Now in the fifth year of the pandemic, Long COVID continues to negatively impact the U.S. public and economy. A 2023 study found Long COVID patient functional limitations and quality of life to be lower than severe conditions like stroke and metastatic cancers, with only 40% being able to work full time at two years post-infection. In 2022, The Brookings Institution estimated Long COVID could account for upwards of 15% of unfilled jobs, and Harvard economist David Cutler estimated a total economic cost of $3.7 trillion in the first five years alone of the growing public health crisis. As of September 2024, the U.S. is still seeing over one million new COVID-19 cases per day, and 1,000 deaths per week, underscoring the urgent need for action in the interest of public health. The Long COVID Research Moonshot Act promises the much-needed resources we have advocated for years to provide assistance to the tens of millions in the U.S. impacted by Long COVID.

The Long COVID Research Moonshot Act would require the NIH to establish a new $10 billion research program, led by a director with Long COVID research expertise and in consultation with an empowered advisory board of Long COVID and infection-associated chronic condition (IACC) researchers and patients. Responding to patient community organizing ignited by a October 2023 Nature call to action from PLRC’s McCorkell and University of California-San Francisco clinician-researcher Dr. Michael Peluso, the bill includes not only substantive funding, but also a slate of new transparency, reporting, consultation, and grant expediting requirements.

Alongside prioritization of expedited clinical trials and development of new interventions, the Long COVID Research Moonshot Act provides an additional $1.4 billion in mandatory funding for robust provider and public education, surveillance, and clinical trial support efforts across the Food and Drug Administration, Centers for Disease Control, Health and Human Services and other U.S. government agencies to collaboratively address the growing public health crisis. The proposed legislation will also ensure Long COVID research coordination and findings benefit people living with Infection-Associated Chronic Conditions similar to Long COVID.

The bill would ensure targeted, robust investments in Long COVID research, education and awareness across U.S. government agencies, over the next 10 years:

• CDC: $32 million/year for the next 10 years for Long COVID and IACC surveillance; $45 million/year for the next 10 years for grants to state, local, and tribal health departments; $21.5 million/year for the next 5 years for a national public education campaign.

• FDA: $16.6 million/year for the next 10 years to continue electronic reporting for patients to identify current treatments and treatments under development for Long COVID; $9 million/year for the next 10 years to develop and validate clinical outcome assessments.

• HHS: $3 million/year for the next 10 years for provider education.

• AHRQ: $10 million/year for the next 10 years to continue the Long COVID Care Network; $10 million/year for the next 10 years to develop and distribute best clinical care practices

• National Institute on Disability, Independent Living, and Rehabilitation Research: $10 million/year for the next 5 years for applied research on Long COVID and other IACCs.

• IACCs: The Long COVID Research Program will ensure timely cross-agency coordination on IACC advances; conduct comparative research on Long COVID and other IACCs; grant awards will be prioritized for research that includes patients with IACCs with similar phenotypes to Long COVID; Organizations that represent IACCs with similar phenotypes to LC will be consulted on the Research Plan; CDC directed to collect data on the incidence, prevalence, and severity of IACCs.