Long COVID Justice
Our central project is Long COVID Justice (LCJ). LCJ is leading collective efforts to confront the Long COVID crisis, while centering racial, social, economic and disability justice. LCJ’s work is done by and for chronically ill and disabled people, our families and communities. We center BIPOC and LGBT communities, which often face disproportionate rates of both COVID-19, Long COVID, and disability, along with the multiple impacts of pandemics past, present, and future.
LCJ creates, collects and distributes accessible, accurate and timely information for people living with Long COVID and associated conditions (pwLCAC), conducts patient-led research and policy advocacy, manages direct service and leadership development programs, organizes for broad narrative change, and contributes to broader health and provider education efforts about Long COVID and associated conditions.
Program highlights
Long COVID Justice operates several programs and initiatives, including:
The BIPOC Long COVID Communicators Fellowship aims to interrupt the marginalization of BIPOC voices in the Long COVID conversation, and to support people living with Long COVID and Associated Conditions (LCAC) to tell their own stories, shift narratives, and participate in advocacy around the issues that impact their lives and communities.
The Direct Action Resource List includes many resources for designing and implementing direct action, with a special emphasis on resources that address accessibility needs and organizing in the time of COVID-19. The list includes resources for taking action from bed, in the streets, or wherever is most accessible.
The HIV Complexities Project is led by and for people living with HIV (PLHIV) and complex chronic conditions. The project has a broad reach, and includes: an online support group; health education webinars and resources in English and Spanish; support for national networks of PLHIV; and curricula for HIV peer navigators, providers and advocates, developed in partnership with Columbia University.
Listening for the Long Haul (LFLH) is an oral history project created by Long COVID Justice in partnership with History Moves at University of Illinois-Chicago. Together, we are training and supporting COVID-19 longhaulers to interview community members and narrate their own experiences. These interviews will be featured on the new LFLH website (launching Fall 2025).
Long COVID Essentials is a series of 30+ resource sheets that provide foundational information for navigating Long COVID and associated conditions (LCAC), created in partnership with The Sick Times. The series offers accessible information for patients, doctors, and caregivers, and is available in English and Spanish. All resources were reviewed by people living with LCAC as well as top medical experts in LCAC care.
The NYC Long COVID Needs Assessment and Action Plan (NAAP) is a major research and advocacy project designed in collaboration with grassroots community groups in New York City. The NAAP focuses on people with Long COVID from highly affected communities whose needs have largely been overlooked, including monolingual Spanish speakers, people living with HIV, trans and non-binary people, and children/youth.
Follow @LongCOVIDJustice on Instagram:
