Three decades, 650,000 deaths in the United States, 7,000 known deaths in San Diego County and still no cure. Acquired Immune Deficiency Syndrome – commonly known by its acronym, AIDS – was first documented on June 5, 1981 by the Centers for Disease Control and Prevention. The LGBT community has never been the same.
AIDS has ravaged a generation of gay men. Artists, doctors, lawyers, advertising executives, store clerks, waiters – AIDS was a democratic disease that affected people from all walks of life. Literally no one was immune.
The outbreak
In 1981, the CDC first identified an unusual cluster of five gay men in Los Angeles that had pneumocystis pneumonia; cases were also appearing in New York City and San Francisco. Over the next two years, the CDC would identify additional cases of pneumonia throughout the country in otherwise healthy gay men. In addition, some of these men were presenting with a rare opportunistic infection called Karposi’s sarcoma. That first year, 234 people in the United States died.
Just one year after the CDC first reported unusual pneumocystis pneumonia cases in Los Angeles, a study of reported cases of gay men in Southern California suggested that the infections may have been sexually transmitted. It was then that the stigma against the gay community began and it was labeled gay-related immunodeficiency, or GRID. Deaths in the U.S. ballooned to 853 the next year. Interest in addressing this new disease was less urgent than when it was perceived that it only affected men who were having sex with other men. This was a gay problem.
After it was realized that others that were not gay also exhibited symptoms, the CDC coined the name Acquired Immune Deficiency Syndrome (AIDS) in August of 1982. The name change did not help the public perception that this was a gay disease.
This perception was bolstered by the fact that 40 of the documented cases in 1983 had sexual contact with one gay man – or someone else that had sexual contact with him. That man was flight attendant Gaetan Dugas, or so-called Patient Zero. It was later determined Dugas was not the original person that brought AIDS to the United States, but he has been maligned in the media for years.
And the band played on
During the ’80s, AIDS became a nationwide crisis in the gay community. As gay men were dying at alarming rates, the government response was tepid. Information about HIV, the virus that causes AIDS, was spotty and often inaccurate. Initially, many gay men had no idea how HIV was transmitted. There were all kinds of wild theories on the streets: it was caused by using poppers, you could not get it from performing oral sex, and only bottoms got infected.
The recommendation from many in the health community was gay men should stop having sex. It was an unrealistic expectation which led to a fatalistic attitude among many in the community: “I am going to contract HIV. It is inevitable.”
When the government should have been spending extensive resources to investigate HIV, nothing was happening. In fact, President Reagan had not even uttered the word “AIDS” until he was forced to address a question by a reporter in September of 1985.
This lack of government response forced the LGBT community to address the problem itself. Organizations like the Gay Men’s Health Crisis were formed to help care for those dying from the disease and to provide funding for prevention education and research.
Gay men continued to die in alarming numbers and more organizations were formed to care for those afflicted with HIV and AIDS. One of the earliest and most effective was the AIDS Action Committee (AAC) of Massachusetts.
In 1984, a handful of the nation’s community-based AIDS service organizations came together to create a united voice to educate and engage elected officials. AIDS Action was created to forge a coordinated national response to AIDS and to ensure that the federal government responded.
The crisis finally got a national face with the death of Rock Hudson in 1985. Hudson’s death put a famous face on AIDS and ushered in a period where the crisis would become front and center in the media. Even with the increased media coverage, many in the broader community still believed it was “gay cancer” and were not concerned.
In response to Hudson’s death, Elizabeth Taylor was one of the first celebrities to step forward to help those in the LGBT community suffering from the disease. She co-founded the American Foundation for AIDS Research (AmFAR). Joan Rivers was another celebrity to help when acknowledging the disease was taboo in Hollywood circles.
Activists in New York, Los Angeles and San Francisco were compelled to take drastic actions due to a lack of response by the Reagan administration. In 1987, Larry Kramer, who had started Gay Men’s Health Crisis, founded AIDS Coalition to Unleash Power (ACT-UP). ACT-UP was a direct action political activist organization that staged infamous protests to draw attention to AIDS and the lack of attention by the federal government.
ACT-UP infamously closed down the Food and Drug Administration (FDA) with one of its direct action protests. The organization was quite media savvy, which helped get out its message that drug companies were overcharging for new medications and the federal government was not dedicating enough resources to the pandemic.
By the end of the ’80s, more than 700,000 people were infected with HIV in the United States. More than 28,000 people died of AIDS in 1989. Gay men in major urban gay areas were the hardest hit, but the pandemic was beginning to be seen even in smaller cities.
Governmental, legislative and medical progress
While AIDS was spreading, ignorance about the disease and fear of those with HIV was prevalent throughout the country. Ryan White, a 13-year-old boy who had contacted the disease from a blood transfusion in 1984, helped draw attention to the discrimination that people with HIV experienced.
White’s school refused to let him return after his HIV diagnosis. White was one of the first non-gay faces of the disease and was considered an “innocent” victim and poster boy for the disease. He became a national spokesperson for those living with HIV and AIDS.
In 1986, the Reagan administration began to address the pandemic with $15 million in grants to cities hit hardest by the crisis. President Reagan announced the President’s Commission on the HIV epidemic in 1987. The first HIV drug treatment, AZT, also debuted the same year.
Due to the efforts of groups like ACT-UP, the AZT Reimbursement Program was introduced to help offset the cost of treatments for those with no insurance and lower income individuals. Other government initiatives addressed pediatric AIDS and the epidemic outside of urban centers. Finally in 1990, four months after his death, Congress passes the Ryan White Care Act to allocate $220 million in funding for various assistance programs.
That same year, more than 100,000 people, largely gay men, had died from AIDS in the United States.
Progress was being made in terms of government response and there were also medical advances. AZT proved to extend the life of those affected by HIV and to delay the onset of full AIDS. Unfortunately, some patients developed drug resistance after being on AZT for an extended time.
By 1997, combination drug therapies were introduced that improved the efficacy of the medications and reduced drug resistance. New combinations continued to be introduced and HIV-infected people began to live significantly longer. HIV was no longer a death sentence. In some people, the virus became virtually undetectable.
The horizon
Practicing safe sex and getting tested regularly is the best precaution against contracting and spreading HIV. However, there is promising news about a potential cure, as well as a vaccination against infection.
On the vaccination front, two antibodies were identified in 2009 that effectively and broadly neutralized HIV. While this is promising as it relates to the development of a vaccine, years of additional research and testing are required before anything would be available to the general population. The long-term investments started decades ago are showing distinct promise today.
Doctors in Berlin are using the word “cure” when referring to a patient that was injected with HIV resistant stem cells during treatments for Leukemia. Four years later, the formerly HIV positive man has no traces of the virus in his body. This is different from saying the virus is undetectable. Biopsies were taken of his organs as part of his leukemia treatment and the HIV virus was not present, so his physicians say he is cured. The result has not been replicated in any other leukemia patient.
Apathy
With people living significantly longer, new drug therapies and whispers of a cure, apathy toward AIDS is becoming rampant. The gay community has let down its guard. This apathy has led to increasing infection rates in the LGBT community.
Last September, the CDC reported “The rate of new HIV infection in the U.S. is increasing among only one risk group: gay, bisexual and other men who have sex with men (MSM). More than half (57 percent) of those with new HIV infections in the U.S. each year and more than half (53 percent) of people living with HIV in the U.S. are gay or bisexual men or MSM who inject drugs.”
Many in the LGBT community do not know their HIV status; this is particularly the case for gay men under 30 and ethnic minorities. Programs by Family Health Centers of San Diego, and the UCSD’s new Lead the Way campaign, strive to increase HIV testing and education while decreasing HIV infection in the San Diego LGBT community.
The result with the one patient in Berlin has refocused worldwide efforts to find a cure, instead of just a vaccine or better medications. Thirty years into the crisis and we may be at the beginning of the end, yet the disease is still a deadly force.
