By Diane Anderson-Minshall
My stepfather came back from Vietnam in the mid-’70s, a broken man with post-traumatic stress disorder and health complications that grow more dire the older he gets. His PTSD has lasted 40 years; he couldn’t “just let it go” as some people have admonished. I was talking with my friend Scott* recently and couldn’t help but notice the similarities between the two men, veterans of wars they didn’t want to participate in, both still suffering from PTSD. Scott, however, never served in the military. He is a veteran of the AIDS epidemic of the 1980s and ’90s, that first wave of battle before the enemy was known but not before his comrades were all killed.
Scott has AIDS. He’s OK when I call it stage three HIV, as many activists and scientists now do to remove the stigma – after all, AIDS is simply the last stage of HIV disease – but he doesn’t want the world, and the LGBT community especially, to know he’s living with AIDS, and has been for 30 years or so.
Nobody listens to old gay guys living with HIV. Our world, from the prevention workers to the gay clubs to LGBT media, has focused on the fastest growing group getting HIV: young gay and bi men under 30. There’s good reason for that both from a prevention standpoint and a sense of racial justice. Young gay and bi men, especially those of color, have the highest risk of HIV among all young people, and while African-Americans only represent 33 percent of people under 24 in the national population, they account for 57 percent of new HIV infections among those aged 13–24. For young black trans women the stats are even worse; 56 percent of all black transgender women already have HIV.
Yes, it’s critical we reach these young men and women, because without intervention the Centers for Disease Control and Prevention has predicted that half of all black gay and bi men will have HIV in their lifetimes. Nobody is modeling numbers for trans women, but I’d venture to say it’s even worse.
The number of people living with HIV over 50 is growing as well, both because antiretrovirals are keeping long-term survivors alive now and because new infections are growing for a variety of reasons. And in an ageist world and a youth-centric culture, this group has been largely left to fend for themselves, which is perhaps why it seems, anecdotally, the suicide rate is higher.
Take my friend Scott. He’s saying what a lot of these people over 50 have been saying: that they aren’t being listened to, seen, or addressed. They are living long lives, but they are experiencing early aging (researchers say people with HIV age 14 years faster, despite living as long as non-poz peers).
Scott’s had Sculptra in his face to remove signs of wasting (a 10 percent loss of body weight) and he’s had surgery to remove fat from his back (the dreaded buffalo hump some anti-HIV medications cause). He has a catheter that sometimes leaks (another drug side effect) thanks to bouts of Kaposi’s sarcoma and anal cancer; fighting the latter with radiation and chemo took a toll on his immune system. Today he wears adult diapers, something that stops him from dating. His ego can’t take it. His longtime partner died of AIDS complications years ago. He’s lonely and isolated and sometimes battles depression.
But equally often he’s mad as hell. In large part, because like my stepfather, he’s been forgotten, as are the others who survived the first wave of the AIDS epidemic. He’s never really grieved (there’s no time) even though he lost dozens of friends, faced elected officials who suggested a vast quarantine system for people like him and realized how uncaring the world could be.
He’s also misunderstood, he says.
While the younger gay and bi men he meets treat HIV as a chronic manageable condition like diabetes, he’s had a different experience beginning with a constant fear of death in the early days. Young gay poz activists are sexy and healthy looking; Scott is not. He was the guinea pig, one of many who took the first HIV drug: AZT (azidothymidine), which was fast-tracked by the FDA in 1987 and thousands were dying.
People with HIV were thrilled to have something, even if that something was as flawed as AZT was back in the day. The early dosing was too high (1,500 mg vs. around 300 mg later) and quite toxic. Many (perhaps most) who took it still died. But people often halved their doses and shared it with friends who didn’t have access, which is what Scott did. Taking 750 mg may have saved his life. But it didn’t save him from AIDS.
He was diagnosed with AIDS as soon as the term changed from Gay-related immune deficiency (GRID) to acquired immunodeficiency syndrome (AIDS). HIV stage 3 or AIDS happens when a person’s CD4 cells falls below 200 cells per cubic millimeter of blood. If you don’t get treatment, people with AIDS generally only live one to three years. But, with treatment, you can live many years, sometimes going in and out of the clinical diagnosis of AIDS, but often never getting your CD4 count up high enough because of previous damage from opportunistic infections.
Nowadays, we – the HIV and LGBT media, health advocates, and more – push for medication adherence, treatment as prevention and undetectable viral loads. (Your viral load is how much HIV is in your blood; when it’s below 50, it is undetectable and you have less than a 1 percent chance of passing HIV to others). And when we report on gay men living with AIDS for years, commenters on social media often write scathing comments about these poz folks blaming them for not being adherent, not caring, “spreading AIDS,” and so on. What these ill-informed critics don’t get, what we don’t report often enough, is that many of these GBT folks with HIV take their medication religiously; perhaps they always have. They may have never left the AIDS stage of HIV infection. In 2013, 27 percent of the 26,688 AIDS diagnoses in the United States were people 50 or older; of the deaths related to AIDS complications that year, 37 percent were people over 55.
Older people who get diagnosed today with HIV are more likely to actually be at stage 3 when they find out. Gay men like Scott who have lived with it since the earliest days of the disease didn’t ask for AIDS, either. They were the guinea pigs who took the earliest of the drugs – it wasn’t until the mid-’90s that we had decent drugs, wasn’t until the last decade we had the best combination antiretrovirals. What that means is that much like those Vietnam vets (who also were subjected to untested chemicals), Scott and his fellow long-term survivors went through hell with their bodies so that young people today have the option to take a single pill a day and stay healthy and happy and undetectable. It’s an option that’s not available to Scott, but it’s one he helped create for all of you.
It took decades before Vietnam veterans got their own much-deserved memorial. So much loss and anguish surround the survivors of those who perished or are still MIA but presumed dead from that war. The same is the case with the war on AIDS. We have quilts and memorials in the works, things that’ll let us honor the thousands of our friends and fellow queers who died. But for Vietnam vets and long-term HIV survivors alike, there’s never been an emphasis on those who made it home, those who survived. No right to grieve, no time to wallow. They’re just supposed to count themselves lucky and shut the hell up.
But maybe they’ve been talking all along and it’s us who hasn’t been listening.
Diane Anderson-Minshall is the editor in chief of Plus magazine, editor at large for The Advocate, and founder and chief storyteller at Retrograde Communications, an editorial services and content curation firm.