Stigma, not science, is the biggest barrier to ending the HIV epidemic

“I am really sorry to reach out like this, David, but I’m worried about my brother. I think he has AIDS.”

I froze when I heard those words a few weeks ago. One reason was because Cheryl was 11 years old the last time I heard her voice; she’s 40 now. The other was because I know from my training as a physician in New York City in the 1990s that, while HIV has become a manageable disease for some people, many others still die from complications of AIDS.

When Damon and I met in a New York City club in 1989, it was love at first sight. Our break up four years later devastated me, and its aftermath lingered. We did, though, manage to keep in touch over the years.

Cheryl’s call worried me. She told me she had learned from Damon’s apartment manager that he was failing; feces and food were scattered on the floor of his apartment. He was oversleeping for his shifts at work. His appetite had dwindled, and he had lost 70 pounds. Paramedics took him to the closest hospital’s emergency department, where he was admitted for pneumonia and dehydration.

Related: Losing Faith: Reflecting on 40 years of the HIV pandemic

I rearranged some work and personal duties and drove ten hours to the hospital. I got my visitor’s wristband from the front desk and walked through the stale corridors. Damon wasn’t in his room when I arrived; a nurse told me he was getting a bone scan, something about ruling out metastatic cancer.

I wondered if he told them that to avoid facing the reality that he was living with AIDS, the way people used to use the words “meningitis” or “pneumonia” when the weight of that four-letter acronym was too heavy.

When Damon was wheeled into the room, I saw in an instant why Cheryl called me: He looked gaunt, his temples were sunken, like moon craters; his hair, once a rich tapestry of coarse curls, looked thin and wispy; and his smooth chocolate skin was now patchy and ashen.

I looked away, not wanting Damon to see how jarring his appearance was to me, how it mirrored the faces of countless patients I have treated over the years who were dying from AIDS.

That all changed in 1996 when the first “triple drug cocktail” became widely available. Within a matter of months, hospital inpatient wards that had once been bursting at the seams with AIDS patients became barren as the health of people living with HIV started to improve.

In the 25 years since, scientific advancement has made dozens of HIV medications available, and there are now numerous oral single-tablet regimens to help people living with HIV enjoy healthy and thriving lives. The FDA approved a once-a-month injectable combination HIV treatment in January 2021, and longer-acting treatment options and delivery systems will emerge in coming years. The prospect of effective HIV vaccines has garnered renewed interest in recent years. We are scientifically poised to make “End the HIV Epidemic” not only a rallying call, but a reality.

Yet many people living with HIV are not benefitting from these advancements. Almost 16,000 people with HIV in the United States died in 2019; globally, an estimated 680,000 people died from AIDS-related illnesses in 2020. Individuals diagnosed with HIV who cannot access medical treatment can become victims of the same opportunistic infections that preyed on people in the 1980s and 1990s before safe and effective treatments existed. Conditions such as cryptosporidium diarrhea, cryptococcal meningitis, Kaposi’s sarcoma, and progressive multifocal leukoencephalopathy still cause grueling and protracted deaths for many with HIV.

In other words, the more things change, the more they stay the same.

Given that it’s now possible to live with HIV for a long time, how is it that HIV isn’t recognized earlier and treatment begun?

While there are certain social, structural, and medical factors at play here, one factor — stigma — plays a huge role. Discrimination and deliberate isolation of individuals living with HIV in our communities, our policies, and our health care spaces cause many to avoid testing altogether, or keep them from accessing medical treatment. Even the anticipation of HIV stigma can influence individuals’ mental health and how they navigate in this world, leading to adverse health outcomes.

My conversation with Damon that day in the hospital was difficult. He wanted to reminisce about the past. He asked he about my mom three times, each time forgetting I had already given him an elaborate answer. He fidgeted with his blanket often, picking at things I couldn’t see but were obviously bothering him.

Cheryl had told me he spent years not wanting to talk to the family about his health, even as he physically deteriorated in front of their eyes. I imagine he was scared of the judgment he would experience by the people whom he loved and who loved him the most — he chose to deny the reality of what was happening to him rather than face the crippling stigma from his family, even if that left him teetering on the precipice of death.

I learned a few days later that a brain scan showed that Damon had severe cortical atrophy — loss of brain cells and the connections between them — a sign of HIV-related dementia, another way this virus disables and kills its victims. He was started on antiretroviral treatment in the hospital, but whether he regains some of the cognitive function he has already lost is yet to be determined. After he is stabilized, he will likely go to a rehab facility to continue his recovery.

I’m not at all certain what the future holds for Damon, but I am sure of one thing: HIV is still decimating people’s lives despite our scientific advancements, and stigma is still playing a major role.

David Malebranche is an Atlanta-based internal medicine physician specializing in sexual health and the prevention and treatment of HIV and other sexually transmitted infections. A different version of this article was published on Medium.