Tell this administration to stop erasure of Long COVID programs, solutions, and us!

Impacts to Long COVID Programs Since January 2025

1. Closure of the HHS Office for Long COVID Research and Practice, which was intended to coordinate Long COVID efforts across federal agencies, represents a devastating loss. This office was designed to unify and accelerate government-wide responses, but was shut down before it had the chance to fully launch or impact policy.
2. Termination of the HHS Secretary’s Advisory Committee on Long COVID eliminated a vital policy body that provided cross-agency guidance on research, disability rights, and healthcare strategy. Without this committee, there is no centralized national leadership driving solutions for Long COVID and associated conditions.
3. Removal of Long COVID resources (ie: JAN Long COVID Guidance) from government websites has erased trusted, science-based information that clinicians, patients, and caregivers relied on. This rollback promotes misinformation, increases misdiagnoses, and leads to avoidable healthcare complications and costs.
4. The AHRQ Long COVID Care Network had a contract cancelled that allowed patient input into crucial decision making and shaping of clinician care for Long COVID. Additionally, and after the initial contract cuts, sites are now expected to lose 80-90% of their funding in the coming weeks.
5. Closure of SAMHSA and DOL Long COVID Programs stopped the launch of important mental health and employment initiatives for people living with Long COVID. These programs were essential for addressing the workforce impact and psychological toll of this mass-disabling condition.
6. Long COVID organizations and initiatives are experiencing extreme censorship both on social media, and in the media, creating major issues for organizing and educating online, which is an essential tool for people with disabilities who cannot participate in in-person events.
7. Elimination of public comment opportunities at HHS has silenced patients and advocates, excluding them from decisions that directly impact their lives. Without this input, federal agencies risk crafting policies that are disconnected from real-world needs and ineffective in practice.
8. Disbandment of the CMS Health Equity Advisory Committee threatens essential Medicaid and Medicare protections. This rollback risks coverage loss for millions of disabled and low-income Americans, increases emergency room visits, and drives up uncompensated care costs—ultimately raising national healthcare spending.
9. Gutting of Diversity, Equity, Inclusion, and Accessibility (DEIA) programs undermines protections in healthcare, employment, and education. These rollbacks disproportionately affect people with Long COVID and other disabilities—further pushing individuals out of the workforce and into poverty.
10. Halting of disability rights investigations leaves children with disabilities, including Long COVID-related impairments, unprotected in schools. Without enforcement of federal protections, students face increased discrimination, exclusion, and long-term educational and economic harm.
11. Defunding of NIH research on Long COVID Associated Conditions (ie: ME/CFS) has halted critical scientific progress. These disruptions delay the development of treatments that could help people return to work and reduce federal disability claims. Investing in this research now would not only improve lives but also yield long-term economic savings.
12. DOD and VA programs are still ongoing, but are self-run and at risk of internal funding losses supporting their Long COVID research programs.
13. The NIH RECOVER Initiative is the only federally funded Long COVID program left standing, and it is currently at great risk.