Chandelier
Senior Member (Voting Rights)

I Am One of 20 Million in US With Long COVID. RFK Pulled the Rug From Under Us.
RFK Jr. has shut down the Office of Long COVID Research and Practice, gutted funding, and derailed trials and studies.

When we build a world that cares for the most vulnerable, we build a world that finally cares for us all.
AI Summary:
The Abandonment of Long COVID Patients Under RFK Jr.'s Health Leadership
Living with Long COVID
The author, one of over 20 million Americans suffering from long COVID, shares personal struggles with chronic symptoms such as dizziness, fatigue, and post-exertional malaise. These symptoms severely affect daily life, work, and family responsibilities. Long COVID manifests in many forms, including brain fog, heart palpitations, joint pain, and sensory loss, often leading to long-term disability.
RFK Jr.’s Broken Promises
When Robert F. Kennedy Jr. was appointed Secretary of Health and Human Services, many hoped for his support in addressing long COVID. Despite initial promises, Kennedy shut down the Office of Long COVID Research and Practice, slashed funding, and disrupted NIH trials. Though some programs were later partially restored under pressure, the infrastructure remains weakened. His public events and roundtables have lacked meaningful action or funding.
Wider Impact of Long COVID Neglect
Neglecting long COVID isn’t just a personal issue; it affects society’s core functions. As healthcare workers, teachers, and caregivers fall ill, public services suffer. Kennedy’s weakening of vaccine policies — including the CDC’s shift to limited recommendations — increases the risk of future infections and long-term disability. His approach resembles the Trump administration’s rollback of disability rights and protections.
Science Undermined by Politics
Long COVID is a serious, multisystem illness that can develop after mild infections. Research points to immune dysfunction, nerve damage, and lingering viral presence. Vaccines significantly reduce the risk, yet Kennedy’s appointees undermined public immunization campaigns. These policy choices endanger millions and contradict scientific evidence.
Historical Context and Systemic Injustice
The neglect of long COVID reflects a broader, systemic issue. U.S. healthcare often prioritizes profit over people, especially in diseases that lack clear pharmaceutical solutions. This echoes a long history of eugenics and the marginalization of those deemed “unfit” — including disabled individuals, the chronically ill, and communities of color.
Past policies, from forced sterilizations to inadequate disability support, reveal a healthcare system rooted in control rather than care. Today's political decisions continue to treat illness as individual failure, not as a social responsibility.
Pharmaceutical Capitalism and its Limits
Post-WWII, U.S. drug development shifted from public interest to corporate profit. Companies focused on developing high-revenue medications while sidelining complex conditions like ME/CFS, Gulf War Syndrome, and now long COVID. These illnesses require multidisciplinary care, not just profitable pills. Social conditions like housing, poverty, and discrimination also influence recovery — factors neglected by profit-driven models.
Activism as a Catalyst for Change
The HIV/AIDS crisis provides a roadmap. Only through the activism of groups like ACT UP did the government and pharmaceutical companies respond. Today, long COVID advocacy groups are pushing for similar recognition and support. Their organizing has already restored some defunded programs and brought political attention to the issue.
Toward a More Just Healthcare System
Real care and justice are won through collective action, not market incentives or political promises. Grassroots groups are advancing disability justice by demanding inclusive research, equitable care, and systemic change. Recognizing March 15 as Long COVID Awareness Day is one example of their growing impact.
The U.S. has never provided equitable health care for all. From colonial violence to modern insurance discrimination, its history is rooted in exclusion. Kennedy and Trump’s disregard for the disabled highlights the ongoing crisis. But activists, long haulers, and allies are building a vision of care rooted in justice, not profit.
Conclusion: A Call for Solidarity
Every person will likely face disability at some point in life. A just society is measured by how it treats its most vulnerable. Building systems that support chronically ill and disabled individuals benefits everyone. Long COVID may be a defining health challenge of our time, but with solidarity and justice-driven advocacy, it can also become a catalyst for systemic change.