Last week, a delegation organized by the grassroots advocacy group the Long Covid Campaign traveled to Washington D.C., asking Senate leaders to accelerate over a billion dollars in funding for Long Covid research with the Biden administration’s fiscal year 2025 budget for the National Institutes of Health (NIH).
The advocates made themselves known in the U.S. Senate Labor, Health and Human Services (LHHS) Appropriations Subcommittee Hearing by applauding at each mention of Long Covid, coordinating matching shirts, and wearing respirators. The disease received attention from numerous senators including Sen. Patty Murray and Sen. Susan Collins, as well as NIH director Dr. Monica Bertagnolli, who acknowledged the NIH’s slow progress on Long Covid research.
“We are so grateful for our partnership with the people that are affected by this [Long Covid and Myalgic Encephalomyelitis],” Bertagnolli said during the hearing. “They have taught us over the last two years what we needed to do, now we just need to deliver for them.”
Despite this recognition at the hearing, the Biden administration’s current 2025 budget requests only “minimal” funding to support the millions of Americans with Long Covid, according to the Long Covid Campaign.
Meighan Stone, the group’s executive director, called out the Biden administration for this failure to support the millions of Americans with Long Covid —as advocates have urged since December 2023. Her organization, the advocacy group Long Covid Moonshot, and the Patient-Led Research Collaborative have called on Congress to appropriate at least $1.2 billion in the 2025 budget for Long Covid research — including $1 billion allocated outside of the controversial RECOVER initiative.
This ask for the 2025 budget is separate from Sen. Bernie Sanders’ Long Covid Moonshot bill which would allocate $1 billion a year, for 10 years.
The organizations would also like to see $200 million in high-risk, high-reward funding for the Advanced Research Projects Agency for Health (ARPA-H), an independent agency that is part of the NIH budget. In addition, they ask for $20 million to support the HHS Office of Long Covid Research and Practice’s cross-agency coordination of the U.S. response to Long Covid.
“We hope the NIH will take this opportunity to work with patients and Congress to course-correct RECOVER’s missteps, refocus its research portfolio on rapid deployment of diagnostic tests and interventional drug trials — and finally reverse the decades of neglect and lack of investment in associated diagnoses such as ME/CFS and Dysautonomia that now harm a new generation of Long Covid patients,” Stone said in a press release.
One patient advocate, Amanda Martin, traveled from New Hampshire for the hearing. “We’re here reminding our representatives that Covid hasn’t gone away,” she told local New Hampshire news station W-MUR, “and neither have we. We’re just at home in our sick beds.”
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