Reports of Rare Diseases Mark Beginning of AIDS Epidemic

Reports of Kaposi’s sarcoma and pneumocystis carinii pneumonia among gay men appeared in The New York Times and in a medical newsletter, marking the first years of the AIDS epidemic. Two weeks before the “official” reports, however, came an article in the New York Native, a gay newspaper, about rumors of a new disease among gay men.

Date June 5 and July 3, 1981

Locale Los Angeles and San Francisco, California; New York, New York

Summary of Event

The summer 1981 editions of the Morbidity and Mortality Weekly Report (MMWR), the newsletter of the Centers for Disease Control, reported a number of unusual medical discoveries and hinted at a new disorder of unknown origin. In a July 3, 1981, article, doctors in New York and San Francisco reported the diagnosis of twenty-six gay men with a rare form of cancer called Kaposi’s sarcoma (KS). Prior to 1981, the cancer afflicted only a small population of elderly Ashkenazi Jewish or Italian men, culminating in lesions on the legs and feet, spreading to internal organs after many years, and rarely causing death. In the new cases reported in the MMWR, however, young gay men showed lesions on the torso, neck, or face, and the cancer spread quickly to the internal organs and often resulted in death.

Less than one month before the July 3 report, the June 5, 1981, edition of the MMWR told of five young, previously healthy, gay men who had been treated in Los Angeles for a rare form of pneumonia called pneumocystis carinii pneumonia (PCP), thought only to appear in those with a weakened immune system. The July 3 article hypothesized a relationship between homosexuals and KS, PCP, and a variety of other strange illnesses that had befallen a small number of gay men in the thirty months prior to the article’s publication.

Also on July 3, The New York Times and the Los Angeles Times reported these findings, although they each buried the story in the last pages of the papers’ first sections. In the following days, many major newspapers across the country carried the story. This first week in July, 1981, marked the initial reports of what was to become the AIDS epidemic. No mention of KS, PCP, or any other AIDS-related news made it into any major newspapers for at least the next year. The gay press, which at this time consisted of dozens of magazines and weekly newspapers across the country, provided only slightly better coverage in New York, San Francisco, and Los Angeles—the three cities with most of the first cases.

While sparse, the reports of gay newspapers in these cities often provided the only source of information about the early epidemic to those outside medical circles. The New York Native, the major gay newspaper for New York City, offered the best coverage of the epidemic’s beginnings and early years. Pre-dating the first MMWR article by two weeks, the New York Native carried the news story “Disease Rumors Largely Unfounded” by Lawrence D. Mass, a medical doctor, in the May 18, 1981, issue that discussed rumors of a new disease among gay men in New York. In the July 27 issue, Mass wrote his first feature article on the disease, “Cancer in the Gay Community.”

More than six months after the first MMWR report, in January, 1982, doctors and scientists dubbed the new disease “gay-related immunodeficiency,” or GRID, only to rename it “acquired immunodeficiency syndrome,” or AIDS, in July. By 1983, doctors in more than twenty-five states encountered patients with KS, PCP, or other rare diseases that had been added to the growing list of illnesses associated with AIDS. Modes of transmission and prevention, as well as effective forms of medication, remained largely unidentified by scientists until the mid-1980’s.

Significance

The first reports of Kaposi’s sarcoma and pneumocystis carinii pneumonia went largely unnoticed. Only a handful of doctors and the most observant of gay men took note of the articles. Most major gay newspapers around the country reported less than one dozen stories related to KS, PCP, or AIDS in 1981 and 1982 combined. Not until 1983, when the numbers of those infected with the disease topped one thousand, did a larger readership look for the start of the epidemic. Political activists, AIDS activists, and historians have linked the lack of media coverage during the early years of the epidemic to societal homophobia. Many have argued that homophobia and lack of interest are responsible for the government’s slow response to the AIDS epidemic in research funding and education, a delay that resulted in the spread of the disease.

Even with the lack of attention from the mainstream press, these early reports of KS and PCP mark the beginning of the most deadly epidemic in modern human history. The mysterious and complex nature of the diseases presented in the MMWR article proved to be trademarks of AIDS, especially in the 1980’s.

As doctors and scientists struggled to understand the disease, people with AIDS or those thought to have AIDS found themselves the center of many heated public debates. By the mid-1980’s, panic gripped the country over the disease and its transmission and prevention. Politicians, community leaders, and parents of schoolchildren argued about where people with AIDS could go, what they could do, and with whom they could interact. A variety of political groups, including the radical political-action group ACT UP, formed as a result of these efforts to limit the civil rights of people with AIDS.

Scientists—and even the general public, mainly those in the developed world—now understand the modes of transmission and prevention of HIV-AIDS, and they have successfully manufactured a number of effective medications. However, cures for the infection HIV, the virus believed most likely to cause AIDS, and for AIDS itself remain elusive, and testing and treatment is often unavailable in developing countries. At the end of 2003, an estimated 38 million people worldwide lived with HIV and 20 million people worldwide, including more than 500,000 in the United States, have died from AIDS through the first years of the twenty-first century.

Bibliography

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Mass, Lawrence D. “Larry Mass Looks Back on Twenty-Five Years of AIDS Reporting, Activism.” Gay City News, May 1-7, 2006. http://www.gaycitynews.com/gcn‗522/larrymasslooks back.html.

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