Breanna Reeves |
“One of the most important questions your doctor should ask you is ‘tell me your story,’” Dr. NanaEfua Afoh-Manin said as she addressed the audience.
A little more than a dozen people sat listening to Dr. Afoh-Manin’s presentation in the fellowship hall at Ecclesia Christian Fellowship in San Bernardino, CA, on Nov. 30. This town hall marked the fourth and final event in a series focused on Long Haul COVID in Black communities hosted by the Center for Healthy Communities (CHC) at the University of California, Riverside.
Dr. Afoh-Manin is an emergency medicine physician, and Chief Medical Officer and founder of Shared Harvest Foundation/myCovidMD™, a community-centered non-profit organization that focuses on health equity.
Post-acute sequelae of SARS CoV-2 infection (PASC), commonly referred to as long haul COVID, long COVID or post-COVID, is defined as having new, returning or ongoing symptoms and health issues in the weeks or months after a COVID-19 illness. Symptoms can include difficulty breathing, chronic pain, brain fog, fatigue and much more.
Part of Dr. Afoh-Manin’s presentation included showing clips of a short Washington Post documentary that told the story of Cynthia Adining, a 35-year-old Black woman who experienced long COVID symptoms early on in the pandemic, but was dismissed several times by the hospital.
Many long haulers have experienced similar treatment and have taken it upon themselves to create supportive Facebook groups to discuss their symptoms and experiences. Black women experiencing long COVID have reported feeling discriminated against by health care systems and reported how often they are accused of being “drug seekers,” labeled as aggressive or ignored altogether.
A state-wide report called “Listening to Black Californians: How the Health Care System Undermines Their Pursuit of Good Health” found that roughly one in three Black Californians has been treated unfairly by a health care provider because of their ethnicity/race. The survey was designed by EVITARUS, a Black-owned public opinion research firm in Los Angeles with the support of the California Health Care Foundation (CHCF).
The report further noted, “More than one in four Black Californians avoids care due to concerns that they will be treated unfairly or with disrespect. Even higher numbers of Black Californians who identify as LGBTQIA+ (41%) and those enrolled in Medi-Cal (35%) report having avoided care.”
They don’t know what to tell me.
Major Kimberly Anthony, a retired registered nurse and former military nurse, attended the town hall to learn more information about long haul COVID as someone who has been experiencing post-COVID symptoms for two years. Anthony said she has little-to-no sense of taste and has trouble remembering things.
When she initially contracted COVID-19, Anthony’s doctor told her she had mild COVID-19 because she didn’t have any respiratory problems, just fatigue and no sense of taste. Anthony assumed her sense of taste would return a few weeks later, but after six months, it never did. When she went back to the doctor to ask if she’d ever regain her sense of taste, the doctor told her: “Give it time.”
“Two years later, my taste and smell are very little. I have adapted to it. I have learned to accept it. The doctors don’t have a clue. They don’t know what to tell me,” Anthony stated.
Anthony said it was difficult to accept her symptoms, especially mentally. Over time, she has learned to live with her post-COVID symptoms and has adopted habits to help her. Anthony still experiences brain fog, so she has made it a habit to write things down.
Anthony isn’t relying on her doctors when it comes to seeking help or support for her symptoms.
“What are they gonna tell me? They’ll just tell me the same thing. They don’t have it. They don’t understand. I have gone to a lot of town halls, a lot of different events,” Anthony said. The CHC has been hosting Long Haul COVID Town Halls across Riverside and San Bernardino Counties since October. Each event features public health officials who answer questions and give presentations to educate the community on COVID-19, vaccines, long haul COVID, symptoms and how to advocate for oneself.
“That’s what we’re here to do, right? Ask questions,” said Burroughs. Attendees asked questions about getting updated vaccine boosters and whether it is safe to get vaccinated for both the flu and COVID-19 at the same time.
Dr. Shantell Nolen, COVID-19 Contact Tracing Epidemiology Program Coordinator for San Bernardino County Department of Public Health, answered the questions after giving her presentation on COVID-19 cases in the county.
Dr. Nolen assured people that it is safe to receive both an updated bivalent booster for COVID-19 and a flu shot at the same time. She also stressed the importance of staying up to date with boosters as immunity from previous vaccine doses begin to wane.
The U.S. Food and Drug Administration (FDA) authorized both Moderna and Pfizer bivalent vaccine boosters, at least two months after completing a primary series (two doses) or booster vaccination. Moderna’s bivalent booster is authorized for use in individuals six years of age and older. Pfizer bivalent booster is authorized for individuals who are five years of age and older.
In San Bernardino County, Black people account for about 8% of the population, but accounted for 10.7% of COVID-19 deaths since the emergence of the Omicron variant in December 2021. According to the California Department of Public Health (CDPH), 53% of the eligible Black population in San Bernardino County remain unvaccinated as of Nov. 29, 2022.
“People who are unvaccinated are certainly dying at a much faster rate than individuals who are fully vaccinated because they don’t have that sort of protection from the vaccine,” Dr. Nolen explained.
The importance of telling your story
As an Emergency Medicine specialist and community-centered physician, Dr. Afoh-Manin provided the town hall attendees with a cheat sheet for symptoms that require an emergency department (ED) visit versus symptoms that can be managed at home such as the difference between a fever of 104 degrees (ED visit recommended) and a fever of 103 degrees or less (Tylenol/Motrin and waiting 2 hours is recommended).
Dr. Afoh-Manin was candid about the limited amount of time doctors have with their patients to discuss all the symptoms attributed to long haul COVID-19, considering that there are over 200 symptoms associated with the condition and it presents differently in everyone. During the town hall she handed out a “Post-COVID Symptoms Log” that allows someone experiencing symptoms to track their journey.
“Telling your story is the most important thing. And the best way to tell it in a way that we are going to listen is to tell it to yourself,” Dr. Afoh-Manin said. She explained that it is important that patients are able to tell their stories in a succinct way so that doctors can understand.
“You won’t ever be able to control, especially in the emergency department, who will be there when you have to tell your story. But do know that you have the right, always, to ask for another provider if you feel you’re not being listened to. Don’t ever take that right away from yourself.”
The “Listening to Black Californians” survey asked respondents if they took measures to lessen the potential for a negative experience at an upcoming health care visit. The results found that two-thirds (66%) of Black Californians reported researching a health condition or concern before meeting with a doctor and more than one-third (35%) said they changed their speech and/or behavior to make a provider feel comfortable.
“I’ve worked with a lot of doctors, and they don’t listen unless you stop and make them listen. Some doctors do, but some doctors have really bad bedside manners,” Janet Robinson shared. As a former registered nurse, Robinson knows that doctors are always on the move and have limited time with patients.
As a member of Ecclesia Christian Fellowship and part of the church’s health ministry, Robinson helped organize the town hall. She explained that she learned a lot of information about the symptoms of long COVID, some of which she was unaware of.
“Even hearing from a doctor was really, really great because she has first-hand information on what she sees in the ER. I appreciate her giving that information about tell[ing] me your story,” Robinson said. “You really have to be your own advocate, to tell the doctors [and] to make them sit down and listen to you.”
In case of emergency
“We are cheering because we made it,” Dr. Afoh-Manin said. She congratulated the attendees for surviving the first holiday of the winter season amidst a winter surge of COVID-19 cases, increased cases of respiratory syncytial virus (RSV) and a rise in flu cases.
Last month, Riverside County Public Health Office Geoffrey Leung reported the county’s first pediatric death related to RSV. The child was under the age of four and lived in the eastern region of Riverside County.
“The loss of a child is devastating and all of Public Health sends its heartfelt condolences to the family, loved ones and anyone impacted by this tragic event,” said Dr. Leung in a statement.
With the increase in COVID-19 cases, RSV cases among children and flu season returning, “there’s a lot going on that your body is still trying to reconcile, you have to be patient with it. And unfortunately, we don’t live in an environment that allows us to be always patient with ourselves and each other,” Dr. Afoh-Manin explained.
San Bernardino County issued a health advisory in November regarding the high rates of RSV and other respiratory illnesses in the county. County Health Officer Dr. Michael Sequeira encouraged the public to take safety measures to protect themselves and their families.
“I know in our communities we’re like, ‘no, I’m fine,’” Dr. Nolen said during the town hall, but she explained that in the case of an emergency, it’s important that those who may be experiencing serious illness or side effects go to the doctor.