The Long COVID Justice project at Strategies for High Impact (fiscal agent: Allied Media Projects)

Most people who get COVID-19 recover within a few weeks; however, some people—even those who had mild versions of the disease—experience symptoms that last longer.

When symptoms and conditions continue or develop four weeks or more after initial infection, health experts consider it Long COVID, which can last for months or years and disrupt people’s daily functioning. Communities that face health inequities, including patients of color, are the most affected by Long COVID; however, their experiences have been largely excluded from the discourse. To meet these challenges, the New York State Department of Health, the New York City Department of Health and Mental Hygiene, and public and private hospital systems have deployed resources, established clinical centers of excellence, and organized groups to advocate for large scale solutions. With the end of the federal public health emergency and pandemic-era funding, resources that were supporting these emerging systems have dried up. It is necessary to preserve access to Long COVID care and services, identify scalable and sustainable models, and ensure that patients are engaged in decision-making and developing care plans. In 2023, NYHealth awarded Long COVID Justice (LCJ) a grant to connect Long COVID patients in New York City to care, train primary care providers, and engage patients and communities to identify treatment needs and preferences. 

Under this grant, LCJ will conduct a needs assessment of people with Long COVID, with a focus on those disproportionately affected and whose voices have largely been left out, including individuals living with chronic illnesses such as HIV/AIDS, youth living with chronic illnesses, and gender non-conforming people. LCJ will conduct a participatory needs assessment by partnering with Long COVID advocacy groups, grassroots organizations, clinics, and providers to conduct outreach to individuals living with Long COVID. It will conduct interviews, listening sessions, and a survey to learn more about patients’ experience with Long COVID and their health care and social service needs. LCJ will disseminate its findings, educational materials, and actionable policy recommendations, as well as leverage existing relationships with community providers, large health systems, and policymakers, to share these materials broadly.  

NYHealth is also supporting a complementary initiative with a grant to NYC Health + Hospitals.