To admit that you were sick with GRID meant not only confessing to being infected with a life-threatening illness, but also coming out of the closet. Many gay men either weren’t ready to discuss their sexuality or didn’t feel safe doing it. Homosexual acts were still a crime in many localities. It was legal to deny gay people housing and jobs. The stigma that surrounded GRID’s association with the gay community severely limited even what researchers could do. As the 1980s progressed, doctors found themselves fighting social stigma alongside the effort to determine what, exactly, was wrong with their patients.
THE FIRST CONGRESSIONAL PROBE
The opening statement of Representative Henry Waxman (D-CA) at the first congressional probe into the GRID epidemic in April 1982 echoed what most of the gay community was thinking:
This horrible disease afflicts members of one of the nation’s most stigmatized and discriminated against minorities. The victims are not typical Main Street Americans. They are gays ... There is no doubt in my mind that if the same disease appeared among Americans of Norwegian descent, or among tennis players rather than gay males, the response of both the government and the medical community would have been different.
Waxman had a large LGBTQ+ population in his congressional base in Los Angeles. He understood how important it was for the government to take the epidemic seriously. Waxman would remain a congressional champion for the disease for the length of his forty-year political career.
By the end of the probe, the National Cancer Institute (NCI) had offered to release $1 million for KS research. Those familiar with the size of grants the NCI usually gave out knew the sum wasn’t even 1 percent of the usual grants that the institution awarded. Similarly, while the Reagan administration had technically increased the CDC’s budget by $5 million, none of that money was slated for GRID research.
In 1982, the National Institutes of Health (NIH) had spent $36,100 per death on toxic shock syndrome and $34,841 per death on Legionnaires’ disease. But it had spent only $8,991 per death on GRID. Even worse was the fact that at the time, the combined death toll of toxic shock syndrome and Legionnaires’ was still less than that of the death toll of GRID. It would be another three years before the president would make even a passing public reference to the epidemic.
Representative Henry Waxman was one of the first government officials to call for funding AIDS research and prevention.
A DIFFERENT NAME FOR THE SAME DISEASE
It wasn’t just politicians who didn’t want anything to do with the GRID epidemic, even though it had spread to almost half of the country. Many in the medical field had their own prejudice to deal with. And with so little funding going to GRID, many doctors simply saw no future in researching a disease that so few cared about, even though GRID was something totally unlike anything the medical world had ever seen before. Its association with gay men stopped researchers in their tracks.
While doctors simply chose not to research GRID, things were getting darker in hospitals. Some nurses who were scared that they’d become infected had begun to refuse to treat GRID patients. Many nurses weren’t willing to be placed at high risk of contracting a disease that was 100 percent fatal. Those nurses, as well as some others in the medical profession, thought it was best not to take any chances. As the epidemic grew, so too would this line of thinking until AIDS patients would be completely shunned by society.
With the addition of hemophiliacs and Haitians to the list of at-risk communities, it was clear that GRID was no longer simply “gay related.” Researchers from the CDC had never liked the name GRID, and doctors knew the stigma associated with it was hurting their patients. Members of the gay community and the medical community were frustrated with the media’s silence surrounding the disease. The media weren’t interested in running stories about sick gay people. Only a handful of news articles had been published even though the epidemic was a year old and showed no sign of slowing down. In fact, GRID got the most press when heterosexuals began to be diagnosed with it.
In the summer of 1982, it was decided that the disease formerly known as GRID would now be called acquired immune deficiency syndrome (AIDS). The name didn’t single out any one group of patients. The word “acquired” implied the disease was caused by something outside the patient’s body, rather than something like a genetic disease. To many, dissociating the disease from its primary victim seemed like the only way to get desperately needed attention.
The name change was a necessary step, but the damage of GRID had already been done. Although the public still knew very little about the epidemic, what they did know was that it was something gay men got.
IT'S IN THE BLOOD
With infections appearing in hemophiliacs and several people who had received blood transfusions, researchers at the CDC feared that AIDS had infected the nation’s blood supply. However, the Food and Drug Administration (FDA), which had the power to regulate blood banks, thought the CDC was grouping unrelated diseases together under one name to receive more federal funding. They refused to put out regulations for a disease they weren’t convinced was real.
TIMOTHY WESTMORELAND AND BILL KRAUS
Although the executive branch of the White House was perfectly fine with ignoring the AIDS epidemic, two openly gay men in the legislative branch weren’t. Bill Kraus started out as a gay rights street activist working with Harvey Milk, the first openly gay elected official in California. He stayed in politics after Milk’s assassination in 1978 by becoming an aide to Congressman Philip Burton. Timothy Westmoreland was Congressman Henry Waxman’s aide. He had helped orchestrate the congressional probe into GRID. What little money Congress did direct through legislation toward the AIDS epidemic came from the efforts of these two men.
Kraus died of complications due to AIDS in 1986. Westmoreland continued working to get funding and health insurance for people with AIDS throughout his career. When asked about how the epidemic changed his work as a health care advocate, he said:
AIDS has also dramatized the gap between the middle class and the poor in this country. Access to health care really is a question of life or death. And disposable income is key; cash makes a difference between people living or dying.
Blood banks that could have instituted their own regulations had a hard time figuring out how to handle the epidemic. Many called for a ban on gay donors. Others feared a ban would stigmatize them even more. Self-reporting seemed like a good compromise, but the long incubation period of AIDS meant that people who seemed perfectly healthy could be carrying the disease unknowingly. Another issue with self-reporting was that some gay men who had trouble finding work because of discrimination would supplement their incomes at blood banks that paid donors. These men weren’t likely to disclose their sexuality if it meant losing the money they desperately needed.
Blood banks were also extremely concerned with the costs of screening. They would lose a lot of money if they had to start interviewing donors and examining blood for a disease that doctors still had no test for. The closest thing to an AIDS test doctors could come up with was to search for hepatitis B, a disease that almost all AIDS patients had as well. But even that wouldn’t catch all the infected blood. Added to that was the fear that a lack of donors would cause a blood shortage, a medical crisis in its own right. In 1982, it was a certainty that AIDS was in the blood supply. It would take almost a year after this discovery for the FDA to finally issue regulations.
The Food and Drug Administration is responsible for making sure new drugs are safe and effective before they’re administered to the public. The FDA’s headquarters is located in White Oak, Maryland.
The FDA banned all men who had sex with men from donating blood in 1983. In 2015, this lifetime ban was revised: men who had not had sex with men in the past twelve months would be allowed to give blood.
As doctors tried to prove that the epidemic was in fact a sexually transmitted disease, they began to create patient webs to try to connect as many of the patients as possible. During the extensive interviews the CDC conducted, one name came up over and over again: Gaetan Dugas. He would soon become known as patient zero.
Dugas was a Canadian flight attendant. Because of his employee discount, he was able to fly to San Francisco and New York regularly. Dugas had had more than one thousand sexual partners. In a 1984 paper prepared by the CDC, forty cases of AIDS all over the United States led back to Dugas. These webs were anonymous, with each man being identified by a number rather than his name, to protect the identities. However, because Dugas was from Canada, he was assigned the letter O. O stood for “Out of California.” The O was widely misread by many as a zero. This misinterpretation, along with the fact that Dugas had had more than one thousand sexual partners, led many to believe that he was the person who had brought AIDS to the United States.
Although Dugas was among the earliest infected in the late 1970s and although he did pass the disease on to many people, he did not bring the disease to the United States. In 2016, researchers who traced the origin of AIDS were able to demonstrate that AIDS entered the United States through Haiti in 1969.
In 1984 the CDC traced forty US cases of AIDS back to “patient zero.” Continued investigations eventually confirmed that AIDS came to the United States through Haiti in 1969.
SILENCE EQUALS DEATH
As doctors searched for answers in laboratories across the United States, gay men were looking for answers as well. Doctors theorized that the disease was spread through bodily fluids, but without a test for the disease, they couldn’t even be sure which bodily fluids spread it. Without proof of their theories, most health organizations felt uncomfortable releasing official guidelines about how anyone could lower their risk of infection. They wanted to avoid causing public panic.
LGBTQ+ rights activists battled over whether or not to tell people to limit their sexual activity. Their fear was that if they equated the illness with homosexual acts, it would only further stigmatize them. And with no official statements about the disease from health organizations, the LGBTQ+ community had only rumors to inform their understanding of the crisis. Was it poppers causing the disease, as they’d heard months ago? Was it, as many believed, a government conspiracy to kill off the gay population? Was it all a hoax being spread by bigots wanting to scare gay men straight? No one seemed to know what was happening, and the government wasn’t talking. The newspapers weren’t talking. A lot of gay men were sick and a lot of them were dead and no one in power seemed to have anything to say about it.
Despite growing evidence that AIDS was being spread through sexual contact and blood products, the groups involved in the fight against the epidemic were hesitant to openly promote abstinence of any kind. Some in the medical community and in the LGBTQ+ community thought places like gay bathhouses, where men often met for anonymous sex, should be temporarily shut down as a public health hazard. Others feared that the closure of gay businesses would lead to the loss of other civil rights that past LGBTQ+ rights organizers had given their lives to secure. In the fight against AIDS, there would be no easy answers.