Despite HIV successes, we must still fight its strong stigma

Recently, when I diagnosed a patient with an advanced melanoma, he confided in me that his parents did not know he is HIV positive. The burden of this man’s cancer diagnosis was forcing him to ask his parents for help. He pondered aloud, “Maybe I should just tell them about both at once. With the cancer, maybe the HIV won’t seem so bad?” 

We are at a crossroads in the fight to end the HIV epidemic — President Biden recently requested $670 million from Congress with the goal of finally ending HIV/AIDS. Yet despite the progress made over decades against HIV, the incidence of sexually transmitted infections hit another all-time high during the coronavirus pandemic. As resources are diverted toward COVID-19, attention on HIV has waned. But the stigma surrounding HIV has not. A new study by researchers at Rutgers found that stigma continues to negatively influence HIV prevention, treatment and care.

I am a dermatologist who specializes in seeing patients with HIV. My patients are truly a cross-section of society: different ages, races, sexual orientations and gender identities. Almost all of them keep their HIV a secret in their lives, with only a few family and friends aware — and often they tell only their significant others.  

Traditionally, the three-pronged approach to control HIV has been to target three main gate-points: 

• Screening people to identify infection early;
• Getting people with HIV on medication, and those at risk on pre-exposure prophylaxis, a.k.a. PrEP; and
• Ensuring that people with infection are adequately treated to achieve an undetectable viral load, meaning that they are then unable to transmit the infection. 

But one factor this approach has not addressed is HIV stigma. Take a moment to consider: Would you be comfortable with knowing that your doctor was HIV positive, even with no detectable virus? Any hesitation speaks to the persistence of HIV stigma.

Though we live in a society that seems in many ways to be more progressive than in recent years, few people are willing to be public and out as HIV positive. In 2019, Jonathan Van Ness, star of TV’s “Queer Eye,” revealed he is living with HIV in the hope of reducing stigma around the condition. In 2015, Charlie Sheen came out as HIV positive, saying, “I release myself from this prison today,” after being extorted for $10 million to keep his HIV secret. That’s how powerful the stigma is.  

Further, popular culture has not reflected any growing acceptance of HIV positive people. If anything, as HIV has become a chronic manageable disease; people with HIV have become invisible to the general public. Most film and television shows that depict people with HIV are set in the 1980s and ’90s when HIV diagnoses were still death sentences for most. Now, despite 1.2 million people in the U.S., and worldwide 38 million infected, including 1.8 million children, it is hardly mentioned. One exception was the Netflix show, “Designated Survivor,” that in its last season featured a character with HIV and no detectable virus who was struggling to overcome stigma and tell his partner about his status.

We need more public campaigns to combat HIV stigma. For example, the “Thriving” campaign by the AIDS Healthcare Foundation has promoted the idea that HIV is no longer a death sentence by prominently featuring pictures of healthy people with HIV on billboards and advertisements. Still, this doesn’t address the deep-seated stigma that those with HIV are somehow responsible for their disease, that they are less deserving of sympathy than those with cancer. 

Even as we fight stigma, we must reach out to key populations placed at highest risk for HIV, namely gay and bisexual men — especially African American ones, and transgender people. As the Centers for Disease Control and Prevention (CDC) reported, half of African American gay and bisexual men are likely to acquire HIV in their lifetimes. The reasons for this disparate impact are multifaceted, including stigma, homophobia, transphobia and racism. African American gay and bisexual men and transgender people are especially placed at greater risk given socioeconomic factors and poverty, lack of access to health care, and higher prevalence among likely partners.

Even as we see the light at the end of the COVID-19 tunnel, we must recognize problems such as HIV and associated stigma that remain a challenge. We can celebrate the progress made over decades against HIV, and the COVID-19 vaccine push may open up new possible avenues for an HIV vaccine. But we cannot forget, as new research confirms, that HIV stigma remains strong and must be addressed directly and openly if we are to conquer this disease.

When my patient started treatment for his melanoma, I asked if, as he’d been considering, he told his parents about his HIV.  He laughed and said, “No.”

Jules Lipoff, M.D., is a senior fellow at the Leonard Davis Institute of Health Economics and an assistant professor of clinical dermatology at Perelman School of Medicine, both of the University of Pennsylvania.