Aging With HIV: People With the Virus Are Living Long, Productive Lives—So Organizations Like the Desert AIDS Project Have a Lot of Work to Do

HIV is no longer a death sentence: Today, most people with the virus—as long as they receive proper medical care—will live long and productive lives.

However, the amazing medical advances that have allowed for this have led to a new challenge: an increasingly large number of older people who are living with the virus.

The Desert AIDS Project was the first HIV/AIDS organization of its kind in the nation when it was founded by community volunteers in 1984. Today, it’s a federally qualified health center that serves anyone in need, regardless of HIV status—and a lot of DAP’s clients are older people who were diagnosed with the virus in the 1980s and 1990s.

“We’ve learned a lot since 1984,” said Jack Bunting, the public relations specialist for the Desert AIDS Project. “… We all know with the advances in pharmacology that people aren’t dying of this anymore. Now, we have an aging HIV population—people who are in their 20s all the way through their 80s. It’s no longer a death sentence. What we’re trying to do is invigorate people’s lives so they can live with it and still live long, healthy and productive lives.”

Bunting said DAP’s clients today have needs that would have been unthinkable during the AIDS crisis.

“Job training and vocational training—there’s a whole gamut of services that people need to live with this disease,” Bunting said. “We’re not doing triage for dying people anymore; these people are going to be here for a long time. They’re able to be of good use, good value and live productive lives. … There’s a hierarchy of needs. You can give them all the HIV medication you want, but if they don’t have anywhere to live, they’re depressed and isolated. If they don’t have food, and if they’re lonely, they aren’t going to take their medication.”

The fact that more than half of all Americans infected with HIV today are 50 or older led a group of local medical experts, patients and activists to start the HIV + Aging Research Project-Palm Springs, or HARP-PS. The nonprofit will be holding a day-long “Reunion Project 2.0” conference on Saturday, March 31. Visit www.harp-ps.org for more information.

Due to an increasing demand for services, the Desert AIDS Project recently announced a huge expansion project. The agency, located in Palm Springs at Sunrise Way and Vista Chino, has acquired the building south of the existing campus, and is expanding beyond those existing buildings as well. Once the $20 million expansion is completed in 2020, DAP will be serving an estimated 8,000 patients in its medical clinics—up from 3,900 last year.

A lot of the new DAP space will be dedicated to services that were not needed in the days when HIV was basically a death sentence. DAP’s dental clinics will serve 1,700 patients in 2020, up from 814 in 2017. DAP-owned housing—for which there’s currently a years-long waiting list—will almost double, from 80 apartments now to 141 in 2020.

Wade Cook is a client at and volunteer with the Desert AIDS Project. Now 60, Cook was diagnosed as being positive in 1991 while living in Texas, and he said the Desert AIDS Project saved his life.

“I’ve received treatment in a few other areas of the country, and the Desert AIDS Project is really unique and pretty special,” Cook said. “I’m at the Desert AIDS Project every day, given I volunteer there, and I go to all the groups and receive my medical care, and my mental health (care). As far as medical care goes, I’ve never received such thorough care, and my health has improved so much that I’m considering going back to work again.”

Cook said living with HIV takes a toll on one’s body.

“It speeds up the aging process in a lot of ways,” Cook said. “You develop diabetes (a side effect of some medications), heart conditions, high cholesterol and other different things that might develop with older age—but you develop them a lot sooner with HIV. For me, I developed severe arthritis, which is why I went on disability, because I was in a wheelchair for four years. The fact that my body is working so hard to fight this infection—it can only do so much. I’ve had a lot of issues with my liver just because of the medications that I take.

“HIV and aging is a new field for a lot of people to begin to look at—and to evaluate people like me.”

Long-term survivors have to deal with more than the virus and the side effects of the medication; Cook said people with HIV are often overcome with anguish.

“There’s isolation, which is a huge issue for people who are long-time survivors,” he said. “Depression is another issue that people struggle with. There are a lot of us who have lived with this for a very long time who have developed PTSD symptoms, because we’ve gone through a series of very traumatic events in the process—including the loss of lots of people early on in the epidemic. As time has gone by, lots of us have gone through severe health issues.”

This is one reason behavioral health care is also a big part of DAP’s expansion: In 2020, an estimated 1,200 patients will receive such care, up from 583 last year.

Cook talked about being first diagnosed with the virus back in 1991.

“I was a school teacher in rural Texas, and I was terrified that the parents of my students would find out—that the school district would find out, and I didn’t know what the response would be,” he said. “I didn’t go to the doctor using my insurance, because I didn’t want anything to show up anywhere.”

In Las Vegas, Cook said, he received care at a medical center that stigmatized people with HIV.

“You had to go through the back alley to get to the ward,” he said. “It had a very powerful effect on me when I first walked into that ward, because I had to walk through basically where the janitors kept all their buckets—that was what was set aside for people with HIV.

“I’ve referred to the experiences of living with HIV as living through a war.”

Despite the great care he’s received at DAP, Cook said he still deals with the mental and physical toll that HIV has taken.

“Those feelings don’t go away. I’ve lost a lot of people who I’ve known through the years, especially earlier on, when there was so little help,” he said. “One of the things the Desert AIDS Project does an incredible job with is mental health and programs for people to interact and communicate with each other. I’m at a point in my life where I’m considering going into a Ph.D. program. For years, I’d lived with this idea that (HIV) was the end of my life, and I was done.”

Another challenge aging LGBT individuals are facing, regardless of HIV status, is a lack of family members to help with care. Stonewall Gardens, an LGBT retirement community in Palm Springs, often deals with the fact that many residents have no family members.

“We deal far less with family members and more with friends and the individual themselves. Often times, most of our residents don’t have family members, or they’re estranged from them,” said Lauren Kabakoff, the marketing and sales director of Stonewall Gardens. “It’s not unusual that someone will come by themselves, or maybe their niece or nephew will come to look for them. That’s a challenge we have, because it’s so easy for kids to put Mom and Dad somewhere, and deal with selling the house and selling the car. But for us, our residents need to deal with all of this themselves. They need to change their address themselves, sell their home or deal with renting their home, and wrap up their affairs before they move in. There’s no family to say, ‘We’ll put Mom and Dad in there and deal with it later.’ It’s a bit of a different dynamic.”

Kabakoff said the Stonewall Gardens staff often winds up doing more than staff members at a traditional assisted-living facility.

“By default, we do become family for so many of our residents. We are the only people that they may have,” Kabakoff said. “We end up taking on a more personalized role.”

Kabakoff said it’s important for Stonewall Gardens staff members to understand what their clients’ special needs are—much like the staff members at DAP must do.

“They already have an inclination for what it takes to be here and work with our community,” she said “They have a connection to the community, have a passion for it, and they understand it in a way to want to help the residents on a deeper level.

“You also have to be creative in what you do, because this is uncharted territory.”

Jimmy Boegle contributed to this story. Below: Artists’ renderings of what portions of the DAP campus will look like when the $20 million expansion is completed in 2020.