While HIV treatment has improved drastically over the past 30 years, the social consequences of the disease continue to run deep.
Two thirds of people living with HIV are fearful of revealing their status to potential partners, a new survey by Gilead reveals.
The survey, conducted in the United Kingdom, interviewed 3,245 adults, some with the virus that causes AIDS and some without.
About 68 percent said that fear of revealing their status had affected their dating life.
Another 44 percent answered that they felt that HIV stigma was a barrier to a long-term relationship or marriage.
What the survey revealed
Despite being conducted in Europe, the survey raises an important issue about HIV — one that isn’t, strictly speaking, a medical one.
Individuals with HIV are living longer, healthier, near normal lifespans today, thanks to better treatment options, education, and support networks.
But quality of life, particularly in dating, relationships, and even hooking up, still suffers.
“This is not surprising at all,” Jimmy Gale, manager of HIV+ Services at the San Francisco AIDS Foundation, said about the survey data.
“The fear of rejection that people are experiencing around sexual activity is problematic,” Gale told Healthline. “There is so much that people living with HIV have to focus on to maintain and manage their health that this fear shouldn’t have to be a factor.”
But it is a factor — a big one.
“There is a history of violence toward people living with HIV, especially women,” said Gale.
Revealing your HIV status
Revealing one’s status isn’t just about the difference between a potentially good first date and a disastrous one.
Choosing to reveal one’s status can impact your job and your family.
“Aside from personal relationships, people are still afraid of the risk of losing jobs or housing based on their status,” Joel Goldman, the managing director of The Elizabeth Taylor AIDS Foundation, told Healthline.
With all of this on the line, choosing not to disclose one’s status might, understandably, be a pragmatic decision.
And better HIV treatment has, perhaps inadvertently, made it easier than ever to live a life without telling anyone.
“People aren’t coming out in the way that they used to because, back then, you wanted to let your family know because you might be sick at some point,” said Goldman. “Whereas now, if you’re taking your meds and you look fine, they think why should I disrupt my life.”
According to Gale, his advocacy group only advises individuals to reveal their status to someone if they plan on having sex with them.
He also recommends conversations, that may not be easy to have, about sexual history, safe sex practices, condom usage,
But Goldman says the tendency to keep one’s status hidden is still problematic.
“The amount of people not sharing their status is not helpful toward educating the communities that they live and work in.”
In fact, he points out that discussion and representation of HIV in popular culture and mainstream media has dwindled since the 1980s and 1990s.
Now, possibly owing to the great leaps forward in care, HIV has become somewhat invisible.
“We have to reinvigorate this conversation around HIV and AIDS,” he says. “Now we can have the conversation and talk about the tools that we have to stop it, whereas before in the ‘80s it was still a big mystery.”
As HIV advocates, both Gale and Goldman envision ways to help educate the public and lower stigma around the disease, so that individuals don’t feel so compelled to keep their status hidden out of fear.
Public health messaging is one way to continue education about HIV, but there are also newer, more focused attempts as well.
Goldman points out sexual health education as an avenue for revitalization.
Gale points to certain new dating apps (though he wouldn’t mention which by name) that will prompt individuals about HIV status and PrEP usage. While there is still a lot of discrimination and cyberbullying that can happen on these apps towards HIV+ individuals, he also sees them as a great way to start conversations and educate people as well.
“Creating a space within that online community to educate the app users would be a great way to go,” he said.
The San Francisco AIDS Foundation and The Elizabeth Taylor AIDS Foundation are also actively involved in ambassador programs — educating individuals about HIV, who can then talk about it in their communities.
“If we can just touch two to three people, when they go home they can touch ten more,” said Gale.
For now, choosing to reveal one’s status is almost a catch-22.
More people need to be open about their status to reduce stigma but, explained Goldman, “For them to be open about their status, society needs to have a better understanding.”