Early AIDS researchers faced every disadvantage imaginable. They were understaffed and underfunded. Their patients were some of the least cared about members of society. Patients didn’t have years to wait for a slow scientific research process. Researchers looking into possible environmental causes of AIDS had to come up with theories based on a lifestyle they were unfamiliar with. For some medical professionals, their ingrained intolerance made gathering field research harder. Some CDC staffers, for example, were hesitant to go into places like gay bars or clubs because of the social stigma.
What follows are the stories of those who were dedicated to figuring this disease out once and for all.
THEORIES ABOUND
Early researchers were desperate to uncover not only what was making their patients ill, but also what was infecting them. What was it about the sexual activity of gay men that was causing their immune systems to fail? At first, doctors considered the theory that a bad batch of drugs was the cause. However, clusters of the same illnesses in patients who had been sexually involved with each other pointed to a sexually transmitted infection (STI).
This 1985 photo of the Castro Bean depicts one of San Francisco’s most prominent gay neighborhoods. The AIDS epidemic hit the Castro District particularly hard.
Because many of the early victims of the epidemic had more than one STI, some doctors believed that the number of diseases the men had was overloading their immune systems. The thinking was that these men had so many diseases at the same time that it had destroyed their immune systems. Other doctors believed that a mutation of viruses like feline leukemia or cytomegalovirus of the herpes family caused the illness. Still other doctors came up with different theories, like the idea that poppers had created cancer-causing semen in gay men.
As doctors raced to find a cause, they also knew that they needed to figure out the mode of transmission. There was no way to stop new infections until they knew exactly how the disease got into the body. Early on, some doctors feared that the disease spread through unprotected sexual activity, but the long incubation period of HIV made that hard to prove. It was difficult for scientists to prove that two men who engaged in sexual intercourse caused an illness. There were just too many other variables. One of the things doctors feared most was a disease that spread like hepatitis B, which was an STI that could be spread through blood. Such a disease had the potential to spread far beyond the gay population of several major cities. Still, the medical community couldn’t agree that a virus caused the disease, let alone that people could pass it on to one another.
This diagram portrays seven ways that disease transmission can occur.
GRID
In 1982, the institutions working with infected men were more desperate than ever. Searching for something to call the cluster of diseases affecting gay men, the medical community declared this mysterious illness gay-related immune deficiency (GRID). CDC researchers immediately disliked the name and refused to use it. With no money to hire researchers, doctors working on the disease were left largely hoping for volunteers. But finding people who would work on a “gay disease” was nearly impossible.
The name had another unintended effect: it caused many doctors who were unfamiliar with the presentation of GRID to discount heterosexual patients. Injection drug users with the disease tended to die faster than patients who contracted the disease via sex. This meant that CDC researchers often weren’t able to interview them before they passed away. Researchers were often told that these drug users actually had been gay; they just didn’t want to admit to something that was considered taboo. When the children of drug users also showed signs of being infected with GRID, most doctors refused to believe that an infant could have a “gay disease.” Early reports of women being infected were not initially released to the public.
The gay label caused doctors and researchers to turn a blind eye to the fact that viruses infect bodies, not sexualities. In the early days of GRID, anyone presenting symptoms of the terrible disease who wasn’t gay often wasn’t diagnosed with GRID. Some doctors assumed that given the comparably small size of the gay community, the disease would run its course, and the epidemic would end. However, other doctors realized that it was only a matter of time before GRID spread beyond the gay community. Some knew that it already had.
HEMOPHILIACS
With no blood test for GRID, there was no way to determine if the national blood supply was infected. Doctors feared the possibility that the country’s blood supply could be infected, for if it was, GRID now had a new way of spreading.
Blood banks, worried about what a tainted blood supply would mean for profits, decided to ignore initial warnings from researchers. All doctors could do was wait, knowing that anyone who received a blood transfusion could be at risk. Researchers who theorized that GRID could be transmitted through blood transfusions suspected that people with hemophilia, a genetic disorder characterized by a missing or defective blood-clotting protein, would be the next group to present symptoms, since they often require blood transfusions as part of their treatment regimen.
They were right. In July 1982, the CDC reported that three hemophiliac men from different areas (Westchester County, New York; Denver, Colorado; and northeastern Ohio) all contracted PCP one of the signature ailments of GRID. The hemophiliac community was hesitant to be linked to a “gay disease” and did their best to avoid the social stigma associated with gay people.
Hemophiliac specialists were also wary of warning patients that a blood product called factor VIII could be a cause of infection because it was such a necessary treatment for hemophilia. Without factor VIII, the life expectancy of hemophiliacs dropped by nearly forty years.
Blood banks were slow to take action when hemophiliacs became infected because they feared a loss of revenue. They didn’t want to spend money on interviewing blood donors about their health or on screening blood for a virus they weren’t convinced existed. An accurate blood test to screen for HIV would not be invented until 1985. By that time, an estimated 40 percent of the American hemophiliac population had been infected with the disease. It’s estimated that more than four thousand, out of ten thousand, American hemophiliacs died of HIV/AIDS.
THE FOUR H'S RECEIVE MEDICAL NEGLECT
By the end of 1982, there were four clearly defined high-risk groups for contracting GRID. Researchers knew them as the Four H Club: homosexuals, heroin addicts, hemophiliacs, and Haitians.
HOSPITAL VISITATION RIGHTS
Hospitalization is hard on all families. For the partners of some LGBTQ+ people, there are extra hurdles. In 2010 President Barack Obama issued a memorandum concerning the rights of hospital patients to choose and receive visitors and to designate a surrogate decision maker. Up until then, it was common for hospitals to deny visiting rights to same-sex couples. Hospitals regularly denied men who wanted to visit dying lovers and friends during the AIDS epidemic. This cruel practice isolated patients from their loved ones and prevented advocacy for proper treatment. Although Congress made no law protecting visitation rights for same-sex couples, many hospitals wrote new rules about patient visits that reflected the many different varieties of families that existed.
This 1990 photo portrays a man visiting his dying partner at the Maitri Zen Hospice in San Francisco.
Because the spread of GRID was similar to that of hepatitis B, doctors knew that gay people, injection drug users, and hemophiliacs were all at risk. The outbreak in a group of recent Haitian immigrants was a surprise.
There was much to hinder studying the Haitian patients. Researchers didn’t have the money to study yet another population that was so little cared about by American society at large. Many of the immigrants had come to the United States illegally or had friends and family who had. This situation made them wary of speaking to government officials from the CDC. They feared deportation and other negative reactions from the US government, so they didn’t cooperate with researchers. Even when researchers could find Haitian patients who were willing to answer questions, language barriers would hinder the CDC researchers. Consequently, in-depth research into the cause of GRID in the Haitian immigrant population was largely abandoned.
Health care workers knew that just like with hepatitis B, it was only a matter of time before they became the fifth H in the growing epidemic.
Although doctors who watched their patients wither and die in a matter of months understood that time was of the essence, larger institutions did not. It took years for researchers to receive grant money and what money they did receive was nowhere near enough. Doctors attempting to publish reports in medical journals meant to warn other doctors of the disease were told they had to wait the standard six months for publication. And these were the conditions given to the few who were not rejected by a publication. When reports were accepted for publication, the doctors weren’t allowed to discuss their findings until after the papers were published. Because most diseases take years to become fatal, medical journals didn’t understand the need to publish as soon as possible. Part of the lack of urgency also came from an overall apathy toward the gay community.
In Miami, Florida, there is a large Haitian immigrant population in an area known as Little Haiti. This 1986 photo portrays some Haitian immigrants celebrating in the streets.