A Community’s Response To AIDS – The Beginning Years Before 1986

Last month we took a detailed look at the discovery and identification of  AIDS by Dr. Michael Gottlieb, a University of Rochester trained physician, who was at the UCLA School of Medicine in Los Angeles.

It is difficult at best to say how many people had AIDS in the years before 1981 in the ‘60’s and ‘70’s.  Dr. Jonathan Mann who received the degree of M.P.H. from the Harvard School of Public Health in 1980, was a key figure in the early fight against HIV/AIDS and a pioneer in advocating combining the synergistic forces of public health, ethics and human rights.  In 1989 Dr. Mann, ‘AIDS: A worldwide pandemic’, in Current topics in AIDS, volume 2, edited by Gottlieb M.S., Jeffries D.J., Mildvan D., Pinching, A.J., Quinn T.C., John Wiley & Sons summarized the early development of AIDS:

“The dominant feature of this first period was silence, for the human immunodeficiency virus (HIV) was unknown and transmission was not accompanied by signs or symptoms salient enough to be noticed. While rare, sporadic case reports of AIDS and sero-archaeological studies have documented human infections with HIV prior to 1970, available data suggest that the current pandemic started in the mid- to late 1970s. By 1980, HIV had spread to at least five continents (North America, South America, Europe, Africa and Australia). During this period of silence, spread was unchecked by awareness or any preventive action and approximately 100,000-300,000 persons may have been infected.”

By March, 1981 at least eight cases of a more aggressive form of KS had occurred amongst young gay men in New York.  About the same time there was an increase, in both California and New York, in the number of cases of a rare lung infection Pneumocystis carinii pneumonia (PCP).   In April this increase in PCP was noticed at the Centers for Disease Control (CDC) in Atlanta.  According to an Article in Newsweek, a drug technician, Sandra Ford, observed a high number of requests for the drug pentamine, used in the treatment of PCP:  “A doctor was treating a gay man in his 20s who had pneumonia. Two weeks later, he called to ask for a refill of a rare drug that I handled. This was unusual – nobody ever asked for a refill. Patients usually were cured in one 10-day treatment or they died.”

On June 5, 1981 the first official documentation of the condition was published by the US Centers for Disease Control and Prevention (CDC).  Entitled “Pneumocystis Pneumonia – Los Angeles”, Dr. Michael Gottlieb detailed the cases of five young gay men hospitalized with serious PCP, cytomegalovirus, and disseminated candida infections.  This report began genral awareness of AIDS in the USA.

A few days later the CDC formed a Task Force on Kaposi’s Sarcoma and Opportunistic Infections (KSOI).  Almost a month after the CDC’s announcement, the New York Times reported that a total of 41 homosexual men had been diagnosed with Kaposi’s Sarcoma, eight of whom had died less than 24 months after the diagnosis was made.  At the end of 1981, 5 to 6 new cases of the disease were being reported each week, and by the end of the year, 121 people had died from the disease.

This “gay cancer” was first mentioned in The Empty closet Newspaper in September, 1981 when it reported on an article in the Democrat and Chronicle in which reporter Jack Jones talked with Dr. Alain Roisin, at the Monroe County Health Departmem, who was assigned by the Center for Disease Control to watch for cases of pneumocystis and also the “gay cancer,”’ Kaposi Sarcoma. Rochester is one of six U.S. cities where a special watch was undertaken.  In September of 1981 there were no known cases of either           disease in the Rochester area.  In the October, 1981 issue of the Empty Closet, Dr. Roisin said that Rochestarians should not be unduly alarmed since the cause and the link to gayness remains undefined.

By 1982 the condition had acquired a number of names – GRID 5 (gay-related immune deficiency), ‘gay cancer’, ‘community-acquired immune dysfunction’ and ‘gay compromise syndrome’.  It was not until July, 1982 at a meeting in Washington, D.C., that the acronym AIDS (Acquired Immune Deficiency Syndrome) was suggested. The CDC used the term for the first time in September 1982, when it reported that an average of one to two cases of AIDS were being diagnosed in the USA every day.

In “New Findings on Fatal Illnesses” by Bill Kelly in the January, 1982 issue of the EC, Bill reports          that investigators have discerned a pattern of rare and sometimes fatal types of cancer and pneumonia among young urban gay males who are sexually active in drug-taking circles.  The immune system breakdown has been noted in 180 patients in 15 states since July, of whom 92% were gay men.

By June, 355 cases of Kaposi’s Sarcoma and/or serious opportunistic infections in previously healthy young people had been reported to the CDC. By the beginning of July a total of 452 cases, from 23 states, had been reported to the CDC, and the disease was no longer solely affecting gay men; there were a small number of cases among heterosexual men and women. Over half of those identified as heterosexual had used intravenous drugs at some point.  G’dali Braverman, AIDS activist living in San Francisco stated that by mid-1982 people were starting to shake in their pants.

In April, 1982 the Empty Closet article, “Gay Cancer” Turns Straight. the Washington Blade reports that what was initially believed to be a disease peculiar to gay men is now being discovered in women and heterosexual men in either the form of a cancer or pneumonia as reported in the Wall Street Journal.  The disease, which has killed at least 99 persons in the past seven months, occurs in cases of Kapoci’s sarcoma or a form of pneumonia caused by normally harmless protozoa, pneumocysis carinii. Neither antibiotics nor antiviral drugs have been effective in treating the disease.

In a New York Times Article  ‘A Disease’s Spread Provokes Anxiety’, by Herman R. published on August 8, 1982, Herman reports “It is frightening because no one knows what’s causing it, said a 28-year old law student who went to the St. Mark’s Clinic in Greenwich Village last week complaining of swollen glands, thought to be one early symptom of the disease. Every week a new theory comes out about how you’re going to spread it.”

By this time, news of the disease had spread through the gay community like wildfire.  Who, how, when where were the all consuming frightening questions faced not only by the gay community but as we will see by the straight community.  African Americans, Haitians, Puerto Ricans, and other ethnic groups would contract the disease.  AIDS would infect  women and children.  Shoulders to Stand On next  month will begin here, and look more closely at the Rochester research and response to AIDS pre-1986.

Shoulders to Stand On is in awe of the men, women and children who lived through this period of time with fear and concern but also with incredible courage.  Today we can treat this disease, and people can live a “normal” life.  I believe that no one would choose to be sick if there was an lternative preventive measure that would insure health.  A vaccine would do just that.  Our work is not finished, a vaccine needs to found, and we must raise our voices again to make this happen.



Rochester AIDS History Chapter 2

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