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VIEWS What we owe longtime survivors
by Victoria Noe
2014-10-01

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I attended an emotional event at Gay Men's Health Crisis ( GHMC ), in commemoration of National HIV and Aging Day, Sept. 18 in New York City.

"We Aren't Dead Yet! What Do We Do Now?" was billed as a community discussion, with an impressive panel of experts: Dr. Judith Rabkin, Columbia University Dept. of Psychiatry and Dr. Perry Halkitis, NYU professor and author of The AIDS Generation: Stories of Survival and Resilience spoke along with two long-time HIV+ survivors, Jim Albaugh and Kevin Oree, and my friend, fellow ACT UP NY activist Jim Eigo.

The well-attended event was held to solicit feedback on the kinds of support and services needed by this often-forgotten, often-stigmatized group of people in my age group.

The needs were many and varied. By the time the GMHC staff member taking notes was finished, he had about four dozen topics listed: from the long-term complications of normal aging while adhering to powerful anti-retroviral drugs, to the stigma felt by gay and straight long-time survivors in regards to housing and employment, to the generational disconnect ( remember the "Generation Gap"? ) felt on both sides. Kevin Oree did not expect to see his 25th birthday but now, as he approaches 48, is facing common aging issues complicated by his HIV status.

Remember: No one expected "AIDS longtime survivor" to be a reality. It's a miracle, on many levels. But those—especially young gay men—who insist that all you have to do is 'take a pill every day and you're fine' need to wake up to the long-term effects of being HIV-positive. While they may in fact be 'fine' right now, studies are now underway to assess the impact of HIV on normal aging. Are you more at risk for heart attacks? Depression and panic disorders? Suicide? What about your ability to tolerate the medications without building up a resistance? And what impact do the complexities of ACA, Medicaid and Social Security have on your ability to live a full life?

For me, the most emotional moments came from those who bravely ( though sometimes anonymously ) articulated the most serious issues facing older survivors as loneliness and isolation. There is a critical need for grief support for those who only now—more than 30 years into the epidemic—are beginning to confront the loss of dozens and even hundreds of their friends. The isolation seemed particularly acute for those who are straight, who even after decades, knew no one else who was straight and HIV-positive. Thankfully, that issue was solved for them that night.

The panelists and attendees who identified as long-time survivors delayed their grief because they had to: they had to take care of themselves and their friends, they had to advocate for basic rights, they had to fight a war—no time to enjoy the luxury of grieving dozens of friends. That very complicated grief figures prominently in mental health issues in the long-time survivor community, including the epidemic of suicide,

There are striking similarities between those who have been affected by AIDS and those who have served our country in the military. Both groups suffer from survivor guilt, risk of suicide, complicated health issues and stigma. Both groups have kept their experiences to themselves, only willing to share war stories many years later. Both theoretically have access to strong support communities but often battle crippling loneliness.

Imagine if the war in Iraq or Afghanistan had dragged on for 30 years, with no end in sight. That's what it's like to be a veteran of the war against AIDS. Sometimes it feels like you're winning, sometimes you feel like you're losing. Sometimes you're on the frontlines, sometimes you're sent back for a brief furlough before redeploying. Others might forget about it, but for you, the war goes on.

I never envisioned a day when we would address aging issues for men and women who are HIV-positive. And it's not just long-time survivors: in this article, www.cdc.gov/hiv/risk/age/olderamericans/index.html, from the CDC, we baby boomers ( of whatever sexual orientation ) are becoming infected even now. HIV and AIDS are not big topics of discussion in AARP Magazine.

And that's why I challenge the AIDS community—in cities, suburbs and rural areas—to hold listening sessions like the one I attended, to identify and address the critically important needs of those aging with HIV. Demand that HIV and AIDS are on the agenda for every government agency, every nonprofit organization, every healthcare provider and insurer serving senior citizens. And make grief support to long-time survivors a priority—individual therapy, groups, and online resources—to help them process the grief for their friends that is only now rising up, and give them the peace of mind they deserve.

Victoria Noe was a fundraiser in the Chicago AIDS community in what she refers to as the "Bad Old Days" and is the author of five books, including Friend Grief and AIDS: Thirty Years of Burying Our Friends. Her work has appeared in Windy City Times "AIDS@30" series, as well as Huffington Post and Chicago Tribune. She is a member of ACT UP NY's Women's Caucus. Her blog is www.FriendGrief.com .


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