Breanna Reeves |
The University of California Riverside’s Center for Healthy Communities (CHC) hosted the first town hall of many on the topic of long haul COVID-19 on August 30 at the Barbara and Art Culver Center of the Arts.
The first town hall in a series to focus on symptoms of long haul COVID, the presentation was moderated by Michelle C. Burroughs, director of CHC. The event featured presentations by Dr. Marshare Penny, Deputy Director of Public Health at Riverside University Health System – Public Health and Brittany Whitmore, Health Equity Program Coordinator at RUHS Riverside University Health System – Public Health.
“As you may know, a significant percentage of Black/African Americans are still unvaccinated. These town halls will offer practices that mitigate the spread of the virus and long haul COVID-19,” Burroughs stated.
Long haul COVID is a condition that refers to long-term physical and mental health effects that are present four or more weeks after initial COVID-19 infection. Long haul COVID has many names including long COVID, post-COVID and post-acute sequelae SARS-CoV-2 infection (PASC). People who experience long COVID can exhibit many different symptoms including fatigue, brain fog and chest pain.
Research on long COVID is still ongoing, which has made diagnosing the condition difficult for providers and even more difficult for individuals to receive recognition. While it is hard to say for sure, researchers and public health officials estimate that 27 million Americans suffer from long COVID.
“There’s not enough evidence to tell us how long a person could experience long COVID. Additionally, every individual is different,” Dr. Penny responded to a question posed by a community member. Some individuals report experiencing long COVID for two months after they recovered from the initial infection while others can experience long COVID for a longer period of time.
During her presentation, Dr. Penny stated that among the estimated 213,000 who suffer from long COVID in Riverside County, 8,000 identify as Black.
Black Long Haulers feel unheard
Kevin Booker explained that he initially contracted COVID-19 and then experienced COVID-related pneumonia one month later, which lasted about four months. Booker explained to Dr. Penny that he has been unsuccessful in getting his doctor to understand his symptoms and address his health concerns.
“It feels like when I come in the room, most of the time he talks and if I interrupt, he kind of talks over me. That’s what I’m experiencing now. What direction do I go when I’m experiencing this right now? I just feel like I’m unheard,” Booker said as he recalled his visit with a worker’s compensation doctor.
Dr. Penny recommended that Booker get a second opinion and determine if a diagnosis was missed. She explained that there is now a diagnostic code for providers to clinically diagnose patients for long COVID.
Long COVID now recognized as a disability
In July 2021, long COVID was recognized as a disability under the Americans with Disabilities Act. The Department of Health and Human Services issued a guidance that details why long COVID meets the criteria of a disability.
Booker shared a row along with his wife, Denise Booker, who explained that they both contracted the delta variant and had fevers of 103 in 2021. She said she still experiences the effects of COVID such as being very forgetful and having poor equilibrium.
“It’s frustrating listening to him when he has to talk to the doctors. I went to the doctor afterwards, because my equilibrium was also off. And they told me as well, ‘It’ll pass. Don’t worry about it. It’ll pass,’” Booker said. “It hasn’t passed. We had it in ‘21. Okay, so what do we do at this point?”
The Bookers are not alone in feeling unheard or dismissed when it comes to having a provider recognize and acknowledge their symptoms as long COVID. Black female long COVID activists like Chimére L. Smith from Maryland and Yvonka Hall of Ohio are fighting for recognition of long COVID among Black communities.
On August 24, 2021, the American Academy of Physical Medicine and Rehabilitation (AAPM&R) released the first dashboard that displays how many millions of Americans are estimated to be experiencing long COVID symptoms.
AAPM&R estimates are developed based on the assumption that 30% of the population who survived an initial case of COVID-19 suffers from long COVID. They estimate that more than 27 million Americans suffer from long COVID. California has the highest estimate of long COVID cases among the states with an estimate of three million.
Being your own best advocate for long COVID care
Community members who attended the town haul had questions about how they can advocate on behalf of themselves when it comes to having providers acknowledge long COVID.
“There are not a lot of long COVID providers. That’s the unfortunate reality today. But we are getting better,” Dr. Penny acknowledged. However, she encouraged members of the audience to seek a second opinion from other providers, ask questions and keep documentation about visits and testing.
During the presentation Dr. Penny and Whitmore also addressed misinformation about COVID-19 boosters and vaccines that audience members may have received. Both public health officials emphasized the importance of getting a booster shot, regardless if an individual has contracted COVID-19 or not. Whitmore recommended that people continue to wear masks and practice good hygiene to reduce the likelihood of contracting COVID-19 and therefore contracting long COVID.
As more information is learned about long COVID, Riverside County has worked to understand who is impacted by conducting post-COVID follow up calls to individuals who reported positive COVID-19 test results. There is currently no medication that specifically treats long COVID, but those who are experiencing long COVID can find support and resources by visiting the county’s resource page.