"When you believe in a thing, believe in it all the way, implicitly and unquestionable. " - Walt Disney
Question #89379 posted on 04/22/2017 7:02 p.m.
Q:

Dear 100 Hour Board,

Why is AIDS associated with homosexuality, and why at the peak of the American epidemic did it primarily affect gay men? It can be transmitted via any kind of sex, right? So shouldn't it show up at the same rate in heterosexuals as in those with other sexual orientations?

-Thusly

A:

Dear Thusly,

Thanks for asking this question. As a member of the gay community (albeit the gay female community), accuracy and historical understanding is really important to me.

Current US AIDS statistics

Before we go back in time to how things got this way, let's review the current HIV/AIDS statistics. According to the CDC's statistics on HIV in the United States, HIV continues to affect the gay and bisexual male community disproportionately. (From here on out, I'm going to use GBM for "Gay and Bisexual Men," just to make this less clunky.) While there are positive developments related to HIV in the States (for example, new cases declined by almost 20% between 2005 and 2014), 67% of all people with new HIV diagnoses in 2015 were GBM. Heterosexual sexual contact accounted for 24% of all new HIV diagnoses, and IV drug use accounted for 6%. So, even today, while you can contract HIV from heterosexual sex and injection drug use, GBM have more new HIV diagnoses than any other group. The reasons for this are a little complicated and they go back decades.

Very important sidenote: HIV continues to be a major issue in the American LGBTQ community today, because it affects a disproportionate number of people of color. In 2015, black GBM had the most new HIV diagnoses at 26% of all new cases, and white GBM had the second most new HIV diagnoses at 19%. The most troubling part of these statistics is that, while white GBM experienced a decline of 18% of new HIV diagnoses between 2005 and 2014, new cases among Latino/Hispanic and African American GBM each rose by more than 20%. New HIV diagnoses among young African American GBM rose by 87% over the same time period. These higher rates of infection have to do with increased stigma in the culture of those groups and with all of the ways those groups are disenfranchised: lower education levels, poverty, less access to medical care, higher levels of migration, possible language barriers, and higher rates of other STIs. These increases in new cases, however, are also reflections of some of the issues that helped to deepen the original AIDS epidemic back in the 1980s.

Stonewall, gay liberation, and the arrival of HIV/AIDS

So, let's go backward in time and get a little American gay history. Before 1969, the American LGBTQ community was almost completely deeply closeted. Any dating, sex, or identifying as LGBTQ had to be done in secret, and if you were outed you were ruined. LGBTQ people were disowned by their families, fired from their jobs, kicked out of their housing, and condemned and derided by their religious leaders. LGBTQ people were also frequently murdered or beaten and they had no way of defending themselves, because standing up for themselves would have meant outing themselves. Some bars became de facto gay meeting places. The police would conduct raids, which were often very violent, and they would haul the people they found in the bars off to jail, outing them and ruining their lives. In one such bar in Manhattan, called the Stonewall Inn, the police conducted a raid in June of 1969. A series of violent demonstrations lasting six days erupted in response during which LGBTQ people began fighting back. (Note: The Stonewall riots were started by transgender women of color, not white gay men.) While there had been earlier demonstrations in response to police raids, the Stonewall riots were the first to be significantly publicized. This event motivated the LGBTQ community to come together in an organized, out way to fight for more equality. It also led to the LGBTQ community being willing to use less socially acceptable methods in advocating for themselves. They went from marching in straight lines dressed in Sunday best in 1968 to holding hands with their partners at a protest in July 1969. It was an abrupt and powerful change. It's also why Gay Pride events are traditionally held in June.

Anyway, Stonewall kicked off a new chapter gay liberation movement. On the one-year anniversary of Stonewall, June 28, 1970, the first American gay pride marches (then called Gay Liberation Day parades or by other names) were held in Chicago and Los Angeles. By 1972, gay pride marches happened in 12 American cities. An early gay rights advocate, Frank Kameny, who did highly influential work with the Mattachine Society in the 1950s and 60s, said that at the time of Stonewall there were 50 or 60 gay rights organizations in the United States. A year later, he estimated that there were more than 1,500. In 1973, two elected officials in Ann Arbor came out. In 1974, a different incumbent in Ann Arbor who had come out was reelected. In 1976, an openly gay non-incumbent named Harvey Milk was elected to the San Francisco Board of Supervisors. After the team behind it successfully passed homophobic legislation in states across the country, the Briggs Initiative was defeated in California in 1978. Harvey Milk and other California gay rights leaders advocated coming out as a strategy to defeat the measure in order, believing that homophobia would diminish once people knew they loved a gay person. This was a new idea for a community that had been almost completely closeted less than a decade before. It's really hard to overstate the changes the community went through in this brief time. Suddenly it was easy to find many other gay people who understood you, not just in bars but out in the open, provided that you could get to a major city. It was possible and positive to advocate for your own better treatment. People began coming out, freeing themselves from the limits of the closet, and moving to cities with large gay populations. San Francisco and New York became especially prominent gay centers. 

In places like San Francisco and New York in the 1970s, people were consciously shaking off the shame of the closet. They were consciously deciding to celebrate who they were. One of the ways that GBM in these centers celebrated who they were was through sex. These men had spent their entire lives pretending to be (and often trying to be) something different than what they were. They had been made to fear for their lives, their souls, their jobs, and their relationships for being attracted to who they were attracted to. A major value in the gay male community of the day, therefore, was free love. They refused to be hemmed in by societal expectations, as society had made it clear that it did not want them. It's worth mentioning, of course, that American society at large had undergone a sexual revolution during the 1960s, so straight people were also having more sex with less guilt than they had before. The free sexual environment during the gay liberation movement was one extension of that. People also started coming out very young and moving to large cities with large gay populations, so teenage and young adult men were offered unlimited, joyful sex with as many partners as they wanted, and they took it. Because free love was such a prominent value in the gay male community, the bathhouses were a major community center. There was also a cavalier attitude about condom use because prominent STIs of the time period, such as chlamydia, were curable with antibiotics. Condoms were also seen as a straight problem, as pregnancy was not an issue and no one had received sex education that included the risks of same-sex sexual behavior. Recreational drug use was also pretty common. Poppers, a then-popular inhalant that causes an intense high popular at clubs, were especially ubiquitous. Poppers can lead to a more intense sexual experience with less buildup, which can lead to more tearing of the mucous membranes, which causes easier transmission of HIV. Anal sex, whether between homosexual or heterosexual partners, is also more likely to cause tearing than other types of sex because the lining of the rectum is very thin, and anal sex is a prominent sexual act in the GBM community. More importantly, HIV more easily permeates the mucous membranes in the intestines, including the rectum, than the mucous membranes of the vagina or the mouth. (Receptive anal sex is by far the most risky sexual behavior in terms of HIV, followed by insertive anal sex and vaginal sex. Oral sex and other sexual acts pose little to no risk.)

To sum up: Large communities of gay men came together to celebrate their newfound freedom. A prominent expression of that freedom was sex, with as many partners as one wanted, most of whom were also having very large amounts of sex with many partners. This was done without protection, which increased the risk. This created a prime scenario for widespread HIV infection. Note: It's really important not to judge the early gay male community for this. They were just beginning to reclaim themselves from shame following being completely rejected by society, their families, and their religions. Suicide was very common among LGBTQ people at this time. The community engaged in some unwise behavior (with the best intentions behind their value system), but the penalty for that behavior should not be a slow, painful, undignified mass death that wipes out an entire community. They did not deserve what they got.

AIDS, yet undiscovered and undescribed, had caused symptoms such as wasting in Africa by the mid-1970s, and there is evidence that it killed a Norwegian sailor in 1976. HIV arrived in the States sometime around 1970 or 1971, probably from Haiti, where it arrived around 1966. Many Haitians worked in the parts of Africa where HIV originated around the turn of the 20th century. It arrived in New York pretty soon thereafter and arrived in San Francisco around 1976. Once HIV arrived in the concentrated gay male communities in cities like San Francisco and New York, it was quickly passed from person to person. Making matters worse, HIV is asymptomatic for years, so no one in those communities knew what was happening until people were dying and many of them were infected. By the time that Harvey Milk's murderer was convicted of voluntary manslaughter rather than first degree murder using a highly dubious defense in 1979, an estimated 10% of the gay men in San Francisco were already infected.

A history of scientific advancements in HIV/AIDS research and treatment, 1981-1995

In 1981, the disease that would later be named AIDS was medically observed and described for the first time. The CDC published a report of unusual cases of pneumocystis pneumonia in five gay men in Los Angeles. Pneumocystis pneumonia only occurs in people with suppressed immune systems, but there was no reason for these young, seemingly healthy men to have it. Over the next year or so, more clusters of pneumocystis pneumonia and other opportunistic infections, such as Kaposi sarcoma, were discovered. Because the first medically documented cases of AIDS were among gay men, in 1982 the disease was named GRID, Gay-Related Immune Deficiency. It was not yet known what caused AIDS or how it was transmitted, but AIDS' first name connected it solely to the gay community. During this same time, AIDS was also called "the gay cancer," with some, both inside and outside the community, believing that just being gay was making these people die, and some people feeling that gay people deserved this apparent punishment from God. Medical professionals soon noticed that half the men with AIDS were not homosexuals, though most of the others were Haitians, (IV) heroin-users, or hemophiliacs. This caused some people to begin calling it 4-H Disease. By late 1982, the CDC had coined the term AIDS and declared that there was a sexual component to its transmission, though they still did not know what caused it.

Medical progress on HIV was slow. The virus that would be named HIV in 1986 was discovered in 1983 and again separately in 1984. The virus would later be confirmed to be the cause of AIDS. In September 1983 the CDC had mapped all of HIV's major transmission routes, including sexual contact (opposite sex as well as same sex), IV drug use, blood transfusions, and from mother to child during childbirth. They ruled out transmission through casual contact and transmission through the air or water. In November 1983, the WHO held its first meeting to assess the AIDS situation. By this time, over 1,200 Americans had already died of the disease. When HIV was discovered the second time in 1984, the researcher who discovered it estimated that there would be a vaccine within two years. It would take almost that long for a screening test for HIV to become available. By this time, an estimated 50% of the gay men in San Francisco were already infected. A more specific HIV screening test was not available until 1987, a month after AZT, the first drug approved to treat AIDS, was approved by the FDA. Prior to AZT, AIDS was universally fatal, and death usually occurred one to two years after diagnosis with AIDS. Because AZT was not effective by itself, was prohibitively expensive, and had side effects which were intolerable to many people who tried to take it, AZT did not much improve the situation. AZT also did not stop people from eventually succumbing to the disease. Protease inhibitors, which began the era of effective AIDS treatment, were not available until 1995. By then, around 300,000 Americans had died of AIDS. Earlier in 1995, the New York Times had reported that AIDS had become the leading cause of death for all Americans between the ages of 25 and 44.

Effects on the gay community and other affected communities

AIDS devastated the gay community. Many thousands died. People lost friends, lovers, and partners at such a staggering rate that by the later 1980s many had lost count. Many survivors compare their experiences at the height of the epidemic to living in a war zone. Many of them felt that they would all die. At the height of the epidemic, the Bay Area Reporter, a gay weekly San Francisco newspaper, published as many as 31 AIDS-related obituaries in one week. Its annual retrospectives featuring all who had died of AIDS during that year went on for pages and pages. It took until 1998 for the Reporter to publish an issue with no AIDS-related obituaries.

Hospitals would refuse to treat AIDS patients out of fear of being labeled an "AIDS hospital." Funeral homes refused to take the bodies of those who died of AIDS or hold funerals for them. Some airlines would not allow people with AIDS to fly. People would not even go near the infected, especially the sick. Opportunistic infections associated with AIDS caused a host of medical problems, such as blindness, deafness, wasting, pneumonia, cancer, profound weakness, and intense pain. With no one else to help, members of the gay community did a heroic job of helping themselves. Countless organizations were started within the community to address the various needs of a sick and dying populace. Meals were delivered to those too ill to cook for themselves who were dying of wasting. Friends took turns caring for each other, rotating between who was well. Counseling and companionship services were set up so no one had to face death alone when his friends had all died before him. When funeral homes could not be found, they buried their dead themselves. Money was shared. One HIV+ San Francisco artist even started a charity to ensure that artists had access to art supplies when they could no longer afford them because they could not work and had huge medical expenses. Cleve Jones, a gay rights and AIDS activist, started the AIDS Memorial Quilt, which was first shown on the National Mall in Washington in 1987. All of this was done by people who were sick themselves and staring down what was, at the time, inevitable death.

Profoundly, the lesbian community, which had long been mistreated and excluded by the gay male community (as well as being mistreated by and excluded from women's groups at the same time), stepped in and cared for sick gay men when no one else would. Sex between women is at very low risk for HIV transmission, so lesbians were not dying or sick. Still, lesbians came to the aid of gay men when they needed it most in a matchless way. They participated in every AIDS-related relief organization, took up AIDS advocacy, and took care of the sick and dying. Many survivors of the AIDS epidemic have said that we would all be lucky to belong to a community that took care of its own in the way that the gay community did during that time. If Stonewall proved that queers were not limp-wristed fairies who would weakly accept mistreatment, the community's response to AIDS proved that they were not two-dimensional, sex-crazed degenerates. They cared for each other selflessly and courageously.

Misconceptions of how the disease was spread and homophobia combined to create intense fear and hatred toward AIDS victims, especially gay men but also people with hemophilia and people who contracted AIDS through blood transfusions. The hemophilia community was also devastated by AIDS. 90% of those with severe hemophilia contracted HIV during the 1980s and thousands died. Young children with hemophilia who contracted AIDS were stopped from going to school by the hateful protests and threats of their neighbors. The homes of one family with children with hemophilia and AIDS was burned down to force family out of the community. Infected children were called the worst gay slurs. People who contracted AIDS through blood transfusions faced similar discrimination. Still, activists from these communities fought back and made meaningful contributions in the fight against AIDS. Ryan White, a child with hemophilia who contracted AIDS, became the national face of children with AIDS who fought to continue to attend school. Arthur Ashe, a famous tennis player, contracted HIV from a blood transfusion during heart surgery. In 1992 he publicly announced that he had AIDS, facing incredible scrutiny, and then he created his own foundation to raise awareness and educate people on safe sex and AIDS.

Political negligence and homophobia

One of the reasons that medical progress was slow and that the AIDS epidemic lasted as long as it did was apathy on the part of the government and especially the president. Though he publicly opposed the Briggs Initiative in 1978, then-President Reagan ignored the AIDS crisis, believing it to be a gay issue rather than a health issue. A significant portion of President Reagan's base was the then-newly identified religious right. The Moral Majority, a new political organization, contributed to this movement, and its founder, Baptist minister Jerry Falwell, once said, "AIDS is the wrath of a just God against homosexuals. To oppose it would be like an Israelite jumping in the Red Sea to save one of Pharaoh's charioteers." In 1983, while Ronald Reagan was president but two years before he would serve as President Reagan's Director of Communications, Pat Buchanan wrote an op ed in the New York Post that said, in part, "The poor homosexuals -- they have declared war on nature, and now nature is exacting an awful retribution." It also described the gay community as "a common carrier of dangerous, communicable, and sometimes fatal diseases." Perhaps because of all this pressure, and the fact that President Reagan had campaigned as an anti-gay candidate in 1980, Reagan did not even say the word AIDS in public until 1985. This came after a famous actor (whom Reagan had known personally) named Rock Hudson died and mutual friend Elizabeth Taylor urged President Reagan to acknowledge that now he, too, knew someone with AIDS. In 1987, near the end of President Reagan's second term, he did finally address the issue of AIDS at the third International Conference on AIDS. By then, almost 21,000 Americans had died.

Meanwhile, Dr. C. Everett Koop, the surgeon general, has said that he was kept out of all AIDS discussions during the first five years of the Reagan administration. According to Dr. Koop, this was "because transmission of AIDS was understood to be primarily in the homosexual population and in those who abused intravenous drugs" and due to the attitude of the president's advisers, which was "they are only getting what they justly deserve." Treatment and research professionals at every level, including at the CDC and NIH, constantly requested more funding than they had to deal with the AIDS crisis. Their requests were routinely denied. President Reagan publicly opposed an increase in spending on AIDS research when the most prominent AIDS researcher in the country said that the current funding was "not nearly enough." Members of the administration publicly lobbied against sex and AIDS education both in high-risk communities and in schools. President Reagan eventually spoke out to agree with them. Along this vein, President Reagan said in 1987, "After all, when it comes to preventing AIDS, don't medicine and morality teach the same lessons?" In 1985, President Reagan directly contributed to the anti-AIDS (and thereby the anti-gay) hysteria that was keeping children with AIDS out of schools when he answered a question at a press conference about whether he would send his child to a school with a child who had AIDS. He said, "I'm glad I'm not faced with that problem today. ... It is true that some medical sources had said that this cannot be communicated in any way other than the ones we already know and which would not involve a child being in the school. And yet medicine has not come forth unequivocally and said, 'This we know for a fact, that it is safe.' And until they do, I think we just have to do the best we can with this problem. I can understand both sides of it." The CDC had, in fact, stated unequivocally that transmission through casual contact or the air was not possible two years earlier.

At a press conference in 1982, a reporter asked the press secretary about the epidemic and whether President Reagan had ever spoken about it. "I don't know a thing about it," the press secretary said. After the reporter pointed out that 1 in 3 people with the disease had died from what was then called the "gay plague," the press pool laughed and, as they did so, the press secretary said, "I don't have it. Do you?" Over the next year, the same reporter would ask the same questions about the epidemic with the same result -- laughter. The press secretary once retorted that the reporter had an "abiding interest" in "fairies." The president said nothing.

President Reagan failed to control the homophobic and AIDS-phobic attitudes of his administration and party, and he himself demonstrated apathy and a lack of vision on AIDS during his presidency from 1981 to 1989. President Bush would bring more of the same. The tide would not begin to turn until a gay AIDS activist named Bob Rafsky aggressively confronted then-candidate Bill Clinton at a 1992 campaign rally and Clinton responded by publicly promising to address the AIDS epidemic and support its victims. By then, approximately 200,000 Americans had died of AIDS.

ACT UP, fight back, fight AIDS

In addition to the political climate, treatments were initially nonexistent and then expensive and ineffective, and the process to get medications approved at that time seemed needlessly and negligently long to AIDS activists. It took six years from the initial CDC report on AIDS for the first AIDS treatment drug, AZT, to be tested and approved. At that time, over 20,000 Americans had died of the disease and the average life expectancy from diagnosis was one to two years. Though AZT, which had was originally developed as a cancer drug, had been approved in record time, the approval process had still taken 25 months. Facing death in less time than the process took to approve already-existing drugs, AIDS activists were enraged. AZT was also the most expensive drug in history, costing about $10,000 for a year of treatment. ($10,000 in 1987 adjusted for inflation is roughly equal to $21,000 in 2017.) This was well outside what the average AIDS patient could afford.

In response to these and other issues, a direct action advocacy group called ACT UP (AIDS Coalition To Unleash Power) was formed in March 1987 at the Lesbian and Gay Community Services Center in New York. ACT UP's motto of "Silence=Death" and its ability to turn out hundreds or thousands of people to protests (many of whom were arrested each time) got it and its concerns widespread media coverage, and they got results. Several days after its first series of protests at Wall Street in late March and early April 1987, in which they protested the lack of a national, coordinated strategy on AIDS, the lack of transparency of and access to the drug testing process, and the high price of AZT, the company that owned AZT announced that the price would drop to $6,400 per year. Soon thereafter, the FDA announced plans to significantly shorten the time it took to get through the approval process.

In 1988, ACT UP successfully shut down the FDA for a day in order to process the continuing issues with drug testing. The turnout to this protest, the media said, was the largest event of its kind since the Vietnam War, and it resulted in massive media coverage. At this event, the protesters were able to demonstrate how knowledgeable and savvy they had become when they demanded specific improvements that could be made. As a result, gay and AIDS activists were asked for input by the FDA and NIH and were allowed greater access.

During this time, AIDS activists assumed that there was an existing drug that, if tried on AIDS alone or in combination with other existing drugs, would be effective. They therefore pushed for, and got, much shorter testing and approval processes on many drugs, including DDI, which helped prevent blindness caused by one of the opportunistic infections associated with AIDS. They also fought for the right to use other drugs which were believed to be potentially helpful against AIDS but which were not approved by the FDA despite being available over the counter in other industrialized nations. This was especially important to the community because AZT was initially given in extremely high doses which caused side effects that were often intolerable to AIDS patients. (None of these drugs proved to be effective against AIDS.) ACT UP also fought for more humane testing protocols, representation of people of color, women's issues, housing protections, and accurate reporting of AIDS facts and against homophobia, religious intolerance, unfair travel and immigration policies based on AIDS status, and apathy. In a time of intense homophobia and AIDS-phobia, and without any government support, ACT UP was able to make many extremely positive changes for people with AIDS.

A part of ACT UP, called the Treatment and Data Committee, specialized in learning about the testing and approval process for drugs as well as the current science behind drug development. They were aided by a chemist named Iris Long, who had no prior connection to the LGBTQ community. After listening to their approach, she suggested that she could help them improve it. She taught the members of Treatment and Data about the current AIDS drugs and the ins and outs of the testing and approval process. They began to digest huge amounts of the medical and testing literature and bring that information back to the larger body of ACT UP. Because they were so knowledgeable, they were taken seriously by the scientific community and they were able to gain unprecedented access to the process. They were able to secure a position of power for people with AIDS and make real contributions. This was especially true after they wrote and presented a pamphlet which outlined specific and realistic changes that could be made to drug testing to make it more time effective and humane.

Treatment and Data eventually split off from the main body of ACT UP due to conflict within the group. The main body of ACT UP felt that Treatment and Data had become too close to oppressive pharmaceutical companies and other negative forces, and Treatment and Data felt that ACT UP was overly concerned with social issues. In 1992, Treatment and Data became TAG (Treatment Action Group). The members sat on committees at the FDA, such as the Anti-Viral Advisory Committee, and they were vital to streamlining the process and personally designing the trials that led to the release of protease inhibitors, which in combination with other drugs transformed AIDS from a death sentence to a manageable chronic disease. In 1995 and 1996, the death rates related to AIDS dropped dramatically, and many people's viral loads dropped to undetectable levels. TAG was vital to this process that has since saved millions of lives and restored life expectancies to normal or near-normal. One of the founders of TAG, Mark Harrington, was awarded a MacArthur Genius Grant in 1997 for his work on AIDS. Together, ACT UP and TAG's gains in access to all steps of the process for victims and advocates were unprecedented for any disease. Patient-centered care, medical care homes, patient advocacy, and other movements all have their roots in AIDS activism.

Conclusions

I believe I have answered your second question (in case I haven't: societal factors and activists energized gay liberation, gay men were concentrated into metropolitan areas with shared risky behaviors, the majority of gay men were infected, existing prevalence within the group with limited partners made each sex act more risky, anal sex is the most risky sex act for HIV transmission, and ongoing issues related to education, etc. continue to contribute), so now I will circle back to your first one: Why is AIDS associated with homosexuality? There are a lot of bad reasons for this, of course. As I said in the beginning, HIV continues to affect GBM (especially GBM of color) more than it affects other groups. A lot of it also has to do with homophobia, because AIDS gave a convenient excuse to hate and fear gay people that seemed pseudo-scientific and was widespread. The attitude persists among many that the gay community got what it deserved, either because it had offended God or because it had engaged in reckless and (per their opinion) immoral, unnatural, or disgusting behavior. The stigma is still potent enough that I have a positive friend who has told no one but me about his status.

However, I think there are a lot of good reasons for this, too. The AIDS epidemic was an almost incomprehensible tragedy for all involved. However, when faced with death, disease, fear, loss, hatred, lack of support, violence, and their own mortality, the gay community and their supporters showed the world how to deal with tragedy. They showed up for each other in ways that most of us will never understand. They advocated for their community even when they were sure that they themselves would die in case they could save lives. They forgave each other for serious slights in order to help each other. They showed incredible bravery and intelligence and they did not allow the outside hatred to turn inward. I am incredibly proud to belong to their group.

The AIDS crisis brought attention to the LGBTQ community, and the community pulled together in that tragedy. Both of these circumstances have enabled the community to make all of the recent advancements in LGBTQ rights. We also, however, lost a generation of brilliant, vibrant, beautiful people who cannot be replaced. If you are interested in this topic, there are two documentaries, both on Netflix, which I cannot recommend enough. How to Survive a Plague is about ACT UP and TAG in New York during the height of the epidemic. We Were Here is about life in San Francisco before, during, and just after the epidemic.

- The Black Sheep