Wake up, my gay, white brothers and sisters! AIDS is ravaging people of color
“It’s over” is the subtext of the mainstream media’s AIDS coverage these days. Even the CDC, in its rush to disavow its mostly doleful record, jumps at every opportunity to claim success in making HIV infection allegedly a chronic disease. While reading these reports or talking with those who’ve been AIDS leaders and health workers since 1982, I’ve become convinced that I live in two separate Americas. To be black or Latino in this country is to be invisible, a virtual alien.
As my white gay brothers and lesbian sisters couch their claim of equality in the warm radiance of the Civil Rights Movement, they also seem willing to walk away from AIDS as it extends its grip on other, nonwhite communities. One gay activist I know even had the nerve to announce that names reporting was no longer “that big of a deal” because “those” people are used to being manipulated by society.
Well, it is a big deal. In the barrios of Los Angeles and San Antonio, Texas, in the naked blocks of East New York and Roxbury, Massachusetts, and in the still–Jim Crow towns in Alabama and Georgia, AIDS is ravaging people of color. Government officials—along with the rest of the AIDS industry—have known since the mid-’80s that the epidemic was marching with blitzkrieg efficiency into minority communities, but they have yet to produce a comprehensive program that even begins to address it. As a result, the nation has been lulled into passivity.
AIDS isn’t over. For many in America, it’s just beginning. Like so many of our past heroes, black and Latino leaders must now step forward to lead their people through this nightmare. The obstacles are immense: Targeted prevention education is sorely absent, as is fundamental health care, and worst of all, many people of color lack the economic wherewithal to obtain it even if it were available. The state-run AIDS Drug Assistance Programs (ADAPs) remain fiascos for the poor and undereducated. Procedures for accessing ADAP are cumbersome at best, and applied unfairly from state to state. Yet a working group of pharmaceutical representatives and AIDS activists—some of whom see their responsibility to advocate for needy people with HIV as an opportunity to get public-relations contracts—play patsy with one another while their constituents of color are denied treatment.
Besides lagging in overall health indicators, the nation’s minority communities are often deeply suspicious of authority figures who have come to be viewed, rightly or wrongly, as the enemy. In communities of color, AIDS and several other afflictions are viewed as government-implemented diseases designed to keep people down and out. In light of the now-infamous Tuskegee syphilis experiments earlier this century, the fear of the government’s racial conspiracies produce intense discussions within the black community.
It’s not hard to understand the persistence of such conspiracy theories. Today, far too many AIDS specialists are seeing patients of color who have had AZT monotherapy prescribed to them by other doctors as their only treatment option. This is astounding in light of the resources that government agencies and ASOs have invested in developing treatment guidelines. The Department of Health and Human Services’ incompetence (at best) has kept the guidelines a virtual secret from both patients and many doctors who work primarily in minority communities.
But such travesties are largely hidden from insensitive leaders in the larger AIDS and gay communities. I will never forget when, as chair of AIDS Action Council in 1994, I was in a meeting with many of our current and former AIDS leaders—all white—when someone said that we had to keep it a “secret” that AIDS was now a “disease of blacks.” While the strategic intent—to protect donations—was perhaps honorable, the reality it reflected was disheartening: that our nation could support AIDS research, care and services for a mostly white, gay population, but that it was not politically feasible to sustain that support to fight the disease in the black community. I am sure that for some in the room there was another fear: that resources would be taken away from their own work in the gay community.
Just a few weeks ago, in response to my asking why the organization had no people of color on its board or staff, a top official at AmFAR replied that it was a “cultural thing.” Well, you’re damn right it’s a cultural thing if by that she meant that in America, it’s culturally acceptable to have one community make decisions for another.
I am hopeful that AIDS will activate minorities, as it did gay men and lesbians, to return to activism. The recent efforts by the Congressional Black Caucus are important first steps. But in my wildest dreams, I wish for the day Julian Bond, John Lewis, Alexis Herman, Spike Lee and Oprah Winfrey join together with others and march in Washington, DC, to demand full health care access to minority communities, especially its youth. Just imagine Jesse Jackson meeting with pharmaceutical company executives to demand equitable pricing. The thought makes me salivate.
It is my hope that before even one more white person says AIDS is over, he or she thinks first about the message that sends to people of color.