A Community’s Response To AIDS

Over the next few months, Shoulders To Stand On will go back in Rochester’s history before AIDS.  Shoulders will look at the beginning of the LGBT community’s emersion in what continues to be a growing “chronic” epidemic.   The  Shoulders to Stand On Documentary documented the “tip of the iceburg” of this community’s response to AIDS.  Thirteen minutes and nine seconds could not possibly include all of the contributions the Rochester community – gay and straight – made to create hope and bring new life to so many relatives, friends and people we knew in passing – all victims of this “plague”.  Pride, pain, hope and celebration are all a part of the story.   Shoulders invites you to listen to the story that brought the Rochester community back to life.

The story of the discovery and identification of AIDS, as it would be named in 1981, begins here in Rochester with a young doctor trained at the University of Rochester School of Medicine.  Dr. Michael Gottlieb came to the U of R in the Fall of 1969, just after Stoneweall in June.  He graduated from the U of R School of Medicine in1973, the year the Gay Liberation Front left the University of Rochester  Campus, and he trained in internal medicine at Strong Memorial Hospital in Rochester.  Following a fellowship in immunology at Stanford University in Palo Alto, California, in 1980 Gottlieb accepted an assistant professor of medicine position at the UCLA School of Medicine in Los Angeles.

In 1981, Dr. Michael Gottlieb, then a 33 year-old assistant professor specializing in immunology at the UCLA Medical Center, asked one of his immunology fellows to look for an interesting “teaching cases.”   The fellow presented Gottlieb with a young gay man with unexplained fevers, dramatic weight loss, and a severely damaged immune system.  Gottlieb later described a process of reasoning that led him to conclude that this patient was suffering from some syndrome that had not previously been reported.  Additional blood tests confirmed a marked deficiency of T-lymphocyte numbers and functions, and that the T-cells bearing the surface marker CD4, the “helper” cells, were virtually absent.

Soon thereafter, Gottlieb heard about 2 patients of Joel Weisman. Weisman and his partner were gay physicians with a largely gay practice.  Both patients had chronic fevers, swollen lymph nodes, diarrhea, and thrush. T-cells of Weisman’s patients had the same abnormality as his original patient. Over the next several months, both were diagnosed with Pneumocystis carinii, and the DNA virus cytomegalovirus (CMV).

The fourth case came to Gottlieb through a former student, Wayne Shandera, who had become the CDC’s Epidemic Control Officer in Los Angeles. Gottlieb told him that there was a new disease in gay men that seemed to have something to do with CMV and pneumocystis pneumonia and asked Shandera to see what he could find out. Shandera had a report sitting on his desk about a man in Santa Monica who had been diagnosed with pneumocystis pneumonia.  The patient died soon after Shandera visited him; on autopsy, CMV was found in his lungs. A fifth case came from a Beverly Hills internist. This patient too had Pneumocystis carinii and CMV. Several of these patients went on to develop Kaposi’s sarcoma, a rare skin cancer sometimes found in older men or immunosuppressed kidney transplant recipients.

Gottlieb was excited to think he might have made a significant discovery. He telephoned Arnold Relman, the editor of the New England Journal of Medicine, and declared that he had a story that was “possibly a bigger story than Legionnaire’s disease.”  When Gottlieb described his patients suffering from this complicated new malady, Relman advised that, because publication in the New England Journal would take a minimum of three months, Gottlieb should first submit a brief article to the CDC Morbidity and Mortality Weekly Report, June 5, 1981.  This would serve the dual function of alerting public health officials and physicians to the new disease and also stake Gottlieb’s claim to be its “discoverer.” A longer and more detailed account could then be submitted to the New England Journal, December, 1981. The New England Journal paper included the first description of the CD-4 T cell deficiency which is the immunologic hallmark of HIV infection.  The rather terse announcement by the CDC was generally overlooked until a few weeks later Dr Alvin Friedman-Kien of the New York University Medical Center published a description of twenty-six cases of Karposi’s sarcoma in gay men in New York and California.

Here in Rochester, in June, 1981, Dr. Bill Valenti, also trained at the University of Rochester School of Medicine, first heard about AIDS and soon began to see similar symptoms in the patients he saw at Center for Infectious Disease at the U of R.

The work of Gottlieb and others suggested that these patients had an acquired immunodeficiency, characterized by depressed T-lymphocyte numbers and function, allowing for potentially fatal opportunistic infections. Initially, the researchers termed the disease Gay-Related Immune Deficiency (GRID); in 1982 this syndrome became known as AIDS, a consequence of infection by Human immunodeficiency virus (HIV).

Dr. Michael Gottlieb credits this amazing piece of  “detective” work to his training at the U of R School of Medicine where he was taught the biopsychosocial approach to medicine pioneered at the University of Rochester by Drs. John Romano and George Engel.   The biopsychosocial approach emphasizes patient-physician communication and patient-centered interviews, as well as the central values of professionalism, self-awareness, humanism, compassion, honesty, and integrity.  It is this approach that provided the framework for making the connections in the discovery of what we now call AIDS.

In an interview with Nelson Vergel, from the Body.com, June 2, 2011, Dr. Michael Gottlieb said, “The association of HIV with the gay population is kind of an accident of nature and sociologic history. In other words, HIV did not start in the gay population and probably was in the United States well before we came upon it in 1981. And I think the virus got introduced [to the wider population] around the time of gay liberation in the ’70s and ’80s, when people were having sex with a lot of different partners. … I have to say that the perception that HIV/AIDS was a gay disease has hung on in the public mind. Of course, the reality is that a tiny percentage of the 33 million people worldwide who have HIV are homosexual. There’s clear evidence, scientific evidence, that it did not start among gay people.  The continued stereotyping of the disease leads people to think that it’s someone else’s problem, that they are somehow isolated from HIV, or immune from contracting it; and it really contributes to public apathy, which is rampant these days.”

Rochester, NY was in the forefront of the social, medical, religious and educational response to AIDS.  The year 1981 will forever be remembered by hundreds of men and women as the year in which AIDS was identified officially by Dr. Michael Gottlieb, a graduate of the University of Rochester School of Medicine. As the year Dr. Bill Valenti heard about and began to see the disease in Rochester.  As the year Rochester, NY began to see the effects of this disease on people’s lives.  It is not a coincidence that Dr. Gottlieb and Dr. Valenti were trained at the University of Rochester.  Shoulders will explore the connections their parallel paths 3000 miles apart took. Shoulders will tell the story of the historically significant events and people whose shoulders have brought us to March, 2015 in our fight against this disease.

Shoulders to Stand On heralds Dr. Michael Gottlieb as one of the “Shoulders of Giants” we stand on.  Shoulders To Stand On is proud and grateful for the contributions Dr. Gottlieb, Dr. Valenti, the University of Rochester and many others have made to the LGBT and Greater Rochester community journey from “Death to Life”!


Rochester AIDS History Chapter 1

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