The AIDS Crisis

The first cases of AIDS in the U.S. made headlines four decades ago. The fight against the disease provided lessons for combating future outbreaks like that of Covid-19.

Charles Tasnadi/AP Images

The memorial quilt honoring victims of AIDS. Half a million people came to see it at the National Mall in Washington, D.C., in October 1987, when it was first displayed.

Peter Staley’s life was going according to plan. It was 1985, and the 24-year-old was working as a bond trader on Wall Street in New York City. He dreamed of one day running for Congress, and later, maybe even the presidency.

But those plans came crashing down when Staley learned that he’d contracted H.I.V., the virus that causes AIDS. With no AIDS medications at the time, the diagnosis felt like a death sentence.

“I thought I had a few years,” says Staley, now 61.

He wasn’t alone. Four decades before the Covid-19 pandemic, the first cases of AIDS were officially reported in the U.S., in 1981. AIDS and H.I.V. would go on to wreak havoc—killing more than 270,000 people in the U.S. by 1988 and becoming, by 1992, the leading cause of death among Americans ages 25 to 44, according to the Centers for Disease Control and Prevention (C.D.C.).

With the odds stacked against him, Staley took action. He became one of the most prominent AIDS activists, helping to lead demonstrations that drew attention to the crisis and forced the federal government to ramp up its fight against the disease.

Peter Staley’s life was going according to plan. It was 1985, and the 24-year-old was working as a bond trader on Wall Street in New York City. He dreamed of one day running for Congress, and later, maybe even the presidency.

But those plans came crashing down when Staley learned that he’d contracted H.I.V., the virus that causes AIDS. With no AIDS medications at the time, the diagnosis felt like a death sentence.

“I thought I had a few years,” says Staley, now 61.

He wasn’t alone. Four decades before the Covid-19 pandemic, AIDS wreaked havoc. In 1981, the first cases of AIDS were officially reported in the United States. By 1988, more than 270,000 people in the U.S. had died from AIDS-related illnesses. By 1992, it was the leading cause of death among Americans ages 25 to 44, according to the Centers for Disease Control and Prevention (C.D.C.).

With the odds stacked against him, Staley took action. He became one of the most well-known AIDS activists. He helped lead demonstrations that drew attention to the crisis. These efforts forced the federal government to ramp up its fight against the disease.

Courtesy of Peter Staley

‘I thought I had a few years.’ —Peter Staley

Thanks to activists like Staley and to major advancements in H.I.V./AIDS treatment and prevention, the U.S.  made great strides in combating the illness. The number of new H.I.V. infections in the U.S. is down by nearly 75 percent from its height in 1984, according to the C.D.C.

“In part, this is a success story,” says Lindsey Dawson, associate director of H.I.V. policy at the Kaiser Family Foundation, a nonprofit focused on health care. “H.I.V. is no longer a death sentence, the treatments are highly effective, and you can live a long and healthy life.”

But when it comes to eradicating the disease for good—both nationally and globally—experts say we still have work to do.

Thanks to activists like Staley and to major advancements in H.I.V./AIDS treatment and prevention, the U.S. made great strides in combating the illness. The number of new H.I.V. infections in the U.S. is down by nearly 75 percent from its height in 1984, according to the C.D.C.

“In part, this is a success story,” says Lindsey Dawson, associate director of H.I.V. policy at the Kaiser Family Foundation, a nonprofit focused on health care. “H.I.V. is no longer a death sentence, the treatments are highly effective, and you can live a long and healthy life.”

But experts say that we still have work to do to wipe out the disease for good in the U.S. and across the globe.

Steve Ringman/San Francisco Chronicle via Getty Images

A patient sleeps in the AIDS ward at San Francisco General Hospital around 1983.

A Mysterious Disease

In total, since the AIDS epidemic began, about 84 million people worldwide have been infected with H.I.V., and more than 40 million people have died, according to the World Health Organization.

But in the U.S., the disease began quietly. In 1981, the C.D.C. reported that five young and otherwise healthy gay men in Los Angeles had developed a rare, life-threatening lung infection. Doctors elsewhere began seeing young patients succumb to illnesses that typically affected the elderly.

Scientists were baffled. It took more than a year for the C.D.C. to label the disease: acquired immunodeficiency syndrome (AIDS). And, in 1983, scientists finally confirmed that the human immunodeficiency virus (H.I.V.) was the cause.

Since the AIDS epidemic began, about 84 million people worldwide have been infected with H.I.V. in total. And more than 40 million people have died, according to the World Health Organization.

But in the U.S., the disease began quietly. In 1981, the C.D.C. reported that five young and otherwise healthy gay men in Los Angeles had developed a rare, life-threatening lung infection. Doctors elsewhere began seeing young patients suffer from illnesses that normally affected the elderly.

Scientists were stumped. It took more than a year for the C.D.C. to label the disease: acquired immunodeficiency syndrome (AIDS). And, in 1983, scientists finally confirmed that the human immunodeficiency virus (H.I.V.) was the cause.

Allan Tannenbaum/Getty Images

Demonstrations in New York City, 1994

H.I.V., a virus that attacks the immune system, is passed through body fluids, including blood, semen, and breast milk (but not saliva). AIDS is the most advanced stage of H.I.V. infection—when a person’s immune system is so weak that it can’t fend off infections and diseases.

In 1999, scientists determined that H.I.V. had likely passed from chimpanzees to humans who were hunting in Central Africa, and the virus had probably been in the U.S. since at least the 1970s. But by the time they learned all this, the disease was already spreading quickly.

“People were living in communities where going to funerals for young, otherwise healthy people was a regular part of their lives,” Dawson says.

H.I.V. is a virus that attacks the immune system. It is passed through body fluids, including blood, semen, and breast milk (but not saliva). AIDS is the most advanced stage of H.I.V. infection. During this stage, a person’s immune system is so weak that it can’t fend off infections and diseases.

In 1999, scientists determined that H.I.V. had likely passed from chimpanzees to humans who were hunting in Central Africa. They also said that the virus had probably been in the U.S. since at least the 1970s. But by the time they learned all this, the disease was already spreading quickly.

“People were living in communities where going to funerals for young, otherwise healthy people was a regular part of their lives,” Dawson says.

David Paul Morris/Bloomberg via Getty Images

A scientist analyzes AIDS patient antibody levels in 2011.  

Fear and Confusion

Early in the epidemic, fears and misconceptions abounded. Many people falsely believed they could acquire H.I.V. through casual contact, such as sharing a drink, kissing, and even shaking hands. Doctors routinely turned away patients with AIDS for fear of becoming infected themselves.

In 1984, a 13-year-old named Ryan White, who’d acquired AIDS through a blood transfusion, was barred from attending school in Kokomo, Indiana. He won the right to go to school in a legal battle that helped put a spotlight on the discrimination people with AIDS faced. Over time, attitudes also changed as celebrities such as actor Rock Hudson, musician Freddie Mercury, and basketball star Magic Johnson announced they had H.I.V. too.

One of the biggest misconceptions about AIDS was that it affected only gay men. In reality, the virus can affect all people, regardless of sexual orientation. Nevertheless, the federal government was slow to respond to the crisis. Critics charged officials with dragging their feet because of the stigmas associated with the LGBTQ* community.

Early in the epidemic, fears and misconceptions were widespread. Many people falsely believed they could get H.I.V. through casual contact, such as sharing a drink, kissing, and even shaking hands. Doctors routinely turned away patients with AIDS for fear of becoming infected themselves.

In 1984, a 13-year-old living with AIDS was barred from attending school in Kokomo, Indiana. His name was Ryan White, and he had gotten AIDS through a blood transfusion. He won the right to go to school in a legal battle. His case helped put a spotlight on the discrimination people with AIDS faced. Over time, attitudes also changed as celebrities announced they had H.I.V. too. Among them were actor Rock Hudson, musician Freddie Mercury, and basketball star Magic Johnson.

One of the biggest misconceptions about AIDS was that it affected only gay men. In reality, the virus can infect all people, no matter what their sexual orientation. Even so, the federal government was slow to respond to the crisis. Critics charged officials with dragging their feet because of the stigmas associated with the LGBTQ* community.

Demanding Action

Ted Soqui/Sygma via Getty Images (Magic Johnson); Keystone/Hulton Archive/Getty Images (Freddie Mercury)

Celebrities such as athlete Magic Johnson (top) and musician Freddie Mercury made their H.I.V. status public, raising awareness about AIDS.

 

 

In the absence of swift government action, some with H.I.V./AIDS took matters into their own hands. In March 1987, an activist group called the AIDS Coalition to Unleash Power (ACT UP) was formed in New York City. A few weeks later, Staley attended his first ACT UP meeting at an LGBTQ community center. He initially didn’t tell anyone at work about his illness—or that he was gay—for fear that he might be fired. He later quit his job on Wall Street to dedicate his time to AIDS activism.

“It filled me with the first hope I felt since I had been diagnosed,” Staley says. “[I had] the feeling that we were making history, that we were here to change the world.”

In 1987, the U.S. Food and Drug Administration (F.D.A.) approved A.Z.T., the first AIDS drug. Although it worked for a limited period, there were many side effects, and the drug was too expensive for many people to afford.

So, in 1988, Staley and other ACT UP activists shut down New York City streets in a protest for lower drug prices. Later that year, they demonstrated at the F.D.A. offices outside Washington, D.C., to protest the agency’s slow drug-approval policy. As hundreds of activists chanted “Get to work,” Staley scaled the awning of the building and unfurled a banner that read “SILENCE = DEATH.” The protest made national headlines, prompting the F.D.A. to speed up the release of new medicines.

AIDS activists held many more demonstrations. Staley and others routinely met with officials to help shape the government’s research on new drugs.

In the absence of swift government action, some with H.I.V./AIDS took matters into their own hands. In March 1987, an activist group called the AIDS Coalition to Unleash Power (ACT UP) was formed in New York City. A few weeks later, Staley attended his first ACT UP meeting at an LGBTQ community center. At first, he didn’t tell anyone at work about his illness or that he was gay. That’s because he feared that he might be fired. He later quit his job on Wall Street to dedicate his time to AIDS activism.

“It filled me with the first hope I felt since I had been diagnosed,” Staley says. “[I had] the feeling that we were making history, that we were here to change the world.”

In 1987, the U.S. Food and Drug Administration (F.D.A.) approved A.Z.T., the first AIDS drug. It worked for a limited period, but there were many side effects. The drug also cost too much for many people to afford it.

So, in 1988, Staley and other ACT UP activists shut down New York City streets in a protest for lower drug prices. Later that year, they demonstrated at the F.D.A. offices outside Washington, D.C., to protest the agency’s slow drug-approval policy. Hundreds of the activists who gathered for the protest chanted “Get to work.» Staley scaled the awning of the building and hung a banner that read “SILENCE = DEATH.” The protest made national headlines, leading the F.D.A. to speed up the release of new medicines.

AIDS activists held many more demonstrations. Staley and others routinely met with officials to help shape the government’s research on new drugs.

An Ongoing Battle

Patrick Aviolat/AP Images

A drug “cocktail” for an AIDS patient who took 35 pills daily, 1998

All the while, people were still dying of AIDS. Then, in the mid-’90s, researchers had a breakthrough. They discovered that giving patients a combination of medicines that attack the virus at different stages of its life cycle cause H.I.V. levels in the blood to drop. In 1996, doctors began prescribing these combos, commonly known as drug “cocktails.” The following year, AIDS-related deaths in the U.S. declined by nearly 50 percent.

The new treatment transformed H.I.V./AIDS from a death sentence to a chronic but manageable illness. Today, it’s so effective for people living with H.I.V. that it can make the virus undetectable, meaning it can’t be passed to others.

Scientists have also found that people at high risk of contracting H.I.V. can take these drugs as a preventive measure.

All the while, people were still dying of AIDS. Then, in the mid-’90s, researchers had a breakthrough. They found that giving patients a combination of medicines that attack the virus at different stages of its life cycle causes H.I.V. levels in the blood to drop. In 1996, doctors began prescribing these combos. They became commonly known as drug “cocktails.” The following year, AIDS-related deaths in the U.S. declined by nearly 50 percent.

The new treatment transformed H.I.V./AIDS from a death sentence to a chronic but manageable illness. Today, it’s so effective for people living with H.I.V. that it can make the virus undetectable. That means it can’t be passed to others.

Scientists have also found that people at high risk of contracting H.I.V. can take these drugs as a preventive measure.

Each year, 650,000 people worldwide die of the disease.

These advancements have brought us closer to ending the epidemic, but the fight isn’t over. Scientists are still searching for a cure and a vaccine. And each year, 650,000 people worldwide die of the disease. The situation is most dire in developing countries—especially in parts of Africa—which lack the resources to combat the virus.

Thanks to treatment, Staley’s viral load is now undetectable. But he’s still working to combat AIDS. In 2018, he co-founded an organization dedicated to increasing access to H.I.V. medication.

These advancements have brought us closer to ending the epidemic, but the fight isn’t over. Scientists are still searching for a cure and a vaccine. And each year, 650,000 people worldwide die of the disease. The situation is most dire in developing countries, especially in parts of Africa. These parts of the world lack the resources to combat the virus.

Thanks to treatment, Staley’s viral load is now undetectable. But he’s still working to combat AIDS. In 2018, he co-founded an organization dedicated to increasing access to H.I.V. medication.

Brent Stirton/Getty Images

An AIDS patient in South Africa receives hospice care.

AIDS & Covid

Many experts see parallels between the AIDS epidemic and the Covid-19 pandemic. Officials have also been revisiting the AIDS crisis for lessons as they fight against other diseases, such as monkeypox, which was declared a health emergency in the U.S. in August.

For example, the AIDS crisis showed that pandemics don’t affect everyone equally. When it comes to Covid-19, the dangers have been higher for people with pre-existing conditions and for workers in service-industry jobs; and for people in poorer countries that lack the money and health-care systems to effectively fight it. That means officials need to find ways to get treatments and vaccines into the hands of vulnerable populations.

The AIDS epidemic also showed what happens when governments delay taking action on a disease as well as the dangers of stigmatizing an illness based on the communities of people most at risk.

But, Staley says, there’s a silver lining from the AIDS crisis: Activists were able to convince officials to shorten the time it takes to approve lifesaving drugs and vaccines. Years later, that helped lead to the swift creation of Covid-19 vaccines.

“There was a much faster scientific response” to Covid, Staley says, “because [officials] learned from the AIDS activists that they could dramatically speed stuff up.”

Many experts see parallels between the AIDS epidemic and the Covid-19 pandemic. Officials have also been revisiting the AIDS crisis for lessons as they fight against other diseases. That includes monkeypox, which was declared a health emergency in the U.S. in August.

For example, the AIDS crisis showed that pandemics don’t affect everyone equally. When it comes to Covid-19, the dangers have been higher for people with pre-existing conditions and workers in service-industry jobs. People in poorer countries that lack the money and health-care systems to effectively fight it have also been hit hard. That means officials need to find ways to get treatments and vaccines into the hands of vulnerable populations.

The AIDS epidemic also showed what happens when governments delay taking action on a disease. Beyond that, it showed the dangers of stigmatizing an illness based on the communities of people most at risk.

But, Staley says, there’s a silver lining to the AIDS crisis. Activists were able to convince officials to shorten the time it takes to approve lifesaving drugs and vaccines. Years later, that helped lead to the swift creation of Covid-19 vaccines.

“There was a much faster scientific response” to Covid, Staley says, “because [officials] learned from the AIDS activists that they could dramatically speed stuff up.”

*At the time, it was known as the LGB community.

*At the time, it was known as the LGB community.

Deaths Worldwide From H.I.V./AIDS

Source: Our World In Data

Living With H.I.V.

The number of people living with H.I.V. in 2019

Jim McMahon

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