The story of Acquired Immune Deficiency Syndrome (AIDS) has been convoluted from the start. The first report hinting at its existence, published on June 5, 1981, described a different illness: Pneumocystis pneumonia (PCP). What puzzled doctors was the fact that PCP primarily affected those with weakened immune systems. The cases reported on June 5, however, were all previously healthy gay men. That same day, a second disease among gay men was reported in New York: Kaposi’s sarcoma, also common among the immunocompromised. With two extremely improbable yet similar outbreaks on their hands, officials began to worry.
It soon became clear that these were not isolated incidents. In the following weeks, similar reports would begin flooding in from across America. The first known death occurred that October. Over the next 40 years, that one death would blossom into over 700,000 in the US alone, a larger toll than any war in American history. Globally, the number now stands at 40 million.
During the early days of what would come to be known as the AIDS crisis, patients went for years without effective treatments. Even isolating the cause and developing a test would take years. Victims died confused and without hope, isolated and stigmatized for having a disease no one understood.
Today, we know that AIDS is caused by the Human Immunodeficiency Virus (HIV). The virus infects CD4 cells, a crucial component of the human immune system. Eventually, victims deteriorate until they can no longer even repel a cold. Luckily, humanity has come a long way from those dark days in 1981. HIV is now among the most studied viruses in history. A wide range of tests and treatments has rendered it a manageable, survivable disease in countries with widespread access to those tools. But with hundreds of thousands still dying annually from one of the longest pandemics in history, it is not yet time to move on.
Origins
In retrospect, one of the most obvious things about the AIDS pandemic was its inevitability. Today, most AIDS deaths are the result of an HIV strain called Group M, but eleven other HIV groups are known to circulate in humans. Each is descended from SIV, a virus prevalent in chimpanzees and other simian species. Disturbingly, each group represents an independent jump of SIV from chimpanzees to humans. Rather than a single freak event, HIV-like viruses have seemingly crossed into humans many times throughout history. It was only a matter of time before the right virus sparked a pandemic.
The first known case of the right virus in question (Group M HIV) was confirmed from a sample taken in the modern-day Democratic Republic of Congo in 1959 dubbed ZR59. An early theory postulated that experimental Polio vaccines grown in cells from monkeys spread the virus. However, just like the early cases in California, the Zaire case did not represent patient zero of the AIDS pandemic, making that theory unlikely. Scientists know this thanks to the discovery of a second sample taken in 1960 called DRC60, which contained a different HIV strain. By counting how many mutations separate ZR59 from DRC60 and combining that with knowledge of how long it takes for HIV to mutate, the real first case was dated to the early 1900s.
HIV's gradual rise to global prominence made the tracing of its origins extremely complex.
This patient zero likely lived near the rainforests of eastern Cameroon where Group M’s closest chimp relatives are found. Because the virus can be transmitted through blood, a Cameroonian hunter could have easily come to be infected while catching or butchering a chimpanzee. The hunter could then have incubated it for years while unknowingly infecting others. At the same time, HIV, which has a remarkable propensity for mutation, underwent gradual changes that made it a killing machine.
As the virus became more transmissible, the outbreak began to spread exponentially. The region was criss-crossed by many rivers, offering the young virus many routes of travel. Eventually, the earliest HIV cases formed a thousand-mile chain of viral transmission stretching from Cameroon to the city of Leopoldville in modern-day Kinshasa. Little was known about viruses then, and life expectancy was short. Cases went undetected, and any deaths could be easily blamed on other causes. The virus had hit a jackpot.
Now known as Kinshasa, the city of Leopoldville was an early epicenter of HIV infection. Source
In the 1950s, the region was gaining its independence from Belgium and experiencing a population boom. Cities were starting to pop up, interregional travel was increasing, and new sexual patterns and prostitution were rising in step. While doctors were likely seeing early AIDS cases by this point, information remained too sparse to connect the dots, and no containment efforts could be made. At this point, HIV had reached critical mass, like fissile material starting a nuclear chain reaction. Decades before the first cases would be recognized, it was already too late to stop HIV.
The American Epidemic
Eventually, international travel and blood transfusions would carry the disease out of Kinshasa and seed infections across the globe. In the United States, where a perfect storm of changing cultural and sexual practices converged, it would finally be spotted.
During the first year of the US AIDS outbreak, the disease was known as GRID, or Gay-Related Immune Deficiency. Soon enough, however, it became clear that the epidemic was not confined to the gay community. People with blood conditions like hemophilia got sick through blood transfusions. Women contracted the virus. Unborn children were infected during pregnancy. Drug addicts got AIDS from contaminated needles. Still, with deaths largely confined to the gay community, many Americans remained unaware of the outbreak and indifference was the norm.
Fortunately, HIV would be isolated in 1983 by a team led by Luc Montagnier in France. In 1984, a second team led by Robert Gallo in the US made a similar discovery and demonstrated that HIV caused AIDS, opening the way for a blood test and further research.
Colored images of HIV. Source: CDC Public Health Image Library
Around the time the first HIV test came out, the virus finally exploded in the public consciousness when famous Hollywood star Rock Hudson died of AIDS in 1985. In part thanks to his fame, as well as his donation to the American Foundation for AIDS Research (amfAr), the epidemic was finally becoming a mainstream issue. Another public case soon brought further attention, this time involving an Indiana teen named Ryan White. After contracting the virus through a blood transfusion, White was turned away from his middle school for having the disease, sparking a legal battle that captivated millions.
Teen AIDS activist Ryan White was a pioneer in raising awareness of the pandemic. Source: AP Images
Until these cases, the stigma revolving around the AIDS crisis had been so great that even US President Ronald Reagan did not mention the disease. Even after 1985, much of the public’s attitudes towards AIDS remained unhelpful. Panicked Americans called for quarantines and some claimed that AIDS was divine punishment for leading a promiscuous lifestyle.
Finally, 6 years after the first reported case, the first HIV treatment arrived in the form of AZT, which interferes with an enzyme used by HIV to replicate. While lifesaving, the drug was extremely expensive and far from perfect, costing 8000$ a year per patient—an unaffordable cost considering that HIV cannot be eradicated from the body and requires lifelong treatment. The continuing inequity inspired the formation of ACT-UP, which staged protests around the nation to advocate for AIDS patients. Mirroring tactics used during the Vietnam War and the Civil Rights era, ACT-UP mobilized everyday people to speak up and engage in civil disobedience. Thanks to groups like ACT-UP, rampant misinformation and discrimination against gay patients were slowly pushed back.
Protests played a key role in the early war on HIV/AIDS. Source
In the meantime, US AIDS cases continued to skyrocket. Ryan White, the Indiana teen whose case had brought so much awareness to the crisis, succumbed to the virus in 1990. In his honor, the Ryan White CARE Act was passed in Congress, paving the way for grants worth billions of dollars to support HIV patients. The next year, Los Angeles Lakers star Ervin “Magic” Johnson retired after contracting HIV and famous singer Freddie Mercury died from the disease. In New York, ACT-UP staged its largest protest yet, with thousands marching to protest the US government's inaction. Coffins were delivered to numerous government offices and signs with messages like "one AIDS death every 8 minutes" were hung up, making the urgency of the crisis undeniable.
From Elton John to Larry Kramer, famous figures in the gay community would rise to the challenge and advocate for the disease’s victims. Simultaneously, scientists were developing a fuller understanding of HIV/AIDS and communicating that information to the general public. All this contributed to a reduction in the lethal combination of panic and indifference from Americans outside the gay community. For many, however, change had come too late. By 1995, one in ten gay men aged 25-44 in the United States had died of HIV.
Fortunately, progress did not stop there. In 1996, a new therapy called HAART debuted, the first to cut the level of HIV to undetectable levels in recipients. By the late 1990s, a combination of safer sex practices and improved treatment would cut the US death rate from AIDS by almost two-thirds. Similar trends would following in other countries. In Sub-Saharan Africa, near where HIV first began, however, the real carnage had only begun.
Inequity Kills
Even as AIDS deaths began to decline in wealthy nations that could afford treatment, deaths continued to surge worldwide. In 1999, AIDS surpassed Tuberculosis as the deadliest infectious disease. By the start of the 21st century, it would become the leading cause of death in young people.
Long after all the drugs and technology needed to make HIV survivable had been invented, preventing death by AIDS remained a long and arduous process. Patients first needed to be aware of AIDS and its signs. In many communities, they would then need to overcome the stigma surrounding the disease and distrust of modern medicine to seek help. There also needed to be an adequate healthcare system capable of handling AIDS cases and administering tests. From there, patients would need to pay for expensive and lifelong treatment courses. For tens of millions of people with HIV across the globe, such a process was simply not possible. AIDS, on the other hand, was always going to be nearly 100% fatal for the untreated.
HIV has infected tens of millions worldwide, with especially high rates in Southern Africa. Source: Ourworldindata
By the early 2000s, an “AIDS belt” of 16 Sub-Saharan African countries from Ethiopia to South Africa had emerged as epicenters of the pandemic. Low public awareness, poverty, and limited access to healthcare systems all contributed, as did the prevalence of other STDs and practices surrounding sex and circumcision. Life expectancy in the region, which had approached 64 in the years before the pandemic, fell to 47. In Zambia, where life expectancy bottomed out at less than 45 years, 75% of pediatric hospital wards were filled by AIDS patients.
An important message in the fight against HIV/AIDS. Source
Just as the rise of AIDS shows how inequity creates death and destruction, its eventual retreat proves what’s possible if wealthy countries don’t leave poor ones behind. A major driver of the fall in AIDS deaths came in 2003 when US President George W. Bush established the President's Emergency Plan for AIDS Relief or PEPFAR. To date, the US has donated over 100 billion dollars to fight AIDS as part of PEPFAR while also contributing to efforts against Malaria and Tuberculosis. Much of this money is dedicated to securing HIV treatments for Sub-Saharan Africa and strengthening healthcare systems. The results (I'll only cover the biggest here given the program's scale) are spectacular:
Saved 25 million lives globally
Improved the health of tens of millions more, making it arguably the single most lifesaving program in the world.
Strengthened healthcare systems in multiple countries
Prevented death and illness from other diseases, including Ebola and COVID-19.
Increased GDP growth by 2.1% in aided countries
Funded programs that fought for human rights and young women, the worst-affected demographic by HIV in Sub-Saharan Africa.
What’s Next?
Thanks in part to programs like PEPFAR, the AIDS pandemic is receding. HIV went from causing 3.1% of all human deaths at its peak in 2004 to just 1.1% in 2021. Some even believe that the end of the outbreak is within reach. Access to HIV treatments, which can prevent nearly all HIV deaths and infections, has expanded to around 75% of sufferers. In Sub-Saharan Africa, this has completely reversed the 25% drop in life expectancy due to AIDS in the early 2000s. Globally, virtually all indicators of the pandemic's severity, from new infections to the number of children orphaned, have consistently improved for decades. Much of this has been accomplished using treatments that appeared in the 1990s and 2000s. Now, new technologies like mRNA vaccines are being leveraged to create even more tools to fight HIV. It seems that just by maintaining the current rate of progress, we can end the AIDS pandemic.
But can the current trajectory be maintained? More than many are willing to admit, we are already dangerously close to walking back our achievements in the fight against AIDS. For example, the lifesaving PEPFAR program nearly fell last year when Congress failed to authorize its funding. At present, its future remains uncertain despite a short-term reauthorization. Stopping the program now, when HIV is far from eradicated, could cost millions of lives.
HIV is still a rising threat in some areas. Source: Ourworldindata
With so many bumps in the road and over half a million deaths occurring annually, it’s safe to say that the AIDS crisis is far from over. In the Philippines, new HIV cases have more than doubled in the last decade, and Russia and Indonesia both saw recent surges that are stuck at high levels. It’s a stark reminder that without a cure or a vaccine, most of the global population is still susceptible to HIV. Without a strong commitment to ending HIV/AIDS, all the progress made in the last four decades can still be undone.
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