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The COVID-19 Longhauler Advocacy Project (C19LAP) is a grassroots, all volunteer and patient led, 501(c)(3) nonprofit organization. Our mission is to advance the understanding of Long COVID (LC) and its associated conditions (LCAC) and expedite solutions and assistance for Long-Haulers and their families, through advocacy, education, research, and support. 

 

C19LAP began in June of 2020 as a single facebook group, gathering feedback from those affected by “mysterious and prolonged symptoms'' after a COVID-19 infection and amplifying our findings and the community's messaging. Through community engagement, we work to simultaneously provide our community with education, support, and resources while analyzing the gaps and utilizing gathered information to advocate on behalf of our community, which currently consists of over fifty million people with long COVID in the U.S. Whether it be for research and treatments, for support services, for policy implementation and more, we facilitate bi-directional communication between the Long COVID community and appropriate stakeholders and decision makers. C19LAP has grown to over sixty chapters covering each U.S. state and territory, and several community chapters, such as  pediatrics, caretakers, BIPOC, LGBTQIA+, Labor Force and more. Between our social media channel membership and email list, we are able to reach approximately 15,000 people. 

 

C19LAP is also a co-founder of the Long COVID Alliance and serves on its executive committee. C19LAP is also a partner with our founder serving as Chair in a CDCF funded project aimed at forming an Infection-Associated Chronic Conditions Patient Advocacy Coalition with the Long COVID Alliance. We had the privilege of working alongside Congresswoman Pressley to co-draft the Treat Long COVID Act, and while it has not yet passed, it is the Long COVID bill with the most support at this time. C19LAP is also a member of the Disability Economic Justice Collaborative, and we take pride in our work in the disability space, as more than half of those with Long COVID now identify as disabled. Our coalition work highlights our desire for collaborative cross-sector partnerships to advance solutions and assistance to those with Long COVID, Infection-Associated Chronic Conditions, and disabilities.

 

Two of our major focuses are education and awareness of Long COVID. We believe that this will help promote and emphasize the need for significant investment into research and our healthcare systems, which will in turn, improve patient outcomes. Many within the Long COVID community are impacted by Social Determinants of Health (SDOH), and we have been leaders in urging and outlining whole-person, patient-centered care. We also believe that more public awareness and education about Long COVID will simultaneously educate clinicians who are not currently getting any information on Long COVID, and help increase infection mitigation efforts, allowing people to make informed decisions about their health and futures.

 

C19LAP has created several resources for the community that have provided many with help and guidance they have been unable to locate elsewhere. C19LAP was the first to report on the economic impacts and levels of disability present in Long COVID, later highlighted and replicated by Harvard economist, David Cutler. We created the first Guide to Long COVID (update coming soon), the largest list of Long COVID Care Centers, a “COVID-Competent” Providers List, a Roadmap” to Successful Outcomes which was also largely reflected in our recommendations to DOL through their online dialogue which received support from hundreds in the community. 

 

C19LAP was responsible for calling on President Biden to address Long COVID and create a Long COVID Task Force and Long COVID Assistance Programs. As a result, a presidential memorandum was issued, tasking HHS with investigating Long COVID. Three reports resulted from this, along with the formation of the Long COVID Office for Research and Practice, and the Long COVID Coordination Counsel. C19LAP was also instrumental, along with its partners within the Long COVID Alliance, in obtaining $1.5B for the NIH RECOVER Initiative. C19LAP has also developed the first-ever, comprehensive and patient-developed Long COVID Model of Care, listed within the AHRQ draft report on Long COVID. We recently launched billboard campaigns across nineteen states focused on Long COVID Awareness, but faced many refusals due to owners personal beliefs that Long COVID is political, a problem commonly faced when advocating in the community. 

 

Leadership within C19LAP are highly involved and invested in the Long COVID Space. Founder, Karyn Bishof, was a firefighter/ paramedic when infected in March 2020, and is now disabled from Long COVID and its associated conditions. Karyn serves on the National Academies of Sciences, Engineering, and Medicines committee tasked with developing the U.S. Government's definition of Long COVID, the NIH RECOVER Initiatives Ancillary Studies Oversight Committee, the Long COVID Research Fund as an advisory board member, and has been invited as a contributor to the AHRQ Long COVID Care Network. Director of Policy and Programs, Krista Coombs, now a former acupuncturist, works at the Vermont Center for Independent Living providing peer support to those with Long COVID as well as improving rural healthcare services. Krista also serves on several NIH RECOVER Initiative committees; the Mechanistic Pathways Taskforce, NCEG Publications Subcommittee, RECOVER-ENERGIZE clinical trial, and the Pregnancy Coordinating Cohort. Director of Education, Netia McCray, is involved with the Mt. Sinai/ PolyBio Center for Recovery from Complex Chronic Illness (CoRE), NIH RECOVER Neuro through Duke University, and Project Echo with clinicians in New Mexico and California. Netia is also the founder of a STEM nonprofit, Mbadika. Netia has been invited to serve on the New York City Department of Health’s Patient and Community Advisory Committee for a multi-year study on the long-term public health outcomes of COVID-19.

Please consider joining our community and supporting our efforts.

EIN: 88-1861776

Florida Not for Profit Organization

Contact@longhauler-advocacy.org

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