FOR IMMEDIATE RELEASE
December 18, 2023
Media contact: team@patientledresearch.com
In a united effort, a diverse coalition of clinicians, researchers, health policy experts, NIH RECOVER PIs, journalists, patient and disability organizations, community organizations, and research organizations have signed onto a compelling letter to President Joseph Biden, urging immediate action to address the crisis of Long COVID and other infection-associated chronic conditions in the upcoming FY25 budget. Signatories include Dr. Ezekiel Emanuel, Dr. Akiko Iwasaki, Dr. Ziyad Al-Aly, Dr. Eric Topol, Dr. Robert Wachter, Ed Yong, the Long COVID Alliance, Disability Visibility Project, Disability Rights California, and Center for Economic and Policy Research.
out, and NIH budgets have been silent on future funding for Long COVID research. Additionally, many patients do not have access to high-quality care and fall through cracks in the social safety net, which has long neglected disabled people.
This joint effort underscores the need for a unified approach in tackling the multifaceted challenges posed by Long COVID, and reflects a shared commitment to raising awareness about the devastating impact of Long COVID on individuals, families, and communities.
Long COVID is not only a public health crisis but also an economic and social challenge of immense proportions, reflected in the CDC’s latest estimate of more than 1 in 20 American adults currently living with Long COVID and an estimated economic cost of $3.7 trillion in the first five years alone. However, the $1.15 billion in NIH research funding for Long COVID that was allocated in 2021 and used to create the RECOVER Initiative is running
The coalition calls on President Biden to prioritize the health of millions of Americans affected by Long COVID and other infection-associated chronic conditions in the FY25 budget by providing robust and sustained investments. The specific requests include:
- Establishing an NIH Center or Office with a budget in the billions to coordinate and fund research on Long COVID and other infection-associated chronic conditions.
- Directing federal agencies to include responses to Long COVID and other conditions in their budgets, addressing social safety net programs, social determinants of health, biomedical research, clinical trials, healthcare provider education, healthcare delivery research, public health education, home- and community-based care, and prevention efforts.
The letter concludes by urging President Biden to acknowledge the crisis in his State of the Union address, demonstrating a commitment to address the urgent needs of those affected.
The Sick Times covered the letter here, which can be republished as long as they are credited and linked back to their website.
Signatures will continue to be collected from individuals and organizations. If interested in signing on, please fill out this form.
A link to the letter can be found here: https://patientresearchcovid19.com/advocacy/letter-to-president-biden-fy25-budget/
For media inquiries, please contact team@patientledresearch.com
About Patient-Led Research Collaborative: Patient-Led Research Collaborative (PLRC) is a multi-disciplinary group of people with lived experience of Long COVID, and were the first to conduct research on Long COVID. PLRC’s work thus far has resulted in the identification of key symptoms, timeline, comorbidities, and possible treatment options for Long COVID, as well as a $4.8 million fund for biomedical research with awards decided by patients, a publication of patient-generated hypotheses, and research into the impact of reinfections, identifying Long Covid phenotypes, Long Covid impact in LMIC countries, and other subjects. They have presented their work to the World Health Organization, United States House of Representatives, National Institutes of Health, and Centers for Disease Control and Prevention, and have informed Long COVID clinical guidelines and legislation. For more on PLRC, visit patientledresearch.com.