A Community’s Response To AIDS – The Beginning Years Before 1986 in Rochester, NY
The year 1982 was a pivotal year in the identification of AIDS. Professionals and others were beginning to talk openly about the disease with as much information as was available at the time. It would be later that the AIDS virus would be traced back to French-Canadian flight attendant Gaëtan Dugas who pays his first known visit to New York City bathhouses in October, 1981. He would later be deemed “Patient Zero” for his apparent connection to many early cases of AIDS in the United States.
In an interview with Tom Rush, MD by Sue Cowell, RN written up in the October, 1982 Issue of the Empty Closet, Sue asked, “WHY IS IT IMPORTANT TO CONDUCT THIS STUDY IF THERE HAVE NOT BEEN ANY CASES IDENTIFIED IN ROCHESTER?’ Dr. Rush responded, “It is generally accepted that A.I.D.S. is related to some transmissible agent and therefore the possibility exists that it will ultimately reach Rochester where there is a substantial gay community, many of whom may travel outside of Rochester. Also, the types of abnormalities of the immune system that we will be testing for would not be as meaningful if found in people with the full blown syndrome. People who are seriously ill develop many abnormalities not necessarily the cause of their illness but rather a result of it. Finding such abnormalities in mildly ill or healthy people would be more helpful in establishing a causal relationship.” On January 15, 1981 Nick Rock becomes the first known AIDS death in New York City. In December of 1982, just a few months after Sue’s interview with Dr. Rush, the Monroe County Health Department acknowledged that a Caribbean immigrant to Rochester as a result of’ Acquired Immuno Deficiency Syndrome.
It was also disclosed at that time that two other cases have been diagnosed. They were reported to the federal Centers for Disease Control in Atlanta. The Monroe County Health Department also said that ten other suspected cases in Monroe County were under investigation. In response to this one death, approximately 100 men have attended a special clinic at Strong Memorial Hospital since early October. As you can see it did not take long for this disease to reach Rochester. Thank goodness the medical community had been aware of what was going on and had already begun to track people who might be HIV positive. Much of that early work was done by sue Cowell at the University Health Services, where she began epidemiolical studies and an Educational Programs on HIV.
In Tom Rush’s front page Oct.,1982 EC article, Tom stated that researchers were working feverishly to identify the primary abnormality in the immune system that allows development of infections that the body can usually contain on its own. as well as identify agents that might be responsible for the damage to the immune system. In Rochester, Tom and other physicians associated with the Infectious Diseases Unit at Strong Memorial Hospital of the University of Rochester worked with Dr. Roy Steigbigel at SMH who was working with organisms called Leishmania donvani which caused serious illness in Asia and Africa. Roy used this organism to study how cells of the immune system work. At that time the A.I.D. Syndrome seemed to be related to a failure of the immune system to kill the organisms that had been causing these serious infections in gay males and others. This study would provide information that would lead to effective treatment of the disorder. Other physicians were involved in the research as well as Sue Cowell, a nurse practitioner at the Uiuversity Health Service, who had contacts in the gay community. Sue was involved with various aspects of the project, particularly with maintaining patient confidentiality. At this point in time the National Institutes of Health announced the availability of funds for research into the causes and treatment of this syndrome. As a part of this research, an A.I.D.S. Screening Clinic at the University Health Service opened to screen gay men for symptoms of A.I.D.S. (Acquired-Immunodefidency Syndrome). The screening included a short history, limited physical exam, and optional lab data. Sue was already working at the University Health Service. In the same issue of the EC, Sue stated, “He (Tom Rush) came to me because he knew it would be important to have contacts to be able to make something like that work. Without a doubt, it would not have got going so fast without my help and the help of Tim Sally and Derrick Balsam. They were very instrumental in getting the ball rolling. There was research right from the beginning but you would not be aware of it unless you were reading medical journals. It takes a while for physicians to recognize immume disease. Then it must be reported to the Center for Disease Control. Then the information is communicated through the CDC’s morbidity and mortality weekly report.
The Washington Blade reported at about the same time, Dr. Linda Pilfer, a microbiologist and assistant professor of pediatrics at the University of Tennessee’s Center for the Health Services, has developed a blood test that may soon be used to diagnose a virulent form of pneumonia that has afflicted over 200 men – many of them gay – during the past three years.
In July, 1982 at a meeting in Washington, D.C., the acronym AIDS (Acquired Immune Deficiency Syndrome) was suggested. The CDC used the term for the first time in September 1982.
Throughout much of the reporting on AIDS and its history, not much attention is paid to the African America population. Much of the problem in the early years was the American media’s portrayal of AIDS as a disease of white gay men. African Americans were given few reasons to believe that AIDS could affect them, even though African American men made up a large proportion of the early cases of AIDS in the gay and bisexual community. From the outset, African American heterosexual adults and children were significantly more likely to be infected than white heterosexuals.
The first AIDS cases among black Americans were also identified in the early 1980s. In 1983 the CDC documented the first two cases of AIDS in women. Both women had acquired HIV through sex with an intravenous drug user. One of these women was Latina; the other was African American. From this point on, the AIDS epidemic began spreading rapidly amongst the African American population. Women were particularly affected and by 1988, African Americans accounted for half of all AIDS in females in America.
Formed in San Francisco in 1980 by Mike Smith, Black and White Men Together (BWMT) originated as a consciousness-raising and support group for gay men involved in or interested in multiracial relationships. A national organization grew from the San Francisco chapter, as groups were soon established across the United States. Early chapters included Boston, Chicago, Kansas City and New York. The first national convention was held in 1981 in San Francisco.
As Shoulders To Stand On continues to present the Rochester community’s response to AIDs, if you are aware of other efforts made by individuals or groups to raise awareness about AIDS in the early days of this epidemic it would be very helpful to me if you would let me know at evelynb@gayalliance.org.