Community-led Solutions & Movement Building for Health Justice: Lessons from Long COVID Justice

Hosted October 2024

Long COVID Justice (LCJ) is a grassroots, collective effort confronting the Long COVID crisis, all the while centering racial, social, economic and disability justice. Their work is done by and for chronically ill and disabled people, families and communities. LCJ are passionate advocates, helping to link patient-led support groups, leading groundbreaking research and grassroots community organizing efforts, and building a policy analysis and advocacy plan for local, state, federal and international policies on the COVID-19 and Long COVID pandemic, and other associated conditions.

Most well-known for their “COVID-19 Weather Reports” and their “Urgency of Equity” report, the People’s CDC was formed in 2022 to develop accessible public health education materials amidst an evolving global pandemic. Today, the organization has evolved to build collective power to promote COVID-19 related health and safety issues, advocate for the expansion of a social safety net, and to support a robust public health infrastructure. People from all walks of life, including researchers, epidemiologists, healthcare workers, disabled people, and people living with long COVID make up the People’s CDC. 

• Disability justice examines the structural determinants of health to examine why some people do not have the support and access they need to thrive. The simple availability of healthcare does not mean it’s accessible or equitable.

• Disability justice, as a framework, focuses on community care, community-led solutions, and interdependence. It acknowledges that everyone has needs and deserves mutual support.

• Long COVID is a post-infectious chronic health condition, similar to polio syndrome (following polio), Myalgic encephalomyelitis/chronic fatigue syndrome (after an Epstein-Barr, or other type of, infection), and chronic Lyme disease (after Lyme disease).

• The COVID-19 pandemic was a moment to build our society to prioritize collective care and meaningfully challenge ableism. We saw glimmers of this, but the process of unwinding the public health emergency rolled back progress on resources and accommodations including Medicaid expansion, rent assistance, stimulus checks, work from home policies, and more. But we still have the opportunity to build towards this vision.
  

• Groups like LCJ and People’s CDC are trying to address the ongoing challenges COVID-19/Long COVID represent while building 1) a movement to improve access to quality healthcare, treatment and support for communities, and 2) the foundations for a broader public health response that centers those most affected by emerging risks and threats.
  
  
• Bans on wearing face masks, like the ones passed in Nassau County, New York and Ballston Spa, New York, threaten individuals’ rights to privacy and health, and make public spaces more inaccessible and unsafe for us all as respiratory illnesses spread unchecked. You can access LCJ’s resources on fighting masks bans, here.
  

• LCJ is partnering with organizations like NYCLU, ACT Up NY, Jews for Mask Rights, and Mask Bloc NYC to prevent and condemn potential face mask bans across the country.

• LCJ is conducting a needs assessment and action plan to hear directly from people living with Long COVID and associated conditions about their current social and medical needs. They are particularly focused on trans people and people living with HIV, who are disproportionately affected by Long COVID, and youth, who are mostly left out of conversations about the condition.

• People’s CDC has partnered with National Nurses United and others to advocate for continued protections for healthcare workers caring for COVID-19 positive patients in the hospital, and were successful in preventing a rollback of protections that the CDC’s HICPAC Committee considered earlier in 2024.

• LCJ is collaborating with The Sick Times, a journalist-led online publication dedicated to covering Long COVID, to create concise, medical provider reviewed, health education fact sheets in English and Spanish on the condition, its symptoms, tips for care navigation and self-care, as well as how to talk about Long COVID with family, friends, employers and clinicians. 

Do the panelists have any advice for finding a COVID-conscious/chronic illness friendly therapist?

The COVID-Conscious Therapist Directory is a resource to find mental health support in the United States, Canada, and beyond. You can also locate non-clinical and clinical support groups.

If you are a therapist, you can also add yourself to the directory.

 I would love to hear about some ways to get involved in this work as a disabled person, especially outside of care within my own community.

 Long COVID Justice is dedicated to building the power of disabled and chronically-ill people, so join us! You can sign-up for LCJ’s mailing list to get regular updates and resources, as well as information on upcoming volunteer opportunities or events.

If you are looking for more local advocacy, organizing, or support – both online or otherwise – you can search the many directories, discords, online groups, and affinity groups listed on LCJ’s website.

Do you have a template for those of us trying to get masks reinstated in hospitals?

With editing support from LCJ and others, the COVID Advocacy Initiative and COVID Safe Campus created an “Organizing Toolkit to Keep Masks in Healthcare” toolkit that provides ideas for taking action and calling for masks requirements to continue in hospitals and other healthcare settings. There is a list of recommendations plus ideas for actions and tactics.