The Neglect of Survivors Must End

Prevention, yes! But ignoring long-term survivors is unconscionable.

by Hank Trout

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Everyone knows the statistics:

More than half of the 1,300,000 people in the U.S. living with HIV are over the age of fifty; by 2020 we will make up seventy percent of those infected. Many of us in the AIDS Generation, diagnosed before the life-saving antiretroviral “cocktails” became available, have lived with this virus for twenty-five, thirty or more years. And yet scant attention is paid to the unique needs and challenges of surviving with HIV into our fifties, sixties, and beyond.

Scant attention, indeed. At last year’s five-day International AIDS 2016 Conference in Durban, South Africa, more than 15,000 attendees from AIDS-related medical and social services professions shared information and strategies for preventing new infections, for “ending” AIDS. I’ve spoken informally with other long-term survivors who attended AIDS2016, including activist Jesús Guillén, Let’s Kick A.S.S. founder Tez Anderson, and others. The word that came up first when I asked any of them about the Conference was “Frustrating!”

Of more than 150 sessions and workshops on the latest developments in HIV science, programs and advocacy, only one program of note—a panel presented jointly by the ACRIA Center on HIV and Aging, Let’s Kick A.S.S., and others, called “Ageism, HIV and Aging”—addressed long-term survivors’ issues. Fewer than forty people attended.

Let that sink in. Out of 15,000-plus conference attendees, only forty or so could be bothered to learn about issues faced by us long-term survivors.

Jesús Guillén echoed that frustration. Jesús was in Durban representing the film Last Men Standing, a documentary about eight long-term survivors in San Francisco. “It was a success,” Jesús wrote, “but if we were not there, there was going to be zero exposure of our lives. Once again, I felt like we were forgotten.”

The conference planned for 2018 in Amsterdam shows little promise of addressing long-term survivors’ issues. The organizers of AIDS2018 have announced a contest to design the conference’s logo. Unfortunately, the contest is open only to entrants between the ages of ten and thirty! This is another back-handed slap in the face to every long-term survivor on the planet. It does not bode well for our inclusion in the AIDS2018 agenda.

The situation in the U.S. is equally dire. Bizarrely, the President’s National HIV/AIDS Strategy ignores the problems of older HIV-positive Americans. The Strategy focuses upon preventing new infections and making sure that those newly infected are given access to medications. The Strategy briefly references “caring for those living with HIV” but focuses on the newly infected. Similarly, the Strategy mentions the importance of stable housing in HIV treatment, but it focuses on housing for homeless youth.

The AIDS Generation is shamefully absent from AIDS policy.

Let me be clear: Of course preventing new infections and “ending AIDS” are worthy, admirable goals, goals that we all share and support enthusiastically.

But pursuing prevention goals while ignoring the real-life needs of hundreds of thousands of men and women who have lived with the virus for decades cannot be the solution. Yes, let’s do everything we can to prevent the next AIDS generation—but we must also take care of the first generation to survive.

This care must include financial support. For example, what happens to those women and men who, on the solemn indisputable advice of doctors with death sentences in hand, opted to subsist on long-term disability insurance policies, figuring they would die before long? Now they’re still alive, unexpectedly, and those policies will expire when they turn sixty-five. That forty to seventy percent reduction in their income will leave them destitute and in many cases homeless. Why is their housing not prioritized in anyone’s Strategy?

That increased care for long-term survivors must also include more medical research into the effects of HIV on the aging body and the consequences of ingesting toxic medications for decades (an expensive venture, granted, one that might be philanthropically funded by the pharmaceutical companies for whom we have been uncompensated guinea pigs for decades, maybe?); and emotional/social support for the ongoing grief and trauma of having survived so many who didn’t.

Neglecting the very real day-to-day needs of long-term HIV/AIDS survivors is simply unconscionable. But that neglect will continue until you and I stand up, shake our fists in the air, and DEMAND that our governments and our medical policy-makers listen to us and address our needs.

We didn’t get access to these life-saving medications by politely asking for them and quietly waiting for them.

We need to remember that.


Hank Trout edited Drummer, Malebox, and Folsom magazines in the early 1980s. A long-term survivor of HIV/AIDS (diagnosed in 1989), he is a thirty-six-year resident of San Francisco, where he lives with his fiancé Rick. Follow him on Twitter @HankTroutWriter.