How Treatment as Prevention Ended One Man's Fear and Shame

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 findings from the HIV Prevention Trials Network’s 052 study provided evidence that when someone living with HIV takes their medications every day, it drastically decreases the chance of infecting someone else. In the trial, researchers found that the risk of transmission was reduced by 96 percent or possibly even more 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.

However, HPTN 052 focused almost exclusively 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 and my fears of giving the virus to someone else, 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, like far too many gay men, I tested positive for HIV in 2008, I found myself deeply concerned about how it might hinder my ability to connect to others both physically and emotionally. In many ways, I suddenly saw myself as a vector of disease, and I wondered if the fear and stigma around my HIV would leave me isolated and alone. While I soon found that sex was still possible and that many gay men had found a way to make peace with the virus, 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 — unsure what my responsibilities were as an HIV-positive man having sex, unsure of what the real risks were for my sexual partners, and very unsure that I could ever find a way to make condoms work.

Coming from this dark and confusing space, I can say that the emergence of these recent studies and the removal of uncertainties around my risk of infecting others 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 also led to their own share of controversy, and many have debated if doctors should advise HIV-positive individuals to begin treatment earlier in light of these findings. 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.

TasP may be hopeful for many people living with HIV, much as it has been for me. 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, as I see the drive for increased treatment pressing forward, 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.

Hearing public health officials and fellow advocates debate the merits of TasP and early treatment, 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.