Robin Thomas is a bounty hunter.
An HIV bounty hunter.
She hears of people who have fallen off their treatment, then hunts them down.
She calls, knocks on their doors, sees them at a local clinic; all part of her fight against the stigma of being HIV positive.
It’s one of the lasting, most persistent battles against the disease that first surfaced in the early 1980s. Thomas and others say it’s among the reasons why HIV ‑ human immunodeficiency virus, which weakens the immune system so it can’t fight off disease ‑ is often undiagnosed and as a result, unknowingly spread.
“I see clients who are really expecting to die sometimes,” Thomas said. “No matter how much I try to encourage them, talk to them about how they can overcome, sometimes they just go into a depressed state and they lose the thought of getting better. And sometimes they don’t.”
Some people would rather not know what’s going on with them. They would rather not know their status.
Juan Carlos Loubriel, director of health and wellness at Whitman-Walker, a Washington D.C. HIV clinic
Thirteen percent of Americans – nearly one in eight ‑ who had HIV in 2012 didn’t know that they had it, according to recent data from the federal Centers for Disease Control and Prevention. That fell from 21 percent in 2006, but experts insist it’s still a cause for concern.
Only five states ‑ Colorado, Connecticut, Delaware, Hawaii and New York ‑ have reached the National HIV/AIDS strategy objective of a 90 percent diagnosed rate.
Without regular testing, the disease can be difficult to catch. Symptoms might surface initially, then lie dormant for 5-10 years, according to Carlos del Rio, co-director of the Emory University Center for AIDS Research in Atlanta, Ga.
“Some people would rather not know what’s going on with them,” said Juan Carlos Loubriel director of health and wellness at Whitman-Walker, an HIV clinic in Washington. “They would rather not know their status.”
More than 650,000 people in the U.S. have died from AIDS since the epidemic began, according to the CDC; 39 million globally.
While medicine has advanced and some of the old stigmas have faded, the fear of catching something that never really goes away and that still can provoke a sense of blame, remains.
“I think that people attached it to behaviors they saw as wrong,” said Shannon Hilgart, executive director of the AIDS Outreach Center in Fort Worth, Texas. “And I think some of that still exists today.”
Loubriel knows this on a personal level.
His father, Benjamin, died of complications from AIDS in 2001 in Puerto Rico. When Loubriel’s family became aware that his father had HIV, no one would go near him. Care was left to Loubriel, who used to spend nights in the hospital at his father’s bedside after a full day of working and attending school.
One night he found his father lying on the floor in a pool of blood. He’d been there around three hours, his father told him.
“The stigma about having HIV, being gay; they wouldn’t touch him at all,” Loubriel said.
To combat the stigma and encourage testing, Clarmundo Sullivan, the founder of Golden Rule Services in Sacramento, Calif., brings condoms and HIV information to gay bars and other locales, including under bridges and drug dens. His four employees and additional volunteers also use apps like Grindr, a dating app for the gay community to get the word out.
Folks who are living with HIV, they still are walking through a social minefield when it comes to the social stigma and the threat that it poses to the disease.
Lance Rintamaki, associate professor of communications at the State University of New York at Buffalo, who has researched HIV stigma
Through Craiglist, they found a man who needed to get tested for a sexually transmitted disease, but wasn’t open about his sexuality yet. They saw him on a day when they knew their clinic would be less crowded. It was fortuitous: the man was a sex worker and while he turned out not to be HIV positive, he did have syphilis.
“We might have stopped an epidemic here in Sacramento County,” Sullivan said.
On a recent evening at Larry’s Lounge, a gay bar in the nation’s capital, several patrons said that similar outreach efforts have helped to erase some of the stigma associated with HIV.
Norbert Kupinski, 41, said that he doesn’t see his friends who have HIV any differently than people who have other diseases, like diabetes. What he feared most when he came out was what people would think of him. But he said he doesn’t feel the same way about HIV.
“If I went to the doctor’s next week and I was told that I was positive,” Kupinski said, “these are my friends, I would tell them immediately and nothing would change.”
Thomas, who tracks down people who’ve been negligent about treatment, is her own best example of how an outlook on life through the prism of HIV can be changed.
Eighteen years ago she was diagnosed with HIV. After five years of being on and off treatment and living in shame, she told her children. Then she told her neighbors. Now she tells her clients as she tries to steer them to better health.
“I don’t think that you can totally eliminate stigma,” Thomas said. “I think that it will always be an issue. But I think the way we overcome stigma is really getting to a place of being comfortable with ourselves.”