32 YEARS AND COUNTING: New Exhibit Highlights in the Early Years of HIV/AIDS in New York City

Images provided by The New-York Historical Society

The early history of the AIDS epidemic in New York City—from the first rumors in 1981 of a “gay plague” through the ensuing period of intense activism (ACT-UP), clinical research, and political struggle—will be the subject of a major new exhibition at the New-York Historical Society (170 Central Park West, New York, NY 10024), AIDS in New York: The First Five Years, on view from June 7 through September 15, 2013.

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At the beginning of the 1980s, various reports began to emerge in California and New York of a small number of men who had been diagnosed with rare forms of cancer and/or pneumonia. The cancer, Kaposi’s Sarcoma, normally only affected elderly men of Mediterranean or Jewish heritage and young adult African men. The pneumonia, Pneumocystis Pneumonia Carinii (PCP), is generally only found in individuals with seriously compromised immune systems. However, the men were young and had previously been in relatively good health. The only other characteristic that connected them was that they were all gay.

It now seems clear (and has been proven) that HIV, the human immunodeficiency virus itself, has been around for decades, conceivably even for centuries. We may also never know when HIV first crossed over from its original animal hosts. But when one is thinking of “AIDS” — Acquired Immunodeficiency Syndrome — as a medical construct, a classification created by medical and public health authorities, it becomes easy to pinpoint the specific day on which AIDS first came into view: June 5, 1981.

On that day, of course, no one had ever heard of HIV or of AIDS (which was first known by several other names particularly GRID – Gay-Related Immune Deficiency). Previously, throughout the 1970s, small numbers of people had been dying from HIV-related causes, one at a time, here and there. But such deaths were rare enough and random enough for no real pattern to emerge. And so, it was not until mid-1981 that the epidemic first reached proportions large enough for it to be picked up by the public health monitoring and surveillance system.

Gay Protesters on Gay Pride  - July 1985, Manhattan, New York City, New York State, USA --- Protesters hold a red sign reading "Fighting for Our Lives" during a Gay Pride Day march along Manhattan's Fifth Avenue. --- Image by © Owen Franken/CORBIS

Gay Protesters on Gay Pride – July 1985, Manhattan, New York City, New York State, USA — Protesters hold a red sign reading “Fighting for Our Lives” during a Gay Pride Day march along Manhattan’s Fifth Avenue. — Image by © Owen Franken/CORBIS

It thus came to be that on June 5, 1981 the Center for Disease Control and Protection publication Morbidity and Mortality Weekly Report (MMWR) included a nondescript article entitled simply “Pneumocystis Pneumonia — Los Angeles.” Based on cases from Drs. Michael Gottlieb and Joel Weisman, this is the so-called “Document Zero” of the AIDS epidemic, the one from which all others proceed.

In the period October 1980-May 1981, 5 young men, all active homosexuals, were treated for biopsy-confirmed Pneumocystis carinii pneumonia (PCP) at 3 different hospitals in Los Angeles,” began the article.

Pneumocystis pneumonia in the United States is almost exclusively limited to severely immunosuppressed patients,” continued the article, in the first signal of things to come. “The fact that these patients were all homosexuals suggests an association between some aspect of a homosexual lifestyle or disease acquired through sexual contact and Pneumocystis pneumonia in this population . . . . [raising] the possibility of a cellular-immune dysfunction related to a common exposure that predisposes individuals to opportunistic infections.”

The article then went on to recount the five case histories, which encapsulate an early history of the sudden, ferocious impact of AIDS. A “previously healthy 33-year old man” developed PCP and oral candidiasis, dying May 3, 1981. Another 30-year-old man was diagnosed with PCP after “a 5-month history of fever each day and of elevated liver function tests“; yet another had esophageal and oral candidiasis. And a 29-year-old man, who three years earlier had battled Hodgkin’s disease, died in March 1981. The last, at age 36, had cytomegalovirus (CMV) infection and a “4-month history of fever, dyspnea, and cough.”

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What might have been seen as an obscure, easily forgotten medical footnote became more troubling a month later when the July 3, 1981 issue of MMWR reported yet another trend: “During the past 30 months, Kaposi’s sarcoma (KS), an uncommonly reported malignancy in the United States, has been diagnosed in 26 homosexual men.” The article also indicated the diagnosis of 10 additional cases of pneumonia among gay men in Los Angeles and the San Francisco Bay Area. And so it noted, dryly, that “physicians should be alert for Kaposi’s sarcoma, PC pneumonia, and other opportunistic infections associated with immunosuppression in homosexual men.”

A group advocating AIDS research marches down Fifth Avenue during the 14th annual Lesbian and Gay Pride parade in New York, June 27, 1983. Mario Suriani/Associated Press

A group advocating AIDS research marches down Fifth Avenue during the 14th annual Lesbian and Gay Pride parade in New York, June 27, 1983. Mario Suriani/Associated Press

The issue burst into the forefront of the new when The New York TImes, on July 3, 1981, published the first report of the illness in an article entititled “RARE CANCER SEEN IN 41 HOMOSEXUALS“, written by Dr. Lawrence K. Altman, which opened with “Doctors in New York and California have diagnosed among homosexual men 41 cases of a rare and often rapidly fatal form of cancer. Eight of the victims died less than 24 months after the diagnosis was made.” Buried on the inside of the first section of The Times on page A20, the article none the same, was the shot heard around the world and the opening of what has become one of the more storied medical fights in the annals of medical history.

From the outset, AIDS was associated with a high level of stigma and discrimination. This prejudice arose in part because AIDS was linked to groups, such as gay men and intravenous drug users, that were already highly stigmatized, but also because evidence-based information about what was causing AIDS, and how it might be passed on, was in short supply.

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For a while, the American government completely ignored the emerging AIDS epidemic. In a press briefing at the White House in 1982, a journalist asked a spokesperson for President Reagan “…does the President have any reaction to the announcement – the Center for Disease Control in Atlanta, that AIDS is now an epidemic and have over 600 cases?” The spokesperson responded – “What’s AIDS?” To a question about whether the President, or anybody in the White House knew about the epidemic, the spokesperson replied, “I don’t think so”.

An entire political movement grew up around the silence of the Reagan administration. The AIDS activist movement took as its call to action ‘silence equals death’ because literally the silence of the Reagan administration was resulting in the deaths of thousands and thousands of gay men in our communities across the country.” – Sue Hyde, National Gay and Lesbian Task Force

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While the government failed to respond to the epidemic, a number of non-governmental organizations were founded in the most affected areas of the USA such as The Kaposi’s Sarcoma Research and Education Foundation in San Francisco (later renamed the San Francisco AIDS Foundation) and, in New York, Gay Men’s Health Crisis (GMHC). In 1982, GMHC distributed 50,000 free copies of its first newsletter about the syndrome to hospitals, doctors, clinics and the Library of Congress.

David Emfinger. Fighting for our Lives: An AIDS Candlelight March, May 2, 1983. New-York Historical Society

David Emfinger. Fighting for our Lives: An AIDS Candlelight March, May 2, 1983. New-York Historical Society

On 17th September 1985, President Ronald Reagan publicly mentioned AIDS for the first time, when he was asked about AIDS funding at a press conference: “I have been supporting it for more than 4 years now. It’s been one of the top priorities with us, and over the last 4 years, and including what we have in the budget for ’86, it will amount to over a half a billion dollars that we have provided for research on AIDS in addition to what I’m sure other medical groups are doing”.

Critics were quick to ask why, if AIDS had been a ‘top priority’ among the government, the president had not mentioned it in public before. President Reagan refused to advocate safer sex and condom use, choosing instead to press for a ban on HIV positive immigrants entering the country, then later sexual abstinence, as the keys to preventing the epidemic. On 3rd October 1985, the actor Rock Hudson, a close friend of Nancy and Ronald Reagan (and a regular visitor to the White House), died of AIDS. He was the first major public figure known to have died from an AIDS-related illness.

AIDS in New York: The First Five Years

With a wealth of materials drawn from New-York Historical Society’s archives as well as the archives of the New York Public Library, New York University, and the National Archive of LGBT History, the exhibition will use artifacts including clinicians’ notes, journal entries, diaries, letters, audio and video clips, posters, photographs, pamphlets, and newspapers to revisit the impact of the epidemic on personal lives and public culture in New York City and the nation.

Parents demosntrating against AIDS in school (preventing kids with AIDS to attend school in front of the New York City Board of Education at 110 Livingstone Street in Brooklyn September 1985

Parents demosntrating against AIDS in school (preventing kids with AIDS to attend school in front of the New York City Board of Education at 110 Livingstone Street in Brooklyn September 1985

For those who lost partners, children, siblings, parents, and friends, the memory of the fear and mystery that pervaded New York at the beginning of the AIDS epidemic remains vivid,” said curator Jean S. Ashton. “For many people today, though, these years are now a little-understood and nearly forgotten historical period. Yet the trajectory of HIV/AIDS changed paradigms in medicine, society, politics, and culture in ways that are still being felt, and the disease remains with us, affecting some 100,000 New Yorkers and more than one million Americans today. This exhibition explores a history that we continue to live.”

The exhibition will begin by recalling life in New York in the pre-AIDS period, especially the exhilarating sense of artistic and sexual freedom that followed the 1969 Stonewall Riots, which establishes the social and political context for the earliest reports from medical professionals of the physical decline and deaths of previously healthy young people afflicted with diseases usually found only in the aged. This section will feature the personal stories of the first AIDS patients and their caretakers and give voice to the doctors who cared for these patients. Because more than 80 percent of those infected were homosexual males, rumors of a “gay plague” circulated. Anchor objects in this area of the exhibition include a copy of the national medical bulletin Mortality and Morbidity Weekly Report that first mentioned the disease, the July 3, 1981 New York Times article that was the first national media story, and a variety of reports published in the gay press.

Koch, Sencer and Enlow announcing new office of Gay and Lesbian ConcernsMunicipal Archives3/9/1983	Municipal Archives, Edward I. Koch collection	EIK 08.010.0845; Shelf loc: MA078

Koch, Sencer and Enlow announcing new office of Gay and Lesbian Concerns Municipal Archives 3/9/1983 Municipal Archives, Edward I. Koch collection EIK 08.010.0845; Shelf loc: MA078

As cases of this new epidemic were discovered outside the gay community, in heroin drug injectors, babies, and people who had had blood transfusions, the challenges posed to researchers and those caring for the sick intensified. Racing at once to discover the possible cause or causes of the disease in order to contain its spread and to alleviate the social and political impact of the growing rate of infection and death, scientists, social workers, and members of the affected populations and their friends struggled together to raise funds and influence research priorities. By the middle of 1983, responses from the community, including increasingly militant victims of the disease, began to take shape to demand support for social services and raise new monies for research. In New York, even more than elsewhere, AIDS was a political issue, pitting the Mayor against a vocal constituency that demanded action.

The second section of the exhibition will explore the impediments that prevented any quick solution to the growing problem. An epidemic of fear swept the city, fueled by rumors and stoked by exploitative news coverage, as funeral directors refused to embalm the bodies of AIDS victims, parents protested the admission of AIDS victims to public schools, and some hospitals refused to admit people suffering from the disease.  It soon became clear that the spread of AIDS resulted from the exchange of bodily fluids, primarily blood and semen, and that it could not result from casual contact. Yet the general panic was slow to subside.  “Safe sex” recommendations, restrictions on blood donations, and the closing of bathhouses appeared to threaten the social and cultural identity that members of the gay community had spent the previous decade trying to assert. This section of the exhibition will use excerpts from contemporary news broadcasts and interviews to establish the climate of anger and distrust that would in later years be transformed into activism, as well as early responses by medical ethicists, civil liberties lawyers, and religious organizations that worked to establish networks of support.

First AIDS memorial ServiceLee Snider1983	NYU Libraries; Fales Library and Special Collections. Lee Snider Photograph Collection	MSS 248; Series 1, Box 1

First AIDS memorial Service Lee Snider 1983 NYU Libraries; Fales Library and Special Collections. Lee Snider Photograph Collection MSS 248; Series 1, Box 1

The Anvil, Self-Induced ClosureLee SniderNYU/Fales; Lee Snider Collection	MSS 248; Series 1,Box 1

The Anvil, Self-Induced Closure Lee Snider NYU/Fales; Lee Snider Collection MSS 248; Series 1,Box 1

The third and final section traces both the progress of research on the causes of the epidemic, the development of AIDS philanthropy, and the growth of the anger and mistrust that would explode after the founding of ACT-UP in 1986. On display in this section will be slides and documents from the 1984 Park City Utah conference where Jean-Claude Chermann, a virologist from the Nobel-Prize winning team at the Pasteur Institute in Paris electrified the room by presenting evidence announcing the discovery of the retrovirus which would ultimately be identified as Human Immunodeficiency Virus (HIV), and would make possible the development of the first commercial test kit for the presence of the virus (also on display).  The founding of amfAR and other philanthropic organizations, and the strengthened role of the Gay Men’s Health Crisis, also documented here, would enable the successful public outreach of the following decades. The gallery will focus on the landmark New York production of Larry Kramer’s powerful call to action, The Normal Heart, and will end with the highly publicized illness and death of movie star Rock Hudson in October, 1985.

AIDS-quilt-panel-Roger-Lyon

Also included in the exhibition is a panel from the AIDS quilt memorializing Roger Gail Lyon, an early victim of the epidemic whose plea that he not die of “red tape” articulated the frustration of the AIDs community.

The New-York Historical Society is also developing a complementary suite of public programs, including a conversation in the New-York Historical Robert H. Smith Auditorium on the AIDS crisis and AIDS activism with playwright Larry Kramer, interviewed by Tony Kushner, and enhanced by a reading from Mr. Kramer’s classic play The Normal Heart by actor/director Joe Mantello.

Generous support for AIDS in New York: The First Five Years is provided, in part, by Ford Foundation and by The New York Community Trust.

A companion exhibition, Children With AIDS: 1990-2000, will feature thirty black-and-white photographs by Claire Yaffa from her collection The Changing Face of Children with AIDS. Based on photographs taken by Yaffa over a ten-year period, the exhibition will be installed in the New-York Historical Society’s Civil Rights Gallery, revealing with clarity and humility the often heartbreaking tales of children afflicted with HIV and AIDS.-

Claire Yaffa, whose work has been featured in The New York Times and several other major publications, has worked for years to document an intensely intimate, behind-the-scenes look at medical institutions and their youngest patients, giving agency and voice to thousands of individuals—particularly children—struggling with life-threatening illnesses. Among the institutions that Yaffa has worked with during her long artistic career, the Incarnation Children’s Center in the Bronx—an organization that was one of the first to care for orphaned infants born with HIV—provided some of Yaffa’s most visceral subject matter, offering a stirring tribute to those affected by HIV/AIDS. Beginning in 1990, Yaffa visited Incarnation Children’s Center and was permitted to document the lives of these afflicted children and adolescents over a period of ten years, creating haunting portraits that capture the pathos and beauty of dozens of HIV’s youngest victims—most of whom did not survive to adulthood—and documenting the extraordinary devotion of the children’s caretakers.

The exhibition will have a special focus on two or three individual children’s stories and will featuring several of Yaffa’s emotionally moving, mid- to large-format, black and white photographs, and revealing with clarity and humility the often heartbreaking tales of children afflicted with HIV and AIDS.

Other events will include lectures with major public figures discussing important contemporary issues around HIV and AIDS today, hosted by the New-York Historical Society as part of the Bryant Park Reading Room series.

The years documented in AIDS in New York: The First Five Years preceded the founding of ACT-UP, whose commitment to activism and dramatic achievements will be illustrated in an exhibition at the New York Public Library entitled  “Why We Fight: AIDS Activism and American Culture” running October 4, 2013-April 6, 2014.

AND STILL THE FIGHT CONTINUES…

The latest statistics of the global HIV and AIDS epidemic were published by UNAIDS, World Health Organization and UNICEF in November 2011, and refer to the end of 2010.

Estimate                                                Range

People living with HIV/AIDS in 2010           34 million                                             31.6-35.2 million

Proportion of adults living with HIV/AIDS

in 2010 who were women (%)                         50                                                        47-53

Children living with HIV/AIDS in 2010        3.4 million                                            3.0-3.8 million

People newly infected with HIV in 2010      2.7 million                                            2.4-2.9 million

Children newly infected with HIV in 2010    390,000                                               340,000-450,000

AIDS deaths in 2010                                         1.8 million                                             1.6-1.9 million

In the USA, statistics on both HIV and AIDS are collected by the Centers for Disease Control and Prevention (CDC) and published in an annual report. The most recent report and latest statistics on HIV and AIDS in the USA were published in February 2011. The CDC surveillance report includes data on the number of people diagnosed with AIDS, the number living with AIDS and the number of people with AIDS who have died or survived. Such AIDS statistics include not only the 50 states and the District of Columbia but also dependent areas – Puerto Rico, American Samoa, Guam, Northern Mariana Islands and the USA Virgin Islands.

According to the CDC, since July 1981, 1.7 million men, women and children have been infected with (and) are living with HIV in the United States of America, with a fifth unaware of their status. Since the epidemic began, an estimated 1,129,127 people in the USA have been diagnosed with AIDS. Since that that time, 619,000 people have died — over 12 times the number of soldiers who died during the Vietnam War. Researchers and others now estimate that– using the most recent numbers available (adding in the numbers for the years 2011 and 2012) — more than 60 million people worldwide are now infected with HIV and/or AIDS.