What Makes a Health Crisis?

In the early 1900s, a version of the virus that would become known as the human immunodeficiency virus (HIV) was transferred from chimpanzees to humans through the food supply somewhere near the Congo River. It traveled across the then Belgian Congo to Europe and eventually found its way to the United States around 1969. Exactly how many people were infected with or died because of HIV before then is unknown. No definitive health record–keeping infrastructure existed in many African countries, and other health issues masked its spread. HIV’s long incubation period means the virus can spend more than fifteen years attacking a person’s immune system before progressing into its final and most severe stage: AIDS. Even in the United States, AIDS only surfaced more than a decade after its arrival, to be first detected among the gay populations in California and New York in 1981.

An early 1900s photo taken near the Congo River, where HIV originated.

American Museum of Natural History via Flickr

A microscopic image of a lung with pneumocystis pneumonia, the innocuous illness that became fatal in patients with HIV and alerted the CDC to the existence of AIDS.

Wellcome Collection under CC0

Five Men Die of a Simple Infection

The Centers for Disease Control (CDC) received a report that five otherwise healthy gay men in Los Angeles had suddenly come down with pneumocystis pneumonia, an infection that any healthy person’s immune system should be able to easily fight off. Within days, the CDC was flooded with similar cases from all over the country. Because the first cases of the illness were documented in gay men in the United States, people called it GRID (gay-related immune deficiency), gay cancer, or the gay plague. This stigma assigned to AIDS and the gay community would make the spread of the illness even harder to stop for decades to come.

A CDC poster from the 1980s warning of the risk of AIDS transmission from injection drug use involving dirty needles.

CDC via U.S. National Library of Medicine

It’s Called AIDS

The CDC used the name AIDS (acquired immune deficiency syndrome) for the first time to describe the mysterious illness in 1982. Cases had been detected in homosexual people, people with hemophilia (a bleeding disorder), Haitians, and heroin users, leading the public to derisively refer to these communities as the 4-H Club. Health officials also recorded symptoms now believed to be associated with AIDS in patients in Uganda; at the time, no one on either side of the ocean made the connection. It would take until 1986 for even the cause of AIDS, the retrovirus HIV, to be confirmed and named.

A batch of collected blood in 1985, after a test for HIV antibodies finally became available.

Antonin Cermak/Fairfax Media via Getty Images

The Blood Supply Is Infected

Scientists were still unsure of exactly how easily HIV was transmitted, but the CDC was fairly certain that it traveled by blood. (Today, we know that certain activities where bodily fluids are exchanged raise a person’s risk of contracting HIV.) As recipients of blood transfusions, such as people with hemophilia, started to rapidly fall ill, the CDC workers met their counterparts at blood banks to urge them to screen the entire blood supply. No test was available for AIDS specifically, but an existing test for Hepatitis B proved to be a good substitute. If the blood tested positive for Hepatitis B, 88 percent of the time its donor also had AIDS. Wary of the cost of administering so many tests and demanding more evidence of contamination, the blood banks refused. As a result, almost half of the ten thousand people with hemophilia living in the United States contracted AIDS. Four thousand would later die.

Demonstrators protest near City Hall in New York as a City Council committee considered legislation to bar pupils and teachers with the AIDS virus from public schools on November 15, 1985.

Rick Maiman/AP

People With AIDS Adopt the Denver Principles

At the National Lesbian and Gay Health Conference in Denver, Colorado, the National Association of People with AIDS (NAPWA) was founded. In an unprecedented move for patient rights, the association adopted the Denver Principles articulating the rights of people with AIDS. These principles included the rights “to privacy, to confidentiality of medical records, to human respect”—language that paved the way for many of the legal rights all patients have today. These weren’t just medical rights. At a time when people with AIDS were stigmatized and marginalized, the Denver Principles affirmed their humanity. Years later, the Denver Principles would inspire South African activists to form their own NAPWA, which would become instrumental in the fight against AIDS in their own country.

From left, scientists Luc Montagnier and Robert Gallo shake hands after a news conference in Oviedo, Spain, on October 26, 2000. Montagnier and Gallo are credited for identifying the HIV virus.

Reuters

The Retrovirus Causing AIDS Is Isolated

Dr. Robert Gallo and his team of researchers from the National Institutes of Health published a report claiming that they had isolated the retrovirus that causes AIDS, a year after Institut Pasteur of France made the same claim. Both teams believed their virus was the cause of AIDS. Only in 1986 would scientists discover that both viruses were, in fact, the same entity and name it the human immunodeficiency virus (HIV). A public (and at times, vitriolic) patent fight over who discovered the retrovirus first quickly ensued between U.S. and French labs, giving many people with AIDS the impression that the scientific community was more interested in claiming credit than finding effective treatment.

Ryan White's face and signature from a 1980s Indiana State Board of Health poster promoting AIDS hotlines.

U.S. National Library of Medicine

Ryan White Is Diagnosed With AIDS

A 12-year-old boy named Ryan White was diagnosed with AIDS, transmitted via contaminated blood products. A year later, White was denied entry to his school by the superintendent because parents complained he might infect their children. Many of these same parents pulled their children out of school when a court finally ordered that White be allowed back. Ryan and his mother would go on to become national advocates for people with AIDS. Although the media called him an innocent victim, he forcefully rejected that language and the implication that other people with AIDS were somehow guilty.

The AIDS Memorial Quilt, which commemorates people who have died of HIV/AIDS-related causes, on display at the National Mall in Washington D.C., on October 11, 1987.

Courtesy of Lambda Archives of San Diego

Thousands Are Dying

By the end of 1984, 11,152 AIDS cases had been reported in the United States, and 762 cases had been reported in Europe. But the disease was not limited to these areas. AIDS was also traveling across Africa. Later research revealed that in 1984 nearly two million people in Africa were living with HIV, and by 1990, over one million people there had died of AIDS.

A Response Stirs

The American actor Rock Hudson died from AIDS in 1985. Until then, President Ronald Reagan had never uttered the word AIDS in public, and his press secretary had responded to questions about AIDS with jokes about homosexuality. But Hudson’s death gave AIDS a familiar face. His popularity, coupled with the prolonged efforts of activists, spurred the United States to start taking steps to address the issue domestically. In 1985, the U.S. Congress allocated $70 million to AIDS research. This move came four years after researchers at the Centers for Disease Control (CDC) had proposed allocating $40 million to head off the virus early on but were given less than $1 million.

Congresswoman Nancy Pelosi and actress Elizabeth Taylor—both early, high-profile voices in the call for AIDS intervention—testify on HIV/AIDS funding before the House Budget Committee on March 6, 1990.

Office of Speaker of the House Nancy Pelosi via Flickr under CC BY 2.0

An early poster from the Ugandan Ministry of Health advertising safer sex practices, 1993.

STD/AIDS Control Programme of the Ministry of Health of Uganda via Wellcome Collection under CC BY-NC 4.0

Uganda Starts an AIDS Control Program

With the help of the World Health Organization, Uganda became the first African country to start an AIDS control program, but it was the exception on the continent. Studies found alarming rates of infection in the Democratic Republic of Congo, but European researchers were focused primarily on showing that AIDS came from Africa, not on treating it or diagnosing it in Africans. The stigma around AIDS and homosexuality made African governments and even scientists resistant to counting the number of people affected, fearing the association with homosexuality would make tourism decline. Uganda’s destigmatizing and educational approach made it one of the first countries to be successful at turning back the epidemic. While rates of HIV prevalence were rising across the continent, the rate in Uganda began declining in 1992.

Jeanie Newcomb tests donated blood for AIDS antibodies at the Belle Bonfis Blood Bank in Denver, Colorado, on July 30, 1986.

Bettmann Archive via Getty Images

Blood Banks Start Testing the Blood Supply

After the virus that caused AIDS was named, a test for HIV was approved by the U.S. Food and Drug Administration. Three years after their initial refusal, the American Association of Blood Banks and the Red Cross finally began screening the country’s blood supply for HIV antibodies and rejecting gay donors, a policy that still informs who is eligible to give blood today.

An ACT-UP poster for the SILENCE = DEATH campaign, 1987.

ACT-UP, The AIDS Coalition To Unleash Power via Wellcome Collection under CC BY-NC 4.0

First Antiretroviral Treatment Is Approved by the FDA

Azidothymidine (AZT) became the first anti-HIV drug approved by the U.S. Food and Drug Administration (FDA). While the development of AZT was groundbreaking, it needed to be taken at exact times around the clock, including in the middle of the night. This limited its effectiveness in countries where alarm clocks weren’t a daily part of life. AZT also cost about $9,000 a year—more than $21,000 when adjusted for inflation. But perhaps most important, AZT didn’t even guarantee survival—it could only delay the progression of AIDS.

Protesters participate in a "die-in" at the National Institutes of Health campus during the "Storm the NIH" protest in Bethesda, Maryland on May 21, 1990. The protesters blew whistles and sounded horns every twelve minutes to symbolize the death rate of AIDS victims at the time: one AIDS-related death every twelve minutes in the United States.

Bill and Ernie Branson/National Institutes of Health via Flickr

Activists Break Through Into the Mainstream

The AIDS advocacy group AIDS Coalition to Unleash Power (ACT UP) was formed; it would become one of the most prominent activist groups for people with AIDS (PWAs). ACT UP used drastic tactics to bring attention to the AIDS crisis, such as shutting down the Food and Drug Administration for an entire day in 1988. In 1990, 1,200 ACT UP protesters stood outside the National Institutes of Health to protest the use of placebos, the dearth of women and people of color in clinical trials, and other research practices they saw as unethical and against the interests of PWAs. Many of the PWA activists had become experts of their symptoms and shocked scientists with the extent of their medical knowledge.

AIDS activists prepare to hang an effigy of President Ronald Reagan at the headquarters of the Food and Drug Administration in Rockville, Maryland, on October 11, 1988.

Catherine McGann/Getty Images

Reagan Acknowledges Crisis in a Dedicated Speech

President Reagan made his first public speech about AIDS and established the Presidential Commission on HIV, which would later hear testimony from doctors, researchers, and activists. This was six years—and nearly twenty-five thousand deaths—after the start of the epidemic.

The World Works Together

After over a decade of decentralized and sporadic reactions, public and media attention finally started shifting from stigma to outrage. Ryan White died in 1990 at the age of eighteen. His funeral was attended by well-known individuals including Elton John and then First Lady Barbara Bush. Public health funding began to shift to address the epidemic, as well. The Gates Foundation, created by Bill and Melinda Gates, became a pivotal donor. In 1998, the Gates family allocated $5,000 in grants toward AIDS research. Two years later, they were allocating nearly $78 million.

A South African poster encouraging the equitable treatment of people with AIDS, ca. 1996.

Wellcome Collection under CC BY-NC 4.0

Sex workers wait for tests at a clinic in the Majengo slum on the outskirts of Nairobi, Kenya, on October 6, 1997.

Jean-Marc Bouju/AP

The Pandemic Peaks

Despite early progress with medications, the virus continued to spread. By 1994, AIDS was the leading cause of death for all Americans aged twenty-five to forty-four. And by 1999, sub-Saharan Africa became the epicenter of the global epidemic: HIV patients occupied 50 to 80 percent of the hospital beds in the region, and South Africa became the country with the highest absolute number of people living with HIV. While treatments continued to develop, their benefit was not shared equally across classes or continents.

From left, actress Elizabeth Taylor and Mathilde Krim, chair of the American Foundation for AIDS Research, pose at the United Nations in New York on December 2, 1996, before a World AIDS Day luncheon.

Jeff Christensen/Reuters

The Joint UN Program on HIV/AIDS Is Launched

After years of little to no international coordination, UNAIDS was launched to strengthen the way in which the United Nations was responding to the global AIDS epidemic, a significant step at a time when there was little international coordination on the issue. Although the United Nations had been responding to AIDS already, UNAIDS was a consolidation of that response.

A comparison of antiretroviral therapy for HIV infection in the 1990s and today.

National Institute of Allergy and Infectious Diseases via Flickr under CC BY 2.0

FDA Approves First Highly Active Antiretroviral Therapy for Use in the United States

This combination of three antiretroviral drugs not only stopped HIV from multiplying but also made it less likely to develop drug-resistant strains, which had been a large problem with AZT alone. However, the cost was still prohibitive for many patients, who could need up to $31,000  ($53,000 in today’s dollars) for the therapy.

AIDS activists protest outside the U.S. consulate in Cape Town, South Africa, on June 24, 2004.

Mike Hutchings/Reuters

U.S. Companies Block Cheaper Drugs in South Africa

Meanwhile, in sub-Saharan Africa, antiretroviral drugs remained out of reach. Multinational pharmaceutical companies that held patents on the medicine refused to lower their prices in South Africa, so the South African government passed a law allowing for the importation of the same drugs from countries where the price was lower. The same pharmaceutical companies—backed by the U.S. government—challenged the law in South African courts, which further delayed the process of getting the drugs to patients. The Treatment Action Committee, a group of South African activists inspired in part by the U.S.-based AIDS Coalition to Unleash Power (ACT UP), eventually succeeded in securing the availability of antiretroviral drugs in the public health-care system, which was used by most of the South African Black community at the time. The ferocious battle over these drug patents caused a media firestorm, finally catching the attention of the public, the World Trade Organization, and most important, major donors.

A red ribbon, a symbol of solidarity with people living with HIV/AIDS, is displayed on the façade of the UN Human Rights Office's headquarters in Geneva, Switzerland, on January 28, 2011.

Christine Wambaa/United Nations via Flickr under CC BY-NC-ND 2.0

United Nations Declares Commitment to the AIDS Fight

The UN General Assembly passed the 2001 UN political declaration on HIV/AIDS, which finally brought together countries to recognize the multifaceted AIDS crisis as “a paramount health, development, human rights and social challenge.” It also called for the establishment of a better funding mechanism and paved the way for other international bodies such as the World Trade Organization to set international guidelines on issues such as drug distribution. But this was only the beginning. No global data was available on how many people had AIDS, especially outside the West, and the health-care gap between people with AIDS in countries such as the United States and South Africa only seemed to be widening.

Irish singer Bono smiles during the launch of an initiative to help fund the Global Fund to Fight AIDS, Tuberculosis and Malaria at the World Economic Forum in Davos, Switzerland, on January 26, 2006.

Sebastian Derungs/Reuters

The Global Fund Starts

As governments around the world realized they needed to work together to effectively combat infectious disease, the Global Fund to Fight AIDS, Tuberculosis, and Malaria was established in Switzerland to properly gather and channel the funding these diseases required. The organization represented one of the first steps in professionalizing the response to HIV/AIDS. UN Secretary-General Kofi Annan, who had called for such a fund, made the first donation. The Group of Eight (G8) countries soon followed suit, as did Bill Gates personally. The Global Fund would soon grow to become the lead funding mechanism for AIDS research and change the face of public health.

A patient is nursed at a hospice partially funded by the President's Emergency Plan for AIDS Relief (PEPFAR) in White River Junction, South Africa, on December 15, 2008.

Denis Farrell/AP

PEPFAR Is launched

Twenty years after the virus first came into the public eye, President George W. Bush launched the President’s Emergency Plan for AIDS Relief (PEPFAR)—a coordinated effort between the president’s office and eight U.S. federal agencies. The program provided about $15 billion to prevent and treat HIV/AIDS to fifteen priority countries (twelve in Africa), those hardest hit by HIV. Bush called it a demonstration of “compassionate conservatism.” For the first time, global programs such as PEPFAR and the Global Fund were working together to combat a single disease. Four years after PEPFAR was launched, global deaths from HIV/AIDS finally went down for the first time.

Demonstrators hold a rally in New Delhi, India, on April 10, 2013, to protest a potential free trade agreement between the European Union and India that could restrict exports of cheap anti-HIV medicines to developing countries.

Mansi Thapliyal/Reuters

PrEP Is Approved

In the United States, the FDA approved Truvada (TDF/emtricitabine) for use as a pre-exposure prophylaxis (PrEP). It is not a vaccine but can be taken daily to lower the risk of infection. When used as prescribed, PrEP reduces the chance of HIV transmission by 90 percent. However, the average price of one PrEP treatment is nearly $2,000 for a thirty-day supply, making it cost-prohibitive not only in the United States but also in developing countries where preventive care is most needed.

The Fight Against HIV/AIDS Is Not Over

Despite the progress made in stemming the tide of AIDS, it should be remembered that HIV is a threatening virus that requires constant attention to battle. In 2019, about 1.7 million people became infected with HIV worldwide, and experts believe nearly one in five people infected don’t know that they’re HIV positive. Places that got hit with HIV infection later haven’t seen the same reduction in infection rates that the United States and sub-Saharan Africa have. In Eastern Europe and Central Asia, for example, the annual infection rate has risen by 27 percent between 2010 and 2018. Citing general success, some policymakers have suggested cutting funding for AIDS programs such as PEPFAR. But donors like Bill Gates, whose organization has continued to contribute hundreds of millions of dollars to the fight against HIV/AIDS, argue that complacency could lead to a mass resurgence of the virus. The story of AIDS has shown that each of these steps—from patient activism to medical research to unified international effort—is necessary to successfully combat the next infectious disease.

Activists of "Young medics of Russia" social organization and city volunteers form a red ribbon, the symbol of the worldwide campaign against AIDS, made from paper tulips as they take part in the campaign and also mark International Volunteers' Day in the city of Rostov-on-Don, December 5, 2010.

Vladimir Konstantinov/Reuters