December 7, 2003
Writing the Words that Save Our Lives

When we first heard about AIDS, back when it didn't even have a name, could we have envisioned an epidemic lasting for decades? From the beginning the battle was against not only a virus, but also against silence and lack of knowledge. The only protection was education and writers were among those trying to get the life-saving word out. I remember approaching the editor of an organization's magazine only to be told they had decided not to cover the subject because, "AIDS doesn't affect (our members)."

In 2003 AIDS is a household word and 30 million people are dead worldwide. World AIDS Day, observed on Monday, put the disease back in the news, at least for a few days.

Philip Hilts has never stopped trying to get the word out.. Back in 1981, when the Centers for Disease Control made its first announcement of a mysterious new disease, Hilts wrote about it for The Washington Post. Since then he has written 400 stories on AIDS, maybe more than any writer in the world. He is also the award-winning author of five books and hundreds of stories on other medical and public health subjects for The New York Times and The Washington Post. His most recent book is Protecting America's Health: The FDA, Industry, and 100 Years of Regulation. This year Hilts has been away from his Brookline home, living with his family in Botswana, where he is teaching journalism at the University of Botswana and working on a book on AIDS in Southern Africa.

"I have felt deeply about the subject of AIDS since the beginning. This epidemic is now, as far as I can tell by (statistics), the worst epidemic in human history, and Botswana is the worst nation in that worst epidemic.

"This is not the public disease that the Black Death was. This disease is quiet. This is a virus that, in a peculiar way, seeks out the cultural weaknesses in each place it reaches, then saturates these crevasses of human frailty and produces suffering and death."

Although Hilts notes profound differences between AIDS in the United States and in Botswana, there are also frustrating similarities to its early days in this country, particularly denial and the role of public policy. Nearly half the population of Botswana is HIV positive and, although medication is available free, many people do not take it because of a widespread belief that the drugs will not work. One of Africa's richest nations, Botswana had, until recently, an average life expectancy of 70. The prevalence of AIDS has brought that number down to 50, and firm predictions are that it will drop to a heartwrenching 29. Unlike here, however, where President Reagan did not mention the word AIDS for the first six years of the epidemic, the president of Botswana has taken a very public position, getting tested, speaking out often.

The World Health Organization estimates 5 million new infections in 2003. A new generation is at risk for lack of adequate prevention education.

"The denial," says Hilts, "is still going on. There is still the reluctance to talk about it."

Even as he works on his book, he worries that it won't sell. He calls it "message fatigue," the way we push all talk of AIDS out of our public and private conversation. We know, we know. We just don't want to hear it anymore.

We have the drugs now to treat the people who are infected. But education remains the only way to prevent new infections. If we don't talk about AIDS, if we don't write about it and read about it, we will continue to live in its shadow. The old slogan of the AIDS group ACT UP still applies: silence = death.

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