How One Man Found Freedom Through an Undetectable HIV Viral Load
July 12, 2016
Fourth of July: In the U.S., it's a day to wave the flag and tell the story of American freedom at cookouts, with cold drinks and sweets.
For Bruce Richman, 47, of Brooklyn, this year's July 4th was a different kind of Independence Day, calling for a different kind of party. It marked six years with an undetectable viral load -- a status he couldn't have imagined when he was diagnosed in 2003 or when he was in the hospital in 2010 with opportunistic infections associated with AIDS. And it certainly wasn't a status he could have imagined during all his years of social and romantic isolation, when he felt that his body was toxic and he had to protect others from it.
Today, to Richman, an undetectable viral load means freedom -- emotional freedom from self-condemning voices, but also freedom to love, freedom to give himself the intimacy he's craved since before his HIV diagnosis. That one word, "undetectable," was the permission he needed to love again. So on the day many were celebrating another kind of freedom, he celebrated his personal freedom with his new boyfriend, his best friends and a cake festooned with a big, red U for undetectable. To Richman, this celebration was no less revolutionary.
"I'm at a place where I've spent 13 years with HIV, but it no longer stands between me and someone I love," he said. "Undetectable is something monumental in the history of HIV. To be able to become uninfectious to others -- it's a reason to celebrate, a reason to party!"
An undetectable viral load was something unimaginable even 20 years ago, when the first antiretrovirals -- with their severe side effects and limited effectiveness -- were distributed. Today, their side effects are milder and their effectiveness is so high. In someone like Richman, if his doctor were to look for HIV in his blood, he wouldn't be able to find it. That's what having an undetectable viral load means.
It wasn't until 2011, when Myron Cohen, M.D., published data from a multinational study in the New England Journal of Medicine that the revolutionary fact of undetectable became known. That study, called HIV Prevention Treatment Network study 052, or HPTN 052, found that when patients received HIV medicines as soon as possible, the risk of passing HIV on to their partner dropped by 96%.
The finding has been backed up by follow-up studies. Just this week, the Journal of the American Medical Association released a study of 1,166 couples in which one partner has HIV. The study found that, out of 58,000 individual instances of sex without a condom over 1.3 years, not a single person acquired HIV from a partner who was living with HIV and had an undetectable viral load.
Eleven HIV-negative partners did acquire HIV during the study -- but none of those seroconversions were associated with a partner on antiretroviral treatment (ART) who had an undetectable viral load. That is to say, their HIV infection came through other partners outside that relationship.
Richman was told that he had an undetectable viral load two months after he was released from the hospital in 2010. At the time, it didn't mean much to him. He was so used to thinking of himself as "a vector of disease" and so used to others thinking of him that way, too, that it didn't register.
It wasn't until about a year later, when he was telling his doctor how depressed he was about living with HIV -- how lonely he was, how much he'd been rejected by men who were afraid of the virus and therefore of him -- that his doctor told him exactly what undetectable means.
"Well," Richman remembered his doctor saying, "you know you can't transmit it."
Richman then, and even now as he recounted it, was stunned.
"How can this be possible?" Richman said he thought at the time. Then, in real time, he paused in his retelling and swallowing back tears. "I thought, 'How can this ... how can this be real? This is a miracle!' I wanted to share it with everyone I knew and celebrate it. My god, I can't harm a partner anymore."
Of course, getting to undetectable depends on things such as access to health care and steady income to pay for doctors' visits and lab tests -- even things as bureaucratic as whether the state one lives in has expanded Medicaid. It depends on having affordable medications, stable housing and food, which make taking medications on time every day possible.
Not everyone has access to those things. And in the U.S., having an undetectable status is far more common if you're white. According to a study released this week in the Journal of Acquired Immune Deficiency Syndrome, African Americans still lag behind Latinx and white people living with HIV in access to medications and reaching undetectable status. While 95% of Latinx and white people with HIV received ART prescriptions in 2013, only 93% of African Americans did. Likewise, undetectable status was more prevalent among Latinx and white people living with HIV than African Americans: In 2013, 86% of white people living with HIV achieved an undetectable viral load compared with 81% of Latinx and just 76% of African Americans.
The study didn't compare the ART access or undetectable status of women versus men or trans versus cis people.
But the study contained hopeful news: The gap between white people living with HIV and people of other races has narrowed dramatically. As recently as 2009, only 86% of African Americans living with HIV were prescribed ART (7% less than in 2013). And an undetectable viral load was achieved by three out of four African Americans in 2013, compared with just over one in three in 2009.
The needle is moving, which means, perhaps, that we all have more freedom to celebrate.
A New Freedom
For Richman, a diagnosis of HIV corresponded to intense isolation. The longest relationship in his life since 2003 has been the one he has had with HIV.
"For 13 years, I couldn't get close to anyone," he said. "The most I had was one long-distance relationship but I was just ... I felt diseased. I felt contaminated. And I felt that this was the way I was going to live the rest of my life. So I didn't get close. I didn't want to risk harming someone I loved."
It didn't help that men he dated reinforced this self-loathing by treating him as if he wasn't just living with the virus, but he was the virus. Richman said that as recently as this year, he went on a date with a man he was sure would be OK with his HIV status. The man was a human rights attorney and yoga teacher. But when Richman disclosed his status, "He was visibly terrified of me," said Richman, whose voice quivered slightly as he remembered the rejection. Even with an undetectable viral load and knowing that those stories about disease and toxins aren't true, that ignorance still hurts.
But Richman didn't let that stop him. Learning what an undetectable viral load means has freed him to pursue love and connections, which has relieved him of some of his depression and most of his isolation. If he's honest, he said, the negative voices about living with HIV are still there. But today -- and after celebrating his status publicly and with his new boyfriend -- new feelings have entered the mix: pride that the science has come so far, and gratitude that he's alive during a time when the science of HIV is changing everything.
And now he's harnessing these feelings to a new campaign he's co-directing. The Prevention Access Campaign seeks to get the word out about the new world of HIV prevention, including undetectable viral load as well as pre-exposure prophylaxis (PrEP).
"I feel this freedom from feeling like, and being treated like, I'm a vector of disease," said Richman. "I won't stand for it anymore."
What's Your Freedom Day?
You've read Richman's story. What's yours? Did you have an undetectable viral load at your last appointment? If so, do you feel as if it's something to celebrate? How has being undetectable changed your relationship with HIV, with yourself and with loved ones? We'd love to share your stories. Please email us at firstname.lastname@example.org.
Heather Boerner is a health care journalist based in San Francisco and author of Positively Negative: Love, Pregnancy and Science's Surprising Victory Over HIV.
Editor's Note: TheBody.com is a community partner of the Prevention Access Campaign.
This article was provided by TheBody.
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