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40 years of AIDS: How a ‘death sentence’ became undetectable

Utahns living with HIV recall the past four decades and look to the future

(Francisco Kjolseth | The Salt Lake Tribune) Rusty Davis-Clem, left, who was diagnosed with HIV about 35 years ago, is joined by his husband Mark, as they talk about their life on Friday, Nov. 26, 2021. As World AIDS Day approaches, 40 years since it was first diagnosed, Rusty reflects on the ravages of the AIDS pandemic and how he has lived to see the medical advancements made. He grew up in California, but now lives in the Salt Lake area.

This story is part of The Salt Lake Tribune’s ongoing commitment to identify solutions to Utah’s biggest challenges through the work of the Innovation Lab.

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Rusty Davis-Clem had a toothache.

It was 1985, and he’d just gotten health insurance and could finally get it checked out. His boyfriend was the one to push him to go.

Because Davis-Clem is gay, his doctor recommended he get tested for HIV when he came into the office. AIDS went by myriad names then, including gay cancer and gay-related immune deficiency (GRID). Back then, the test took two weeks.

“It was the longest two weeks of my life,” Davis-Clem said, who now lives in Utah.

Davis-Clem and his boyfriend, Mark Clem, were called into the doctor’s office -- his office, not an exam room -- about 35 years ago to receive the news that Davis-Clem was HIV positive.

“[He] walked in and said, ‘Don’t make any plans, kid, you’ve got five years to live,’” Davis-Clem said. “I was 24.”

Davis-Clem’s now husband, Mark Clem’s subdued demeanor is a foil to Davis-Clem’s outgoing and exuberant personality. Clem has stayed by his partner’s side through the dark years, offering support.

“Rusty tends to run through the scenarios and worst cases,” Clem said. “My focus was keeping Rusty calm.”

Davis-Clem beat the odds, living more than 35 year with HIV -- a virus that kills most people within eight to 10 years if left untreated.

Over the past four decades, scientists have made leaps and bounds in HIV treatment and prevention. It’s a history of how far medicine has come but also of society’s sins in those years.

“As someone who cares for people with HIV and runs an HIV prevention clinic, I’m here to tell you that there’s no ‘them,’” said Dr. Adam Spivak, who works at the University of Utah’s infectious disease clinic. “There’s only ‘us.’”

Over the years, doctors have found ways beyond condoms to prevent the spread of HIV. In fact, the medication for HIV is now so effective that it can suppress the virus to where it is undetectable in a blood test. When HIV is undetectable, it can’t be transmitted to another person.

The science has evolved to the point that eradicating the virus may be possible.

“We’re on the cusp of an enormous sea change in HIV treatment,” Spivak said.

AIDS epidemic begins

In the early 1980s in the U.S., reports of people with “gay cancer” started to spread. It was a disease no one had seen before. People with the disease would lose weight rapidly, their lymph nodes would swell and discolored splotches called Kaposi sarcomas would appear on or under their skin.

The first reported cases of what is now known as AIDS, or acquired immunodeficiency syndrome, appeared in a Centers for Disease Control and Prevention report in June 1981. It wouldn’t receive the name AIDS until the next year. It would take two more years to discover HIV, the human immunodeficiency virus.

Since the beginning, HIV has been seen as a disease that affects primarily marginalized people -- gay men, people who used drugs, sex workers and poor people among others.

“Unfortunately, a lot of our societal racism and bigotry naturally found a home when there was a scary new disease that seemed to affect this population disproportionately,” Spivak said. “The disease doesn’t discriminate … but people do.”

More than half a million people in the U.S. died in the first 25 years of the disease. It affected people from all walks of life -- every race, gender, sexual orientation and income level -- but gay and bisexual men were among the hardest hit.

“I saw so many people die,” Kevin Packer, who also received his HIV diagnosis about 35 years ago, said. “There came a point after about six years of going to funerals that I just couldn’t go to funerals anymore.”

Packer -- who now works at the U. helping people connect with HIV treatment -- grew up in Utah to a family of members of The Church of Jesus Christ of Latter-day Saints. When he came out as gay in his early 20s, many of his family members didn’t accept him. He decided to move to California, where being gay was less taboo.

He believes he contracted HIV from a partner there, but he wasn’t diagnosed until he had moved back to Utah.

Each funeral he attended, Packer said, was like “looking in the mirror” to see his own mortality. He assumed he would die the same way his friends had.

(Francisco Kjolseth | The Salt Lake Tribune) Rusty Davis-Clem, front, who was diagnosed with HIV about 35 years ago, poses for a portrait with his husband Mark, one of their children DJ, left, and cousin Judi Brown on Friday, Nov. 26, 2021. "I've never done this alone," Davis-Clem said, referring to his family and friends who have supported him.

Davis-Clem had a similar story, though he grew up in southern California. At 15 years old, he was kicked out of his house. He decided, despite being bullied and abused, that he would be “the best gay” he could be.

He moved to San Francisco and became part of the city’s thriving gay community. But within that community, AIDS began to spread.

AIDS killed dozens of Davis-Clem’s friends, he said. Losing person after person in his life took a toll.

“I boarded myself off from people for a while, at least the gay community,” Davis-Clem said. “I was tired of friends dying.”

Medical innovations emerge

Shortly after his diagnosis, Davis-Clem was enrolled in a clinical trial for treatment at Stanford University. He didn’t know whether it would keep him alive, but he wanted to further the cause of medical knowledge to help others with HIV and AIDS live long lives.

“I figured, if I only had a certain amount of time left, I wanted to make sure they knew as much as they could,” Davis-Clem said.

The first treatment for AIDS -- AZT or azidothymidine -- had staggering side effects including intestinal problems, vomiting and damage to the immune system. Even then, the virus mutated to resist AZT, making it ineffective.

It wasn’t until 1995 -- nearly 15 years after AIDS was reported -- that doctors began successfully treating AIDS with a combination of drugs. In 1997, AIDS deaths fell by 45% compared to the previous year.

Treatments required dozens of pills a week -- sometimes dozens of pills a day -- for years, but now, treatments are a lot simpler.

“I take a pill every day, and I’m actually healthier now than I was before,” said Sequan Kolibas, who was diagnosed with HIV about eight years ago.

Many people with HIV are able to take just one pill per day. Some people may experience some nausea or other side effects, but there are a few pill options, so a doctor is likely able to find an alternative with no side effects.

“Now, people living with HIV live full, healthy lives and are largely unaffected by the presence of the virus in their bodies,” Dr. Spivak said.

Kolibas, who now runs a mobile testing clinic called Hope on TTAPP (testing, treatment and peer-led prevention), said one of the main messages she gives is that people who are diagnosed now aren’t facing imminent death.

“They think they’re going to have this big, huge life change,” Kolibas said, “and that’s not true.”

For people like Davis-Clem and Packer who have seen the ravages of AIDS and have lived through the fear of dying themselves, the medical advances brought a change of perspective.

“It was when my friends started getting treatment and my friends started getting better that things started changing in my life,” Davis-Clem said.

“It wasn’t until about nine years ago that I started believing that I was living with this disease instead of dying of the disease,” Packer said.

HIV still doesn’t have a cure, but with treatment, people can reduce the amount of the virus in their bodies to such a small amount that it is undetectable in tests. When there is so little of the virus in a body, it can’t be spread to other people.

People with HIV must stay on treatment though, as the virus can begin to replicate quickly without the medicines.

People with HIV can even be treated now with a once-per-month injection, Spivak said, and some pharmaceutical developers are looking at injections that could treat HIV for up to three months.

Even while being on treatment for HIV, both Davis-Clem and Packer still feel the effects of decades of the virus and the toxic treatments that helped them survive it. Packer said part of his brain is atrophying because of the virus, and Davis-Clem said his immune system is still affected making him more susceptible to other diseases, including COVID-19.

(Francisco Kjolseth | The Salt Lake Tribune) Rusty Davis-Clem, left, who was diagnosed with HIV about 35 years ago, is joined by his husband Mark, as they talk about their life on Friday, Nov. 26, 2021.

And while most people with HIV respond well to modern treatments, AIDS can still kill, as Davis-Clem knows better than most. His younger brother died about six years ago. That death shook him worse than others, prompting him to move with his husband and their children to Utah to get away from their memories in California.

Stigma remains

Even with decades of medical advances, much of the social stigma around HIV and AIDS has remained.

Within a few years, doctors and researchers already knew that HIV couldn’t be spread through casual contact, including touch or sharing drinks, but people still physically avoided people who had tested positive. Davis-Clem said some people still avoid him.

Kolibas, when she was diagnosed, had to overcome the ideas she had about HIV before coming to terms with it.

“It felt like a big part of my world was crumbling,” Kolibas said. “I felt tainted.”

She was ashamed of having HIV, Kolibas said. Because of that, she didn’t even tell her family about her diagnosis for the first five years.

Now, Kolibas runs Hope on TTAPP to diagnose people in marginalized and vulnerable communities, help them find treatment and talk with them about the reality of living with the virus and how to overcome the stigma.

“Instead of letting it drag me down and being ashamed of it, I’ve kind of turned it into my superpower to find people who were in the same spot that I used to be in,” Kolibas said.

Packer also helps people into treatment as a peer navigator with the U. He travels to different parts of the state to connect with people who have been diagnosed with HIV but are not currently in treatment. When HIV-positive people do not answer the phone calls from a clinic, Packer knocks on their doors.

The goal isn’t to shame them. Packer works with people with positive HIV diagnoses to help them understand the benefits of treatment and how to find a doctor.

As someone with HIV, Packer is able to connect with these people on a level that most doctors can’t. For many, he said, it’s the first time they’ve talked with another person with HIV.

“I think it gives them a lot more hope” talking to someone who has survived with AIDS, Packer said.

U=U the future of HIV treatment

While Packer is helping people into treatment, the real goal is ending the spread of AIDS. It’s a lofty goal, but Dr. Spivak of the infectious disease clinic said medicine is already able to prevent transmission.

“As far as preventing the disease, we’re there,” Spivak said. “We don’t need any more trials. We don’t really need any more treatments.”

Researchers in 2014 first reported that HIV-positive patients who are on treatment and have an undetectable load of the virus in their blood cannot transmit the virus to someone else.

This launched a campaign known as U=U, or undetectable equals untransmittable.

(Francisco Kjolseth | The Salt Lake Tribune) DJ Davis-Clem, 23, talks about her experience growing up with two dads and one of them being diagnosed with HIV about 35 years ago on Nov. 26, 2021. "From a young age, I had to learn what it was," she said, so she could help her dad if he was sick. She wants others to learn about the disease to prevent its spread.

“U=U is a game changer,” Davis-Clem said, “but only if we get the message out. Only if we get people into treatment.”

Along with condoms during sex, there are now other options to prevent the spread of HIV. Medications like PrEP, or pre-exposure prophylaxis, are up to 99% effective at blocking contraction of the virus in people who are not HIV-positive.

One barrier to eradicating HIV is the high cost of healthcare in the U.S., Spivak said. People from poorer and marginalized communities around the country are less able to seek treatment.

“The issue is really one of access and social justice, frankly,” Spivak said.

Ending AIDS globally will take an even more concerted effort, he said. About 65% of people around the world living with HIV don’t have access to adequate treatment.

The national conversations about HIV and AIDS have dropped off in the years since treatment proved to be effective.

“I think awareness is slipping away because we’re not dying in the numbers we used to,” Packer said. “I think it’s disappointing that it has to be a milestone before anybody talks about it.”

Those conversations and public awareness campaigns need to come back before HIV transmission stops. People need to know to be tested regularly for HIV and need to know how to find treatment if they do have it.

“This is not going to be solved until we all decide that it’s going to be solved,” Davis-Clem said.

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