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Why We Can Never Stop Fighting HIV

Diane Anderson Minshall

There was a movie in 1990 that has stayed with me since I saw it. Directed by Norman René and written by Craig Lucas, Longtime Companion was the first wide-release, mainstream film to deal with AIDS. I was a part of ACT UP/Los Angeles at the time — marching, protesting, and shouting about the need for everything (medication, research, the end to threats of HIV quarantines). I already had friends dying around me, many fellow 20-year-olds.

That René and Lucas are both gay men added to the authenticity of the film, and the actors (and future stars) who populated it (Bruce Davison, Campbell Scott, Mary-Louise Parker, Tony Shalhoub, Dermot Mulroney, and Dan Butler) had me in tears often.

There’s a scene where actor Mark Lamos, as Sean, has seen his AIDS complications reduce him to agonizing pain, inability to control his bodily functions, and near catatonia. His husband (or “longtime companion,” as The New York Times would call gay partners then) sits by his side and tells him it’s OK to let go. And he does.

I had a similar conversation about letting go with my father. He died shortly afterward. While he didn’t have AIDS, the experience reminded me of how grief and trauma stay with you, long after the moment has passed. That’s what it’s like to be a gay man over 50 these days. The trauma is there, but sometimes we forget, especially the older activists among us who worry that “kids these days” just don’t get it, that many young people — especially in the African-American and Latinx communities — are actually experiencing both the residual of AIDS-related deaths among older family members (an uncle, a mother) and the escalating rates of transmission between people their age (especially gay and bi men and transgender women).

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That’s the intersection where our cover star, hip-hop star Mahawam, resides. A Black, queer, gender-nonconforming rapper and multi-instrumentalist, Mahawam has a new album, Is an Island, that addresses the rage and grief he felt upon getting a positive HIV diagnosis. The lyrics are depressing, self-destructive, and frenetic. It was, for him, a time of withdrawal from friends, social occasions, and himself.

We all know that HIV is no longer a death sentence, but to deny that some people still experience it that way — due to fear, stigma, history, and lack of access — is to miss what happens to young Black men today. The ability to get and stay on treatment, to get to undetectable within weeks, to never transmit the virus and live a normal, healthy life isn’t something you can take for granted if you are a working class person of color in the U.S., much less in a different country (read our feature on HIV-positive asylum seekers from Africa on page 32). If you’re a working class, Black or brown woman with HIV, you know this well too: you may dream of affording the “self-care” everyone recommends for you (massages, acupuncture, vacation) but struggle to pay the rent and buy the kids’ school lunches, much less fork over $50 to feel good for an afternoon.

I’m relieved that my friends who lived are now healthy long-term survivors. I’m thrilled that PrEP uptake has risen almost 500 percent, scientists now universally agree that treatment can make you undetectable (and unable to transmit the virus), and that new research has us closer than ever to a vaccine and a functional cure.

But let’s not forget that while most people today won’t ever see their diagnosis devolve into stage three HIV (formerly known as AIDS), some untreated folks will. Without treatment, AIDS can progress  quickly, much like it did in those early years.

That’s why we need to make sure that treatment and PrEP are both accessible and affordable to those invincible teens and 20-somethings of today.

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