Stephen Crohn, who helped scientists study AIDS, dies

Stephen Crohn, who volunteered for studies that illuminated the nature of AIDS and led to the development of drugs to fight it, died on Aug. 24, 2013. He was 66.
Newsday's obituary for Stephen Crohn
Credit: Nancy Siesel
Three decades ago, when so many of his friends were dying of AIDS, Stephen Crohn wondered why he -- a gay man whose longtime companion had been one of the first to die from the disease -- had managed to avoid it.
Was it just a matter of time before he caught the human immunodeficiency virus, which causes AIDS? Was there something wrong with the HIV antibody tests he took that always came back negative? Crohn, an artist and freelance editor, lived with the questions for 14 years before he finally learned that the answer was in his genes.
In 1996, scientists in New York studying Crohn's blood cells discovered a genetic mutation that made his cells impregnable to the AIDS virus. The discovery made Crohn famous as "the man who can't catch AIDS." But the satisfaction that came from helping to advance AIDS research was "tempered by the fact that nearly everyone he loved died. It was tempered by great, great sadness," said his sister, Amy Crohn Santagata.
Crohn, 66, who volunteered for studies that illuminated the nature of AIDS and led to the development of drugs to fight it, committed suicide Aug. 24 in New York, his sister said.
By his own estimate, AIDS claimed the lives of more than 70 of his friends.
"What's hard is living with the continuous grief," Crohn said in a 1999 "Nova" documentary on PBS. "You keep losing people every year -- six people, seven people . . . and it goes on for such a long period of time. And the only thing you could compare it to would be to be in a war."
When the crisis was brewing in the late 1970s, Crohn was living in Los Angeles, where he ran a restaurant with his longtime lover, Jerry Green. In 1978, Green developed flu-like symptoms that bloomed into a debilitating constellation of illnesses. He lost weight, was ravaged by infections and went blind in one eye. When he died in March 1982, the term AIDS did not exist. That came six months later, when the Centers for Disease Control said for the first time that the highly fatal illness was acquired immune deficiency syndrome.
Crohn naturally worried that he had been infected. Every time his test came back negative, he was nagged by doubts.
But he came from a family that believed in medical science: The inflammatory bowel syndrome Crohn's disease was discovered by his great-uncle Burrill. So it was perhaps inevitable that at a family gathering in 1994 the younger Crohn was asked, "Why aren't they studying you?"

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