Shoulders To Stand On EC October Issue 2015
A Community’s Response To AIDS – Center for Disease Control Early Response
Recognition of the emerging epidemic was gradual in NYS, as elsewhere. After the Centers for Disease Control declared that the number of cases of Kaposi’s Sarcoma (KS) and Pneumocystis carinii pneumonia (PCP) had reached epidemic proportions. individuals and groups, particularly gay men, organized for mutual support and to seek help. AIDS Rochester was the first grass roots community based organization in Rochester to respond to the AIDS epidemic and among the first in NYS. In January of 1982, the Gay Men’s Health Crisis, Inc. (GMHC), the nation’s first HIV/AIDS community-based organization, was established in NYC. GMHC was created when 80 men gathered in New York writer Larry Kramer‘s apartment to discuss the issue of “gay cancer” and to raise money for research. GMHC took its name from the fact that the earliest men who fell victim to AIDS in the early 1980s were gay.
The founders were Nathan Fain, Larry Kramer, Lawrence D. Mass, Paul Popham, Paul Rapoport and Edmund White. They organized the formal, tax-exempt entity. At the time it was the largest volunteer AIDS organization in the world. Paul Popham was chosen as the president. Rodger McFarlane began a crisis counseling hotline that originated on his own home telephone, which ultimately became one of the organization’s most effective tools for sharing information about AIDS. He was named as the director of GMHC in 1982, helping create a more formal structure for the nascent organization, which had no funding or offices when he took on the role. GMHC operated out of a couple of rooms for offices in a rooming house in Chelsea owned by Mel Cheren of West End Records.
Larry Kramer wrote that by the time of McFarlane’s death, “the GMHC is essentially what he started: crisis counseling, legal aid, volunteers, the buddy system, social workers” as part of an organization that serves more than 15,000 people affected by HIV and AIDS. In an interview with The New York Times after McFarlane’s death in May 2009, Kramer described how “single-handedly Rodger took this struggling ragtag group of really frightened and mostly young men, found us an office and set up all the programs.”
Kramer grew frustrated with bureaucratic paralysis and the apathy of gay men to the AIDS crisis, and wished to engage in further action than the social services GMHC provided. He expressed his frustration by writing a play titled The Normal Heart, produced at The Public Theater in New York City in 1985. His political activism continued with the founding of the AIDS Coalition to Unleash Power (ACT UP) in 1987, an influential direct action protest organization with the aim of gaining more public action to fight the AIDS crisis. Kramer resigned in 1983 to form the more militant ACT UP (the AIDS Coalition to Unleash Power) as a more political alternative. Early in 1988 Martin Hiraga helped start ACT UP Rochester. More on ACT UP Rochester in a later issue.
By May 1982, even though the cause of the disorder having KS and PCP as symptoms was unknown, researchers had begun to call it A.I.D. for acquired immunodeficiency disease, or GRID, for gay-related immunodeficiency. The term“AIDS,” for acquired immunodeficiency syndrome, was coined by the CDC in 1982.
By the end of 1982, however, it was clear that others – not just homosexual men – were at risk for the disease, and what had been complacency turned into serious concern, even panic. Many persons caring for AIDS patients were concerned about their own safety and, in some cases, health-care workers refused to provide needed care. To provide guidance for protection of clinicians and laboratory workers managing patients with AIDS and their biologic specimens, CDC issued guidelines in November 1982 that were based on those previously recommended to protect against hepatitis B virus infection.
In March 1983, CDC, in conjunction with the Food and Drug Administration and the National Institutes of Health (NIH), issued interagency recommendations for the prevention of AIDS on the basis of the epidemiologic data. These recommendations, which were immediately endorsed by a variety of professional and community organizations, were developed before the cause of the syndrome was discovered and 2 years before antibody testing would be available for diagnostic testing of individuals or screening of blood donations. Yet, even in retrospect, the recommendations appear to have been essentially correct. They illustrate the power of epidemiologic investigation in understanding and preventing new diseases, even in the absence of an identified cause.
The causative retrovirus was described by Drs. Francois Barre-Sinoussi and Luc Montagnier and their colleagues from the French Pasteur Institute in May 1983 (27). Additional proof of causality, as well as the demonstration of sustained viral growth in vitro, was reported by Dr. Robert Gallo and colleagues at the U.S. National Cancer Institute, NIH, in 1984 (28). In 2008, Drs. Barre-Sinoussi and Montagnier were awarded the Nobel Prize in medicine for their discovery of human immunodeficiency virus (HIV). Researchers discovered the means by which AIDS was spread, namely through sexual intercourse, the sharing of contaminated needles among intravenous drug users, transfusion of infected blood, and transmission from pregnant mother to child in utero, during birth, or during nursing. A blood test to detect antibodies to HIV and a technique for killing the virus in blood products were developed in 1985, making the blood supply once again safe for transfusion, and clotting factors safe for hemophiliacs.
With no cure and no vaccine, educating the public on how AIDS was transmitted, who was at risk, and how to protect oneself was the only way left to slow the spread of the disease. AIDS Rochester became the “educator” on AIDS in Rochester. In November, Shoulders to Stand On will look in greater detail at Rochester’s educational response to the AIDS epidemic.