Remembering the Early Days of 'Gay Cancer'
MELISSA BLOCK, host:
It's been just about 25 years since AIDS was first identified in the U.S. Commentator Joe Wright spent most of the 1990s doing AIDS work in San Francisco. He said that some of the patient activists in the early days were looking for a way to talk about their illness and they found it in an unlikely place.
JOE WRIGHT reporting:
During 1981 and most of 1982, AIDS still wasn't called AIDS yet and no one knew what caused it. One of the first and most visible signs of the new syndrome was Kaposi's Sarcoma, KS, which created purplish tumors that often showed up on the skin. And because the first people diagnosed with the new syndrome were gay men, some people started calling the disease Gay Cancer.
Almost as soon as the phrase was invented, people realized it was inaccurate. Researchers soon found heterosexual adults and then young children with the same syndrome. And they quickly understood that the underlying problem was actually immune deficiency. But lots of people in the media and the gay community still called it Gay Cancer until the later part of 1982.
In San Francisco, the first AIDS support groups was run by a group called the Shanti Project, which was organized before AIDS to support people with cancer. Several of the city's first AIDS doctors were cancer doctors. And the first man in the city to publicly reveal that he had the new syndrome was Bobbi Campbell, a nurse who had experienced taking care of people with cancer.
Soon after he was diagnosed with KS, he spent time introducing himself to men in the Kaposi Sarcoma clinic waiting room, inviting them to the Shanti Project Gay Cancer support group. And he asked the doctors to give out his name and telephone number to newly diagnosed men.
Medically, Bobbi Campbell knew that his so-called gay cancer was very different than the kinds of cancer that most of his patients in the hospital had. But I think he also knew that having something in common with other people could be a source of comfort.
Before AIDS, cancer was the disease that many Americans dreaded the most. Now, there was a new disease full of mystery and fear. No one knew what would happen to those who had it, they only knew that more and more men were dying.
Amidst all this fear and uncertainty, even though cancer was more feared then than it is now, the idea of cancer became reassuring.
Years later, Dan Turner, one of Bobbi Campbell's friends from the support group explained this to the AIDS activist Michael Callan. Dan Turner said, I remember thinking in the back of my mind, well some people beat cancer, maybe I will. Cancer was the worst thing anybody could say to you before AIDS and I told myself that's what I had, cancer. And the stories of people of getting over cancer were a little core of hope.
The requirement for hope is why a small group of men of San Francisco with a disease without a name or a reliable prognosis, clung to the name of the worst disease they could think of. To most Americans in 1981, cancer meant death. But to one group of men with a mysterious and frightening new disease, cancer meant even the worst news might be survived.
BLOCK: Joe Wright is a student at Harvard Medical School. He is working on a thesis on the early days of AIDS activism.
NPR transcripts are created on a rush deadline by an NPR contractor. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.