- Jonathan Van Ness has a new memoir out this month that reveals he is HIV-positive.
- Experts say the announcement shows both how far we’ve come in combating stigma related to HIV and how far we have to go.
- Today, living with HIV is manageable and doesn’t inherently affect a person’s life expectancy.
“Queer Eye” star Jonathan Van Ness recently went public with a secret he’s been keeping for 7 years: He’s HIV-positive.
The show’s hair and grooming expert was 25 years old when he received the diagnosis — a story he divulged in his memoir, “Over the Top: A Raw Journey to Self-Love,” released on Tuesday. He’s since received an outpouring of support on social media from celebrities and fans, who praise him for reducing the misunderstandings surrounding the disease.
But, some infectious disease experts say that while the headline-making revelation puts an important spotlight on the disease, it also shows that there’s still a stigma against people with HIV — one that can impact access to care.
“It’s helpful for everyone with HIV to know that someone so prominent is, in some ways, just like them,” said Dr. Jonathan Jacobs, founder and executive director of the Center for Special Studies, the HIV clinic at NewYork-Presbyterian and Weill Cornell Medicine.
“But the fact that there’s still a big news story about someone having HIV means that we still have a ways to go. We as a society have not accepted HIV as just another illness.”
When HIV was discovered decades ago, it was considered a death sentence.
“Back in the late ’80s and early ’90s, we watched people get sick and die [because of] complicated treatment regimens with side effects that made them feel horrible,” said Dr. Robert Garofalo, head of adolescent and young adult medicine at the Ann & Robert H. Lurie Children’s Hospital of Chicago, who has researched HIV and AIDS.
“Now, the dosing schedules are relatively simple and the side effects are relatively benign for most.”
The Food and Drug Administration (FDA) has approved more than 40 medications for the treatment of HIV since 1987. Treatment typically involves three HIV medications, but a number of combination drugs allow patients to manage the disease with one daily pill.
“People with HIV were living to take their medications in the ’80s, as opposed to taking their medications to live — now, that’s reversed,” added Garofalo.
“I now tell HIV patients that they should plan on building their retirement accounts because there’s no reason their life expectancy can’t be as long as that of their peers.”
HIV is transmitted through certain bodily fluids, including blood, semen, vaginal fluids, and breast milk, that contain a high viral load, or amount of the virus.
However, when HIV medication is taken as prescribed, it can bring a person’s viral load to undetectable levels, making it effectively impossible to transmit the disease to sexual partners.
While greater understanding of HIV and advancements in treatment have significantly improved the prognosis for the estimated
“There’s a level of hatred and stigma around this illness that I don’t think our scientific advancements will fix,” said Dr. Latesha Elopre, assistant professor of infectious diseases at the University of Alabama at Birmingham and a researcher at the university’s Center For AIDS Research.
“HIV stigma doesn’t happen in a microcosm. It’s related to the fact that it’s a disease associated with people in the LGBTQ community and that has to change,” she added.
More than half of men and women in roughly 35 percent of countries with data on the subject report discriminatory attitudes against people with HIV. Discrimination can be profound in some parts of Africa, said Garofalo.
In the United States, some people still have a misunderstanding of HIV and a bias against those who have the disease, said Elopre.
“I still talk to people in the South, primarily black communities, who think HIV is an illness that can be transmitted through spit, touch, and sharing bath towels. They ask people with HIV to use separate utensils,” she said.
“I don’t think HIV knowledge has changed as much as we hoped from … 30 years ago.”
Community support — or lack thereof — can have a profound effect on the health outcomes of people with HIV.
Stigmas can prevent people from getting tested for HIV, accessing prevention tools (like condoms) and adhering to HIV treatment, according to a report from the Joint United Nations Programme on HIV/AIDS (UNAIDS).
This, in turn, could cause people to unknowingly transmit the disease to others and potentially develop AIDS and related complications.
“If there’s one thing that challenges our survival, it’s stigma,” said Garofalo, who was diagnosed as HIV-positive in 2010.
“The medicines are quite excellent at managing the disease. It’s the social influences that are most devastating when looking at access to care and being honest with ourselves.”
Infectious disease experts acknowledge that when it comes to increasing acceptance and understanding of HIV, there’s a lot more work to be done. Van Ness’s announcement was indeed brave — but only one step in the long-term goal of eliminating the stigma against people with HIV.
“I hope there’s a time when we don’t have to say how courageous it is when someone comes out and says, ‘Yes, I’m living with HIV,’” said Elopre. “That’s where we need to move if we’re going to change the epidemic.”