+ HIV/AIDS deaths in NYC by year, 1981–2014 New York City was affected by the AIDS epidemic of the 1980s more than any other U.S. city. The AIDS epidemic has been and continues to be highly localized due to a number of complex socio-cultural factors that affect the interaction of the populous communities that inhabit New York.
During the 1980s epidemic, the large presence of the gay community prompted local medical practitioners to take note of and respond to observed patterns of reported ailments early on. Widespread fear and panic about the epidemic were combatted by efforts of community activists and local government policies that were at some times supportive, and at other times damaging or ineffectual.
Improvements of both drug therapies and prevention education have led to a decreased number of AIDS cases. In June 2014, then-New York Governor Andrew Cuomo announced a new strategy designed to "End the Epidemic" in the state through a combination of increased HIV screening and testing, promotion of pre-exposure prophylaxis (PrEP) and improved linkage and retention in clinical care for HIV-positive persons. Two years later the New York City Department of Health and Mental Hygiene reported a decline in new infections of nearly 8 percent annually or approximately 15% since the campaign was launched.
Medical research
First response
Michael Simberkoff, chief of staff of the Department of Veterans Affairs New York Harbor Medical Center, was a member of the Infectious Diseases staff in 1980 and was one of the first medical researchers to treat AIDS patients. According to Simberkoff, at first the outbreak was identified as a "gay-related immunodeficiency disease" that his group knew very little about and did not know how to treat. The Infectious Diseases community began to get together on a regular basis at the VA New York Harbor Medical Center and at the New York Department of Health to share their experiences. Soon it became clear that gay men were not the only ones who had the disease; intravenous drug abusers also appeared to get infected.
In 1983, the virus that causes AIDS (Acquired Immune Deficiency Syndrome) was identified and labeled as Lymphadenopathy Associated Virus (LAV) by Luc Montagnier at the Pasteur Institute in Paris. In 1984, it was also identified by Robert Gallo of National Cancer Institute and named the Human T-cell Lymphotropic Virus (HTLV III). There was a conflict as to who first identified the virus, but it was resolved in a joint agreement. The virus was later renamed Human Immunodeficiency Virus (HIV).
First drug The first drug used to treat HIV was called AZT which was later known as zidovudine. It was made by Burroughs Wellcome. The clinical trials of the drug were conducted at several VA hospitals, including those in New York, Miami, Los Angeles, San Francisco, and Washington, D.C. At the time of its release, it was the most expensive drug ever made, at $10,000 for a year of treatment.
Gay community response
The early history of the AIDS epidemic in New York City began with early rumors in 1981 of a "gay plague". Because AIDS first emerged among populations considered marginal by many mainstream residents of New York City, including prostitutes, drug users, and men who had sex with men, early responses to the disease were uneven and underfunded. Federal government response caused a delay in the wider recognition of the extent of the problem. As late as 1986, the Reagan administration continued to discourage panic by saying that AIDS primarily affected gay men and intravenous drug users.
During this early period, New Yorkers were not sufficiently informed about the disease: how you could get it, who could get affected, and the consequences of it. It was first described as being a rare form of cancer, called Kaposi's Sarcoma.
The gay community organized a response to the epidemic through four stages: the development of community-based help and advocacy organizations such as the Gay Men's Health Crisis (GMHC); the evolution of broader advocacy, lobbying and funding organizations such as the American Foundation for AIDS Research; the formation of effective Washington lobbying groups; and the rise of militant activism exemplified by the radical tactics of ACT UP (AIDS Coalition To Unleash Power), which have been documented in over 180 interviews by the ACTUP Oral History Project.
Health and gay rights organizations, such as GMHC, worked on raising awareness. One of GMHC's strategies was setting up counseling tables in bathhouses. Jerry Johnson, the program's former leader found that half of the people who approached him were ignorant about the spread of the disease. The government then started to create initiatives to educate the population about reducing risk.
Education and support for risk reduction Around 1985, public and private institutions started to create programs to educate the population. They began to hold informational meetings and public forums, distribute literature, and started outreach efforts such as a hotline for counseling and referrals. The HTLV-III Hotline started operating in 1982, offering counseling services for persons with AIDS. The hotline staff met with social service providers, the New York State AIDS institute, the New York Blood Center and the Hemophilia Foundation in order to coordinate resources for post-test counseling programs. Evidence of 623 calls received during the period of April 20, 1985, to May 24, 1985, demonstrated the effectiveness of this program.
By June 10, 1985, the GMHC developed a contract to deliver comprehensive education of high risk gay men and youth in order for them to offer counseling and open more offices in the Bronx and Brooklyn, so more people could receive their services. This plan cost approximately $83,000 in the fiscal year 1986.
AIDS and New York Art Communities Arts and creative organizations were particularly active and visible in the community efforts around AIDS. Some grew out of existing organizations. The Alliance for the Arts began an influential initiative called Estate Project for Artists with AIDS. The Estate Project supported artists, filmmakers, composers, and choreographers with AIDS in preparing their archives, organizing and preserving artworks, giving grants, and running a program that presented musical and dance performances. They also published an information brochure, Future Safe: Estate Planning for Artists in a Time of AIDS, distributing 100,000 copies.
The organization Visual AIDS began in 1988 with the mission of highlighting the work of artists who had or had died from complications related to AIDS. Their first Day Without Art: A National Day of Action and Mourning, December 1, 1989, involved art museums and galleries around the country who altered their regular installations to illustrate the impact AIDS was having on the visual arts.
An effort to identify artists who had died from AIDS-related complications was started in 1989 by gallerist Simon Watson and art critic Jerry Saltz. With the Witness Project, they mailed out census-style slips to be distributed like chain-letters and returned with names of those who had died to be recorded. In the design world, Design Industries Foundation for AIDS (DIFFA) raised money for designers coping with AIDS, holding celebrity-studded gala dinners as early as 1988.
Government response
Funding
In 1981, the New York City government was not prepared to deal with this health emergency, as the city was just recovering from the fiscal crisis of the 1970s, when Mayor Ed Koch took office. At the beginning of the epidemic there was no funding from either federal or city government. As Jonathan M. Soffer argues, "the ultimate blame for devastation of the city in the 1970s lies in Washington and the anti-urban administrations of Gerald Ford, Jimmy Carter, and Ronald Reagan." It was the community organization Gay Men's Health Crisis (GMHC) that began raising funds to deal with this new disease by holding the first benefit to collect funds for the epidemic in 1982.
Only in the late 1980s did the city government fully put forth an effort to address the issue. This was largely because Health Commissioner Stephen Joseph took office in 1985, replacing David Judson Sencer, who was criticized for not taking action during his term. There were individuals such as Larry Kramer, one of the organizers of GMHC, who were outspoken about their dislike towards Mayor Koch and his office, especially in regards to Sencer. Kramer even claimed that "the mayor of New York is helping to kill us." Judge Joseph Lisa who was on the City Council claimed there was no active effort to respond to the spread of the disease from the Health Commissioner until Sencer stepped down and Joseph took over: "he [Sencer] wasn't, in my opinion, the kind of health commissioner that we needed in the epidemic. Joseph, on the other hand, was much stronger." Joseph was responsible for beginning of the Needle Exchange Program, even though many civic groups were against the idea: the police, black community leadership, even the publisher of the New York Amsterdam News, who declared that "when the first needle is given out, Joseph should be arrested for murder."
Thus the government's role during the AIDS crisis was seen as being more reactive than proactive, as described by members of the medical community such as Jo Ivey Boufford, who saw that very few programs were being funded for AIDS prevention. When Boufford became president of the NYC Health and Hospitals Commission in 1985, five years after the AIDS crisis had hit New York City, her first task was to develop a primary care strategy for AIDS patients. Boufford's team encountered several problems: since governmental involvement had been delayed, doctors had to deal with terminally ill patients; the disease was still being viewed as a homosexual disease, so prevention and advertising was very limited; perhaps most importantly, funds were being used reactively instead of proactively.
In a sense, Boufford reported, the HIV crisis transformed the care system, including housing, support, primary care, and coordinated care management, more than any previous medical crisis. She also explained that the hospitals had to become more like a family doctor rather than an ambulatory care system. When it came to funding, the New York City Health and Hospitals Corporation (HHC) also had to make sure that the investments coming in were strengthening the system, especially because, as Boufford explained, "we tend to fund acute care hospitals in the United States, and we're very hospital-oriented, very specialty-oriented country in terms of our investments ... we're over invested in acute healthcare." On June 17, 1985, a meeting with voluntary hospitals was held to establish joint procedures for working with AIDS patients. The HHC began employee training programs, and created videos, discussions guides and booklets. The HHC also established protective guidelines for employees.
The NYC Department of Health (DOH) began outreach efforts including production of 5,000 HTLV-III flyers that were printed and distributed to community organizations. In May 1985, the AIDS Education Unit hired a Health Educator and Graphic Design Consultant. HTLV-III AIDS wallet cards and fact sheets began to be produced and distributed. Also, in May 1985 the New York State Association of Substance Abuse Agencies held a meeting to discuss the implementation of seminars and conferences. A planning committee was formed on June 30, 1985, and Commissioner Sencer led a meeting with substance abuse experts at the DOH on how best to educate the substance abuse community about the risk of acquiring AIDS.