Trauma of AIDS Epidemic Impacts Aging Survivors

Trauma of AIDS Epidemic Impacts Aging Survivors

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Photo: Author and AIDS activist Sean Strub, left, with Let’s Kick ASS (AIDS Survivor Syndrome) co-founder Tez Anderson. (Rick Gerharter/Bay Area Reporter)

Part 1 of series. Also read Part 2, Part 3, Part 4, Part 5, Part 6Part 7.

SAN FRANCISCO--The nightmares terrorized San Francisco resident Tez Anderson for years. He would dream he was buried deep underground and wake in the middle of the night feeling panicked.

"It felt like I was in a lot of danger. It was not so much about death, it was more that I was in peril," recalled Anderson, who is 55.

Three decades ago Anderson learned he was HIV positive and, like many other

Depression, Loneliness
And Suicidal Tendencies

Research shows that older people with HIV/AIDS are dealing with elevated levels of depression, loneliness and suicidal tendencies, in addition to various co-morbidities or non-AIDS-defining illnesses, such as cardiovascular disease, and kidney or liver failure, said experts at the American Society on Aging conference in San Diego in March.

By next year, they noted, half of those living with HIV/AIDS in the United States will be 50 or older, with the number rising to 70 percent by 2020. Older adults already account for roughly 11 percent of all new HIV infections, presenters said.

A 2013 study of 160 people living with HIV or AIDS ages 50 or more in the San Francisco area found that 43 percent suffered from depression and 48 percent reported having anxiety. And a Chicago-based survey of 210 older LGBT people conducted in 2010 found nearly half to report having serious depression.

"That very much catches people's attention, as well as the level of co-morbidities, or this burden of disease people are dealing," said Mark Brennan-Ing, Ph.D., the director of research and evaluation at AIDS Community Research Initiative of America (ACRIA), at the San Diego conference.

"People are just shocked to find out people in their 50s and 60s are dealing with levels of morbidity in people we see in their 70s and 80s," he said.

Brennan-Ing, also an adjunct professor at the New York University College of Nursing, said people’s disbelief is partly due to ageism.: "When we hear of old people being sick and having a lot of illnesses, people say, 'Oh, they are old.' But we are talking about a group whose average age is 50, and for most folks, that is what age they are. It hits home a lot more for them."

Looking at the research, Brennan-Ing said the key factors driving high rates of depression are loneliness and stigma, not the long time since a person's HIV diagnosis.

"Feeling lonely is exacerbated especially among gay and bi men who are long-term survivors by the loss of lots of friends and lovers," he said.

--Matthew S. Bajko

gay men of his generation, witnessed what felt like a holocaust as he watched countless friends, lovers and associates being felled by AIDS.

Anderson survived to see the introduction of antiretroviral therapy in the 1990s, turning what had been a death sentence for so many into a now manageable chronic disease. Eventually, he would help create a way for other HIV/AIDS survivors to bond for mutual support and fight for better services.

Death, Grief—and Renewal

The traumas Anderson witnessed exacted a psychological toll as he aged. It began with the 2000 death of a lover, Gary Lebow.

"He was in and out of a coma. One day he opened his eyes to me and said, 'You know how much I love you?' He then closed his eyes and I said to him, 'It's okay to go. Your mom will be okay; I'll be okay,'" recalled Anderson.

He continued, "It was a very powerful gift to me that I was with him when he died. It got me over my fear of death; I wasn't afraid of dying anymore, I was afraid of living."

Loneliness and depression took over. In the next five years Anderson said he took "a wrecking ball" to his life. He ended friendships, and "hibernated" inside his apartment.

"It was like trying to catch a waterfall in my hands," he said. "I was drowning."

But the advent of online sites for gay men led him to meet his now husband, Mark Ruiz, seven years ago. The two "became a unit," said Anderson, and Ruiz "was part of my healing process."

Over time Anderson started to venture back out into public, spending time at the Castro district’s popular Café Flore and bonding with other men, who were also long-term survivors of the AIDS epidemic. Those conversations showed Anderson he was not alone in feeling adrift.

In November 2012, Anderson and Ruiz decided to form a new group they called Let’s Kick ASS, which stands for AIDS Survivor Syndrome, for long-term survivors looking to reconnect with people and to advocate for services and programs tailored to the needs of people aging with HIV/AIDS.

"We have needs and situations that are different," said Anderson. For one, a whole generation of gay men grew up not knowing if they would see their 40th birthdays, let alone age into their 50s, 60s and older. That began to change within the last decade, as longevity became a new reality for people living with HIV or AIDS.

"I am not looking at an epidemic and desperately trying not to die myself," said longtime AIDS activist Sean Strub, 55, author of the new memoir Body Counts: A Memoir of Politics, Sex, AIDS and Survival. "I may die of something else. My priorities are different."

Majority With HIV/AIDS 50-Plus

The number of older people living with HIV/AIDS is growing both nationally and globally. As the San Francisco-based Bay Area Reporter first reported in 2011, people 50 or older now account for the majority of people living with an AIDS diagnosis in San Francisco. In 2012, people 50-plus reached 51 percent of those living in the city with HIV.

The term “AIDS survivor syndrome” is not commonly used within clinical and academic circles, said Malcolm John, MD, director of 360: The Positive Care Center at the University of California, San Francisco.

John oversees the university's Silver Project research study of HIV-positive men aged 50 and older, which has determined that health professionals treating people living with HIV or AIDS need to focus on patients' mental health issues.

The study is confirming other indications that a lack of social support systems for older individuals with HIV or AIDS can lead to depression, isolation and loneliness. Those HIV US.pngfactors can negatively affect a patient's health, wellness and ability to utilize services.

Of 135 patients enrolled in the Silver Project study, 34 percent said they had experienced depression within the last year. And 22 percent reported mild loneliness with 13 percent having severe loneliness.

Noting that 57 percent of their patients are lonely, John stated, “That is a significant finding to say the least. We are seeing a lot of patients who aren't clinically depressed need to start medications.”

He explained that being an AIDS survivor and living with chronic disease, often complicated by additional health conditions all “start to weigh on people."

Age Barriers to Services

While HIV/AIDS in America has been graying for years, service organizations have largely been blind to the issue, said Mark Brennan-Ing, Ph.D, who directs research and evaluation at AIDS Community Research Initiative of America (ACRIA). So programs have been lacking for older people living with the virus. Federal funding exacerbates the problem, he noted, as it is largely targeted at youth.

"When we are talking about AIDS, the service organizations really are geared up for serving a younger clientele," he said. "They are very focused on HIV prevention and treatment issues, so they don't know so much about aging issues."

Also, added Brennan-Ing, , aging-services providers often "have no knowledge of HIV whatsoever. Really it is a question of building bridges between these two service systems."

In the mid 2000s, said Strub, attention did turn to what some suggested was a manifestation of post-traumatic stress disorder in older HIV positive men, as well as older men without the virus, who also lived through the horrors of AIDS.

"Definitely, there is residual damage many of us are living with," Strub said. "We just see so many people dealing with addiction issues, mental health issues -- suicide rates are just astonishing -- so there is definitely something there. There are efforts in many cities to create a greater sense of community around long-term survivors and mutual support for those who need it."

The City of San Francisco's LGBT Aging Policy Task Force, in its new report, titled "LGBT Aging at the Golden Gate: San Francisco Policy Issues and Recommendations," notes that older people living with HIV/AIDS "commonly experience increased prevalence of substance abuse and the need for mental health services."

The policy body cites the need for social services, housing and homelessness resources for this segment of the city's LGBT senior adult population, along with "socialization and support group opportunities."

The report also reiterated calls for "stronger HIV/AIDS cultural competency among mainstream senior service providers."

The Stressful Irony of Surviving

The irony of being able to live with HIV and live longer, Strub said, is that it allows people time to grieve and recall those they have lost.

While he was ill, Strub recalled, "I was sad but my life was so focused and I had so much to do every day. It was when my health came back that I didn't have that clarity of purpose. I started to have more time to grieve people who had died. People were dying so fast your mind shuts it off."

As he recounts in his book, Strub sought out solace in isolation and moved to a house in the woods of the Northeast to regroup.

"Those were rough years for me after my health came back, rougher than when I was really sick. Most people find it bizarre, but I hear it often from others," he said. "In coming close to death your life changes. Your perspective changes; you cannot go back to living the same life."

Matthew S. Bajko wrote this series of articles for the Bay Area Reporter through the MetLife Foundation Journalists in Aging Fellowships, a program of New America Media and the Gerontological Society of America. Next: “LGBT Latino Seniors.”