Outdated Laws Make Life Hell for People with HIV

They've failed for decades, since the prospect of criminalization scares people away from getting tested.
March 2, 2017, 4:50pm
Image: Carolyn LaGattuta / Stocksy

In 2008, Robert Suttle's life was calm. He was 29 years old and happy with his job as an assistant clerk at the Louisiana Circuit Court of Appeals. He had good friends and enjoyed his social life. One night, he went home from a bar with a guy named Joe*. According to Suttle, he told Joe that he was HIV-positive. Neither of them had a condom, so they waited until their next date to have sex. They slept together a few more times before Suttle ended the relationship. Shortly thereafter, he received a phone call that would wreck his life: Joe and their mutual friend were on the line together, accusing Suttle of sleeping with Joe without disclosing his HIV status. (To Suttle's knowledge, Joe's status remained negative.)

That was the first of many menacing phone calls. "He kept telling me he was going to press charges," Suttle says. "I kept trying to reason with him. But reasoning didn't work." Eventually, Joe made good on his threats. The police showed up at the Louisiana Circuit Court of Appeals and arrested Suttle in front of his colleagues. With no hard evidence, the case became "he said/he said" and landed, as it usually does, in favor of the HIV-negative party. Suttle's conviction—intentionally exposing Joe to AIDS—meant six months in prison and a spot on the sex-offender registry. This was his first run-in with the criminal justice system, but suddenly, it seemed, Suttle had no future: What would become of a black, gay, HIV-positive sex offender and felon? Who would ever give him a chance?

According to research conducted by the SERO Project, an organization that fights systemic discrimination against people living with HIV, Louisiana is one of 33 US states and territories with HIV-criminalization laws (laws that specifically target people living with HIV). Twenty-three of these states criminalize non-disclosure of status to sexual or needle-sharing partners. In the last 15 years, HIV criminalization charges have been filed more than 1,000 times. Many of the laws were hastily written in the '80s, back when the country was in balls-to-the-wall AIDS panic, when seemingly healthy people were waking up with purple lesions on their faces and dropping like bubonic plague victims. Thirty years later, evidence shows that the laws not only fail to slow the spread of HIV; they encourage it, in part because the prospect of criminalization scares people away from getting tested—that is, if they don't learn their status, they can't be accused of intentional transmission.

"It's been proven," says Laela Wilding, Elizabeth Taylor's granddaughter and spokesperson for the Elizabeth Taylor AIDS Foundation (ETAF), "that people who live in criminalization states are less likely to get tested." And that's why the virus spreads: Most HIV infection comes not from the bitter, vengeful HIV-positive guy who wants to smear his HIV all over town (a strawman, or at least an insignificant minority, especially in this day and age when proper treatment all but prevents transmission), but from unwitting carriers of HIV. Further, due to a number of factors, including discrimination in the criminal justice system, enforcement of the laws has disproportionately impacted marginalized groups—people of color, women, and transgender people.

Now, according to Sean Strub, executive director of the SERO Project, most of those 33 states have acknowledged that the laws need to go. Back in 2012, congresswoman Barbara Lee introduced legislation to get rid of all of them, but progress has been slow and decisions regarding repeals are still state-specific. "Colorado recently did away with their laws," Strub says. "Earlier this month, public health experts, advocates, and people living with HIV introduced bills in California and Florida to modernize those states' criminal statutes. Whether or not they'll pass, we won't know for a few weeks. We have more advocacy than ever. We'll see more progress over the next three to five years." He pauses. "But changing the environment that created this problem? That will take longer."

I attended public high school smack in the middle of the '90s when AIDS activism was at its zenith. Doctors were no longer bewildered by fatal cases of Kaposi sarcoma (a previously rare cancer, characterized by purple skin lesions, that started inflicting AIDS patients in the '80s). Progressives with negative status were pointedly sharing water glasses with their HIV-positive acquaintances. People living with the virus spoke in our high school auditorium. We learned (kind of uselessly, I would come to realize once I parted with my virginity) how to make a dental dam by slicing up a condom with scissors. We competed in condom races in our homerooms: How quickly could we tear open the package, pinch the air from the tip, and roll the thing over a cucumber?

Obviously, the town I grew up in was deeply liberal. We were fortunate. We were informed. And yet, at that time, AIDS education meant learning prevention strategies; it didn't mean learning compassion for those who were living with HIV. The medical community understood the virus better than they had a decade earlier, but an HIV diagnosis remained an imminent death sentence. Hence such rigorous training to prevent contraction. So most of what I took away from those condom races was an unshakeable fear of AIDS.

The fear I'm describing, and the subsequent, enduring stigma, helps to explain why the criminalization laws still exist, despite ample evidence that they do more harm than good. The AIDS-education trend went out with the '90s, which means that many of us have a twenty-year-old understanding of HIV. Things are very different today. For those who have access, combination therapies have downgraded HIV from a deadly horror show to a "chronic, manageable illness" that barely shortens one's life expectancy. Many HIV-positive people have non-detectable viral loads, meaning transmission is next to impossible.

In other words, aside from the stigma, living with HIV today is not terribly different from living with many other illnesses. An autoimmune disorder, for example. Or diabetes. Because of the associations we make with HIV, even another chronic sexually transmitted disease, such as HPV,  is far more socially acceptable. Far less scary. "It all comes back to stigma," Strub says. "Back in the '80s, the stigma was strong, but at least people looked at us with pity and compassion. If you had HIV, you were a dying person. Now we look and feel healthy and live normal lives and people no longer pity us; many see us as a threat. They see us as people who could give them AIDS."

Against all odds, Robert Suttle has his life back. The day after he was released from prison, he found a blog post Sean Strub had written about the stigmatization of people living with HIV. Suttle reached out to Strub on a whim and the two became friends. Together, they founded the SERO Project. Now Suttle lives in New York and dedicates his life to telling his story, helping others in similar situations, and fighting injustices like the one he faced.

"Most people don't realize how people living with HIV are being punished," Wilding of ETAF says. "We need to create a safe culture where people aren't afraid to get tested or talk about their status. We have a lot of work to do." That work, like most activism for good causes, might be complicated by the Trump administration.

"Overturning Obamacare would be a huge problem," she adds. "A lot of people living with HIV are concerned about their Medicaid and Medicare. If they don't have access to the medical treatments that are keeping them alive, if they don't have the medications that suppress viral load and make HIV less transmittable," she says. "Well. That is just a nightmare."