Pictured: Brown at home in Cathedral City with his buddy Oscar.

How treatment — and life — have changed after more than 40 years.

Words by Daniel Hirsch

When Bob Brown first received his AIDS diagnosis, the Cathedral City resident was utterly terrified. He thought he had but two years to live.

That was in 1998 and his disease was so advanced his doctors were especially concerned about his prospects. Some 28 years later, Brown is 92! “I’m absolutely amazed to still be alive,” he says.

Due to advances in treatment, HIV is no longer the death sentence it once was. Many who have lived with it for decades are achieving what once seemed impossible: growing old.

According to Center for Disease Control (CDC) data, over half of the 1.1 million people living with HIV in the U.S. today are 50 years old or better. That percentage is expected to rise.

Still, while HIV has morphed into a chronic, manageable condition as opposed to a deadly one, a generation of survivors is discovering the virus — with its long-term impacts on the body as well as its historical baggage — comes with new, previously unforeseen challenges.

Transformed treatment

Brown describes initially taking a huge number of pills a day — a regimen whose side effects included painful neuropathy in one leg.

“In the early days, we were just trying to save people’s lives but, in the process, giving them incredibly toxic medication,” says DAP Health Medical Director of Specialty Programs Dr. Jason Halperin, a longtime HIV expert. “It was very much due to the hard work of activists who were saying, ‘If there’s any potential this could work, we want it.’”

In 1987, AZT (zidovudine) became the first antiviral medication to treat HIV and AIDS. Its mild side effects — nausea, fatigue, headaches — were common, and its more serious ones — anemia, unexpected bleeding — could be severe. It likely kept many people alive, but it was very harsh on the system.

It wasn’t until 2012, when modern antiretroviral therapies (ART) became widely prescribed, that life with HIV changed dramatically. These therapies lowered patients’ viral load to such a drastic level that the virus became undetectable in the body. This meant patients could anticipate life expectancies similar to those of HIV-negative individuals, and that the virus within them became untransmittable (U=U, or undetectable equals untransmittable).

Today, Brown takes just one pill a day, reports minimal side effects, and plays tennis a few times a week.

The long-term impact on the body

Regardless of detectability, HIV does create a pro-inflammatory state which, over time, can lead to higher risk for heart disease and stroke.

Long-term survivors can also be more likely to display cognitive impairment as they age, a condition known as HIV-associated neurocognitive disorder (HAND).

Halperin says he’s excited about new research dealing with these health concerns. However, the advancement he would like to see above all else is a cure for HIV.

“We’re at the point where we could end the HIV epidemic, but the political will is not there even if the science is,” he says. “The only reason we’re at this point is because our HIV elders got us here. They deserve a cure.”

Attitudes then and now

The initial fear and stigma attached to HIV only exacerbated the crisis for those living through it. “You used to be terrified of spreading HIV just by breathing,” Brown recalls.

He remembers friends who lost their housing when landlords learned of their status, and airplanes grounded because passengers refused to fly in the same space as an AIDS patient. Many people lost jobs or were disowned by their families.

And because AIDS was initially declared a “gay disease,” humiliation and discrimination stung many in the community, whether they were HIV-positive or not.

Now, Brown says, HIV is “not part of my routine at a cocktail party,” and the sense of stigma has waned — but has not completely disappeared. He notices some people’s demeanor still changes when he discloses his status.

He’s also appalled that under the current administration, programs like AIDS Drug Assistance Program (ADAP) — which assist HIV patients with the cost of their medication, an initiative Brown credits with keeping him alive for three decades — now face funding cuts.

Painful pasts, uncharted futures

The unexpected longevity of HIV-positive people also creates material challenges they couldn’t have anticipated at the dawn of the health crisis. Many early HIV patients didn’t save for retirement because they thought they may never make it to their 50s.

“I see a lot of patients who lost generational wealth because of cut ties with family, or who don’t have savings and are living pretty precarious lives,” Halperin shares. “If you’ve survived living with HIV, it’s a miracle and an inspiration, but many of my patients in their 70s or 80s are now living in mobile homes that are under risk of being repossessed.”

The veteran caregiver says our system generally falls short in its support for the elderly, but for aging HIV patients — many of whom lost entire support systems and communities of friends and allies — the failures of a limited social safety net are that much more profound.

Living through the trauma of the early AIDS crisis also has long-term psychological impacts — ones patients and clinicians are only now starting to untangle. Survivor’s guilt can be intensely difficult to bear.

When asked if he ever wonders why he was one of many to become a senior with HIV, Brown — who went to countless funerals for friends during the height of the plague — say he has no trace of shame or grief. It’s about dogged, joyful resilience. “I’m very determined about life,” says the silver-haired survivor. “I enjoy life so much. I adore every day.”