This article is part of News is Out’s Caring for Community series, which is focused on the challenges and triumphs of giving and receiving care in the LGBTQ+ community. These stories have been created through a strategic partnership.
There was a time when an AIDS diagnosis was a death sentence–no exceptions, no relief, no end in sight. In the 1980s and ’90s, a generation of men shrank into wretched illness that robbed them of their dignity and their future.
Joey Retana was diagnosed with AIDS at the age of 22. “The county health department told me I’d die within a year,” he recalled.
Don Dureau was diagnosed in 1991 at the age of 49. “I thought I would only be alive for about six years, at the most,” he said.
For Wade Hyde, “I was 25 years old, and my future was completely unknown. At the time, AIDS was the leading cause of death in men ages 18 to 34.”
And for Jeff Sauers, who became positive in 1994 at the age of 32, “Death was my outlook. I did every drug study they would let me. If I was going to die, then they needed to learn as much as possible from me.”
Don sums it up for many early HIV-AIDS patients: “I lived like there was no tomorrow.”
Then came the turn of the 21st century. Medication protocols advanced, and the HIV community began to see a glimmer of hope.
Don said, “I began triple medication therapy and was undetectable at the end of 30 days. After a few months of success, I became confident that I would be around for a long time–unless the medication itself killed me.”
“I had an inkling that I would survive after six months of testing Ritonitovar,” Jeff noted. “That drug saved thousands of people with HIV and was used to save many more diagnosed with Covid. Thank You, Dr. Fauci.”
Joey took inspiration from his idol, Dolly Parton: Better get to livin’!
The idea that those with AIDS should “get to livin’” was a significant change from the early years of the epidemic when issues of aging were not a major focus for people with HIV. Today, 51% of people in the United States living with HIV are aged 50 and older, though new HIV diagnoses are declining among people aged 50 and older.
An estimated 50% of people with HIV have HIV-Associated Neurocognitive Disorder (HAND), a spectrum of cognitive, motor and/or mood disorders, including HIV-associated dementia.
People living with HIV on antiretroviral treatment have significantly improved longevity but, as a result, may also face increasing multi-morbidity due to aging and long-term medication use. Care needs for this population have evolved to require a chronic disease management approach in which self-management plays a central role.
“Here I am 31 years later,” Don said. “I don’t smoke and I don’t drink. In my 50s, I became a workout fanatic. Now I do one-on-one Pilates twice a week and walk quite a bit.”
Wade has a long list of positive activities that keep him healthy and happy. That list includes sticking to a plant-based diet; limiting stress, especially stress over health-related matters; retaining excellent physicians and visiting them every four months; committing to never missing his medication doses; volunteering with HIV-related support organizations and participating in medical research.
Older people with HIV face different issues than their younger counterparts, including greater social isolation and loneliness. Stigma negatively affects a person’s quality of life, self-image and behaviors and may prevent them from disclosing their HIV status or seeking the health care or social services that many aging adults require.
Joey admitted, “I didn’t tell anyone in my family for over 10 years for fear of rejection.”
But Don noted with a smile, “Having loving friends around me makes all the difference in the world.”
Although Wade describes his future as “excellent,” he is concerned about “long-term survivor effects, such as lingering memory issues, various minor skin conditions and other reactions due to prolonged infection and anti-viral medications.”
It is important for older people with HIV to get linked to HIV care and have access to mental health and other support services to help them stay healthy and remain engaged in HIV care. You can find support services through your healthcare provider, your local community center, or an HIV service organization, or use the HIV Services Locator — https://locator.hiv.gov/ — to find services near you.
June 5 is HIV Long-Term Survivors Awareness Day. First observed in 2014, this is a day to honor long-term survivors of HIV and raise awareness about their needs, issues and journeys.
In a roundabout way, Joey said, his diagnosis saved his life. “I was living life all wrong,” he said. “HIV stopped me in my tracks, and I started living right.”
Jeff’s healthy lifestyle habits include “walking through the Dallas Arboretum as often as possible, cooking healthy and delicious meals and loving my husband.”
All the men interviewed for this article said they look forward to long and happy lives. They are confident that with strict adherence to medication protocols, healthy eating and supportive relationships with good friends, their futures are bright.
Robert Emery is a founding board member of the Coalition for Aging LGBT.