HIV long-term survivors fight invisibility and isolation

Many had to sacrifice everything just to survive.

A 1985 protest outside New York’s City Hall as the City Council considered banning students and teachers with HIV from public schools. CREDIT: AP Photo/Rick Maiman
A 1985 protest outside New York’s City Hall as the City Council considered banning students and teachers with HIV from public schools. CREDIT: AP Photo/Rick Maiman

It’s been 36 years since the Centers for Disease Control and Prevention published its announcement that young gay men were suffering from an unidentified illness. Nearly four decades later, many individuals who contracted HIV in the early days are of the epidemic are still alive — but many are also hardly living. June 5 marked HIV Long-Term Survivors Awareness Day, and ThinkProgress spoke with two survivors about the work they’re doing to support this struggling, invisible community.

While anyone who has been living with HIV for a long time might be called a long-term survivor, Sean McKenna defines the term this way: “People who were told they were going to die of AIDS and managed to live 35 years.”

The informal term “AIDS Survivor Syndrome” describes the unique psychological challenges this population faces, including Post-Traumatic Stress Disorder, survivor’s guilt, loneliness, isolation, depression, and despair. Eric Sawyer, another long-term survivor, explained to ThinkProgress that it was like “losing basically half of your generation, wondering, ‘Why me? Why did I get to live?’” and then carrying that guilt around as you watched their friends and loved ones die.

Long-term survivors received their HIV diagnoses alongside many of their friends, but then watched most of them die while they miraculously survived long enough to access medication that helped them fight the virus. This continues to impact them to the present day.

“So many were so relieved to be alive that we just kind of hung out, happy to be alive,” McKenna told ThinkProgress, “but we were also given no guarantee how long we’d be alive. Thirty years later, we’re still alive, but none of us have careers and none of us have ways to define our selves. We’re left with memories of that war and it weighs heavily on our minds.”

Out of the darkness

Both McKenna and Sawyer are working with GMHC (formerly Gay Men’s Health Crisis), a non-profit organization based in New York and one of the first organizations founded to fight the epidemic, to create new resources to support long-term survivors. Sawyer was a founding member of ACT UP New York, an advocacy group working to improve the lives of people with HIV/AIDS, and recently joined GMHC as its Vice President of Public Affairs & Policy. McKenna has worked with the organization to restart its Buddy Program over the past few years.

A photo portraying GMHC’s original Buddy Program. CREDIT: GMHC
A photo portraying GMHC’s original Buddy Program. CREDIT: GMHC

As McKenna described it, GMHC’s original Buddy Program during the height of the epidemic would “dispatch people out to those who were dying and whose families had left them and who weren’t being fed in hospitals to make it easier for them to pass on.” In its new incarnation, the Buddy Program reaches out to long-term survivors to just help get them out of the house, even if it’s just to do some light shopping, see a movie, or go for a walk. “The biggest problem is isolation. You have to be poor and can’t get a job. We’re just home alone, and I thought the buddy program would be a smart way to get us out out of our isolation.”

Facebook has helped long-term survivors find each other, which is helping combat invisibility, but isolation is still a severe problem due to the price many had to pay to survive. The very social safety net many of these activists fought for trapped them in systems that may have kept them alive, but prevented them from actually living. Many turned to services like long-term disability, Social Security disability, or other government-sponsored programs that helped provide medicaid cards, food stamps, housing placements, and other basic services — and their survival became dependent on these services. “The meds saved us, but we’d given up everything else in our lives,” McKenna said.

This has kept them homebound and, as Sawyer explained, created real obstacles to obtaining work and reintegrating in the world. “What if I take a job and I’m not able to handle the job — if my health can’t take the stress of returning to a full-time work situation? I’m gonna be screwed because I’m going to lose all the benefits I had for my living situation, food stamps, and medical care.”

Likewise, the time many of these people spent getting healthy created significant gaps in their resumes. Not only might their skills be 15 years behind current technology, but they might also have to disclose their HIV status to explain the long time they spent on disability, opening them to stigma and discrimination. As a result, many are just living in their homes by themselves with nothing to do and no community to interact with.

Into the light

Psychological problems aren’t the only problem long-term survivors face. Though the meds may have saved their lives, they came with consequences. This group has lived with HIV longer than anyone else, and they’ve fought that HIV with many different kinds of medications along the way — what McKenna characterized as “the life of the guinea pig.” No one knows what the long-term effects of any of those medications is, nor what effect HIV might still have on the body over that period of time.

One clear side effect that has emerged, however, is lower bone density. “I was diagnosed with arthritis at 45,” McKenna said. “That’s not normal.” He said he has also had friends die of heart attacks in their 50s, and one friend passed six kidney stones in one year — also not normal for someone in their 40s.

Sawyer has had three hip replacements. “There’s so much bone density lost and consequences to the health of bones that my first hip replacement was caused by a vascular necrosis — death of blood supply to the bone,” he recounted. “Literally pieces of the hip started breaking off.” He’s also suffered from horrible neuropathy (nerve damage) in his feet and legs that is so painful that he can only wear loose sneakers. In many of his friends, he’s noticed that in addition to diabetes, heart disease, and arthritis, many long-term survivors experience cognitive impairments, creating additional barriers to returning to work.

Sawyer himself only returned to full-time work in 2008, having survived on long-term disability since 1991. “My immune system reconstituted itself and I didn’t have constant diarrhea and a number of other side effects that made it impossible for me to hold a full-time job.”

Being a long-term survivor means not only having tried all the different medications that have been developed along the way, but also just bearing witness to all the life-impacting discoveries about HIV.

“Being a long-long-time survivor is a mindfuck,” McKenna said. “I’ve been with the same guy for 15 years, and every time we had sex, I worried-worried-worried I could infect him, only to learn that because I’m undetectable, I probably can’t infect him.” He described a sort of roller coaster of “being told you’re sexually liberated, having that taken away from you by a disease, living for a decade questioning every move you make sexually, then find drugs that keep you alive, but not comfortably alive,” only to then find out “you could’ve been having unworrisome sex” for the past two decades.

Recent research has found that for people who can manage their viral loads to undetectable levels, it’s virtually impossible for them to transmit the virus to others. This has given rise to the “U=U” campaign (Undetectable HIV = Untransmittable HIV), which is slowly helping combat stigma.

“I think we’re kind of early in the curve of acceptance of U=U reality,” Sawyer said, “and there are still lots of people who won’t have sex with anyone who’s HIV-positive even if they have an undetectable viral load because there’s still stigma.”

Likewise, Sawyer believes the advent of PrEP (Pre-Exposure Prophylaxis), which people who are HIV-negative can take to protect themselves from infection, is helping combat that stigma. “I have lots of people telling me anecdotally — and my own experience — that people who are on PrEP and really understand an undetectable viral load are far less fearful of sexual experience with people who are HIV-positive.” Nevertheless, he said, “There are people who are on PrEP who do know about undetectable viral loads who still are fearful of — and still opt out of — having a sexual relationship with someone who has an undetectable viral load even though they’re on PrEP. That shows that there’s an inordinate amount of stigma around HIV infection that U=U and PrEP are unable to overcome.”

Untold stories

Both men agree that more must be done to raise awareness about what long-term survivors are facing. They’re helping serve the community in New York City through GMHC, and the Let’s Kick ASS project is doing similar work on the west coast, but there are survivors all over the country not being reached.

Sawyer believes people just don’t understand that HIV is still a challenge in many people’s lives. “I think lots of people both in the LGBT community ,as well as the public at large, think that the HIV cocktail has made HIV no longer an issue that anyone needs to be concerned about or that has significant consequences for someone who is HIV infected. People think, “Why are there still people on long-term disability? There’s treatment for that.’” They think these survivors might just be lazy freeloaders who don’t want to work, which prevents them from empathizing with the challenges these survivors still face.

CREDIT: GMHC
CREDIT: GMHC

McKenna agrees, and added that survivors themselves are a font of wisdom overdue to be tapped. “I guess there’s a certain amount of respect we never got and may never get it,” he said. “I wish that people understood that in talking about what we’ve been through, we’re not trying to belabor what we’ve been through; we’re trying to pass on our history and resilience and help them understand that you can live with AIDS. You don’t want to, but you can.”

He also pointed out that despite their isolation, long-term survivors are not oblivious to the current political climate. “There are people who are really afraid,” he said. “It’s a flood of memories to have that idiot in office” — McKenna refused to identify President Trump by name — “because it’s too much like Reagan.”

He believes Trump’s administration, which has proposed massive cuts to HIV/AIDS funding, is “too ignorant of what we’ve been through and how far we’ve come and how close we can be to ending this thing. I just worry — and I think long-term survivors worry — about us ending before that straightens itself out.”