Steven remembers when surviving HIV meant simply enduring.

The medications keeping him alive often left him doubled over with nausea and chronic diarrhea. Pills had to be taken at precise times, sometimes on an empty stomach, sometimes with food. Switching to a new drug carried its own risk because if it failed, there might not be another option. 

"The side effects were horrible," said Steven, who tested positive in 1985 and did not want to use his last name. "But back in those days, that was all there was."

Three decades ago, the introduction of Highly Active Antiretroviral Therapy, or HAART, fundamentally changed the course of the HIV epidemic. For the first time, combination drug therapy could suppress the virus instead of simply slowing it down, transforming HIV from what was widely considered a death sentence into a manageable chronic disease. 

But as long-term survivors mark the anniversary this year, they say the breakthrough didn't erase the trauma overnight. The first generation of lifesaving medications was often grueling, and the memories of those years remain vivid.

Michael Rajner, a longtime survivor and activist, recalls sleeping in the bathroom because the medications left him so nauseated that he needed to stay close to the toilet.

"I just got so exhausted," he said. "I slept on the bathroom rug."

Steven considers himself one of the lucky ones. While he remained largely asymptomatic, his partner's health deteriorated despite taking AZT after it became available. He died in 1993, just three years before HAART revolutionized HIV treatment. Like many long-term survivors, Steven said those losses never truly fade.

"Prior to the arrival of HAART, an HIV/AIDS diagnosis was often considered a death sentence, leaving many patients simply waiting to die," said Ken Rapkin of the Campbell Foundation, a Fort Lauderdale-based nonprofit that has funded HIV/AIDS research, prevention, care and LGBTQ health initiatives for more than three decades. 

"The crisis deeply affected healthcare providers as well, who frequently lost young, previously healthy patients,” Rapkin added. 

The first cases of what would later become known as AIDS were reported by the Centers for Disease Control and Prevention in 1981 after doctors identified clusters of rare infections and cancers among previously healthy gay men. Scientists identified the virus responsible, HIV, in 1983, but treatment options remained virtually nonexistent. The first HIV drug, AZT, was approved in 1987, offering hope but only temporarily slowing the virus while causing significant side effects. Other medications followed, but HIV often developed resistance, leaving many patients with few options.

As the epidemic spread, tens of thousands of Americans died while fear and misinformation fueled widespread stigma. 

For many long-term survivors, living through the epidemic carried its own emotional burden. Rapkin said some struggle with survivor guilt after outliving partners, friends and entire support networks, even as modern treatment allows them to thrive. The question of why they survived when so many others did not can linger for decades.

Many people living with HIV faced discrimination from employers, healthcare providers, family members and even friends, while much of the LGBTQ community endured an almost constant cycle of illness, funerals and grief.

Mark S. King, who tested positive on March 15, 1985, noted: "Before HAART, we were tragic figures."

King said many people viewed those living with HIV primarily through pity or fear because few expected them to survive.

For years, doctors had tried fighting HIV with one drug at a time. AZT slowed the virus, but HIV often adapted, becoming resistant and leaving many patients with dwindling treatment options. That began to change in late 1995 with the approval of the first protease inhibitor. 

Protease inhibitors blocked HIV from making mature copies of itself, allowing doctors to combine medications that attacked the virus from multiple angles for the first time.

Over the following months, physicians combined the new drugs with existing medications into what became known as Highly Active Antiretroviral Therapy, or HAART.

The breakthrough reached a global audience in July 1996 at the International AIDS Conference in Vancouver, where researchers unveiled dramatic results showing the new combination therapies could suppress HIV to previously unimaginable levels. Patients once expected to die were regaining weight, leaving hospitals and returning to work. 

For many attending the conference, it was clear the epidemic had entered a new era.

"Combination therapy was really bringing people off their deathbeds and back to life," said Jeff Berry, founder of The Reunion Project, a national organization for long-term HIV survivors. "It was giving people another chance at life."

Yet for many people living with HIV, years of false starts and disappointing treatments had made optimism difficult.

"Hope felt like a scam," King recalled. “We didn’t want to get hurt again.”

That skepticism faded as the results became impossible to ignore. 

"People literally got out of bed," King said. "They called it the Lazarus Syndrome."

Two years later, the impact would be seen outside hospitals as well. In August 1998 the Bay Area Reporter published a story titled "No Obits." For the first time since the AIDS epidemic began, the newspaper had not received a single obituary for someone who had died of the virus. After years of writing about the epidemic's devastating toll, the absence of obituaries became the headline. 

“...after years of relentless obituaries of people stolen by the virus, none were submitted to the B.A.R. that week,”  Timothy Rodrigues wrote in 2018 marking the 20th anniversary of that story. “I was honored to write ‘No obits’ and see it have such a hopeful impact on so many - a powerful example of community journalism that the B.A.R. continues.” 

HAART gave people living with HIV a new lease on life but it wasn’t all sunshine and rainbows – survivors now had to contend with a new type of stigma as they rebuilt their lives. 

"We wanted to rejoin the social and sexual community,” King recalled. “And all hell broke loose."

King, who has chronicled life with HIV for years through his award-winning blog My Fabulous Disease, said surviving the epidemic changed not only medicine but also how society viewed people living with the virus.

After HAART, society had to figure out how to treat people who weren't dying anymore – those living with HIV had to navigate dating, rejection, disclosure, criminalization and labels like clean and positive. 

Today, HIV treatment bears little resemblance to the complicated regimens that defined the early years of HAART. Many people living with HIV now take a single pill each day, while others have the option of long-acting injectable medications administered every one to two months.

The advances that followed HAART also led to PrEP, a medication that prevents HIV infection and has become one of the most powerful tools in reducing new HIV transmissions.

Even after HAART began changing the course of the epidemic, the fear surrounding an HIV diagnosis remained. When Frank Williams tested positive in 2000, he said a doctor bluntly told him to "get your affairs in order."

Williams said his doctor eventually switched him from an older regimen because of concerns about long-term kidney and bone health — another example of how HIV treatment has continued to evolve over the past three decades.

"I'm one of those old-school people that believes if it ain't broke, don't fix it," Williams said of why he has no plans to switch to an injectable regimen. "My results are excellent with where I'm at."

Thirty years after HAART gave people with HIV the chance to grow old, many long-term survivors are now navigating a new set of physical challenges that come with aging with the virus.

But even the most effective medications only work if people can access them.

Michael Rajner knows firsthand what those medications made possible. He has spent decades fighting to ensure others don't lose access to the drugs that saved his life.

As a longtime HIV activist, he played a leading role this year in Florida's successful effort earlier this year to reverse proposed changes to the state's AIDS Drug Assistance Program (ADAP), which provides HIV medications to low-income Floridians.

But many activists were still holding their breath until it was clear the governor would not veto the ADAP line item in next year’s budget. 

​​Rajner, who tested positive in 1996 just months before HAART changed the trajectory of the epidemic, worries that younger generations who never witnessed the epidemic's deadliest years may not appreciate how quickly progress can be reversed.

For many long-term survivors, the anniversary is bittersweet. They celebrate the extraordinary advances that have turned HIV into a manageable condition for millions while remembering friends, partners and loved ones who never lived long enough to benefit.

Thirty years later, King says no image better captures that transformation than the pill organizer sitting in his home.

"If you ever see me filling a pill box, shoot me," he recalled thinking in the early years of the epidemic, "because it meant you were going to die."

Today, he fills it for a very different reason.

"Now filling that pill box means I'm going to live."