THIS IS THE FIRST ARTICLE IN A SIX-PART SERIES
In a six-part series the Voice will explore many issues that cloud understanding of a complex public health crisis which disproportionately affects black communities in New York State. Even as AIDS deaths decline among other groups, the disease remains the leading killer of African Americans aged 25 to 44. The series will highlight the efforts of community leaders working to stem the rise in cases.
Lenox Avenue from 132nd to 137th buzzes with people—all of them targets for Tyrone Johnson’s cadre of HIV-positive outreach workers—milling about bodegas, playgrounds, and fast-food eateries. The goal is to get people into a van parked nearby for a free HIV test. Johnson’s got it down to a science. “They see free, and they’ll stop,” he says.
Four years ago, when Johnson first walked these streets handing out condoms, new drugs emerged that finally beat back AIDS death rates. People with AIDS whispered of relief; the media screamed victory. “When Plagues End,” a New York Times Magazine cover story, explored the aftermath of the epidemic since AIDS had become a chronic disease rather than a death sentence.
But in black communities like Harlem, the plague was just beginning. “What you see uptown, it’s almost like a whole different world. It’s almost like HIV/AIDS in 1983, 1984,” sighs Johnson’s boss, Harlem United’s deputy director for prevention, education, and policy, Soraya Elcock.
Nationally, AIDS is the number one cause of death for African Americans between 25 and 44 years old. One in 50 black men and one in 160 black women are HIV-positive—compared to one in 250 and one in 3000 white men and women. The U.S. Centers for Disease Control and Prevention in Atlanta estimates that almost 60 percent of all new HIV infections are occurring among blacks.
New York State mirrors the national trend. Over 40 percent of the state’s cumulative AIDS cases to date are among blacks, who account for only 14 percent of the population. Over 56 percent of all children under 12 with AIDS are black. In counties outside of New York City, blacks and Latinos account for around 10 percent of the population and 60 percent of the cumulative AIDS cases.
So in the last two years, black policy makers and community leaders have begun sounding alarms. “We’re looking at the funding numbers, and [asking] why doesn’t the money go to where the epidemic is?” says Christopher Gray, a Long Island AIDS activist who recently convinced the HIV Prevention Planning Group, an advisory body to the New York State AIDS Institute, to recommend a new focus on blacks.
For years, Gray and others argue, public health officials and community groups alike have failed to target resources appropriately. As early as 1983, African Americans accounted for 26 percent of national AIDS cases. In New York State, African Americans have accounted for at least a third of reported AIDS cases yearly since 1982.
“Even in the beginning, there was a disproportionate representation [among blacks],” laments Dr. Helene Gayle—who is black—director of the National Center for HIV, STD, and TB Prevention at the CDC. “People did not necessarily pay as much attention to it.”
That is gradually changing. The CDC began earmarking funds for minority community initiatives in 1988, but those funds were relatively insignificant until the Congressional Black Caucus prompted President Clinton to declare AIDS a “state of emergency” in the black community in 1998. In reaction, Congress has annually earmarked $245 million for initiatives in communities of color. State health officials, skittish about declaring a hard number, estimate the state spent almost 80 percent of its total HIV-prevention funds (separate from the federal funds it receives) on programs targeting communities of color in 1997, and they plan to increase that share in coming years.
But if the epidemic has had a disproportionate impact on black communities, why are public health officials, AIDS activists, and black community leaders only now, 20 years later, pointing it out?
Harlem United’s Elcock blames both the CDC and local AIDS groups for excessively focusing on injection-drug users and gay men, allowing everyone else to avoid confronting their own risk. “And any time you looked at the television or read something, it was about the Gay Men’s Health Crisis, it was about white gay men, it was about ACT UP. And so the black community separated from that; [AIDS] didn’t belong to us.”
Nor did the black community want to own it. The virus’s impact among black injection-drug users and black gay and bisexual men has always been visibly dramatic. It’s the straight black women, blacks upstate, seniors, and middle-class blacks, Elcock says, who are now getting infected and driving the epidemic to a new level.
As he patrols Lenox, Johnson looks around and offers a more basic reason for both HIV’s spread in the community and the delay in noticing it: Black folks don’t take care of themselves, never have, so why should HIV be any different? “Ask some of these people when was the last time they went to the doctor,” he challenges. “We don’t go to the doctor unless something is burning, turning colors, or about ready to fall off.”
From heart disease to diabetes to asthma, the black community has always led the nation in health problems. Therefore, activists say, prevention must become part of a larger discussion about health and the social forces that threaten black community wellness.
Elcock, who serves as community cochair for the New York City HIV Prevention Planning Group, adds, “The whole family gets disrupted. Mom is dead, Grandma is raising those kids, and she hasn’t got a clue herself. She may know her ‘baby’ died from HIV, but not what an adolescent or a little one might need. So she’s raising, for me, that next level of HIV incidence—that adolescent whom nobody has talked to.”
The black church presents another challenge. The Balm in Gilead, a Manhattan-based coalition of 10,000 black churches and ecumenical groups, has been trying to engage religious leaders for 10 years. Founder Pernessa Seele says she’s seen a marked jump in the spiritual community’s response in thelast three years. Last week, Balm launched a national multimedia initiative, “The Black Church Lights the Way,” urging people to get HIV tests.
“It is essential for the black church to be involved in our community, because in our community we mobilize around the pulpit,” Seele says.
Meanwhile, the Caribbean Women’s Health Association’s Verna DuBerry warns that everyone must remember that in New York City, African American communities greatly overlap with Caribbean and Latino communities. The understanding of AIDS in Harlem may be only at 1980s levels, but Brooklyn’s Caribbean community still will not even name the virus. DuBerry says most people don’t admit they are positive until they are on their deathbeds, and then their families call it cancer or pneumonia.
Johnson, however, is confident in the community’s proven ability to fight uphill battles. “We’re not powerless over this virus,” he insists. “When you look at the numbers, it looks like we’re powerless. But we can stop spreading it.”
Shrugging, he acknowledges the obvious. “We are behind.”
AIDS AND BLACK NEW YORKERS, A SIX-PART SERIES:
Part I: Emergency Call by Kai Wright
How AIDS Is Hurting Black Communities
Part II: Black, Gay, At-Risk by Kai Wright
Homophobia, Racism, and Rejection Fuel Rising Infections
Part III: The Tuskegee Effect by Kemba Johnson
For Blacks, a 28-Year-Old Study Is One of Many Barriers to HIV Prevention
Part IV: Double Jeopardy by Kai Wright
In NY State Blacks Rank Highest Among HIV-Positive Inmates
Part V: Black Women and HIV by Sharon Lerner
Rising Infection Rate Reflects an Age-Old Gender Imbalance