This event will involve bringing people with long COVID from around the U.S. to Washington, D.C. to meet with legislators. 

“Advocates should be calling their elected officials, making sure Congress takes action,” HsuBorger said. Current demands could include extending Medicare coverage of telehealth past the end of this year and maintaining long COVID funding in 2025 appropriations bills, he said. Outside of the federal government, there are also advocacy opportunities at the state and local level, HsuBorger added.

There are also many opportunities to organize outside of politically-focused advocacy, said Adler-Bolton, from Death Panel. “The state will not save us. If that’s not something you got from the last four years, you should certainly be getting it from the incoming administration,” she said.

Adler-Bolton recommends building mutual aid networks, coalitions “that connect health and disability justice to abolitionist struggles,” and other community-focused organizing that can meet people’s needs right now without waiting for government support. The election results present “an opportunity to fight for what’s ours,” she said.

Leading long COVID research has already come from outside government-funded programs, and there’s a history of similar trajectories with other diseases, she said. Lipkin also sought to remind people with long COVID, ME, and related conditions that scientists studying these diseases will continue working regardless of the political climate. “Don’t give up hope,” he said.

At times like this, it’s easy to feel lonely and isolated, HsuBorger said, but it’s important to push back on that feeling by supporting fellow community members: “Now is the time for people to support each other, to keep each other safe, and to work for the change we want to see.”

*Editor’s note: PLRC, like The Sick Times, has received support from the Balvi and Kanro funds. Our newsroom operates independently of financial supporters.

This article was published by The Sick Times, a website chronicling the long COVID crisis, on DATE, 2024. It is republished with permission.