The COVID-19 Longhauler Advocacy Project (C19LAP) was founded in June of 2020 and has since become a 501(c)(3) nonprofit organization. C19LAP is an all volunteer organization which is patient and/ or caretaker led. Our mission is to advance the understanding of Long COVID and its associated conditions (LCAC) and expedite solutions and assistance to Longhaulers and their families through advocacy, education, research and support.
C19LAP hosts a total of 60 chapters and advocacy teams for each U.S. state and several focused populations groups (all of which can be found here). Through community outreach, C19LAP is able to synthesize information and generate educational resources to bridge knowledge gaps between the patient/caregiver community and healthcare providers, researchers, and government agencies. C19LAP has made a significant impact in the Long COVID community and beyond in our short time of existence, and much of that success derives from patient-driven and patient-centered approaches.
C19LAP partnered with Congresswoman Pressley to co-draft the Treat Long COVID Act, and with Congresswoman Bush for a $60M appropriations request. We published a letter to national leadership in January 2022 with data from the first ever investigation into how Long COVID impacts the economy and the labor force, now cited in JAMA, which resulted in the beginning of action from the Biden Administration and HHS to investigate the Long-Term Effects o COVID-19 (Long COVID). We also submitted a letter for the record to the Select Committee on the Coronavirus Crisis and have made numerous recommendations for other pieces of Long COVID legislation as well as to the Department of Labor. We have met with the White House COVID response task force, various divisions within HHS, NIH, CDC and various researchers and continue to collaborate and maintain bi-directional communication with several of these entities. We have also created various resources for the community such as the Comprehensive Guide for Longhaulers and Providers, the COVID Competent Providers List, and the largest list to date of Post COVID Care Centers as well as a Roadmap to Successful Outcomes in Long COVID (see our work).
C19LAP is a co-founder of the Long COVID Alliance, and proud member of the Disability Economic Justice Collaborative and National Network for Long COVID Justice. Several C19LAP advocates serve on committees within the NIH’s RECOVER Initiative as well as on advisory boards for external Long COVID efforts. C19LAP has appeared in several media pieces, including but not limited to, NBC, ABC, PBS, NPR, CNN, NYT, WSJ, USA Today, Business Insider, The Guardian, Politico and has contributed to the Long COVID Survival Guide. Our work has been cited in Long COVID HHS reports, JAMA and the American College of Health.
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