Long-Term Survivors Are Doing It for Themselves

When Earvin “Magic” Johnson announced his retirement from the NBA in November 1991 after discovering he was HIV-positive, few believed that he would continue “living a long time.”

A decade had passed since The New York Times’s infamous 1981 headline “Rare Cancer Seen in 41 Homosexuals” that introduced the HIV epidemic to the American public. Ten years later, the stigma of HIV being a “gay disease” was deeply entrenched, as was the equation of a positive diagnosis with a rapid and withering death (even Johnson called HIV a “deadly disease” at the time).

The mood in the pressroom and among fans across the country that day was somber. Few believed Johnson would survive, much less thrive physically and personally.

But he did. And Johnson isn’t alone.

By 1996, a 20-year-old diagnosed with HIV could expect to live another 19 years, thanks to the development of antiretroviral treatments. Five years later, that life expectancy had extended dramatically. By 2001, a 20-year-old diagnosed with HIV could expect to see their 70s. That jump can be attributed to a greater understanding of the virus, powerful new drug cocktails, and changing treatment protocols. Today, the life expectancy of a person with HIV is nearly on par with their HIV-negative peers.

But the increase in life expectancy created a unique — and often unexpected — set of needs for long-term survivors. People who didn’t expect to live another 10 years now find themselves three decades later dealing with traditional elderly ailments along with their HIV-positive status. They are discovering that HIV (and drug side effects) can add challenges to confronting memory loss, heart disease, diabetes, and cancer. Their situation is further compounded by the limited research on the impact of HIV (and long-term antiretroviral usage) on the aging body.

This is Generation HIV, the first generation to live a lifetime with HIV, something we haven’t seen before.

Those who survived the AIDS epidemic also carry the heavy psychological burden of having watched many friends, lovers, and acquaintances perish. Activist Tez Anderson coined the term AIDS Survivor Syndrome in 2012 to explain the wide range of emotional, physical, and age-related ailments that afflict survivors.

The concept that this group faces unique health issues is gaining support. Reviewing data collected from over 7,000 individuals since the 1980s (as part of the Multicenter AIDS Cohort Study), HIV researcher Ron Stall, a professor and director of the Center for LGBT Health Research at the University of Pittsburgh, has found that long-term survivors are more likely to experience certain symptoms.

In fact, 22 percent reported experiencing three or more of nine conditions — ranging from depression, anxiety, and emotional numbness to nightmares, difficulty sleeping, and despair about the future — from fairly frequently to daily. Isolation and loss were key issues. One out of every four people in the study reported losing more than 10 people close to them due to AIDS complications, and over one-third of survivors said they still grieved those losses.

Stall told TheBody.com last year he wasn’t surprised that Anderson’s hunch has proven to be founded, saying “street epidemiology tends to be pretty correct and street wisdom raises questions that are worth looking into very carefully.”

Above: Helping hands (Above): Desert AIDS Project is one of few organizations seeking to promote the health and well-being of long-term survivors

Anderson, who says he identified the syndrome to describe his own confounded and befuddled state of mind and affairs dealing with HIV, has his own list of conditions suffered by him and his fellow long-term survivors. That list includes Stall’s nine, and adds others such as substance abuse, sexual risk-taking, cognitive impairment, and suicidal thoughts.

He points out that in addition to facing these mental health concerns, long-term survivors are facing issues around aging, compounded by physical ailments brought on by living with HIV (and taking drugs for decades when doctors didn’t know the consequences of doing so).

To help get long-term survivors the support they need, Anderson formed Let’s Kick ASS (LetsKickAss.hiv) to raise awareness and find solutions to AIDS Survivor Syndrome. Headquartered in San Francisco, with chapters in Portland, Ore.; Palm Springs, Calif.; and Austin, Texas, the group offers outreach programs for shut-ins and weekly social events to break down the isolation and resulting despair so many survivors face.

Eric Jannke of Let’s Kick ASS Palm Springs received an HIV 50+ Strong and Healthy Mini-Grant from the HIV organization NMAC, which are awarded to raise awareness of issues facing people over 50 who are living with HIV. (Read about the other award recipients on HIVPlusMag.com.) Jannke used the funds to create The Kick ASS Manual, a free reference guide (available at LKAPS.org) on AIDS Survivor Syndrome and aging with HIV. The guide offers personal stories and short but informative essays with the goal of providing a better understanding of  of survivors’ experiences.

The many challenges facing long-term survivors turn out to be more complex for women, who share men’s difficulties but must also deal with specific mental and physical health issues. In many places, HIV is still thought of as a men’s issue, and this entrenched bias has disadvantaged women with HIV, who often struggle to find competent care. For example, access to specialized care is a concern, as many gynecologists aren’t knowledgeable about the treatment of patients with HIV.

Bridgette Picou, a vocational nurse with Desert AIDS Project in Palm Springs, is aware of the challenges facing positive women. A proud mother and grandmother, and an avid hobbyist, Picou is also HIV-positive. In 2012, after she had lost her long-time job and was dealing with a chronic shoulder injury, Picou learned of her HIV status. Once she was without a job, her insurance soon ran out and her CD4 count plummeted.

“This was before Obamacare,” Picou tells Plus. “And I was pretty desperate.”

She learned of Desert AIDS Project (DesertAIDSProject.org) by word of mouth and it changed her life. She shares her experience of turning her deep despair into a celebration of life in an essay called “You’re Not Going to Die,” in Jannke’s The Kick ASS Manual.

“I came to DAP feeling lost and at the end of my rope,” Picou recalls. “I found help here as a patient, which grew into making a home here as a nurse.”

Desert AIDS Project seeks to promote the health and well-being of the LGBTQ and HIV communities through its various programs and services. It offers primary and HIV/hepatitis specialty care, as well as behavioral health services, dentistry, and other social programs. There’s a sexual health clinic and a pharmacy prescribing both PEP and PrEP. DAP offers yoga instruction, support groups, sewing circles, and more.

“HIV isn’t easy,” says Picou. “It is a frightening, life-changing diagnosis.” But, through DAP, she was able to learn, “It is not, by any means, the end.”

Some of the difficulties facing people with HIV, of course aren’t obvious at diagnosis. It’s often many years later that they’ll realize how aging is impacted by the disease. And many long-term survivors—especially those who never thought they’d live long enough to need plans for senior years—are shocked to realize they now need care that they simply cannot afford. Added to that are the complicated end-of-life decisions that older people face, and many long-term survivors find themselves lacking resources when they need them the most.

PALS (Planning Ahead For LGBTQ Seniors) is helping to change that. Years ago, PALS founder Richard Bass saw too many of his friends and associates pass away with their estates in disarray. Considering that many people living with HIV are estranged from their biological families (who tend to inherit when other plans aren’t in place) a lack of planning can lead to situations where someone who doesn’t know or honor a person’s wishes is entrusted with their estate. Bass recognized the importance of making plans, particularly before sudden adverse health events occur.

Bass created PALS to assist LGBTQ seniors in planning for their long-term care by providing the necessary tools, resources, and education they need to do so. Through events, seminars, and informal gatherings, PALS also seeks to create a community of people looking out for each other, to ensure that no one is forgotten or left alone.

Above: Bridgette Picou is using her life to bring the unique challenges HIV-positive women face to light.

“Conversations provide options and encouragement to take action,” Bass explains. One of the more challenging offerings of PALS is the Death Café, inspired by the movement started in England in 2010 by the late Jon Underwood. The primary goal of the movement, and PALS’s version of the café, is to demystify death. But while Underwood preferred philosophical discussions about the nature of death, PALS offers gatherings where people plan for their final days. PALS Death Café participants help each other navigate through the maze of legal documents surrounding the end of life as well as managing their own fears of the unknown.

“Our discussions model the kinds of topics that attendees must have with their family and friends,” Bass says. “About their hopes and fears for the future, but also legal documents, care options, finances, managing property, legacy, end of life plans.”

A good sense of humor helps lighten what could otherwise be a dark discussion, and PALS Death Cafés offer both angel and devil’s food cake at their monthly gatherings.

While more awareness must be drawn to the many unmet needs the long-term survivor community still faces, there are growing efforts to address these issues. Rather than wait for others to act, groups and individuals are moving to independently identify concerns and organize relief.

In the early days of the AIDS epidemic, when those affected by HIV found few resources to meet their needs (and an intransigent government unwilling to address the crisis), they turned to each other to save themselves. HIV-positive people and LGBTQ activists marched in the streets demanding better drugs and they founded organizations, started clinics, and raised money for research in order to fight the disease. Now some who survived the brutal reality of those days are once again rising to the occasion, creating the solutions they need as they face new challenges, often on their own.