A Community’s Response To AIDS – The Beginning Years Before 1986 in Rochester, NY
This month we begin to look at the Rochester Response. We need to look at communication mediums in the early ‘80’s. In 1980 it was estimated that there were 1 million computers world wide – world wide!!! Communication occurred though paper and “snail” mail. The use of faxes, email, on-line newspapers were in the infant stages of development.
In June, 1981 the first official documentation of the condition which would come to be identified as AIDS was published by the US Centers for Disease Control and Prevention (CDC). Getting the word out about this new condition was a slow process. Here in Rochester, NY the medical profession knew about Pneumocystis Pneumonia Carinii (PCP), generally only found in individuals with seriously compromised immune systems, and Kaposi’s Sarcoma normally only affecting elderly men of Mediterranean or Jewish heritage and young adult African men, but were beginning to see these diseases appear in men who were young and had previously been in relatively good health. The only other characteristic that connected them was that they were all gay.
Doctors at the University of Rochester Medical Center began to encounter more cases. Dr. Roy T. Steigbigel, MD, Board Certified in Infectious Diseases in 1974, was on the faculty of the University of Rochester. In 1982 – 1983, Dr. Steigbigel began to see a number of patients, mostly men, who had compromised immune systems. These patients were immuno deficient at the cellular level In 1983 when Dr. Steigbigel left the University to found the Division of Infectious Diseases at Stony Brook Medical Center, he asked his colleague Dr.Ray Mayewski, currently a Professor of Medicine and Chief Medical Officer and Vice President at URMC, to follow these patients and become their primary care physician. Dr. Mayewski who was at St. Mary’s at the time agreed to do so. He took on Dr. Steigbigels cases, a handful of mostly male gay patients with immune deficiency. By word of mouth, others already experiencing symptoms of immune deficiency or feared they would began seeing Dr. Mayewski. This was a precursor to many AIDS treatment clinics, and the Community Health Network, the first official AIDS treatment clinic in Rochester under Drs. Steve Scheibel and William Valenti in 1989. Throughout the AIDS Crisis hospitals did not publicize theirs services to this population because they did not want to become identified as the “GRID or AIDS” hospital fearing negative response from patients and donors.
At about the same time, in October 1982, Sue Cowell interviewed Dr. Thomas Rush, a fellow in Infectious Diseases at Strong Memorial Hospital, currently involved with a research project studying A.I.D. Syndrome for the Empty Closet. In this article Dr. Rush reports that physicians associated with the Infectious Diseaaes Unit at Strong Memorial Hospital of the University of Rochester are in the process of organizing a study to examine the function of a cell called a macrophage which resides in the liver, spleen, bone marrow and skin and whose function it is to remove foreign materials from the blood stream and to interact with other blood born white cells to fight infections, This cell is of prime importance in resistance against Pneumocystic carinii as well as other agents causing infections in these patients. Dr. Rush goes on to say the researchers are especially interested in comparing the function of this cell in gay males with the prodrome to that of the cells of healthy gays and healthy heterosexuals. Studying this group is especially meaningful in light of the generally accepted notion that the prodrome may be a warning of what is to come. Hence. an important other role of the screening clinic will be to help identify patients at risk for serious infections or Karposi sarcoma. Others involved in the study include Sue Cowell who is a nurse practitioner at the Uiuversity Health Service who will be involved with various aspects of the project, particularly with maintaining patient confidentiality.
Dr. Rush informs the community that researchers in Rochester are applying for funds for research from the National Institute of Health (NIH) for the study. The screening clinic would also serve to identify a group of gay males to enter in a pilot study required to apply for such funds. If funds are allocated from this or other sources, patients would be followed in the clinic for 3-5 years.
September 24, 1982 The CDC defines a case of AIDS as a disease, at least moderately predictive of a defect in cell-mediated immunity, occurring in a person with no known cause for diminished resistance to that disease. Such diseases include KS, PCP, and serious OI. Diagnoses are considered to fit the case definition only if based on sufficiently reliable methods (generally histology or culture). Some patients who are considered AIDS cases on the basis of diseases only moderately predictive of cellular immunodeficiency may not actually be immunodeficient and may not be part of the current epidemic.
November, 1982 Gay Rights National Lobby (GRNL) organized a major congressional lobbying campaign aimed at getting more federal funding for urgent research on Acquired Immune Deficiency Syndrome (AIDS).
In December, 1982 a 20-month old child who had received multiple transfusions of blood and blood products died from infections related to AIDS. This case provided clearer evidence that AIDS was caused by an infectious agent, and it also caused additional concerns about the safety of the blood supply. Also in December, the CDC reported the first cases of possible mother to child transmission of AIDS.
By 1982 a number of AIDS specific voluntary organisations had been set up in the USA. They included the San Francisco AIDS Foundation (SFAF), AIDS Project Los Angeles (APLA), and Gay Men’s Health Crisis (GMHC) in New York City.
By the end of 1982 many more people were taking notice of this new disease, as it was clearer that a much wider group of people was going to be affected.
“When it began turning up in children and transfusion recipients, that was a turning point in terms of public perception. Up until then it was entirely a gay epidemic, and it was easy for the average person to say ‘So what?’ Now everyone could relate.” – Harold Jaffe of the CDC for newsweek
Shoulders to Stand On is grateful for the courage of these early Rochester AIDS pioneers: Dr. Roy T. Steigbigel, Dr.Ray Mayewski, Dr. Tom Rush, Sue Cowell. Next month we will look in more detail at the Rochester Response in 1983 and 1984.