On June 5, 1981, the CDC’s Morbidity and Mortality Weekly Report announced that 5 gay men in Los Angeles, California, had been diagnosed with Pneumocystis carinii pneumonia, an extremely rare fungal infection. The reason for this sudden outbreak was unclear. Similar diagnoses– rare diseases suddenly striking young, healthy, gay men in large numbers– were reported in other United States cities. Two years later, researchers discovered that the cause was a never-before recognized virus, one that directly attacked and then destroyed key parts of the body’s immune system. They called it the Human Immunodeficiency Virus, and the condition it created Acquired Immune Deficiency Syndrome, or AIDS. HIV/AIDS became the defining health crisis of the late twentieth century.
In the first years of the crisis, doctors and researchers struggled to understand the disease. They began to delineate what actions could and could not transmit the infection: sexual contact, needle sharing, pregnancy, and blood transfusions were the most common vectors. They fought against a syndrome that manifested itself in different deadly infections, each advancing rapidly with the body’s lack of natural immune defense. They tried to stem what seemed like an unstoppable tide: over 20,000 total cases reported by the end of 1985, nearly 40,000 by the end of 1987, and many more– perhaps as many as a million- unreported. The disease researchers identified in 1981 had become a pandemic.
By the mid-1980s, health care providers understood how to prevent the disease. Safe sex, clean needles and transfusion screenings, if funded fully and practiced widely, could have arrested the spread of the disease. However, both resources and political will were limited. In the United States, President Ronald Reagan refused to acknowledge the disease or put the weight of his office and his administration behind it until the very end of his presidency. In other nations and regions, AIDS was ignored or worse: in Cuba, the infected were rounded up into quarantine, and in sub-Saharan Africa, a region lacking any strong health infrastructure, AIDS ran rampant. Attacks on gay men rose sharply.
High profile cases spread awareness within the United States. The first was that of Ryan White, a fourteen-year-old boy who contracted HIV from blood plasma infusions used to treat his hemophilia. White was banned from his Indiana school in 1985 and became a national spokesperson for AIDS awareness and patient rights. The same year, famed actor Rock Hudson died of the disease; Hudson was a leading man and masculine icon, but had not publicly admitted he was gay. His death shined a light on the painful and devastating silence most gay men lived under, and its role in the transmission of the disease. Nevertheless, the cumulative reported number of cases continued to rise rapidly.
By the early 1990s, both governmental and non-governmental funding finally allowed health care professionals to build a system for treating and preventing HIV/AIDS, and researchers developed several drugs to treat HIV (though they ultimately proved ineffective when used alone). Despite this, a conservative backlash against AIDS-related sex education and school programs, most notably programs to supply middle and high school nurses’ offices with condoms, held back progress against the disease. Even though another high profile case– that of Earvin “Magic” Johnson, the basketball star– demonstrated that AIDS could be contracted through unprotected heterosexual sex as well as that between men, conservative and religious groups continued to push ineffective abstinence programs.
The 1990s brought both optimism and alarm. New outbreaks continued, and infections showed little sign of reversing their exponential trend; 2.3 million estimated cases in 1993 became over 20 million by 1997. By the end of the decade, according to some estimates, more than 30 million people worldwide had the disease. Cases in the developing world especially continued to skyrocket; by 2000 the disease was the leading cause of death in Africa. At the same time, a combination of new highly effective drugs, fast and reliable testing systems, and rising awareness especially among young adults and teens, led to a leveling and then rapid decline in HIV/AIDS deaths in the United States and other developed countries.
Since 2000, the disease has been marked by a reduced impact and thus visibility in the United States, despite the fact that with the decline in HIV/AIDS related deaths, there has actually been a substantial increase the number of those living with HIV/AIDS. Especially among patients of means and with health insurance, new therapies have made the disease chronic instead of the death sentence it once was. The gay community was shaped deeply by the pandemic: devastated by disease, gay men stepped out of the shadows in which they’d lived to fight for attention and help from their government and society, and gained empathy and action that set the course for the last two decades. The disease did not go away, though; it continues to spread, especially among vulnerable populations– the poor, the homeless, the addicted. A drop in awareness campaigns and funding has made many in the infectious disease and public health communities concerned that the disease is now taken too lightly by a country that has forgotten the terror it created at its start.
Worldwide, though progress against it has been made, HIV/AIDS continues to be a major cause of death and the leading cause of death in sub-Saharan Africa. NGOs such as the Red Cross and Doctors Without Borders have helped to create better awareness and treatment, while funding from around the world has lessened the cost of medication and increased access to it. But AIDS remains a political football: although President George W. Bush’s bold $15 billion pledge under the PEPFAR program in 2003 has had a clearly positive effect, it has also been criticized for conflicts of interest, a reliance on faith-based organizations, and its damaging insistence on abstinence-only and anti-prostitution pledges, which many fear only drives infected persons underground. PEPFAR also faces funding shortages, especially in the aftermath of the 2008 recession.
There are reasons for optimism as HIV/AIDS turns 35. Worldwide transmission is far lower now than at the disease’s peak, as are deaths. Treatments available today make HIV a disease that those infected can live with instead of die from. The dangerous taboos and terror that defined the disease and its victims in the early days have lessened with time and education. But with these improvements comes complacency, and a fear that those least capable of getting treatment could be abandoned by a world that has forgotten just how dangerous HIV/AIDS really is.
Nice job from someone who lived through it and lost many friends. I know a bunch of people on that quilt. I’ll send you my friend Sean’s profile, he’s a great AIDS activist and has been living with the disease since the 80’s.
Great post, Andrew, and this reminds me of a horrible personal memory that might have been formative for me, intellectually. I was in the Army when AIDs was just being discovered. And in 1982/3, while I was stationed in California, we had to go to an assembly to hear a Public Health Nurse talk to us about this new disease that could be sexually transmitted.
She told us—this was a person sanctioned to speak to an auditorium full of Army personnel—that this disease had its origins in African men having sex with monkeys. I registered an anonymous complaint through channels the next day, which I am sure was never looked at.
When people tell me that the crude racism of another time is dead, I always think about that Army assembly, when a spokeswoman approved at least by local Army authorities, told an auditorium of GIs that AIDs came from African men copulating with monkeys.
That’s a pretty horrible case, though certainly that was pervasive myth in the early (and even later) days of the disease. I’m definitely surprised to hear of it in that context, though. AIDS sits sort of uniquely along a bunch of different social and cultural fault lines – sexual, racial, religious, socio-economic. I hope someone with the know-how tackles a strictly cultural history of the disease and its impact someday; stories like this would I’m sure come out of the woodwork. Thanks for sharing it.