Zidovudine and How Patient Advocacy Changed HIV Treatment

When zidovudine first hit the market in 1987, it wasn’t just a new drug-it was the only thing standing between many people with HIV and death. But here’s the truth: zidovudine didn’t save lives because it was perfect. It saved lives because patients refused to let it be the only option.

The first drug that gave people hope

Zidovudine, also known as AZT, was the first antiretroviral approved by the FDA to treat HIV. Developed by Burroughs Wellcome (now GlaxoSmithKline), it worked by blocking reverse transcriptase, an enzyme HIV needs to copy itself. In early clinical trials, it showed a small but real drop in viral load and a slight increase in survival time. For people facing a death sentence, even a few extra months felt like a miracle.

But the reality was messier. Zidovudine came with brutal side effects-severe anemia, nausea, muscle weakness, and fatigue. Many patients couldn’t tolerate the doses. And because it was the only drug available, doctors had no choice but to prescribe it, even when patients were suffering.

At the time, the medical establishment treated HIV like a public health crisis to be managed from above. Patients were passive recipients of care. But that changed fast.

Activists didn’t wait for permission

In New York, San Francisco, and Washington D.C., people with HIV-many of them gay men, drug users, and sex workers-started organizing. Groups like ACT UP (AIDS Coalition to Unleash Power) didn’t ask for a seat at the table. They stormed the FDA, chained themselves to the White House gates, and interrupted press conferences.

They knew zidovudine wasn’t enough. They knew the drug was priced at $10,000 a year-more than most people earned. They knew the FDA’s approval process was slow, designed for cancer drugs, not a rapidly spreading epidemic. So they demanded faster trials, lower prices, and access to experimental drugs before they were fully approved.

In 1988, ACT UP staged a protest at the FDA’s headquarters. Hundreds showed up. One woman, a nurse with HIV, stood up during a meeting and said, “You’re killing us with your bureaucracy.” The room went silent. A week later, the FDA changed its rules to allow expanded access to unapproved drugs for people with life-threatening conditions.

Zidovudine didn’t become better because scientists improved it. It became more accessible because patients forced the system to listen.

How patient voices reshaped drug development

Before zidovudine, clinical trials were run by doctors for doctors. Patients weren’t consulted about side effects, dosing schedules, or what outcomes mattered most. Was it just about living longer? Or was it about being able to eat, work, or hold your child without vomiting?

Activists pushed for patient-centered outcomes. They demanded that trials measure quality of life, not just survival. They insisted that people with HIV be included in designing trials-not just as subjects, but as advisors.

By the early 1990s, the FDA began including patient advocates on advisory panels. Drug companies started partnering with advocacy groups to design more humane trials. Zidovudine became the first drug where patient feedback directly influenced how it was prescribed.

One woman in Atlanta, diagnosed with HIV in 1989, told her doctor she couldn’t take the full dose because she was a single mother and needed to be awake to care for her kids. Her doctor, moved by her honesty, started titrating doses based on tolerance-not just lab numbers. That kind of individualized care became standard because patients spoke up.

Zidovudine’s legacy isn’t just in the pill

Zidovudine is rarely used alone today. Modern HIV treatment combines three or more drugs-called combination antiretroviral therapy (cART)-to suppress the virus and prevent resistance. Zidovudine is now mostly found in fixed-dose combinations like Combivir or Trizivir, and even then, it’s often replaced by newer, safer drugs like tenofovir or emtricitabine.

But its real legacy isn’t in the pharmacy. It’s in the way we think about medicine.

Before zidovudine, patients were expected to trust doctors without question. After zidovudine, patients learned they had the right to challenge, to demand, to co-create care. The model of top-down medical authority cracked open-and it never closed again.

Today, when someone with HIV asks for a second opinion, when they join a clinical trial to test a new drug, when they speak at a drug company’s patient advisory board-they’re following a path paved by the people who refused to accept silence.

What zidovudine teaches us about power in healthcare

Drug companies don’t lower prices because they’re nice. Regulators don’t speed up approvals because they’re efficient. Change happens when people organize.

The fight over zidovudine wasn’t just about one drug. It was about who gets to decide what’s acceptable in medicine. Was it okay to let people die slowly because the system moved too slowly? Was it okay to charge $10,000 for a pill that kept you alive for a year?

Activists said no. And they won.

Today, we have dozens of HIV drugs. We have PrEP to prevent infection. We have treatments that let people live long, healthy lives. But none of that would have come as fast-or as fairly-if patients hadn’t forced the system to change.

Zidovudine was the spark. Patient advocacy was the flame.

Why this still matters today

Look at the cost of modern HIV drugs. Even with insurance, co-pays can hit $500 a month. In rural areas, people still skip doses because they can’t afford transportation to clinics. Transgender patients face discrimination when seeking care. Black and Latino communities still have higher rates of late diagnosis.

The same power imbalances that existed in 1987 still exist today. But so does the playbook.

Patients are still organizing. Groups like the AIDS Foundation, the National Alliance of State and Territorial AIDS Directors, and local peer networks are pushing for generic drugs, better insurance coverage, and culturally competent care.

Every time someone speaks up at a hospital meeting, signs a petition for drug pricing reform, or shares their story with a lawmaker-they’re continuing the work started by those who demanded zidovudine.

You don’t need to be a scientist to change medicine. You just need to refuse to stay quiet.