Forget money, meds and media. What we need most is an African American ACT UP

If the African-American community is to save itself from an AIDS epidemic as devastating as anything sub-Saharan Africa is facing, we need our own ACT UP. More than money, more than media attention, more than HIV medications, we need the kind of body-on-the-line activism that would make Rosa Parks, H. Rap Brown and Martin himself proud. But why is it so hard for black people to march against HIV/AIDS?

What we need, right now, is for 20 African Americans with HIV to do a sit-in at the offices of the Congressional Black Caucus and demand that the caucus make AIDS the number one issue on its agenda. If Magic Johnson wants to come risk arrest, he's more than welcome, but we cannot wait: With or without the support of our celebrities, our churches, our family and friends, African Americans with HIV must hold our own leaders accountable.

It's Senator Barack Obama and Representative Maxine Waters who know our needs -- and it's they who must take a strong stand and act as facilitators of our demands, which have already been articulated with great force by the Campaign to End AIDS. These include equal access to quality treatment and support services for all people with HIV/AIDS; effective prevention guided by science, not ideology; research to find a cure, not merely better drugs; and civil rights for people with HIV/AIDS.

We also need the Black Caucus to do some fast trouble-shooting and fix the mess Bush has made of Medicaid, so people with AIDS can get the meds they need to stay alive. And we need the Black Caucus to march into Congress and demand that those rich white men take the war on black AIDS as seriously as the war on terrorism.

Ten years ago, I organized an initiative called Leading for Life. We rallied African-American leaders to make noise about AIDS. Even though the black epidemic was already exploding, it was hard to get anyone with influence to admit AIDS was a problem -- our problem. Organizations like the NAACP and the Urban League at first refused to go anywhere near the issue. For them, AIDS was a "gay" disease. I remember the tension in the room when I disclosed my own HIV-positive status to leaders I had respected and worked with. I left more than one meeting with tears in my eyes. It was a reality check about what African Americans with HIV were up against.

Eventually, with a grant here and a celebrity there, Leading for Life came to life in October 1996, at a Harvard University summit attended by the nation's top two African-American health officials at the time. Harvard professor Henry Louis Gates opened the meeting with fiery rhetoric: "This is an historic gathering and a call to arms against a disease that is ravaging our community. AIDS is our generation's war." The tears in my eyes that day were tears of hope.

But I look at where we are in 2006 compared to where we were a decade ago, and it's as if we're in the same place -- and that is heartbreaking.

It's not that we haven't made progress. It's that the virus has made so much more.

The statistics are staggering. HIV rates among black men who have sex with men may be as high as 46 percent -- which would mean that almost one out of two of us are already infected. The rates for African-American women are 19 times those of white women, five times those of Latinas; it's true that they dipped a bit in 2004, but it's too early to tell if that's a trend. We get diagnosed later and we die faster -- about 40 percent of all AIDS deaths are African American.

The crisis is as serious now for certain parts of the black community as it was in the 1980s for the white gay community, when they formed ACT UP and went on to seize the U.S. Food and Drug Administration, storm the National Institutes of Health and throw the ashes of dead HIV-positive people on the White House lawn. The HIV rates for African Americans are an outrage. The fact that we are not acting up is too.

Acting up works. Within a year of the Leading for Life summit -- thanks largely to the crusading work of Balm in Gilead in rallying the support of many small black churches around the country -- the Congressional Black Caucus had put AIDS at the top of their legislative agenda. More important, the caucus was pressuring President Clinton to allocate $156 million in "emergency" funds for AIDS in minority communities.

We had a year of activity. America recognized that "face of AIDS" was now Black. There was movement.

But what we need is a movement. A national group of people with HIV, church leaders, grassroots prevention and treatment advocates, policymakers. A black ACT UP.

And despite what many heads of AIDS service organizations say, more money is not the answer. Under Clinton, dollars poured into the African American community for HIV/AIDS. But we have duplication of services, a lack of accountability and an excess of poor management. As more and more drugs to control the virus became available, AIDS organizations shifted emphasis from prevention to treatment. They dropped the ball when it came to creating effective prevention that confronts sex openly and honestly -- something the African-American community has never been able to do.

Under Bush, the money continues flowing, though it increasingly flows to church groups that specialize in our President's beloved abstinence programs.

As our veteran advocates have been yelling for years, we need targeted, explicit prevention campaigns, condoms and clean needles if we want to be serious about controlling HIV infections. African Americans in sexual- and drug-abuse networks propel this epidemic. Most of them do not know they are positive. And we keep hearing about how "hard to access" they are. Well, in Washington, D.C., where I live, they're easy to find -- the city jail is packed with them. In fact, our nation's capital is our nation's shame when it comes to AIDS. The HIV rate in D.C. is 10 times the national average, and most of those infected are African American. Twenty years into the epidemic, that tells you all you need to know about how much our government values the lives of black folk.

What is stopping us from taking the streets and disrupting business as usual to sound the alarm about black AIDS? We know we are capable of fighting for our rights, facing down water hoses and police dogs, even marching into Capitol buildings. What is it about HIV/AIDS that holds us back?

Maybe we're too used to hiding the fact that we're gay, or that we're loving a woman while we sleep with men on the side. So many of us grew up going to church with our mothers and still don't want to do anything to embarrass the family. We are all in deep denial.

We must fight to lift the veil of denial, and we must do so with dignity and leadership. We must come together hand in hand to fight both AIDS complacency and AIDS stigma in the African-American community. Every denial, every "no" -- no to condoms, no to getting tested, no to Christian charity, no to voting -- equals a death when dealing with AIDS. A denial of AIDS Drug Assistance Program drugs could mean a death. A denial of a child's homosexuality could mean a death. As African Americans with HIV, we know this better than anyone else, so it's our responsibility to lead the way, to refuse to accept no for an answer, to lay our bodies on the line. Act up -- and prove that Martin's legacy is alive.

Mario Cooper

About Mario Cooper

Mario Cooper is a long-term survivor of HIV and a longtime AIDS and gay-rights activist. A lawyer, he served as an advisor to Bill Clinton's '92 presidential campaign and as the manager of the '92 Democratic National Convention in New York City, after which he was chair of the AIDS Action Council board and a board member of the Gay Men's Health Crisis and the Harvard AIDS Institute. In 1994, he began organizing the Leading for Life Campaign, a coalition of influential black academics, advocates and other movers and shakers, to raise awareness of the burgeoning HIV epidemic in the African-American community. After being turned away by such black civil-rights bulwarks as the NAACP (National Association for the Advancement of Colored People), he used his Clinton contacts to win the support of the nation's two leading African-American health officials, U.S. Surgeon General Dr. David Satcher and Dr. Helene Gayle, the head of the CDC (Centers for Disease Control and Prevention)'s HIV/AIDS division. Launched at the Harvard AIDS Institute in February 1996 to much media fanfare, Leading for Life is widely viewed as the spark that lit the prairie fire of AIDS awareness and advocacy in the African-American community. For a more complete account of Cooper's legacy, check out Jacob Levenson's monumental new book, The Secret Epidemic: The Story of AIDS and Black America.