RFK, Jr. Still Doesn’t Care About Long COVID Patients
Late last month, Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr. testified that he was making Long COVID a top priority, noting that his own son had been “debilitated” by the disease. It is certainly terrible that Secretary Kennedy’s son is among the millions of Long COVID sufferers in the US alone. But it’s difficult to take the Secretary seriously when he asserts his commitment to helping Long COVID patients, given that he has done an awful lot to contradict that claim directly.
Long COVID is a chronic, multisystem condition that persists following an infection with SARS-CoV-2, the virus that causes COVID‑19. The condition can arise regardless of the severity of the initial illness, and symptoms may persist or emerge weeks to months following COVID-19’s acute phase. These symptoms can include, but are by no means limited to, difficulty thinking or remembering (sometimes described as “brain fog”), post-exertional malaise, shortness of breath, joint pain, chest pain, lingering cough, changes in or loss of taste and/or smell, and extreme fatigue. Surveys suggest that as many as a third of those who’ve survived COVID-19have experienced Long COVID symptoms. Researchers have drawn parallels between Long COVID’s impact and that of a stroke or Parkinson’s, and some studies suggest that Long COVID can lead to quality-of-life reductions comparable to those associated with advanced cancers.
In September 2025, we documented multiple ways by which Secretary Kennedy had shown the American people that he did not, in fact, care about Long COVID patients or about preventing future cases of Long COVID. Those actions included closing the Office of Long COVID Research and Practice without meaningfully replacing it; derailing or stalling Long COVID research and trials by cutting NIH funding; restricting access to COVID-19 vaccines, particularly for children; defunding mRNA vaccine research; stacking the Advisory Committee on Immunization Practices (ACIP) with anti-vaccine allies; weakening wastewater surveillance; and generally reducing support for chronic disease prevention and treatment.
Fast forward to today, and many of these harmful developments are still in place. Secretary Kennedy claims to care deeply for those who are suffering, but he has done little to repair the damage he has already caused. Despite assurances that the Office of Long COVID Research and Practice had been disbanded to make way for a more effective replacement, HHS appears to have replaced it with little more than a web page. With no disrespect meant to the many impactful web pages out there, this particular web page is a far cry from the coordinated infrastructure that Long COVID patients actually need. The administration is also once again seeking to eliminate the National Center for Chronic Disease Prevention and Health Promotion, after Congress prevented it from doing so in FY2026.
Additionally, while the administration ultimately (partially) reversed some specific cuts to Long COVID research, it appears to have only brought back particular grants, not the broader Long COVID infrastructure. The current five-year funding stream is smaller than the original investment that launched the program. The impacts of the previous funding disruptions have also persisted. Such abrupt cancellations, even when funding is ultimately restored, create uncertainty for investigators and patients, delay or threaten studies already underway, undermine trust in federally funded clinical research, and jeopardize the professional pipeline for new research talent.
Secretary Kennedy has also continued to deny or minimize looming Medicaid cuts, despite their relevance to the survival of disabled and chronically ill people. Working-age adults with disabilities are more likely to rely on public health insurance such as Medicaid relative to their peers without disabilities. Stringent new work requirements, enacted to offset tax cuts in the One Big Beautiful Bill Act of 2025, threaten to cut off people with Long COVID from the care they need for a condition that is often as medically complex as it is activity-limiting. Long COVID patients, in particular, may struggle to assemble the documentation required to qualify for an exemption from the work requirements, especially given how difficult it can be to obtain a diagnosis.
Kennedy’s HHS has also continued to undermine prevention efforts. Avoiding infection (including reinfection) is the best way to avoid developing Long COVID. Reinfection also poses substantial risk to those who already suffer from Long COVID, as reinfections can exacerbate existing symptoms and introduce new ones. Yet the administration has proposed further cuts to wastewater-based disease surveillance, a crucial public health tool and one of the only remaining ways to track COVID-19 case volume throughout the US. Access to COVID vaccines — which, while imperfect at preventing either infection or Long COVID, appear to at least be value-added on both fronts — also remains curtailed, especially for young children. (Long COVID has become frighteningly common among children, with uncertain implications for their long-term health and development.) The ACIP, which has traditionally played a key role in establishing vaccination guidelines, remains stacked with Secretary Kennedy’s hand-picked vaccine skeptics. Funding for mRNA research remains cut. And earlier this month, the Food and Drug Administration (which is part of HHS) reportedly intervened to block the publication of research results related to COVID and shingles vaccines, including findings that demonstrate a reassuring safety profile for COVID vaccines.
Meanwhile, under Secretary Kennedy, HHS has folded Long COVID into a broader “invisible illness” category that it asserts should be “disease agnostic”. According to the HHS site, “A new paradigm is needed to address complex chronic disease because fragmented, disease-by-disease, and organ-by-organ approaches are insufficient for understanding multisystem conditions like Long COVID.” This statement acknowledges something about which Long COVID patients have often complained (a fragmented, organ-by-organ approach) and attaches it to something more problematic (rejecting going “disease-by-disease”). Many chronic conditions do have things in common, and many preventative measures can work against multiple pathogens (e.g., use of N95 respirators and improved indoor air quality, though funding for Biden’s indoor air initiative has largely been allowed to lapse under the second Trump administration). But taken alongside the behavior of Kennedy’s HHS, one could be forgiven for wondering whether this New Paradigm is instead meant to sidestep the actual causes of Long COVID and the chronic illnesses to which Long COVID is compared on the HHS site. This would certainly explain the deemphasis of disease prevention at HHS. The new approach to preventing and treating Long COVID and other infection-associated chronic illnesses risks overlooking the specific root causes of each — namely, the infections themselves. Tackling these conditions requires dedicated funding and staffing that treats patients’ conditions with the specificity they deserve.
If Secretary Kennedy really cares about Long COVID patients, he should try showing rather than telling. He can start by reversing the damaging policies he’s already put into place. He must also fully obligate all remaining funding to avoid any risk of rescission. Until he does these things, it’s hard to see his statements about Long COVID as anything more than empty words.
This first appeared on CEPR.
No comments:
Post a Comment