The Long COVID Research Moonshot Act has been introduced! This landmark legislation addresses the urgent needs of millions of Americans suffering from Long Covid and other infection-associated chronic conditions (IACCs), including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
We want to say thank you to those in the Long Covid community who fought so hard not only to bring this bill to the table, but to ensure that those with ME/CFS and other IACCIs would not be left behind. We are more powerful when we advocate together and this bill introduction is a huge victory for the whole community. Making room for these illnesses to be studied alongside each other will allow huge research leaps and expedite progress.
The bill was originated by Senator Bernie Sanders (I-VT) and has five original cosponsors – Senator Tammy Duckworth (D-IL), Senator Tim Kaine (D-VA), Senator Ed Markey (D-MA), Senator Tina Smith (D-MN), and Senator Peter Welch (D-VT) – and has received endorsements from 45 organizations.
The Long COVID Research Moonshot Act is crucial for advancing biomedical research, enhancing public health surveillance, and promoting education for both the public and healthcare providers. The comprehensive approach of this bill will significantly aid in understanding and treating these debilitating conditions.
Support for ME/CFS and IACCs
The inclusion of ME/CFS and other IACCs in the bill is particularly significant. For decades, ME/CFS patients have faced a lack of research funding, limited treatment options, and widespread misunderstanding.
The bill requires that the National Institutes of Health (NIH) conduct comparative research to understand the similarities and differences between Long Covid and other chronic conditions with similar characteristics, including ME/CFS which is mentioned by name.
Key Provisions of the Bill
The Long COVID Research Moonshot Act allocates substantial resources, including:
- $1 billion/year for the next 10 years to NIH to establish and run a Long COVID Research Program, led by a Director with expertise in Long COVID and consulted by an Advisory Board that includes researchers with Long COVID research experience and people with lived experience. Clinical trials and the development of new interventions would be prioritized and expedited.
- $32 million/year for the next 10 years to CDC for surveillance on Long COVID and other IACCs.
- $45 million/year for the next 10 years to CDC for grants to state, local, and tribal health departments.
- $21.5 million/year for the next 5 years to CDC for a national public education campaign.
- $3 million/year for the next 10 years to HHS for provider education.
- $10 million/year for the next 5 years to the National Institute on Disability, Independent Living, and Rehabilitation Research for applied research on Long COVID and other IACCs.
- $9 million/year for the next 10 years to FDA to develop and validate clinical outcome assessments for Long COVID.
- $16.6 million/year for the next 10 years to FDA to continue a Long COVID electronic reporting form for patients to identify current treatments and treatments under development for Long COVID.
Read the bill text here and the press release from Senator Sanders here.
Solve M.E. wholeheartedly endorses the Long COVID Research Moonshot Act and urges swift passage of this critical legislation.
We stand ready to support its implementation and collaborate with all stakeholders to ensure that the needs of the ME/CFS community, and all individuals affected by IACCs, are met.
