When visitors walk into the AIDS Outreach Center, a nondescript building on Beach Street in Fort Worth, they invariably meet Ivan Rubell, the center’s soft-spoken greeter who’s been living with HIV since 1989.
His desk and the newspaper racks nearby brim with condoms, hand sanitizer and masks — items that serve both as gifts for passersby and reminders of the two viruses that have helped shape his world.
Rubell’s goal, after decades of navigating his own positive status, is to provide newly diagnosed people with hope. He’s seen how far the world has come in terms of treatment and acceptance and resources. He’s seen, too, the similarities between the early years of the HIV epidemic and those of the COVID-19 pandemic — especially when it comes to stigma and misinformation.
In the 40-year span that separates the two outbreaks, much has changed for the better, said Marc Fleming, an HIV researcher and former associate professor at The University of North Texas Health Science Center in Fort Worth. But “there’s just so much work that still has to be done,” he said, especially when it comes to serving communities who are disproportionately affected by COVID-19.
Fort Worth Report’s Black History Month event
To explore more about how far we’ve come in the last 40 years when it comes to health disparities and other topics, Fort Worth Report is hosting a panel of experts on Feb. 24 at Texas Wesleyan University to discuss “Where We Are Today vs. Where We Were.” Tickets are sold out, but a recording of the Black History Month event will be available at fortworthreport.org.
Both outbreaks began with fear — and that fear led to othering, Fleming said.
In June 1981, a report from the Centers for Disease Control and Prevention reported the unusual occurrence of pneumocystis pneumonia, a lung infection previously limited to people with severe immunosuppression, in five formerly healthy young men in Los Angeles. By the time of the report, two of the five had already died. The other three would shortly follow.
The report described all five as “active homosexuals.” Within a month, the term “gay cancer” began to circulate.
Nearly 40 years later, the virus that causes COVID-19 didn’t discriminate. But specific communities — especially people with underlying health conditions, many of which disproportionately affect racial minorities — were more likely to experience death or severe disease.
Blaming people for their own illness became easy to do, Fleming said, just like with HIV.
“We wanted to know who was dying,” Fleming said. “But in doing that, it sent a message that, well, if I’m healthy, if I eat right, if I don’t have those conditions, then it’s an immune system issue — it’s not an ‘us’ issue.”
When Rubell was diagnosed, he was in his early 20s and incarcerated in Lovelady. Back then, even eight years into the HIV epidemic, stereotypes about the virus as a disease for gay men continued to run rampant, he said. He thinks he caught the virus as a teenaged sex worker in Fort Worth, or through drug use.
In prison, Rubell kept his diagnosis “under the radar.” Sharing his experience of the diagnosis — denial, at first, and then depression — would have made an already difficult space even harder.
“You would be attacked, mocked. You would be stepped on,” he said. “It just wasn’t a good environment for that.” People without HIV thought people with HIV were “yucky, nasty, contagious.” He said he’s seen a similar aversion to people who have COVID-19.
Rubell remembers being offered AZT, the first HIV treatment the U.S. Food and Drug Administration approved in 1987, six years after the CDC released its June report about pneumonia in five young men. He refused it — from what he’d seen, the people who took AZT only grew sicker. AZT broadcast “who’s who,” Rubell said; it revealed who was sick and who wasn’t.
When Dr. Crystal Howell, an infectious diseases pharmacist and assistant professor at The University of North Texas Health Science Center’s College of Pharmacy, thinks about metrics that help determine progress in handling a virus, she thinks about time: “time to development of new drugs, time to development of vaccinations, time to development of cure.”
In the early years of the HIV epidemic, time stretched on with piecemeal movement from people in power. The U.S. Congress wouldn’t allocate funding for AIDS research and treatment until 1983, two years after that first CDC report. By that point, the cause of the disease was still unknown.
Within the same time period 40 years later, the FDA has approved or authorized for emergency use multiple vaccines and treatments for COVID-19. Anyone, anywhere in the U.S. age 5 and up can receive a vaccine for free. When they’re available, anyone, anywhere in the U.S. age 12 and up can receive monoclonal antibody treatment for free. And, as of January, all households in the U.S. can receive four at-home COVID-19 tests for free.
The government’s response has been “tremendous,” Fleming said, “and it hasn’t gotten enough credit.” Still, he said, not everyone has received the benefits of those advances in technology and virology.
For example, a 2022 study of hundreds of thousands of COVID-19 patients found lower user of monoclonal antibody treatment, an outpatient therapy, among non-white and Hispanic patients than their white and non-Hispanic peers. The disparities shrank when it came to inpatient treatment; the study suggested those differences could come from ease of access once a person is hospitalized.
The study, which ran in the CDC’s Morbidity and Mortality Weekly Report, is limited in part because researchers gleaned monoclonal antibody treatments solely from electronic medical records, and infusion sites not associated with a specific hospital may not record them.
The CDC lists knowledge and wealth gaps; lack of insurance, transportation or child care; language barriers and mistrust of the medical system as factors that may contribute to “more COVID-19 cases, hospitalizations and deaths in areas where racial and ethnic minority groups live, learn, work, play, and worship.”
The solution, Fleming thinks, is two-fold: addressing barriers to access and increasing the number of providers and health educators who look like the communities they’re serving.
In 2012, Will Mitchell went to the hospital for a panic attack and left with a positive HIV diagnosis. He had no symptoms and no insurance.
He remembers his providers telling him they’d need to report his case to Tarrant County Public Health. A chaplain came in and asked him if he understood what he’d heard. “I heard you loud and clear,” he remembers thinking. He left the hospital and wept.
At first, Mitchell didn’t tell anyone what he’d learned, and remained in denial until he took three more tests through the county health department — all positive. He finally sought counseling and support through the AIDS Outreach Center in Fort Worth.
“And so I decided that, OK, after my depression and anger and all that sadness, I didn’t want anyone to go through that experience,” he said. “I said, ‘I need to do something different.’ And I became the face of HIV.”
The outreach center was piloting a peer advocacy program, and they asked him to be the program’s first peer advocate. He works to connect newly diagnosed people with resources and re-engage people who’ve been positive for a long time.
When people first learn they’re diagnosed, he doesn’t speak — he just listens to what they’re feeling.
“Some people are angry, some people want to scream, some people want to cry,” he said. He lets them know he’s there for them. He tells them they’re going to be OK.
While the rate of new HIV cases in Texas has been slowly declining, cases in Tarrant County have fluctuated. In 2019, the number of new cases had increased 13% from the number in 2010. In that same time period, the number of new cases among Black people in Tarrant County increased 42%.
Most of the new cases occur in people who are younger than 35.
The spike comes, Mitchell thinks, from a sense of invincibility among young people — as well as a lack of knowledge about how to protect themselves from HIV. In his role at the outreach center, he meets people where they’re at — in their own communities — and tries to become a familiar and friendly face. “You can’t wait for anyone to come to you,” he said.
When they finally do step through the doors of the outreach center, Rubell will be ready for them.
He’s 56 now — and has lived with his diagnosis for more than 30 years. He knows how far society has progressed: from offering no options to, these days, preventive treatments like PrEP and therapies that allow people with HIV to become wholly undetectable. Furthermore, people are more willing to talk about HIV now, he said. It’s no longer the pariah it once was.
He’s also weathered the COVID-19 pandemic well; he’s vaccinated, boosted and managed to avoid the disease so far.
Still, it’s easy, he said, in the face of a virus, to shut off from the world. He knows firsthand.
“I too was once there, but this is where I’m at today,” he said. “We give them hope all over again. In other words, we give them a new life.”
Similar progress has already been made in the COVID-19 pandemic, Howell said, and more will come — it just may take time.
“With HIV, we went from in the 80s, where people were dying of opportunistic infections, because their immune system was being obliterated by this unknown virus … and now we have drugs that are so effective, that people living with HIV live everyday, normal lives,” Howell said. “And they can live to their 80s and 90s just like everyone else. They are everyone else.”
“With HIV, we’ve had it for 40 years,” she added. “We’ve only had COVID for two.”
Participants needed for HIV study
Marc Fleming recently moved to California to teach at Chapman University School of Pharmacy, but continues to work on an HIV study with the Health Science Center in Fort Worth. The study is investigating how local pharmacists can improve health outcomes in Black people who have HIV and diabetes or high blood pressure. If you’re interested in participating, find out more information on the web at www.unthsc.edu/addup, via email at MTMstudy@unthsc.edu or by phone at 817-735-2252.
Alexis Allison is the health reporter at the Fort Worth Report. Her position is supported by a grant from Texas Health Resources. Contact her by email or via Twitter. At the Fort Worth Report, news decisions are made independently of our board members and financial supporters. Read more about our editorial independence policy here.