By Jesse Hagopian
This article was originally published by Truthout
RFK Jr. has shut down the Office of Long COVID Research and Practice, gutted funding, and derailed trials and studies.
For more than three years, I’ve lived with long COVID.
The dizziness never leaves. I can’t drive more than half an hour without starting to get nauseous. Any strenuous activity — mental or physical — leaves me with post-exertional malaise that feels like a hangover the next day. I’ve learned to adapt and find gratitude for many things, but life remains an exhausting calculus of rationing energy across work, chores, and my kids.
I am only one of over an estimated 20 million Americans with long COVID. Symptoms for “long haulers” range from brain fog and fatigue to joint pain, heart palpitations, dizziness, loss of taste or smell, and many others. Many live with chronic disability, forced out of jobs and daily routines.
That’s why when Robert F. Kennedy Jr. (RFK) was nominated as Secretary of Health and Human Services and promised to “enthusiastically” support long COVID research, some long haulers held out hope that he would be an ally — even as others feared his record of disinformation told a different story. I never believed that he would deliver on his promise to “Make America Healthy Again,” knowing his long record of spreading medical misinformation and his alliance with forces hostile to public health.
Instead of being an ally, Kennedy shut down the Office of Long COVID Research and Practice, gutted the National Center for Chronic Disease Prevention and Health Promotion, and derailed National Institutes of Health (NIH) trials and studies. After public pressure, he restored some RECOVER grants, but the broader system remains in ruins. Meanwhile, Kennedy staged a hollow “roundtable” promising a “sustained effort,” while offering no new funding, no roadmap, and little patient involvement.
The severity of this crisis isn’t just about those who already have long COVID. Every infection carries the risk of long-term disability, so anyone could join our ranks tomorrow. Even if you never develop long COVID, you will feel its impact when hospitals lose nurses, classrooms lose teachers, families lose caregivers, and bus routes lose drivers. Long COVID weakens the infrastructure we all depend on. When leaders gut research or restrict vaccines, they’re not only abandoning long haulers — they’re putting the entire society at risk.
Kennedy’s assault on long COVID care mirrors the Trump administration’s wider attack on disability rights — from gutting workplace protections to imposing new Medicaid work requirements that punish the chronically ill.
The Politics of Long COVID: Science vs. Sabotage
Long COVID is a chronic, multisystem condition that can follow even mild infections, leaving many with disabling symptoms comparable to a stroke, Parkinson’s, or some cancers. Research points to several causes — including lingering viral remnants, chronic inflammation, immune dysfunction, and nerve damage — similar to what’s seen in ME/CFS, Gulf War Illness, and post-SARS syndromes.
There is no cure, only limited treatments that ease symptoms and help people get through daily life. Studies consistently show vaccination remains the strongest defense: Staying up to date on COVID shots lowers the risk of long COVID by roughly between 20 percent and 30 percent, and each reinfection increases the danger.
Yet on September 19, a CDC vaccine advisory panel — stacked with members appointed by RFK — voted to eliminate the standing recommendation that everyone in the U.S. be vaccinated against COVID-19. Instead, they called for vaccines to be given only through “shared decision-making” with a health care provider.
Reuters reported that the two-day meeting “highlighted deep divisions over the future of the U.S. immunization schedules under Kennedy, who has long promoted claims about vaccine harms that run contrary to scientific evidence.” For a condition like long COVID — which worsens with each reinfection — Kennedy’s decision is catastrophic. Stripping away broad vaccine access guarantees that millions more Americans will be left sick, disabled, and unsupported.
The Politics of Disposability
As much of a plague as Kennedy has been to the public, he is not the only disease afflicting the nation. Both major parties have failed to take long COVID seriously. Politicians in both parties want to declare the pandemic “over,” while millions are left behind, sick and struggling. Democrats underfunded support for people with long COVID from the start and have largely failed to champion needed disability benefits. Kennedy magnified those failures through disinformation, but he isn’t the only problem.
The crisis runs deeper than any one administration. At its core is a for-profit health care system that decides which diseases matter based on profitability, not human need. For decades, U.S. health policy has prioritized markets over patients: hospitals closing in poor communities, insurers denying care, and pharmaceutical companies maximizing profits instead of researching medications for complex conditions that might not yield immediate returns. Long COVID, with its diffuse symptoms and lack of a single profitable cure, sits at the bottom of this hierarchy.
Who receives care and who does not is no accident: This system was built at the crossroads of medicine and social control, where only the “fit” were deemed worthy of survival. In the early 20th century, eugenics was mainstream ideology in the United States — taught at elite universities, written into immigration law, and enforced through sterilization statutes in more than 30 states. Black women in the South were so frequently subjected to forced sterilization that civil rights activists called it the “Mississippi appendectomy.” In North Carolina alone, more than 7,000 people were sterilized under state law, with Black women making up the majority by the 1960s.
The civil rights movement eventually pushed eugenics out of classrooms and mainstream science, but its logic never fully disappeared. That contempt for disabled and chronically ill people surfaces across political lines and institutions — from insurance companies that deny coverage for chronic conditions because they’re “too costly,” to policymakers who design safety nets with disability-sized holes. These denials echo the old eugenic premise that some bodies are burdens to be managed rather than lives to be cared for.
It’s visible, too, in Donald Trump’s assault on disability rights: He mocked a disabled reporter at a rally, reportedly refused to appear with amputee veterans because “it doesn’t look good for me,” and his nephew reported that he said people with serious disabilities “should just die.” His administration’s policies matched that worldview. Under Trump’s new Medicaid work requirements, long haulers who cannot meet an 80-hour work quota risk being kicked off the very program meant to keep them alive, even as his administration gutted workplace accommodations and rolled back disability hiring goals under the Rehabilitation Act.
His cruelty reflects a political and economic order that consistently deems some lives worth less. Though others may speak more politely than Trump, chronic illness is still widely treated as a personal failure, with care rationed through cost and profit. Millions with long COVID — disproportionately women and people of color — are dismissed, denied accommodations, and left without support. In a system that values people only for their productivity or profitability, the sick and disabled are rendered disposable.
The Rise of Pharmaceutical Capitalism
Before World War II, most U.S. medical breakthroughs came from universities, teaching hospitals, and nonprofit labs supported by philanthropy or modest public funding. Discoveries like insulin, penicillin, and early vaccines emerged from a system driven by curiosity and public need. Drug companies mainly handled production and distribution.
After the war, this model shifted dramatically. The federal government began pouring money into biomedical research through the NIH and military contracts, while corporations like Pfizer, Merck, and Eli Lilly built vertically integrated labs that controlled everything from discovery to marketing. Academic institutions were increasingly relegated to early-stage research, while corporations took control of developing, testing, and marketing new drugs.
Drug development soon became tethered to profitability. Firms chased “blockbuster drugs” — lifelong prescriptions for common conditions like high blood pressure and high cholesterol — because they guaranteed steady profits. Pfizer’s Lipitor alone generated more than $125 billion and spawned a wave of near-identical statins. Health care became defined not by public well-being, but by what could be medicated and marketed.
Diseases that didn’t fit this model were sidelined. Patients with ME/CFS in the 1980s or veterans with Gulf War Syndrome in the 1990s were initially dismissed as “psychosomatic,” not because they weren’t suffering, but because their conditions required complex, multidisciplinary care without a profitable pill pipeline.
As physician Wendy Johnson writes in Kinship Medicine, “our healthcare system is woefully unprepared to address maladies that come from the conditions of our lives.” Doctors can only offer “short-term Band-Aids that don’t address root causes.” True health, she argues, requires “safe housing, clean environments, strong communities, and daily connection to the natural world.” She adds: “Good evidence shows that what we currently consider the practice of medicine only addresses about 20 percent of what makes us healthy… focusing on just that last 20 percent is like fielding a soccer team with only a goalie.”
Long COVID proves the point. A 2025 study shows that recovery often depends less on biology than on social conditions like poverty, housing, and discrimination — factors our pharmaceutical capitalist system ignores because they don’t generate profit.
Lessons From HIV/AIDS Activism
There was one major exception to the pharmaceutical industry’s neglect of complex conditions: HIV/AIDS. In the early years of the epidemic, political leaders like Ronald Reagan refused to even say the word “AIDS” in public. Drug companies saw no profit in research, and tens of thousands of people — disproportionately gay men, Black and brown communities — were dying.
It was only the relentless organizing of groups like ACT UP and the Treatment Action Group that forced change. Activists staged mass die-ins, occupied FDA offices, disrupted Wall Street, and shamed politicians and corporations into action. Their campaigns didn’t just demand treatment; they reshaped how clinical trials were conducted, sped approval of life-saving drugs, and forced the government to acknowledge the epidemic it tried to ignore.
That history holds urgent lessons: Like ME/CFS and Gulf War Illness, long COVID won’t be solved by markets but by collective pressure from patients and allies.
Toward Disability Justice
What this history teaches us is that care and justice have never come from the market or from political leaders’ goodwill — they’ve always been won through collective struggle. It was only because of grassroots organizing that the NIH reinstated RECOVER research grants after Kennedy tried to shut them down — a reminder that patient voices can defend needed research and save lives.
Groups like the Long COVID Action Project, Long COVID Justice, the Patient-Led Research Collaborative, the Black Long Covid Experience, and the Disability Economic Justice Collaborative are leading this work. They are disrupting Senate hearings, mobilizing research, building community, and demanding care rooted in justice. Their advocacy is reaching Washington, too: This March, Sen. Bernie Sanders, in partnership with the Longhauler Advocacy Project, introduced a resolution to formally recognize March 15 as Long COVID Awareness Day. That victory was won not by false promises from above, but by relentless organizing from below.
And let me be clear: the collective health of the nation must be a paramount priority, yet we cannot “Make America Healthy Again” because America has never been healthy for all. From the government distributing smallpox-infected blankets to Native peoples, to the whippings and torture of enslaved Africans, to eugenics programs that sterilized Black, Indigenous, immigrant, and poor women against their will, to insurance giants that deny lifesaving care, U.S. health policy has always been entangled with violence, exclusion, and control. Today, Trump and RFK Jr. have shown us what contempt for the sick and disabled looks like — the mockery, the disinformation, the erasure.
But long haulers, disability justice organizers, and allies fighting for care have shown us what solidarity looks like. As Patty Berne, co-founder of Sins Invalid and a central voice in shaping disability justice, reminded us: “A Disability Justice framework understands that all bodies are unique and essential, that all bodies have strengths and needs that must be met.”
We must come to realize that if we live long enough, every one of us will experience disability. Instead of viewing those with disabilities or chronic illness as unproductive or no longer useful, we must fight for a society that measures its health by how well it cares for those who need the most.
When we build a world that cares for the most vulnerable, we build a world that finally cares for us all.
This article was originally published by Truthout and is licensed under Creative Commons (CC BY-NC-ND 4.0). Please maintain all links and credits in accordance with our republishing guidelines.
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