“I had a friend in Atlanta who died in the hospital last year of Pneumocystis pneumonia as if it was 1986. He died because he was afraid to take an HIV test.”
HIV is more treatable and more preventable than ever before, but public perception of the virus is not keeping up. In fact, some advocates argue that because people living with HIV are less visible — because they’re leading healthy, functional lives like everybody else — stigma against people living with HIV is actually as problematic as ever.
In many ways, the growing body of knowledge about the virus should be alleviating this stigma:
- Studies have found that it’s virtually impossible for someone with an undetectable viral load to transmit HIV to someone else, even through condomless anal sex.
- When HIV-negative individuals take a daily regimen of PrEP (pre-exposure prophylaxis), they reduce their own risk of contracting HIV by at least 86 percent. More than 40,000 patients are receiving Truvada as a preventative treatment.
- When used correctly, condoms continue to be 98-99 percent effective at preventing HIV transmission.
- The average HIV-positive person is now expected to live to be 55, a number that would likely be much higher if there weren’t so many individuals who did not have access to treatment. In 2001, the average life expectancy was 36.
But these advances have not changed how people think and talk about HIV, or the way that HIV-positive people continue to be treated with fear and scorn. Mark S. King, award-winning author and founder of My Fabulous Disease, explained to ThinkProgress what this looks like. “HIV stigma is this insidious silent tool in which we judge other people and separate ourselves from them,” he said. “When you have a culture that’s already largely based on desirability, then weeding out those who are considered less desirable just naturally takes place within that culture, and that is HIV stigma.”
King finds that stigma is particularly evident on gay dating apps, where people are dismissed because of their status or asked if they are “clean” — insinuating that people with HIV are thus “dirty.” There’s also a “stubborn willful ignorance about what’s really happening in HIV science today and the level of risk we actually pose to other people.”
Indeed, this is true even in the medical community. Sean Strub, founder of POZ magazine and director of The Sero Project, told ThinkProgress that the U.S. is slow to embrace the latest research and implement it into policy. “Eight years ago last week, the Swiss Statement was issued and largely ignored or criticized or dismissed by most US HIV policy and prevention leaders,” he highlighted as an example. The Swiss Statement was when Switzerland’s leading HIV experts expressed a consensus that HIV-positive individuals are sexually non-infections if they are undergoing effective antitretroviral therapy. Numerous additional studies, like the PARTNER study, have confirmed this reality, but that doesn’t mean it’s been fully incorporated into advocacy efforts.
“Even as PrEP becomes more widely utilized and more people with HIV are on treatment and suppressing their viral load, I don’t think we are likely to treat our way out of the epidemic,” Strub worries. “There are pockets of communities at risk who aren’t going to use PrEP and where there are many people with HIV undiagnosed or not on treatment. The increasing focus on biomedical prevention, at the expense of other HIV prevention strategies (condoms, comprehensive sexual health education, addressing stigma, addiction, etc.) could put those communities at even greater risk.”
Allowing that stigma to go unchecked actually inhibits the effectiveness of the other prevention methods. “I had a friend in Atlanta who died in the hospital last year of Pneumocystis pneumonia as if it was 1986,” King shared. “He died because he was afraid to take an HIV test. He saw the way people with HIV were treated; he saw the baggage that came with it. His own fear and insecurity about it was just enough to keep him, year after year, from knowing his status.”
Nothing exemplifies that ongoing stigma quite like the laws that criminalize HIV in 33 states, with lawmakers in some other states still proposing them. These are outdated laws that make it illegal for HIV-positive people to engage in sexual intercourse without disclosing their status. King, who called reversing these laws “the defining moral issue of our time,” points out that “there is no evidence whatsoever that they do anything to curb the epidemic. All they’re doing is putting people with HIV into jail.” In many cases, the accused did not infect anybody and even used a condom, but were still jailed with sentences that rival murder charges.
Studies actually have found that these criminalization laws worsen the epidemic. They discourage individuals from getting tested, because if they don’t know their status, they can’t be held liable for disclosing it. By not accessing treatment, they then help spread the virus.
The most brutal example of how people with HIV are demonized was last year’s case against Michael Johnson, a former college wrestler now serving 30 years in prison in Missouri on transmission charges. In the courtroom, his sexuality and race were used to paint him as a predator — a monster that a straight, white jury had no problem convicting.
Only one state, Iowa, is working to reverse its laws, which were some of the harshest in the country. In 2014, lawmakers stripped most of the problematic provisions, leaving criminal charges only for individuals who intentionally try to transmit HIV without another person’s knowledge or consent. The Iowa Supreme Court similarly overturned a conviction for HIV transmission that year, taking note of the research that shows that being positive does not guarantee a person can transmit HIV to others.
HIV criminalization laws continue to unfairly target the gay community, particularly in light of how quickly research about the virus has progressed. “HIV is the only viral condition where there is a law mandating that you disclose it,” King pointed out. “If you have Hepatitis C or HPV, which each kill more people a year than does HIV, there’s no law mandating that you disclose that to someone you could easily infect.”
In turn, King worries that these laws actually encourage men who have sex with men to reinforce anti-HIV stigma, and thus anti-gay stigma. “The real shame is that gay men have fallen into the hands of conservative lawmakers who are more than happy to lock up some diseased fags. We’re playing right into their hands with our queasiness over this whole disclosure thing.” He thinks men need to take more responsibility for their own safety and their own decisions instead of expecting others to do it for them. “Thank God the guy who infected me was not charged with murder, because 30 years later, here I sit, happy as can be, and he’d still be in jail.”
Strub is similarly pessimistic that HIV research will alleviate stigma on its own, particularly with such laws still on the books. “It may contribute to lessening stigma in specific settings, perhaps in healthcare provision and to an extent within some gay male communities,” he offered. “But overall, HIV stigma, as experienced by the stigmatized, is more about marginalization, prejudgement, “othering” and internalized stigma (self-stigmatization), and I don’t see biomedical prevention yet doing much to reduce those factors.”
The research is starting to slowly make a more visible difference, in that gay dating apps like Grindr and Scruff are presenting more options for how men can identify their status, such as “positive and undetectable” or “negative and on PrEP,” as opposed to just the binary of “positive” and “negative.”
But King still thinks the single biggest difference people can make is to get tested. In the U.S., 1 in 5 people who are HIV positive don’t know it. King reasons that someone who is HIV-positive, knows that they are HIV-positive, and is successfully treating the virus actually makes for a safer sexual partner than somebody who only knows their status as of their last test several months ago. Encouraging people to get tested, consider options like PrEP, and overcome the stigma and fear of knowing their status will actually be the key to keeping them and everybody else healthy and happy.