Joyce Turner-Keller, a 46-year-old flight attendant, was leaving home for a jog through tree-lined Picayune, Mississippi, when a white man in a police uniform leaped from the bushes and pushed her through her front door. As she tried to fight him off, the man choked her until she passed out, then raped her. “I remember him saying I was a black woman who had taken a white woman’s job,” she recalls.
Yet Turner-Keller didn’t utter a word to the authorities. Her assailant told her that he would never deny that they had sex, but that it wasn’t rape. Six years later, when she got a staph infection that wouldn’t heal, she was stunned to learn she had full-blown AIDS, a consequence of that terrible day in 1995.
Today, Turner-Keller can’t stop talking. As founder and executive director of Aspirations, a Baton Rouge, Louisiana–based nonprofit, she provides testing for HIV/AIDS and other sexually transmitted diseases (STDs), teen peer education, youth education, stigma-awareness training and a full range of services for people with HIV and the community at large, including a summer camp during which she teaches AIDS awareness to children as young as 8 years old.
“Before my diagnosis, I was a good Christian woman who prayed every day. I used to think AIDS was somebody else’s house on fire,” recalls Turner-Keller, who after her own diagnosis was surprised to learn how badly the disease is ravaging black Americans. “Now, I tell people that HIV knows no race, color or social status. This disease can hit anyone.”
These days, the disease is hitting hard down South. Once upon a time, AIDS seemed largely confined to white gay males in big Northern cities. Now, according to a study released by the Kaiser Family Foundation, in 2004 the South had the largest share of new AIDS cases reported by region, with 48%. The North was second with 27%, followed by the West with 14% and the Midwest with 11%. At 179 cases per 100,000, rates are particularly high in Washington, DC, where disproportionate numbers of African Americans are infected. Compare that to the state with the next highest, New York, with 40 cases per 100,000. No wonder HIV is now the third leading cause of death among black folks between the ages of 25 and 34, and the No. 1 killer of black women in that age group. Black women are now 23 times more likely than white women to have AIDS.
A clear and present danger
Why is AIDS cutting a swath through the South? And why are so many victims black? Consider these interconnected factors.
Poverty. In addition to being home to more black folks—20 million—than any other region, the South has more people living in poverty (nearly 15 million) and more without health insurance (19 million). Many people just can’t afford to go to the doctor.
While most HIV infections among heterosexual African-American Southerners are associated with risky behavior, “poverty may contribute to infection risk even in people who do not have high-risk behaviors,” says Adaora A. Adimora, MD, MPH, of the University of North Carolina School of Medicine. A 2006 study she led comparing 432 HIV negative and HIV positive black North Carolinians found that the HIV positive group was much more likely to express concern about not having enough to eat and to show other indicators of poverty. But—and here’s the kicker—27% of those who were positive denied using intravenous drugs, having a partner who’s having sex with others and engaging in other risky behaviors, leaving researchers to surmise that simply being poor can heighten a person’s risk of becoming infected with HIV. For example, low-income people are less likely to afford health care for treatable STDs, which can cause genital sores—an easy route for the AIDS virus to travel from an infected partner, even within the context of a long-term monogamous relationship.
Lack of health care infrastructure. “The biggest health challenge in the South is that in so many communities, if health care isn’t provided by public health officials, there is no care,” says Dázon Dixon Diallo, president and CEO of SisterLove, an Atlanta-based women’s and sexual reproductive health organization that specializes in HIV.
Even if there is a doctor nearby, “In many small communities, physicians aren’t trained in the medical intricacies of caring for HIV positive patients,” says Janet C. Cleveland, MS, deputy director for prevention programs at the Centers for Disease Control and Prevention (CDC). “If they have access to a car, people with HIV drive to Atlanta from South Carolina or even North Carolina to a federally funded AIDS clinic where they sit for another four or five hours to be seen.”
Discomfort with doctors. “When the nurse in Dr. So-and-So’s office is your grandma’s bridge partner, it’s easy to feel that everybody’s going to know your business,” says Diallo, of a common experience HIV patients face in small towns and rural areas. “It’s very easy to feel like you’re the only one with a health problem,” she says.
The legacy of the Tuskegee syphilis experiments causes many black Southerners to fear being used as guinea pigs; others believe that being HIV positive will subject them to further discrimination. “There are folks who don’t want to be tested, don’t want to know,” Bambi Sumpter-Gaddist, executive director of the South Carolina African-American HIV/AIDS Council, told a conference of state health care workers.
Sexual miseducation. Ninety-three percent of public high schools in the United States teach sex education, but the content varies by region. In the South, you can sum up the loudest classroom message in three words: Don’t do it. Nearly one in five Southern public secondary-school sex-education teachers–more than in any other region–teach that abstinence is the only acceptable birth control option and that condoms and other methods are ineffective, according to a 2003 survey by the Alan Guttmacher Institute, a nonprofit sexual and reproductive health organization.
Yet young people are still having sex. And when it comes to stopping AIDS, accurate information may be more valuable than just saying no. Cleveland recalls talking with two teenage girls of color: “They [wrongly] thought that since oral sex doesn’t involve vaginal penetration, it’s not really sex, so it has nothing to do with AIDS.”
Homophobia. An aversion to homosexuals isn’t confined to the South, and not every black Southerner is homophobic. But a deep loathing of lesbians and gay men is a part of the fabric of countless black Southern communities, in part because ministers preach it so vehemently.
“The average person has heard so many messages about sexual behavior and condemnation that it can be hard for them to enter a rational dialogue about HIV,” says Diallo.
“When you stigmatize people for their sexuality, they typically engage in sexual activity covertly,” explains Celia Maxwell, MD, director of Howard University’s Women’s Health Institute. Secrecy and shame can lead to risky behavior, and sometimes stigma can lead to men in heterosexual relationships secretly having sex with men on the “down low” (DL). Some experts now estimate that one-third of young gay black men have HIV.
“We haven’t been able to measure scientifically how much the disease has been spread [through the DL],” says Cleveland. She adds, “Anecdotal evidence suggests that it does happen.” But David Malebranche, MD, MPH, an Emory University public health researcher who has studied the behavior of bisexual black men, says research “doesn’t support the theory that DL men are a bridge for HIV to the general black community.”
Disproportionate incarceration of black men. The lifetime risk of going to prison is 32% for black males (compared with just 6% for white males). Nationally, the HIV rate among prison inmates is estimated to be ten times higher than the U.S. population. Studies show that up to two-thirds of male inmates have sex while incarcerated, sometimes forcibly. Condoms are illegal in virtually every prison in the nation, so HIV and other STDs can spread easily. Following their release, HIV positive men can infect their partners back home. About half of the infected inmates interviewed in a 2003 study by the University of North Carolina School of Medicine had unprotected sex within one hour to 31 days of their release.
Our people, our problem, our solution
Fortunately, black folks and our allies are coming up with creative, constructive responses to the HIV crisis. A sampling:
In Washington, DC, which has the nation’s highest rate of new AIDS cases, Rev. Christine Wiley and her husband and copastor at Covenant Baptist Church offer weekly HIV testing and distribute condoms through their food bank. Wiley recalls an elderly congregant asking whether even she needed to be tested. “Yes,” Wiley answered. “If you’re tested, then someone who has riskier behavior than you won’t feel so stigmatized.”
At North Carolina Central University in Durham, freshmen take a mandatory health course that covers HIV, according to the New York Times. The college also provides free HIV testing and condoms and sends safer-sex peer educators door-to-door in the dorms.
All women at Gadsden Correctional Institution in Quincy, Florida, attend eight-week classes on HIV risk factors, prevention strategies and treatment options. Those who are HIV positive gradually assume full responsibility for taking their medications by the time they’re released. One unexpected benefit: a dramatic decrease in discrimination against HIV positive inmates.
All three of these initiatives have something in common: taking charge. “This isn’t someone else’s disease,” says the CDC’s Cleveland. “This is our disease. We have to own it.”
Claiming HIV can help us reclaim our power, says Turner-Keller, whose CD4 cell count (a measure of immune system health) has soared from a sickly 43 when she was first diagnosed with AIDS in 2001 to 338 today, thanks to aggressive medical care and what she terms spiritual grounding. “Surviving the rape was more difficult than living with AIDS because the rape was an invasion. I have control over AIDS.”
PROPORTION OF NEW AIDS CASES BY RACE/ ETHNICITY
The share of AIDS cases among blacks surpassed that of whites in 1994. Today, blacks account for nearly half of all new cases.
PROPORTION OF NEW AIDS CASES BY REGION
Over time, the share of AIDS cases in the South has increased, rising to almost half in 2004.
Note: AIDS cases are by year of diagnosis. Source: CDC, Kaiser Family Foundation, AIDS at 25: An Overview of Major Trends in the U.S. Epidemic