Yoga, massage, counseling, and a buddy system help long-term survivors.
September 04 2018 7:00 AM EST
May 26 2023 3:00 PM EST
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Yoga, massage, counseling, and a buddy system help long-term survivors.
New York-based health organization GMHC recently launched The Terry Brenneis Hub for Long-Term Survivors, a bevy of programs and services that will specifically support people who have been living with HIV for a decade or more.
Some of the services offered by the Hub include: dedicated long-term survivor support groups, one-on-one mental health and substance use counseling, specific social events, workshops, meals and nutritional counseling, on-site pharmacy, medication management, and assistance with managing healthcare benefits and social security-related issues.
The Buddy Program, one of GMHC’s original programs, which was relaunched in 2015 specifically for the long-term survivor community, is also part of the Hub, as are new workforce placement and job readiness services. Additional complementary therapies and wellness programs — chair yoga, acupuncture, and massage — are aimed at whole body wellness.
The Hub was named in honor of Terry Brenneis, who GMHC’s Gregg Bruckno explains, was “a long-term survivor who at times struggled with the problems prevalent in this population: depression, loneliness, substance use, and lipodystrophy. He was emblematic of the difficulties in managing this complex ride. He struggled and overcame a great deal with the support of family, friends, and doctors. But we lost him far too early. He now will be remembered as part of a movement he would be so proud to represent.”
Bruckno says that GMHC began working with long-term survivors long “before the term long-term survivor was coined. But, through the Hub, we’re now codifying our work with these folks and giving them a central contact at the agency. I work as the dedicated long-term survivor specialist, and it’s my job to connect self-identified long-term survivors to resources at GMHC and elsewhere. I also conduct forums and workshops… participate in coalitions to promote information-sharing, and advocate for the long-term survivor community.”
At GMHC, Bruckno says, “We evolve with the epidemic. Starting in the mid-2000s, studies began to show that, because of incredible advances in medication, there was a fast-growing population of people who were living much longer with HIV — way beyond what many people expected. That was amazing news, of course, but it also presented a host of new challenges for those folks, as well as for organizations providing services to them."
According to Bruckno, about 41 percent of the organization’s 13,000 clients are age 50 and older—and it estimates that about half of them are long-term survivors. As the epidemic in the United States continues to evolve, long-term survivors are gradually becoming one of the key populations. “So while we want to prevent new infections in communities that are most at risk, we also want to ensure that long-term survivors have the tools and support network to help them stay on medication and lead healthy lives.”
Having worked with the long-term survivor community for many years, GMHC realized they had unique needs that were different from those newly diagnosed. That’s especially true of those who lived through the worst of the plague years and lost much of their support systems. “So as we considered all of this and looked at our program offerings, it became clear that we needed two things: staff who were dedicated to working with long-term survivors, and programs designed specifically for them.”
Of course, this new focus doesn’t distract from the agency’s commitment to providing other HIV treatment or prevention resources, Bruckno says.
“At GMHC, we serve anyone who is living with or at risk of HIV infection. Full stop. That means we work with young men who have sex with men of color, transgender people, women, older MSM, and everyone in between. But we also use data to tell us the populations that require special attention, and the data tell us that, in addition to targeting younger people with PrEP and other prevention tools, long-term survivors need our help. Our work isn’t a zero-sum game, and, luckily, we have the resources necessary to work across populations.”