How treatment as prevention ended one man's fear and shame.
January 02 2015 4:00 AM EST
July 23 2019 3:22 AM EST
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In recent years, two remarkable studies have emerged that provide real solutions for people living with HIV who want to avoid passing the virus on to others. In 2011 the HIV Prevention Trials Network's 052 study provided evidence that when someone living with HIV takes their medications every day, the risk of transmission was reduced by 96% when the HIV-positive partner had a level of HIV in their blood that was "undetectable," or so low that it can't easily be measured.
HPTN 052 focused on heterosexual couples, so it was momentous when earlier this year the PARTNER study in Europe announced similarly optimistic preliminary results for gay men. In that study so far, no new infections occurred in gay couples where the HIV- positive partner had an undetectable viral load.
Having grappled with my own HIV diagnosis over the past seven years, there has been something deeply profound and very personal about the findings of both studies. Ever since the HPTN 052 results were released, I've often pondered if my transition into living life with HIV might have been less traumatic had I known that treatment would help me avoid passing HIV on to my sexual partners.
When I tested positive for HIV in 2008, I suddenly saw myself as a vector of disease, and I wondered if HIV would leave me isolated and alone. While I soon found that sex was still possible, the stigma and my uncertainties about the risk of transmission ensured that negotiating sex was always fraught with fear and worry. Although I consistently disclosed my HIV status to men I had sex with, I could never be certain how the person across from me might react. Too many times, disclosure of my HIV status was met with unexpected and deeply painful verbal abuse.
Actually having sex presented even more challenges. Although I desperately did not want to pass the virus on, I found it as difficult as ever to negotiate condom use. In retrospect, I suppose it makes sense; condoms had been a tremendous challenge prior to my diagnosis, so expecting perfect adherence afterward seems almost silly. Still, the struggle tore me apart, and I found myself frequently in an ethically challenging space where my sexual partners knew I had HIV but decided to not use condoms as long as we minimized risk by having me as the bottom. Although all condomless sex was completely consensual, I found myself filled with shame and guilt after each experience.
The emergence of these recent studies has been nothing short of miraculous for my mental health. Having maintained an undetectable viral load since 2009, I can finally say with confidence that I have most likely never passed the virus to anybody else. I am also able to more freely connect with other gay men, regardless of HIV status, and leave my fears behind. My hope is that other gay men, whether positive or negative, will also find a way to escape their HIV-related fears, and that communities that have found themselves divided by HIV status may finally find healing.
However, hopeful as they are, these studies have led controversy. So-called treatment as prevention, or TasP, strategies have emerged to try to get far more people living with HIV on treatment as soon as possible in order to protect their sexual and drug-using partners. Such tactics have been both heralded as hope for finally ending the AIDS epidemic and denounced as pushing people on to early treatment when it might not be necessary or beneficial for their health.
I imagine that many, but not all, HIV-positive individuals will choose TasP and early treatment as a way to protect others if they are given the option. However, I am reminded of how difficult it was for me to start medications and how important it was that the decision to begin treatment was entirely my own.
I find myself praying that the policies we build and the messages we create will construct a more hopeful reality for others living with the virus, where they can finally have the peace of mind that TasP brings without ever feeling forced to take medications before they are ready. It has been a long journey to feel so free and so safe as a gay man living with HIV. I sincerely hope others are now able to find a shorter path to happiness.
Jeremiah Johnson is the HIV prevention research and policy coordinator for Treatment Action Group, an independent research and policy think tank fighting for better treatment, a vaccine, and a cure for AIDS.
An unabridged version of this essay was first published in HIV Plus.