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Sunday, June 5, 2011

A true community: At the 30th anniversary of the AIDS epidemic

Today is the 30th anniversary of the announcement of the first deaths from what was later termed AIDS. On June 5, 1981, the Centers for Disease Control published the first report on the epidemic in its Morbidity and Mortality Weekly Report. Now, 30 years later, AIDS is a chronic disease that people live with for decades, with a variety of medicines and lifestyle changes.

Randy Shilts traced the early years of the epidemic in And the Band Played On, an encyclopedic account of the players and the politics. By the four-year mark, he said, the San Francisco gay community had mobilized to fight the epidemic. Numerous AIDS-related organizations had persuaded thousands of local gay men to staff information hot-lines, raise funds for AIDS services, and volunteer to help the stricken. Gays had continued to gain in political strength. At awful cost, they had forged a true community, with a shared sense that they wanted that dream to survive.

Gays' initial efforts to organize had some missteps. For example, Gay Men's Health Crisis had continual internal battles over whether to clearly state how gay men’s sexual practices contributed to the spread of AIDS. There had been great debate over whether their first mass mailing should show the word "gay" in the return address of the organization, in the spring of 1982. Their first newsletter in July 1982, the first nonscientific publication about the epidemic, presented different views on risk reduction.

But they kept at it, and they grew. By August, GMHC had 300 volunteers to provide buddies offering practical services to AIDS victims. By the end of October, they had gotten a meeting with New York City Mayor Ed Koch's liaison to the gay community, marking the first official attention to the epidemic by the city government. By the end of 1983, GMHC had coordinated $3 million worth of volunteer time, and was providing clinical services to about 50 people a week. It was then the only AIDS education program in New York City.

Still, its progress was fitful, and painfully slow. It remained very difficult to get the attention of government officials, until Rock Hudson, a popular actor, died of AIDS. Yet eventually, AIDS activists spurred the more rapid testing of drugs and the expenditure of substantial government research funding. These contributed to the development of AZT and the cocktail of AIDS drugs that were found capable of holding the disease at bay.

Advice to patient safety advocates and activists: Let's learn from the success and setbacks of AIDS activists, and celebrate their success.

Read Chapter 7 of my book, about the ways some patient advocates heroes are building our movement.

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