Oakland — The church across the street from Paulette Hogan's apartment has long been her rock and so have the friends she's made there.
It was her friends from ACTS Full Gospel Church of God in Christ who prayed with her when her mother passed away. They visited her in the hospital after she had a heart attack in 1997. When Hogan needed a new apartment, the church helped her find housing in a church-owned building nearby.
Then, three years ago, Hogan discovered she was HIV-positive. Several of her closest church friends stopped talking to her. Others would no longer shake her hand or exchange hugs. Many wanted to know how she contracted HIV, and several bluntly suggested, incorrectly, that she'd been promiscuous or had used drugs.
She soon felt so out of place, she stopped going to church. "This was my family, they were my brothers, my sisters," says Hogan, 41, a single mother of a teenage son and daughter. "One day I had this beautiful thing and the next day it was gone." She stayed away for two years.
African American women represent just 7% of the U.S. population but account for 69% of all newly diagnosed cases of HIV and AIDS among women. While they suspect several factors, researchers can't fully explain the disparity. Poverty is known to increase the chance of contracting HIV, and an estimated one in four black women in the U.S. live in poverty. Nearly 40% of the country's 2.1 million prisoners are African American men and many contract HIV in prison. There is also speculation that a significant number of black men have sex with other men and continue having intercourse with women, a practice commonly known as "living on the down low."
Health experts, patient advocates and community activists point to another factor playing an important yet largely unexplored role: the social stigma of being a black woman with HIV. Within the African American community, they say, an attitude of intolerance, denial and silence persists some 20 years after scientists first discovered HIV, the virus that is believed to cause AIDS. This attitude is undercutting government and community efforts to stop the spread of the disease: A significant number of women at high risk don't get HIV tests or use condoms, for example. Many who know they are HIV-positive keep quiet about their illness.
"These women are very much in hiding," says Sylvia Drew Ivie, executive director of T.H.E. Clinic in South Los Angeles, a nationally known women's health clinic that's currently treating about 140 HIV-positive African American women. "Many can't tell their mothers, their friends, even their lovers."
While there is no way to definitively show what effect reducing the stigma in the African American community would have on lowering HIV infections, Ivie and other experts say they believe it could have clear benefits. Men and women could more casually talk to one another about the diseases and its risk factors. More could get tested. And those who are sick could enter the medical system earlier, which has shown to increase survival rates.
The stigma of HIV and AIDS may be less pronounced than it was in the early 1990s, when former L.A. Lakers star Magic Johnson revealed he was HIV-positive and some players balked at playing with him, but it still has profound reach among many groups. Black women face a particularly complex set of issues: They have only recently begun contracting the virus in such large numbers and have yet to organize and talk openly about the disease, experts say. Many are also poor and have inadequate access to medical care.
Some prevention experts also believe new AIDS drugs that can reduce viral loads and many outward signs of the disease may also be giving newly infected people less reason to disclose their illness.
According to the national Centers for Disease Control and Prevention, the number of women diagnosed with HIV has remained stable in recent years, but black women are 18 times more likely to be diagnosed with the disease than white women, and five times more likely than Latinas. The leading cause of transmission among all women is heterosexual sex.
Other social pressures come into play. A report last year from Rand Corp., a research firm in Santa Monica, found that African Americans who are HIV-positive report more discrimination than whites and, as a result, are less likely to adhere to anti-retroviral treatments.
The fact that many churches won't address the disease is also playing an important role. The African American community has long looked to the church as a central resource for information on many issues, including healthcare. But prevention experts say many pastors regularly speak out against homosexuality and IV drug use and are reluctant to discuss AIDS. The church "is still pretending like HIV doesn't exist," says Debra Fraser-Howze, president of the New York-based National Black Leadership Commission on AIDS.
