Battling a Black Epidemic

It's a warm spring morning, and two dozen African-American women are gathered around a conference table at the Women's Collective in Washington, D.C. Easter is just a few days away, but nobody is thinking about painted eggs and bunny rabbits. The collective, less than two miles north of the White House, is a haven for HIV-positive women, and on this day the focus is on sex, condoms and prevention. "Our responsibility," says one woman in a rousing voice, "is to tell the truth!" Together, the women are on a mission to educate, empower themselves and stop the spread of the virus. Patricia Nalls, the collective's founder and executive director, asks the group to read a fact sheet about HIV and AIDS, a staggering array of statistics documenting the impact of the disease in the United States. "So now we know what's happening to us," says Nalls.

What's happening is an epidemic among black women, their husbands, boyfriends, brothers, sisters, sons and daughters. Twenty-five years after the virus was first documented in gay white men, HIV has increasingly become a disease of color, with blacks bearing the heaviest burden by far. African-Americans make up just 13 percent of the U.S. population but account for an astounding 51 percent of new HIV diagnoses. Black men are diagnosed at more than seven times the rate of white men, black females at 20 times the rate of white women.

Decades into the epidemic, scientists have made enormous strides in unlocking the disease at the molecular level. Understanding why HIV has taken hold of black America and how to prevent its spread has proved to be no less daunting a challenge. The root of the problem is poverty and the neglect that comes with it--inadequate health care and a dearth of information about safe sex. IV drug use, sexually transmitted diseases and high-risk sex (marked by multiple partners and no protection) have fueled transmission; homophobia and religious leaders steeped in moralistic doctrine have suppressed honest conversations about how to stop it. All the while, much of black leadership has been slow in responding, only recently mobilizing to protect its community. HIV, says Cathy Cohen, a political scientist at the University of Chicago and author of a book about blacks and AIDS, "is one of the greatest crises threatening the black community. It's the life and death of black people."

The crisis plays out in inner cities and rural towns alike, where money, education and access to good medical care are limited. Protecting against HIV isn't necessarily priority No. 1 among the poor. "If you're focused on day-to-day survival, you're not thinking about where to get condoms," says Marjorie Hill, of the Gay Men's Health Crisis in New York City. Alijah Burwell, 39, lives in a rundown 110-year-old clapboard house with seven family members in Oxford, N.C. Burwell, who was diagnosed with HIV eight years ago and has long had sex with both men and women, doesn't know which of his partners made him sick. "I had one too many" is all he'll say. But for several years after he was diagnosed, Burwell says, he continued to have sex, often unprotected. And he didn't tell the women that he was sleeping with men too. He also smoked crack and drank a lot. And though he sought treatment for HIV, he wasn't vigilant about taking his medication, spiking his viral load, which made him a greater threat to his partners.

The virus once referred to as "gay-related immunodeficiency disease" has become increasingly gender-blind, especially in the black community, where heterosexual transmission accounts for 25 percent of male infections and 78 percent of female infections. Men who have sex with men still account for almost half of all male cases, and last week the Centers for Disease Control and Prevention published data pinpointing two key risk factors for transmission: STDs--which facilitate infection--and low levels of testing among black men. STDs are a menace for both African-American men and women: gonorrhea rates, for example, are 26 times higher in black men than white men and 15 times higher in black females. Testing takes initiative, time and a willingness to overlook stigma on the part of both sexes.

Even 25 years on, that stigma is powerful. The AIDS and STD clinic in rural Henderson, N.C., is tucked away near the back of a one-story medical building. A small sign next to the door says northern outreach clinic. Only inside, where HIV posters adorn the walls, is the clinic's mission clear. "No one wants anyone else to know they're infected," says Dr. Michelle Collins Ogle, who treats more than 200 men and women, mostly black and poor, ranging in age from 18 (a young woman who contracted HIV as a sexually active 10-year-old) to 79 (a widower who appears to have been infected by a young girl who traded sex for his financial support). Before funerals, family members will hint to Ogle that the presence of the woman known as "the AIDS doctor" would be embarrassing. Especially when they've told other loved ones that the cause of death was cancer.

Such denial is hardly uncommon. With powerful drugs saving lives, some African-Americans believe the threat is either over or limited to gay white men. Distrust of the medical establishment has never fully waned since the Tuskegee syphilis experiment, launched in the 1930s; in a 2005 poll, 27 percent of black Americans said they thought "AIDS was produced in a government laboratory." Every day, such wariness and misinformation breed new infections. In a recent five-city study of more than 2,000 gay and bisexual men, researchers found that nearly half of black men tested positive for HIV--and of those, an astounding two thirds did not know their status.

Burwell learned that he was positive after being tested while serving a drug sentence in prison--a hotbed for HIV, with a disproportionately high population of blacks. According to a new government study, the vast majority of HIV-positive inmates contract the virus before they enter prison. But some men become infected inside. Harold Atkins, 30, spent just over five years in San Quentin State Prison in California, where he was a peer educator for Centerforce, a group that provides HIV education to inmates. "There was a lot of sex happening in prison," says Atkins. There was not a lot of clarity about sexuality, however. "The same individual who had unprotected sex with males on the inside Monday through Friday would be in the visiting room with his wife and kids on Saturday and Sunday," says Atkins, who himself is HIV-negative. The men, who engaged in what Atkins calls "survival sex," did not consider themselves homosexual, and they didn't tell anybody on the outside what they were doing. "They'd say, 'I have sex with men. I'm not gay, they're gay'."

Driving this sexual ambiguity is homophobia in the black community. The prototypical black male role model is big, strong and masculine; being gay or bisexual is weak. It's also a sin. "The church has caused people to go underground" about their sexuality, says the Rev. Charles Straight, who helped launch an AIDS ministry in 1984 and is now an assistant pastor at Wesley United Methodist Church in Chicago. "People are afraid to be who they are." That fear has driven some men to have sex with men "on the down-low": secretly indulging in homosexual behavior while keeping up the appearance of being straight--and sleeping with their girlfriends and wives without protection.

Is the DL contributing to the spread of HIV among blacks? There are no scientific data to support the hypothesis. And the phenomenon has caused consternation in the black community, where men already battle stereotypes about sexuality. But women who've fallen victim say people need to know that it happens. Margot, now 52, learned she was HIV-positive when she was pregnant in October 1991. Margot says she was never promiscuous and never used drugs. "My fault was that I slept with my husband," she says. Margot says her now ex-husband never discussed his sexuality, but through conversations with his family and her doctor, it became clear that he was having sex with a man, most likely a buddy from work. In January 1992, Margot's baby was born HIV-positive. In March 1994, she died. "It's so horrible," says Margot, "every day knowing you had to bury a child as a result of lies, mistrust and misdeeds."

The DL has made Oprah-esque headlines, but there are far less sinister factors involved in the spread of HIV. Dr. Donna Futterman, director of the Adolescent AIDS Program at the Children's Hospital at Montefiore Medical Center in the Bronx, N.Y., says about half of the young women she sees have had only one sex partner and don't consider themselves at risk. "They say, 'I can look into his eyes and know. He looks fine, he looks clean, he told me he loves me'," she says. Women, young and old, enter into or stay in risky relationships because they're desperate for financial security. They're also eager to be loved. Diane Campbell, 50, tested positive after she and her boyfriend stopped using condoms. Low self-esteem, says Campbell, played a major role: "I let my guard down with the wrong person." Women can infect men, too. Ricky Allen, 45, who is straight, believes he contracted HIV from his late wife, who infected their baby daughter. Both have since died.

Activists are determined to stop the dying, neighborhood by neighborhood. In Henderson, N.C., Ogle coordinates a team of outreach workers who preach safe sex and hand out condoms and dental dams, even in areas where crack is rampant and often traded for sex. Every week, the Center for Health Justice in Los Angeles distributes condoms to inmates in L.A. County jails, and at the Falkenberg Road Jail in Tampa, Fla., prisoners are given rapid HIV tests so they know their status before release. In New York, GMHC's Women's Institute sends Laverne Patent, a 54-year-old HIV-positive woman, to beauty salons; one recent Saturday morning, she gave out "pussy packs" containing condoms to clients at Hair Players 2000 in Brooklyn.

The Women's Collective, operating at an epicenter of the epidemic--the nation's capital has one of the highest rates of AIDS cases in the country--provides services and builds self-esteem even as it, and similar groups nationwide, battle debilitating cuts in funding. Black Entertainment Television, partnering with the Kaiser Family Foundation, spent $15 million in donated air time last year to run public-service announcements encouraging teens to "Rap It Up" and get tested--a potential inoculation against the nonstop bombardment of sexual music and videos. And the CDC, which devotes 43 percent of its $650 million HIV budget to the black community, is exploring new testing and prevention programs, like North Carolina's "d-Up," aimed at educating men at black bars and clubs, says Dr. Kevin Fenton, CDC's AIDS chief.

Nowhere is the need for change greater than in the black church. "It is the center of turning this crisis around," says Pernessa Seele, founder of the Balm in Gilead, which began mobilizing clergy in Harlem in 1989 and now works with 15,000 churches nationwide. The challenge is getting church leaders to acknowledge sexuality, not preach against it. "Too many pastors are still stuck on theological doctrine. They have not been able to see the suffering," says Seele. Progress is being made little by little. The Rev. Doris Green, of the AIDS Foundation of Chicago, has been pounding on pulpits for years. Some churches have shut their doors; others have braved the challenge. One even "did a condom demonstration in the church with a dildo!" says Green. "That blessed my heart."

The future of HIV in the black community is in the hands of young warriors like Marvelyn Brown and Shelton Jackson. Brown, who just turned 22, tested positive in 2003, the victim of unprotected sex with a guy she thought was her soulmate. News of her diagnosis "spread like death" in her hometown of Nashville, but Brown has refused to stay silent. She went public in a local paper in 2004 and is now working with Kaiser to get the message out. Last month Brown toured college campuses with Hope's Voice, a prevention outreach group aimed at young adults. At Brown University, after another speaker pointed out that kissing isn't a risk factor for HIV transmission, Brown quickly interjected: "It depends on what you kiss."

Jackson, 28 and HIV-positive, was on tour that day, too. An openly gay student at Morgan State University in Baltimore, Jackson watched his partner die of AIDS in 2002. Today, he's eager to break the stigma and dispel the myths. He says he'll talk to people about HIV "anywhere they will listen." His hope: if one man acts up, others may follow.