I tested HIV positive in 1992 at age 22. That was four years before effective treatment. Living in New York City, I saw the epidemic up close, so I expected to be dead before I was 30. Then a funny thing happened on the way to the graveyard—I kept on living.
Not only was I very much alive, I was in excellent health, apart from living with HIV. So much so that I decided to stop taking AZT six months after I had started. I didn’t take HIV medication again for more than a decade. I went to the doctor regularly, and my blood work was always fine, until it wasn’t. And that’s when I finally gave in. I’ve been undetectable ever since.
For more than a decade, I believed that perhaps I was one of the lucky ones—a long-term nonprogressor. Based on my labs, who could blame me? Even my doctors had cautious hope. I held that belief so closely that it took me well over a year to accept that I wasn’t. The mind is tricky that way.
So I can relate a bit to the journey that Loreen Willenberg has traveled. Fortunately for our cover subject—and indeed for all of us—she is the real deal. She has gone from long-term nonprogressor to elite controller and is now possibly the first person to be cured of HIV without a bone marrow transplant. That’s quite a wild ride for anyone.
Apart from sharing good health, Loreen and I have another thing in common: POZ. When the magazine launched in 1994, I was still an HIV newbie. I needed guidance, and POZ was there for me. Loreen credits POZ with being there for her too. Click here to read about her advocacy for an HIV cure.
Not only is Loreen the first person who may be cured of HIV without a bone marrow transplant, she is also the first woman. In this special issue focused on women, we spotlight the stories of other fierce women.
Toni-Michelle Williams is one of them. She is the executive director of the Solutions Not Punishment Collaborative, a Black trans- and queer-led organization working to build safety, leadership and political power.
The organization has built leadership programs for Black trans and queer participants who have experienced violence, been incarcerated or engaged in sex work. Many of them are living with HIV. Click here to read about the group’s efforts for restorative justice.
Another wonderful example is Shirlene Cooper. When she was diagnosed with AIDS in 1996, Shirlene was also told she had tuberculosis, syphilis and cervical cancer. She spent two years paralyzed from the neck down. She started walking again, however, and hasn’t looked back. Click here to read about the many HIV groups she has helped ever since.
Getting through the coronavirus pandemic has turned into a marathon. Everyone has been affected, but perhaps no population has been hit as hard as people living with chronic illnesses, including HIV. Click here to read about self-care in the COVID-19 era.