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Harvard AIDS Review


Leading for Life

By Helen Kao

By the year 2000, more than half of all people with AIDS in the United States will be African American. For African Americans under the age of 55, AIDS already ranks as the leading cause of death, before heart disease, cancer, and homicide.

Last fall, more than one hundred African American leaders convened at Harvard University to address this crisis. The start of a national campaign entitled Leading for Life, the day-long summit called upon leaders from diverse professions to ensure that the knowledge gained at the summit would be disseminated to the greatest number of African Americans possible.

This is an historic gathering and a call to arms against a disease that is ravaging our community, said Henry Louis Gates, Jr., director of Harvards W.E.B. Du Bois Institute for Afro-American Research, in opening the summit. He compared the AIDS epidemic to the Vietnam War. AIDS is our generations war. Each of us knows victims of this dread disease. More than a dozen of my intimate friends have died of AIDS, and as many more are HIV positive. And like the war, a disproportionate number of people infected with HIV--and those who have succumbed to AIDS--are African American.

Marian Wright Edelman, founder of the Childrens Defense Fund, spoke for many when she expressed her frustration at the toll the epidemic has taken on the African American community: We cannot sit idly by and watch our people pass away. Such an insistence on action was repeated throughout the course of the summit and brought to mind for many the African American men and women who refused to be relegated to the back seats of the nation when the civil rights movement began.

Our response to AIDS must have the energy and moral equivalence of a civil rights movement, declared Alvin Poussaint, professor of psychiatry at Harvard Medical School and a Leading for Life organizer. Randall Morgan, president of the National Medical Association, concurred. It is our duty and responsibility as a people to be among the most articulate in declaring freedom from AIDS and then to be the most active in making that freedom happen.

Participants voiced alarm at projections of the epidemics continued impact on African Americans. Researchers estimate that 300,000 to 500,000 African Americans are already infected with HIV and that by the year 2000, African Americans will be nine times more likely to be diagnosed with AIDS than nonAfrican Americans.

How many of us will be infected before it becomes our problem? asked Phill Wilson, founder of the National Black Gay and Lesbian Leadership Forum. How many will develop AIDS? How many will die? Three hundred thousand people later, I still wonder what has to happen for it to be our problem.

The Leading for Life summit focused on answering Wilsons questions. Sponsored by the Harvard AIDS Institute, the National Minority AIDS Council (NMAC), the Balm in Gilead, the W.E.B. Du Bois Institute for Afro-American Research, and the Henry J. Kaiser Family Foundation, the summit sought to gain the commitment of participants to combat AIDS in the African American community and to provide them with the necessary information and tools for action.

Gates noted that throughout the history of the epidemic, the African American community has been reluctant to speak about AIDS. In part because of a traditional homophobic tendency in our culture, in part because of ignorant stereotypes about the epidemic, our people, our culture, have long been in denial about AIDS in the black community, he said. The consequences of such attitudes, he added, have been the increasing spread of HIV and the stigmatization of those already infected.

Participants spoke of frustration about their failure to make the African American community recognize the urgency of the crisis and the frightening repercussions of the communitys inaction, fear, and denial. We knew African Americans were disproportionately affected in 1985 and we know the same today, yet the black community in general remains silent, said Norm Nickens, chairman of the board of NMAC.

Belynda Dunn, an AIDS educator living with HIV, described personal repercussions of the communitys silence: This is an emergency meeting. Yet, where have all of you been? AIDS was an emergency when I found out that I was infected and there were no services for me. There was no support in the black community for a straight black woman with HIV.

Today HIV is spreading rapidly among women and children. By the year 2000, African American women will be twenty times more likely to be diagnosed with AIDS than nonAfrican American women. The African American community is also losing more of its young members to AIDS than to any other cause of death. African American children--already nearly 60 percent of all pediatric AIDS cases--are almost five times as likely to be diagnosed with AIDS as white children. With so many other pressing social problems, much of the African American community has overlooked the threat of AIDS to the communitys future.

Theres a taboo about talking about it, Poussaint said, and theres still a lot of despair. Weve already got crime, violence, teenage pregnancy, homelessness; AIDS is considered just one more problem. But AIDS, he says, is a problem that demands immediate attention in its own right, as well as in relation to problems such as teenage pregnancy and substance abuse.

To eradicate fear and ignorance and to bolster the African American communitys defenses against the HIV epidemic, Leading for Life summit participants targeted four focus areas: communications, prevention, public policy, and services and care.

To provide information on HIV to as broad an audience as possible, the communications component of the campaign aims to increase accurate and sensitive coverage of the epidemic in broadcast and print media at local and national levels.

The goals of the prevention campaign are to develop dependable funding to ensure consistent, comprehensive, and pervasive prevention efforts that are community based and community driven. Cultural sensitivity is a priority, and nonjudgmental attitudes toward homosexuality, drug use, and sex are required. The efforts will be conducted in tandem with domestic violence counseling, substance abuse prevention, and adolescent sex education.

On the political front, the campaign focuses on introducing and safeguarding public policies that protect the health of all individuals. Members of the Congressional Black Caucus, leaders of national organizations, church leaders, and local and state officials are being called upon to place AIDS high on their public policy agendas and to help raise funds for HIV prevention and research.

Finally, the Leading for Life participants recognized that a disproportionate number of African Americans, and those infected with HIV, live in the most at-risk and underserved neighborhoods. They vowed to create programs to advocate for the care of African Americans living with HIV and to ensure access to treatments. They acknowledged that needle exchange programs and substance abuse treatment must be approved and adequately funded. They called upon foundations and the private sector to support African American organizations, and they urged that care for individuals and families extend beyond medical care to child care and spiritual support.

The Leading for Life organizers expressed cautious optimism that, by the year 2000, their work will help ensure that current projections for the spread of HIV will not prove true. Committed to ending the HIV epidemic in African American communities, the summits organizers resolved that efforts would not end with the summit.

Today, the Leading for Life campaign is a unified, national effort by African Americans to fight the HIV epidemic and to free African American communities from the devastation of the disease, said Mario Cooper, a member of the Harvard AIDS Institutes International Advisory Council and the founder of Leading for Life. It is a campaign to affirm the most fundamental human right--the right to life.

At the summits close, participants adopted a national Call for Action, which reiterated the importance of a diverse leadership and focused not only on the disease itself, but also on the societal contexts that have obscured the epidemic behind fear, ignorance, and denial.

In their final statement, the participants resurrected sentiments from the civil rights movement and the Vietnam War era, calling for action to secure for African American children a future free of sorrow and unnecessary death. They appealed for a unified effort: We call upon all African Americans to reach out, hand in hand, to others locally and globally, to advocate, care, and affirm our commitment to the health of our communities. If we fail, our children will face the upcoming millennium with sorrow in their hearts, rather than hope of a new generation. And we will have to ask, Did we do all we could to stop the deaths and the devastation?

Helen Kao is special projects coordinator at the Harvard AIDS Institute.

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