HIV/AIDS in New York City

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. 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. 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 AIDS Coalition To Unleash Power. Poster features a pink triangle against a black backdrop. 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. 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. 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." 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. 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. When Judge Hyman made his decision, he approved the policy that CWA were not to be excluded from attending school, while scrutinizing the policy as a "secret". He further criticized the medical field as professionally irresponsible for causing mass hysteria. Frederick A.O Schwarz, Jr., whom was the City Corporation Counsel, defended the City's policymakers because they "acted in a way that reflected the pressure of time." When the program started, New York City police commissioner Ben Ward sought to avert police harassment of drug users making Joseph's intent of AIDS prevention known to police precincts. Development of these programs were slowed by opposition from a range of government officials and communities and Commissioner Ward later suggested the possibility of unethical practices that recalled the Tuskegee syphilis experiment. Joseph credited activists such as Yolanda Serrano, the head of the Association for Drug Abuse Prevention and Treatment (ADAPT) for calling attention to how the problem of addiction was far less dire than the overwhelming number of deaths from the rapidly spreading AIDS epidemic. Housing The housing needs of New Yorkers were also seriously affected by the HIV crisis. For example, Mayor Dinkins who was previously Manhattan Borough President, intended to place people with HIV/AIDS into city-run shelters, not permanent housing as he had promised earlier. However given the gravity of the health and social needs of people with HIV, the City Council urged Mayor Dinkins to establish dedicated services. Despite the ruling of United 21 et al vs City of New York, which repealed Mayor Koch's Executive Order 50 on affirmative action, the Council also called on teaming with religious communities and other city agencies in order to establish residences for people with HIV/AIDS as they were regularly segregated in hospitals and did not receive adequate care. Mayor Edward Koch, Dinkins' predecessor, realized the need for housing for people with HIV/AIDS. However, he did face opposition by some anti-homelessness nonprofit organizations. Nonetheless, Koch wanted to utilize federal funds from HUD to establish homes especially for people with HIV/AIDS. He did reach out to nonprofits despite the opposition in order to find suitable places or residences. In the meanwhile to address the rising foster child crisis, Koch created a rent subsidy program for those housing foster children as he established HIV testing program for such children. On top of the desperate need for raising wages for health care workers, there was also the persistent need for funding hospitals. Mayor Koch raised rates for 24-hour home care attendants through the Board of Estimate because the NYC Human Resources Administration was unwilling to regulate contractual labor agreements. Mayor Koch increased wages by 20%, with weekend employees having the largest increase. With the building of new dedicated housing for people with HIV/AIDS, the increase would have employed more home health aides. This was made possible with the reimbursement by New York State and Federal governments. Meanwhile, Deputy Mayor Brezenoff assured the future Mayor Dinkins that the City's in rem program would allow the City to house households and people with HIV/AIDS. Dinkins welcomed the news, but however, requested that families are given first consideration and to double what was allotted. Koch then assured Dinkins that the City will reimburse health assisted housing and at-home nursing programs in order to made sure that housing was first stable before building new ones. In addition to the promise and demand of using more in rem properties converted into permanent housing, there was the issue of decaying buildings and management needed to address them. Besides using in-rem properties, the City received proposals by not-for-profits in order to house people with AIDS. This included, in one example, a conversion of a mansion into a facility to assist children with AIDS being housed with their parents, hospice care, and group residency within one property. There were also further calls for using hotel accommodations for single adults who did not require hospitalization. == Comparison with San Francisco ==

No two cities were more prominent in the battle against AIDS in the 1980s than New York and San Francisco. The majority of people who had AIDS came from these two cities. Some gay activists like Richard Dunne from New York's Gay Men's Health Crisis believed comparisons between the two cities were of limited value because their governments handled the matter very differently, but argued nonetheless that San Francisco managed the matter more effectively. Mayor Edward Koch and New York City Commissioner of Health David Sencer believed that demographics played a key role in how New York City handled AIDS. Stephen C. Joseph, who succeeded Sencer as the commissioner, agreed that these two cities should not be compared because of the great difference the population of the two cities and that New York saw a great number of cases due to intravenous drug use. Early in the crisis, many critics in New York looked to San Francisco because San Francisco was the only other major city that confronted multiple deaths from AIDS. The Center of Disease Control (CDC) reported the first case of AIDS in the country in 1980, Ken Horne, a San Francisco resident. On June 13, 1985, Victor Botnick reported 932 cases of AIDS in San Francisco. "Gay Disease" AIDS was initially viewed as a "Gay Man's Disease" because of the high incidence of gay men getting the disease. As a result, many in New York looked at San Francisco as a point of comparison because since the late 1960s, San Francisco had been the premier gay community in the country. The gay connection, however, did not mean that the two cities were completely similar. The New York gay community believed that San Francisco was educating the gay community better and providing more resources to combat the disease. Many then became more vocal about wanting New York to adopt some of the same programs and resources as San Francisco. New York City Government responds As the public debate continued about what the two cities were doing, many government and community leaders in New York such as Councilwoman Carol Greitzer claimed that San Francisco had been spending more money on AIDS patients, particularly for counseling and housing. Greitzer wanted Mayor Koch to create a committee that would work on trying to establish a hospice for people with AIDS. Primarily focusing on patient care after being in the hospital, Greitzer noted that the reason why things were being run differently in San Francisco were because "there's a lot more counseling in San Francisco on a one-to-one basis. There's a lot more education not only of the gay community, but I think of the general public [as well]." Dunne noted that the reason why it was so limited was because "San Francisco is a much smaller city, with a tradition of a strong gay political presence, a less complex epidemiology of AIDS, an excess of hospital beds and a budget surplus at the beginning of the AIDS epidemic." Jones also claimed that "In 1982, the average number of new AIDS cases reported in New York was 31 cases. [However] in the first five months of 1987, the average number of new cases reported was 302 cases per month." New York government programs Among all the debate about what the city should be doing, New York City Commissioner of Health David Sencer talked about who was getting the disease at the time and how that affected the way New York had handled it. Sencer stated that because AIDS had been a disease that, up to that point, had affected young individuals, the city did not have the system necessary to take care of them. Instead its system had been geared towards taking care of the elderly, who had nursing homes and home health care ready for them. However, as the problem grew larger, Sencer stated how "[s]uddenly we have a group of people with a chronic illness that comes and goes and it's difficult to develop the right kind of home care for these people. This has [be]come confounded by the fact that there's still unfortunately a fair amount of unsaid discrimination against people with AIDS, whether they be drug abusers or gay men. And it's difficult to get them into nursing homes. It's difficult to find housing for these individuals." ==Timeline of key events in NYC (up to 1989)==

;1977 • Donna Mildvan, chief of Infectious Disease at Beth Israel Hospital, and colleague Dan William draw a connection between symptoms seen in gay male patients • The first evidence for HIV-1 infection among IV drug users in New York City is from three cases of AIDS in children born in 1977. This likely mother-to-child transmission within Manhattan "strongly suggests that the introduction of HIV-1 into the IV drug-use group occurred around 1975 or 1976, or perhaps even earlier." ;1979 • Donna Mildvan identifies reports of a virulent diarrhea that is called Gay Bowel Syndrome ;1981 • New York City Infectious Diseases Intercity Rounds records first cases of gay-related immunodeficiency diseases Lawrence D. Mass publishes a report in the newspaper, New York Native, about the spread of a mysterious disease, and warning gay men that the disease was being spread as a result of having frequent sex with other men. Kaposi's sarcoma is thought to be the main problem • Lawrence Mass, Larry Kramer and others form the Gay Men's Health Crisis (GMHC), the first New York City nonprofit devoted to provide services to people with AIDS ;1982 • February: Health Commissioner David Sencer listed increasing rate of Kaposi's sarcoma fourth in the city's health department priority list • February: When asked by a reporter for the New York Native if news of the epidemic would be communicated via mass media, Sencer declines • Findings in a report by Sencer and U.S. Center for Disease Control show that over half the 225 cases in Kaposi's sarcoma in the United States by January 1982 happened in New York • The Center for Disease Control gives AIDS (Acquired Immune Deficiency Syndrome) its name • GMHC holds the first benefit to collect funds for the epidemic • Rodger MacFarlane, president of GMHC, begins an AIDS hotline in his own apartment • GMHC co-founder Larry Kramer became a public spokesperson known for comments made to the press, including sharp criticisms of Ed Koch and David Sencer for their lack of action • Michael Lange was of one of the first to outline the disaster that lay ahead. • David Sencer tells Lawrence Mass that gay health would soon be his top priority but insisted on keeping the focus on preventative medicine; did not consider Kaposi's sarcoma important enough to ask for additional funds. Sencer changes his mind on the importance of Kaposi's sarcoma after attending first citywide meeting of Kaposi's sarcoma researchers • New York City mayor Ed Koch declines to meet with activists • Congress allocated US$2.6 million for CDC AIDS research but the Reagan administration opposed these measures ;1983 • New York City virologists Mathilde Krim and Joseph Sonnabend found the AIDS Medical Foundation (AMF). It later becomes the American Foundation for AIDS Research (amfAR), and is still active today • Larry Kramer writes the article "1,112 and counting" for the New York Native, where he viciously attacks Mayor Koch and city's health department for being ineffective • Mayor Koch and David Sencer announce the formation of an office for Gay and Lesbian Health Concern under director Roger Enlow • June: Mayor Koch joins San Francisco mayor Dianne Feinstein, Washington mayor Marion Barry, and New Orleans mayor Ernest Morial to push a resolution through the U.S. Conference of Mayors calling for "government assurance of adequate medical, hospital, and hospice care for victims of AIDS" as well as more funding for medical research. The four big-city mayors fight off opposition from three cabinet members dispatched by the Reagan administration to oppose the resolution and declare AIDS a local responsibility and other major newspapers nationwide publish over 650 stories between December and April. Coverage included shortfalls of resources for AIDS research and education in NYC, and how the response in San Francisco was more effective • Mathilde Krim plans to meet with New York City officials (Carol Bellamy, who did not see her, and Andrew Stein) to discuss a proposal for a coordinated city response based on San Francisco programs. Krim described the attitude as ineffectual: "nobody gave a damn" • Decision in the trial The People v. West 12 Street Tenants Corporation in favor of Joseph Sonnabend due to discrimination. New York becomes known as the nation's center for aggressive civil liberties litigation on behalf of people with AIDS and their circles • Advocates for AIDS research in 14th Annual Lesbian and Gay Pride Parade attack sensationalist approaches from the press, asking for research, not for hysteria • NYC accounts for more than half of AIDS deaths and new infections in the country • New York State establishes an AIDS Advisory Council • Koch meets with the AIDS Network to discuss efforts to mobilize agencies to fight AIDS. Koch allows for the selling of a city-owned building, formerly the Food Trades Vocational High School at 208 West 13th Street to AIDS organizations on "favorable terms". • August: Secretary Margaret Heckler announces her support for transferring $40 million in federal funds to AIDS research. In her announcement, she is accompanied by Koch since in 1983 New York City was the site of 42% of reported AIDS cases • The Centers for Disease Control asks GMHC to assist them in creating public conferences on AIDS • November: Ronald Reagan is re-elected as president. AIDS was not addressed in the campaign ;1985 • Koch wins a third term. After the election, Koch and Governor Cuomo work to close the gay bathhouses • Mildvan recorded hearing an estimate that one million people in the world at that time might be harboring the HIV retrovirus • April: Kramer's play The Normal Heart opens at Joseph Papp's Public Theater, starring D.W. Moffett, Phillip Richard Allen, Brad Davis and Concetta Tomei It is nominated for a Tony award and wins one for a revival in 2011 • As a result of the play, Koch responded by claiming that the city was spending US$31 million a year on AIDS (most of that money paid for care for AIDS patients in city hospitals and did not represent new spending), and he announced a US$6 million increase in city AIDS funding, with new programs for subsidized housing, home care, added resources for acute at hospitals, better coordination of medical teams, and educational program, hospice care, and more research funding. • No longer trusting Sencer, Koch names Victor Botnick co-chair of the AIDS Policy and Planning Committee • The New York State Department of Health publishes a survey of maternal infection that indicates that 1 of every 61 women giving birth is infected with AIDS compared to one out of 749 in the rest of the state; prevailing in areas of poverty and minority residents (higher in the Bronx than on Staten Island) == See also ==