Role Call: Rae Lewis-Thornton

Enough Already!
HIV stigma needs to be stopped
by Rae Lewis-Thornton

Stop-HandIn the early days of the HIV pandemic stigma was horrendous. Those living with HIV/AIDS lived in the the backdrop of “good AIDS” vs. “bad AIDS” that resulted in blaming and shaming. If you contracted HIV through blood products or at birth, you had “good AIDS,” but if you contracted HIV through unprotected sex, intravenous drug use, or a same-sex relationship, you definitely had “bad AIDS.” Some even believed that we were being punished by God for our “transgression.” In those days, I would pull the label off the bottle of my AZT and flush it down the toilet. I protected my secret like a mother bear protects her cubs. It wasn’t until I transitioned to AIDS that I released my secret and liberated my HIV status from its seven-year bondage. But still, my willingness to disclose was only out of some twisted thinking that I was doing my friends and family a favor to learn that I was dying before I totally shriveled up like a prune. Honestly, all roads were leading to death. With a T-cell count of 8, a viral load of 397,000, and three rounds of PCP, there was no expectation to live. Disclosing under these conditions, I had nothing more to lose. “People could talk,” I thought, but I wouldn’t have to listen to the b.s. for long—can’t hear from six feet under.

Then a funny thing happened; I didn’t die. Treatment for HIV got better and better and I got better and better and we made a liar out of death. Yet, as treatment for HIV accelerated by leaps and bounds, stigma and shaming around HIV has remained the same. I marvel in disbelief at the ignorance that remains around HIV. There are days when I feel as if I’m in a time warp repeating 1985 over again, when little Ryan White was kicked out of school.

Stigma remains because people have been unwilling to grow with the advancements of HIV. We live in a diabolical contradiction. We acknowledge and believe that it is great that people are living longer with HIV, but at the same time, find it difficult to apply these advancements to the life of a person with HIV in real time. On the outside looking in, living longer with HIV does not translate into a “normal” lifestyle nor does it change the world view of people living with HIV.

The fact that Charlie Sheen was blackmailed spoke volumes to me. There is no other illness on the planet where such an outrageous act would be acceptable or even be viable. I get why people don’t want to disclose their status. The world is unkind to HIV. This “ugly” undergirds the fear of judgment that has paralyzed almost every person living with HIV at one time in their life. Even if only for five minutes, you think, “Is this person safe to tell?”

This climate reminds me of a friend, a brilliant neonatologist who died from what I call, “AIDS-related shame.” She was one of the first people I knew to have access to the breakthrough medications protease inhibitors, but she didn’t take her cocktail properly because she didn’t want her colleagues to “catch” her taking her medication and discover that she had AIDS. She often took her medication, all at the same time, late at night away from the judgments of others. She died in 1996 from AIDS-related causes with a viral load of over 500 million. And here we are twenty years later living under the same conditions. The HIV medicine which gives you life, can also be used as a weapon against you.

The fact is, we have come a long way from that single treatment of AZT that I took in 1988. With well over thirty antiviral medications in total, it’s time for us to grow by leaps and bounds in the same way we demanded of the scientific and medical community in the 80’s and 90’s. 2016 marks the thirty-fifth year since the first cases of AIDS were reported by the Centers for Disease Control. When are we going to come together as a community and say, “Enough already! My HIV does not make me dirty.” Stigma survives only because we breathe life into it. We must cut it at the umbilical cord before it strangles us to death. Our silence in the face of ignorance gives permission to the ugly, whether its at your family gathering or your Facebook page. At some point we all must challenge wrong in the face of right, those living with HIV and those who are our friends. I have had enough! Stop HIV Stigma!


Rae Lewis-Thornton is an Emmy Award-winning AIDS activist, blogger, and author. She is the first African-American woman to tell her story of living with AIDS in a cover story for a national magazine. Her memoir Unprotected will be released in early 2016. Follow her on Twitter and Instagram @RaeLT.