In the pages of this report, you will read the testimonies of 25 African Americans who have found ways both large and small to change the course of the epidemic.
The AIDS epidemic has a shocking birthday this year. It was 25 years ago today—June 5, 2006, the date we release this report—that Dr. Michael Gottlieb diagnosed a strange illness among five of his white gay patients at University of California, Los Angeles. Since then, AIDS has become a defining issue of our time, particularly for Black folks.
In March 1998, the Centers for Disease Control and Prevention convened a group of Black AIDS service providers to talk about the rapidly hardening reality that America was facing not one, but two epidemics: one white, the other Black; one with access to care and life-saving information, the other isolated outside of the vast network of resources that had been set up to help stop the epidemic.
Just a couple of years earlier, African Americans had overtaken whites as the population with the largest share of AIDS cases diagnosed annually. The story of AIDS was rapidly and dramatically changing, as new drugs that hit the market in 1995 literally brought people back from death’s door. But not only were the drugs massively expensive, patients also had to be plugged into quality care to know about them—not to mention to manage the still-complicated treatment regimens they required. For those who met these requirements, AIDS suddenly stopped being a death sentence: HIV mortality in the U.S. dropped a staggering 70 percent between 1995 and 1998. Among whites, deaths dropped from more than 22,000 in 1994 to just over 7,000 in 1997.
But the picture for African Americans looked much different. Black death rates dropped too, but far more slowly. In 1996, for the first time, more African Americans died of AIDS than whites. By 2001, the annual Black death toll was nearly double that of whites. Today, we’re more than seven times more likely to die from AIDS once diagnosed with HIV than whites.
CDC officials saw all of this coming in spring of 1998, and shared their plans for addressing the divide with the Black AIDS leaders they convened in Atlanta that March. But the community leaders, equally shocked, sprung into their own action. In a joint statement, they declared HIV/AIDS had reach a “state of emergency” in Black America, and began making the rounds in Washington, D.C., to see what could be done about it. The White House Presidential Advisory Council on HIV/AIDS endorsed the community declaration, and in April long-time Black AIDS leader Dr. Benny Primm presented it to the Congressional Black Caucus’ (CBC) Health Brain Trust as well. The CBC picked up the ball and ran with it. Finally, they declared, it was time for national lawmakers to directly address AIDS among African Americans.
The result was that in October 1998 Congress passed a program that has now become known as the Minority AIDS Initiative.
This collection of testimonials is meant to both inform and inspire more of just this sort of action. The 25 voices collected here come from varied walks of life, representing just a handful of the sectors of Black America that have begun to mobilize. Some are recognizable names, but most are everyday people who have found a way to get involved. None set out to become AIDS activists, they just found ways to make a difference through the work they were already doing.
And that is the message we hope readers will carry forward with these testimonials: that every contribution, big and small, counts. Whether it’s singing a song at the funeral of a loved one who died from AIDS, as one contributor describes, or launching a massive HIV testing campaign in your church, as another recounts, you can make a change. For 25 years now, AIDS has been killing us one person at a time; we can beat it back with one brave act after another as well.