San Francisco, San Mateo Co. Residents Urged to Share Long COVID Stories

Patient Responses May Influence Services and Funding; Help Experts Understand Causes, Treatment, Prevention

By Suzanne Leigh

Photo of Kim Rhoads in a face mask and face shield talking to a man at a vaccine clinic.
Kim Rhoads, MD, MPH (left) and Carina Marquez, MD, will co-lead community engagement for the Let’s Figure Out Long COVID – Tell Us Your Story, Bay Area study.

UC San Francisco, San Francisco Department of Public Health (SFDPH) and San Mateo County Health (SMC Health) are partnering with local community groups in a quest to learn about long COVID. To achieve this, researchers from the project, Let’s Figure Out Long COVID – Tell Us Your Story, Bay Area, will be calling local residents of all ethnicities and backgrounds who previously had COVID.

Long COVID, also known as post-acute sequelae of SARS-COv-2 (PASC), refers to both physical and mental health symptoms that last long after an initial infection. Those symptoms may start during infection and never go away or may appear weeks or months afterwards. Common complaints include fatigue, shortness of breath, pain, problems with concentration, depression and anxiety.

The goals of the project are to learn how common long COVID is in the community – information that is critical in impacting funding for local health departments and services for those debilitated by the condition – as well as to learn what causes it, and how to prevent and treat it.

In Phase I of the project, researchers will call San Francisco and San Mateo County adult residents who had COVID at least three months ago. Whether they have fully recovered or still have symptoms, their experiences will inform researchers about the frequency of long COVID. All ethnic groups and neighborhoods will be represented, and researchers are especially interested in hearing from Black/African American, Latino, Pacific Islander and Native American communities who have experienced higher rates of infections, hospitalizations and deaths than other groups.

In Phase II, some people who were previously interviewed will be asked to join a more detailed research study sponsored by the U.S. National Institutes of Health. This study, called RECOVER (Researching COVID to Enhance Recovery), will last three to four years. Study participants will be compensated for their time.

COVID Has Had ‘Devastating Impact’ on Marginalized Communities

“Aside from the devastating impact COVID has had on societally marginalized communities, we have no idea what the long-term consequences will be,” said Kim Rhoads, MD, MPH, from the UCSF Department of Epidemiology and Biostatistics, and the study’s community engagement co-lead.

“The project will help us get a better handle on how many people are affected by long COVID, and how we might intervene to reduce the additional burden the disease will likely place on communities of color,” added Rhoads, who is also the founder of Umoja Health Partners, which unites local organizations combatting COVID-19 in Black communities, as well as the director of the Office of Community Engagement at the UCSF Helen Diller Family Comprehensive Cancer Center.

Two doctors speak with volunteers at a COVID testing tent in the Mission District of San Francisco
“Ensuring representation and equity in the community is fundamental to this study,” says Carina Marquez, pictured here (center right) at a COVID testing event in San Francisco’s Mission District. Image by Susan Merrell

“We know that communities have concerns about the effects of long COVID, and we still have a lot to learn about this condition,” said Susan Philip, MD, San Francisco’s Health Officer. “This is why it is vital that we make progress in studying long COVID in communities of color that have been most impacted by COVID-19. We need to know how we can best treat it, to inform how we can provide a targeted public health approach toward supporting communities where it is needed most,” she said.

“The partnership with UCSF and SFDPH will enable us to enhance “our capacity to understand the long-term effects of COVID,” said Curtis Chan, MD, San Mateo County’s deputy health officer. “This will help us prevent and treat long COVID, and strengthen our county’s analysis of other health inequities in the future,” he said.

“Through our patient care and work in the community, we have seen firsthand the disproportionate impact COVID-19 has had on Latino and Black communities in the Bay Area,” said Carina Marquez, MD, of the UCSF Department of Medicine and the study’s community engagement co-lead. “Ensuring representation and equity in the community is fundamental to this study.”

Minority Populations ‘Need to Have Their Stories Heard’

Community organizations will assist in ensuring that input from the community accurately reflects those ethnic groups and neighborhoods where COVID-19 has been most prevalent.

“Black, Latinx and Pacific Islander communities in San Mateo County need to have their stories heard about the impact of long COVID. Many are suffering in silence,” said Lisa Tealer, executive director of the Bay Area Community Health Advisory Council, which is working with the San Francisco Latino Task Force and Bayview Hunters Point Community Advocates in its outreach efforts. Valerie Tulier-Laiwa, executive committee member of the San Francisco Latino Task Force, said she would welcome the results of the study, “so we can continue to improve health outcomes for communities of color heavily impacted by COVID-19.”

Learn More

For additional information, please see the Let’s Figure Out Long COVID website or email a representative: [email protected].

Let’s Figure Out Long COVID