As part of our mission, we advocate for patient-led and patient-involved research as well as policies that enable patients, particularly the most marginalized, to access care and live with dignity. Our advocacy spans many areas – from advocating to ensure Long COVID research is methodologically sound and reflective of the patient experience to advocating for disability benefit reform.
Below we list our key previous and ongoing forms of advocacy, as well as related publications and documents. For questions or to collaborate, please email team@patientledresearch.com or Lisa McCorkell at lisa@patientledresearch.com.
Definitions, Outcomes, and Guidelines
- PLRC members were part of focus groups and presented at a workshop for the National Academies of Sciences, Engineering, and Medicine (NASEM) Committee on Examining the Working Definition for Long COVID.
- PLRC contributed to the World Health Organization (WHO) Post-COVID Conditions Clinical Case Definition
- PLRC and Body Politic have provided feedback on the US Centers for Disease Control and Prevention’s webpages on Long COVID
- PLRC and Body Politic have previously met monthly with the CDC’s Post-COVID Conditions Unit
- PLRC and Body Politic provided feedback on the UK’s National Institute for Health and Care Excellence Long COVID Guidelines
- PLRC is a member of the AAPM&R PASC Collaborative, providing input during meetings and on consensus guidance statements
Disability Policy
- In December 2023, PLRC coordinated a comment in response to the Census Bureau’s proposed changes to how they measure disability in the American Community Survey. The comment was signed by 26 organizations dedicated to disability economic justice.
- Member of the Disability Economic Justice Collaborative
- Co-Founder Lisa McCorkell co-authored a brief on how to improve SNAP and TANF in the context of Long COVID
- Co-Founder Lisa McCorkell and Body Politic board member Alison Sbrana were panelists at the the October 6, 2022 National Academy of Social Insurance webinar “Disability Policy Today and Tomorrow: Lessons from the Pandemic and Implications of Long COVID”
- Co-Founder Lisa McCorkell was a panelist at the October 24, 2022 The Century Foundation’s National Disability Employment Awareness Month event with Secretary of Commerce Raimondo
- In partnership with #MEAction, PLRC submitted a public comment as a response to the request for information on the Current Population Survey Disability Supplement 2024, highlighting the changes necessary to ensure the supplement is inclusive of chronically ill workers.
ICD Codes
- On June 10, 2022, with support from several ME organizations, PLRC submitted a proposal to the National Center for Health Statistics (NCHS) to add an ICD code for post-exertional malaise/post-exertional symptom exacerbation. Due to the proposal being lost in the NCHS email inbox, the proposal was not able to be considered for the September 2022 meeting, but was considered for the March 2023 meeting. The final proposal is located here, with a Q&A located here. This proposal was denied. It was presented again under a different code at the October 2023 meeting (Q&A here), and was again denied.
- In April 2021, PLRC submitted a comment regarding the proposed ICD-10-CM code U09.9, Post COVID-19 Condition, expressing support for the implementation of the code as well as recommendations for improvements. As of October 1, 2021, the U09.9 code is active.
Medical Care
- In partnership with #MEAction California chapter, PLRC has been advocating for the establishment of Centers of Excellence in California. Work on this is ongoing.
Medical Education
- PLRC regularly presents primers on Long COVID and associated conditions, with talks at Harvard, OHSU, and dozens of others
Patient Engagement
- In May 2024, PLRC submitted a comment to the US Office of Management and Budget in regards to public participation and community engagement with the federal government.
Prevalence
- PLRC advocated to add Long COVID prevalence questions to the US Census Bureau Household Pulse Survey. In May 2022, PLRC submitted a public comment expressing support of inclusion of questions and recommended improvements. The recommendations for the prevalence questions were adopted, and results from the survey are found on the NCHS Long COVID website. Recommendations to add questions on impact on work were not adopted.
Research
- In August 2024, PLRC submitted a response to the National Library of Medicine (NLM)’s request for input to maximize the effectiveness and efficiency of the Network of National Libraries of Medicine (NNLM).
- In May 2024, PLRC submitted suggestions and feedback on the National Institute of Allergy and Infectious Diseases (NIAID)’s Strategic Plan, aiming to incorporate Long COVID and other infection-associated chronic conditions in NIAID’s research priorities over the next five years.
- In December 2023, PLRC cofounder Lisa McCorkell presented about accessibility considerations for building new public access policies at a NASEM workshop.
- In June 2023, PLRC cofounder Lisa McCorkell presented at the NASEM workshop regarding developing a common research agenda in infection-associated chronic illnesses.
- In partnership with other members of the Long COVID Strategy Circle, PLRC developed a list of recommendations for the US National Research Action Plan, which includes recommendations for research priorities, design, and oversight. The final National Research Action Plan on Long COVID was published in August 2022.
RECOVER Initiative
- Several PLRC members serve as patient representatives for the US NIH RECOVER Initiative, bringing the patient experience to study design decisions.
- In November 2021, PLRC issued an open letter regarding RECOVER, calling for meaningful patient engagement and more inclusion of post-viral illness experts.
- PLRC’s work was cited in the announcement of the NIH RECOVER Initiative.
FDA
- On June 26th, 2023, PLRC released a public comment letter in response to the FDA’s “Patient-Focused Drug Development for Long COVID” event, outlining 13 key points to ensure when regulating clinical trials for Long COVID.
United States Congress and White House
- For FY25 appropriations, PLRC, Long COVID Campaign, and Long COVID Moonshot facilitated an appropriations letter led by Senators Markey, Kaine, and Duckworth to include $1 billion to NIH for Long COVID research, $200 million to ARPA-H for Long COVID research, and $20 million to HHS to fund the Office of Long COVID Research and Practice. Additionally, we facilitated an appropriations letter led by Senator Kaine to add “Long COVID” to the list of topic areas in the Congressionally Directed Research Medical Program. Full appropriations asks here.
- In May 2024, PLRC cofounder Lisa McCorkell submitted written testimony to the US House of Representatives Committee on Appropriations regarding the FY 2025 FDA budget request.
- In May 2024, PLRC cofounder Lisa McCorkell submitted written testimony to the US House of Representatives Committee on Appropriations regarding the FY 2025 Labor-HHS budget request.
- PLRC cofounder Lisa McCorkell’s Nature comment with Dr. Michael Peluso sparked a campaign to secure a moonshot for Long COVID, leading to the creation of the Long COVID Moonshot and a proposal by Senator Bernie Sanders. PLRC provided feedback on the proposal.
- In December 2023, PLRC coordinated the drafting of a letter to President Biden, asking him to prioritize Long COVID and other infection-associated chronic conditions in his FY25 budget.
- In March 2023, PLRC member Michael Sieverts submitted written testimony to the US House of Representatives Committee on Appropriations regarding the FY 2024 Health and Human Services Budget Request for Research on Long COVID and associated conditions.
- On July 19, 2022, PLRC Co-Founder Hannah Davis testified to the US House of Representatives Select Subcommittee on the Coronavirus Crisis
- On January 28, 2022, PLRC participated in a roundtable on Long COVID hosted by Representative Ayanna Pressley
- In June 2021, PLRC presented to the White House COVID-19 Health Equity Task Force. The final recommendations and implementation plan were released in October 2021.
- On April 28, 2021, PLRC Co-Founder Lisa McCorkell testified to the US House of Representatives Committee on Energy and Commerce, Subcommittee on Health
- PLRC supports the CARE for Long COVID Act and the TREAT Long COVID Act