A Summary of Community Insights to Address Long COVID

The COVID-19 pandemic has exacerbated historical and persistent disparities in health and highlighted the impact of systemic and structural racism among marginalized racial and ethnic communities. Its impact continues to widen the gap in equitable access to quality health care and other health inequities. 

And now our communities are faced with a new challenge: Long COVID. Long COVID is broadly defined as persistent symptomatic COVID-19 symptoms or new chronic health conditions that arise after having COVID-19. There is a lack of visibility of Long COVID as an emerging public health crisis and, while it is too soon to know the full extent of Long COVID’s impacts on racial and ethnic populations, it is predicted that Long COVID disparities will closely resemble those of the COVID-19 pandemic. 

To create equitable practices and policies in public health, communities whose needs are greatest should have a voice when developing solutions.
– Sheree Keitt, Program Director for the Vaccine Equity and Access Program (VEAP)

As part of Community Catalyst’s Community-first Public Health initiative, we leveraged trusted relationships with our Vaccine Equity and Access Program (VEAP) partners to understand the physical, mental and economic impacts of Long COVID on Black and Latinx communities. Focusing on communities disproportionately impacted by COVID-19 and health disparities, we asked community members to share their perspectives to develop strengths-based and community-driven recommendations. 

About the Report
Attendees sit in chairs in an auditorium at a round table at the Long COVID Town Hall in November 2023. At the front of the auditorium is a speaker from the Tennessee Justice Center.
Chanda Freeman, MSW, Health Policy and Advocacy Team Manager with Tennessee Justice Center, speaking at the Long COVID Community Listening Session in Nashville, TN.

This report is only the first step. Report findings demonstrate the need for future work to address systemic issues such as underrepresentation in Long COVID clinical trials and insufficient awareness and support services, while also providing the infrastructure, support, and space to develop and incorporate community-level strategies into larger Long COVID public health solutions.

With significant gaps in data and understanding on how COVID – and now Long COVID – are disproportionately impacting Black and Latinx communities, Community Catalyst embarked on a series of listening sessions to sit with communities and hear from them about their struggles and needs.
Our Approach

Our Approach

  • Convened a Long COVID advisory group of 25 diverse community-based organizations (CBOs). 
  • Partnered with six community-based organizations to host virtual and/or in-person listening sessions with community members.
  • Developed tools and resources to facilitate community-level discussions and collect impact data. 
Many of [the community members] explained that this was the first time that anybody asked them their opinion about how we can create interventions for their community.
– Chanda Freeman, MSW, Health Policy and Advocacy Team Manager, Tennessee Justice Center
Findings and Recommendations

Findings

  • Learnings from this project can aid in educating local, state, and federal partners and create a shared understanding of challenges and opportunities for deepened community engagement in racial and ethnic communities related to Long COVID.  
  • Communities want to be a part of developing recommendations and solutions. Communities expressed a need for opportunities to create spaces that allow them to engage in collaborative conversations with policy makers at the local, state, and national level.   
  • There is a need for continued education, resources and tools that provide education and information to combat stigma and fear related to COVID-19, vaccination and Long COVID. 

Recommendations

  • Develop and make easily available quality and relevant education and information about Long COVID. 
  • Develop tools and resources to help communities facilitate community-wide discussions about important issues impacting their communities. 
  • Sustain and expand partnerships with CBOs and communities to support their understanding of the policies and systems that impact their community.  
  • Provide flexible funding for communities to address social determinants of health factors exacerbated by COVID-19.  
Read the full report here
Our Community-Based Partners

Our Community-Based Partners

Thank you to the following community-based organizations for their support of this project, participation in our listening sessions, and for their contributions to our Long COVID Advisory Committee. 

Listening Sessions
  • Doulas Latinas International (Gresham, OR) 
  • Black Health (New York, NY) 
  • Patients R Waiting, Inc. (Lancaster, PA) 
  • Randolph County Caring Community, Inc. (Moberly, MO) 
  • Tennessee Justice Center (Nashville, TN) 
  • Trans(forming) (Atlanta, GA) 
Advisory Committee: 
  • Adams Compassionate Healthcare Network (Chantilly, VA) 
  • Arkansas Coalition of Marshallese (Springdale, AR) 
  • Asia Pacific Cultural Center (Tacoma, WA) 
  • Black Church and Domestic Violence Institute, Inc. (North Beach, MD) 
  • Black Ladies in Public Health (Arlington, TX) 
  • Christ Congregational Church Onward Women of Color (Silver Spring, MD) 
  • ICNA Relief USA Programs Inc (Tempe, AZ) 
  • Knock and Drop Iowa (Des Moines, IA) 
  • Korean Community Services of Metropolitan NY, Inc. (Bayside, NY) 
  • Make the Road Nevada (Las Vegas, NV) 
  • Melinated Moms (Trenton, NJ) 
  • New Horizon Ministries, Inc. (Jackson, MS) 
  • Northeast Ohio Black Health Coalition (Cleveland, OH) 
  • Palmetto Project, Inc. (North Charleston, SC) 
  • Rural Women’s Health Project (Gainesville, FL) 
  • SGA Youth and Family Services (Chicago, IL) 
  • South Carolina Association of Community Action Partnerships (Columbia, SC) 
  • The Roberti Community House (Waukegan, IL) 
  • Total Lifestyle Change (Fayetteville, GA) 

Community Catalyst’s partnership with these CBOs is one example of our organization’s larger commitment to unleashing the power of community-first public health. No matter who or what age you are or where you live, the “public” should be at the center of public health.  

Get Involved
Get Involved

Do you have a story to share about Long COVID? You can share it here. 

Resources

Attendees sit in chairs in an auditorium at a round table at the Long COVID Town Hall in November 2023. At the front of the auditorium is a speaker from the Tennessee Justice Center.

New Report on Long COVID Highlights the Power of Community Leadership in Restoring Trust in the Public Health System 

An attendee smiles while listening to a speaker in a packed conference room

The Power of Representation and Mobilizing a Community-First Approach to Vaccine Equity and Access 

  • COVID-19, 
  • Health Equity, 
  • Social Determinants of Health, 
  • Community-First Public Health

Hospitals and Health Systems Receiving Federal COVID-19 Relief Funds Must Be Accountable to Their Communities

  • Health Equity, 
  • Coverage & Care, 
  • Health & Economic Justice