HIV/AIDS Survivors Look Back at a 40 Year Journey

June 2021 marks 40 years since the Centers for Disease Control and Prevention (CDC) first reported five cases of what later became known as AIDS. Since then, the HIV/AIDS pandemic has taken more than 32 million lives globally. More than 38 million people currently live with HIV.

Experts say we’ve come a long way with prevention and treatment. But there's still more work to do when it comes to creating equity and fighting disinformation.

"We have an arsenal of effective medication. We have testing," Jonathan Blake, who has been living with HIV in the UK since 1982, tells Verywell. "But there is still this thing of stigma that stops people. Because, you know, what happens if I get a positive diagnosis. Am I going to be shunned by my community?"

Timeline of HIV/AIDS in the 1980s

Although HIV originated before the 1980s, 1981 is the year that will forever be marked as the start of the HIV/AIDS crisis. In 1981, five young, previously healthy gay men in Los Angeles had presented with Pneumocystis carinii pneumonia (PCP), a rare lung infection. Meanwhile, men in New York and California were being diagnosed with an aggressive cancer called Kaposi sarcoma.

Not until September of 1982, after 593 cases of severe immune deficiency in men had been reported, and 41% of them had died, did the CDC use the term AIDS, or acquired immune deficiency syndrome. But still, researchers weren’t sure of the cause.

“One, we didn’t know what it was,” Carl Schmid, MBA, executive director of the HIV+Hepatitis Policy Institute, tells Verywell. “Two, we didn’t know how to detect it. And so people were just dying and there was no treatment.” 

The first HIV antibody test was developed in 1985 to screen blood products—not to test people for the virus. And despite AIDS having been on the scene since 1981 and taking lives at a rapid pace, President Ronald Reagan did not make his first public speech about AIDS until 1987.

From 1981 through 1990, the U.S. alone marked a grim milestone of 100,000 AIDS deaths, with a disproportionate number of men ages 25 to 44 affected. But AIDS was also becoming a leading cause of death among women in this age range too, according to the CDC.

Receiving a Diagnosis in the 1980s

Jonathan Blake

Blake, now in his early 70s, became symptomatic around September of 1982. "Every single lymph node in my body just kind of started erupting, getting bigger and bigger, and I could no longer work," he says. He worked out the timeline and is relatively certain he contracted HIV while visiting a bathhouse in San Francisco on a trip to the U.S. in early 1981.

After a stay in the hospital and a biopsy, he received a diagnosis. "They told me it was a virus and that there was no cure for it," he recalls. "And I basically got six months to live." Healthcare providers told him he’d receive palliative care.

Later, after retesting Blake’s blood sample, his doctor informed him he had HTLV-III. HIV did not become the official name for the virus that causes AIDS until 1986.

"I was the first person diagnosed at the Middlesex Hospital with this particular virus," Blake says. "I was in shock. I was kind of numb. And I basically kind of closed down."

Blake says he hid out in his flat and began making a plan to take his own life at age 33. "And then of course the voice of my mother came in my head," he says. "And she said, 'Jonathan, you clean up your own mess. You don’t leave it for others.' And then it was a question of, 'Well I can’t kill myself. I better go on and live. But how on earth are you going to do that?'"

So he got himself together, Blake says, and went to a demonstration. It was there that he met his partner, Nigel Young, whom he’s still with today. 

Ed Gallagher

Ed Gallagher was diagnosed in 1985 at age 35. "I was told that I was going to die really soon," he tells Verywell. "Faced with that, I donated pretty much all of my money to various AIDS research causes. Nobody knew what was going on. There were all kinds of studies, proposals, and research—some pretty bogus—into what would work and what wouldn’t.”

Gallagher, who, like Blake, is also in his early 70s now, distinctly remembers the great sense of loss during that time. "Everybody I knew died," he says, "and there was no support system at all. A lot of people died lonely and abandoned."

First Attempts at Treatment

In 1987, the Food and Drug Administration (FDA) approved the first antiretroviral drug. Zidovudine, also called azidothymidine (AZT), was a failed potential anti-cancer drug. And Schmid says it wasn’t very effective—some people with HIV became resistant to it. 

Prior to the drug’s approval, Blake says he was offered the chance to be part of a clinical trial where some study participants would receive AZT and others would not. He declined. 

"That basically saved me," he says. "What the old chemotherapy drugs used to do was that they wiped out your entire immune system, wiping out the cancer, but wiping out everything. So you had nothing to fight with."

AZT has a controversial history in the fight against HIV for its serious adverse effects. But it also accelerated development and advancements in antiretroviral therapy (ART).

Latest Strategies to Treat HIV

T-cells, a type of white blood cell that fight bacteria and viruses, are measured by something called CD4 counts. HIV causes the number of working T-cells in the body to drop. Near the end of the decade, Blake’s CD4 cell count fell below 200, and he was diagnosed with AIDS.

Blake’s primary care provider placed him on Septrin, an antibiotic, to reduce the risk of PCP, an infection that can be fatal for people with HIV/AIDS. His physician also added acyclovir, an antiviral medication to help prevent shingles, something Blake kept developing. 

That was his regimen for the next six years, until his health tanked again. "By 1996, there was quite an arsenal of medication," he says. So he started what’s now called combination antiretroviral therapy (cART), which uses several different types of medications in tandem to disrupt the virus’s replication cycle. This ideally brings the viral load down to undetectable levels.

"Treatment is not only good for the person if they have access to it, but it is also good for society, because once you’re virally suppressed you cannot transmit the virus to anyone else," Schmid says.

Advancements in cART have helped people with HIV live longer and even have a relatively normal life, Schmid explains. "It’s a remarkable success story," he says. But he also acknowledges that it’s not perfect. Patients can still experience drug resistance, reactions, or side effects. 

Gallagher, who also took cART when it became available, needed relief from pain and other side effects. 

"If it wasn’t for compassionate cannabis programs, and especially Sweetleaf Joe, I’d be insane," says Gallagher, who is now blind as a result of HIV, and is battling cancer. Starting in 1996, the Sweetleaf Collective, founded by Joe Airone, began providing free medical cannabis to HIV/AIDS patients in the San Francisco area. Gallagher has used the program ever since.

Before cART, people with HIV had to manage several medications on a rigorous schedule. 

"Now we’re at that point where we have a once-a-month injection that people can take," Schmid says. "And we’re looking at expanding that to once every two months on injection. And there’s going to be other long-acting oral regimens, as well, that could help people."

Treatment and Prevention Go Hand in Hand

People without HIV can also take cART as a preventative. HIV pre-exposure prophylaxis (PrEP) is cART that can reduce a person’s risk of contracting HIV by 99%. "There’s also zero cost-sharing for people who are insured," Schmid adds.

Right now PrEP is a once-a-day pill, and Schmid says that can be a barrier for some people to take it. But he adds that, on the horizon, PrEP options could become a once-a-month dose or even a once-a-year implant.

"That’s why we say we can end HIV," Schmid explains. Prevention is one of the biggest pillars. "Through condoms, yeah," he says. "Through syringe services, clean needles. But also through PrEP."

Health Inequities Stand in the Way

Although we seemingly have the tools to end HIV in the not-so-distant future, barriers still exist and make that goal a challenge. One disparity involves access to and education about PrEP. 

For example, in 2016, white men who have sex with men were six times more likely to use PrEP than Black people of any gender. In 2018, 42% of all new HIV diagnoses were among Black people, according to the CDC.

"People have to know about it," Schmid says. We need cultural competence among healthcare providers, he explains. Providers should be comfortable talking about various kinds of sex, and talking about it with patients of all genders, sexual orientations, and races.

Barriers to treatment access also exist when patients don’t have insurance, often because of a lack of Medicaid expansion in some states. "That’s why we do have these discretionary funded programs, like the Ryan White Program, that not only provide medical care and drugs, but also provide social support services," Schmid says.

Stigma, Bias, and Misconceptions 

After 40 years in the fight against HIV, Schmid, Gallagher, and Blake say we’ve failed to remove one of the biggest barriers to treatment, testing, and prevention.

"A lot has changed with the advances of medications and things like that," Schmid says, "but the one thing that hasn’t changed is the stigma."

Gallagher, now in his 70s, remembers the stigma of the 1980s. "Everyone freaked out during the early days because nobody wanted to catch it, and nobody knew how to get it," he says. 

Blake recalls the misinformation about transmission and coming to a hurtful realization. "I had a dear friend, who amazingly is still a friend," he says. "But whenever I would go round to eat with her, she kept a special set of cutlery that only I ever used."

Some still hold on to these misconceptions and stigmatize those who are HIV positive today, with fears and judgements often rooted in a person's sexuality or lifestyle habits. “It’s nonsense,” Blake says. “It’s a virus. It can affect anybody.”

Looking Ahead

Looking beyond 40 years, Schmid says immediate goals are to get more people who have HIV in treatment so they can achieve viral suppression, and to increase the number of people who are at risk for HIV to use PrEP. "Therefore we could decrease the number of new diagnoses," he explains.

But HIV researchers continue to aim for a vaccine, as well. One of the reasons scientists were able to move so quickly on a COVID-19 vaccine was because of all the research focused on HIV over the past several decades.

So why don't we have a vaccine for HIV? "HIV replicates a lot faster than COVID," Schmid explains, "and that’s been one of the problems with getting a vaccine."

But he thinks the tables have now turned. COVID-19 research is driving new research frontiers for HIV. "It’s been 40 years," he says. "It’s been too long. We need to end it."