AIDS is a major killer of African-American women

Many women are in denial

AIDS has been the No. 1 cause of death among African-American women, ages 25-34, in the United States, and it’s one of the top causes for African-American women ages 20 to 44, according to data from the Centers for Disease Control and Prevention (CDC).

Moreover, African-American women’s share of AIDS cases has been growing steadily in the past decade, and now women represent one-third of all new AIDS cases reported among African-Americans, the CDC data show.

"Women of color represent the largest group of women impacted and affected by HIV transmission," says Victoria Cargill, MD, MSCE, OAR, director of minority research and director of clinical studies at the Office of AIDS Research at the National Institutes of Health in Bethesda, MD.

African-American women represent two-thirds of all new infections among women in the United States, according to the CDC.

The challenge for public health officials is developing prevention programs that do not treat African-American women as one monolithic group, Cargill says. "Women have peripubical and pubical and childbearing years with different hormonal issues and different interpersonal issues. If you’re talking about adolescent girls, you have to understand the construct and context of sexual debut."

Denial is one of the first issues that needs to be addressed in tackling the problem of HIV among African-American women, says Bob Tucker, MA, a mental health coordinator at the Good Samaritan Project in Kansas City, MO. "It’s very difficult because for many years AIDS was seen as a gay disease, so to even mention you might have it means there’s a lot of shame centered around that particular issue," he explains.

Tucker heads a Disclosure Group at the Good Samaritan Project. The group consists entirely of African-American women and their families.

One of the hardest aspects of disclosure for the women is letting their children know that they have HIV, he notes. "Many children have been humiliated, discriminated against because of HIV; and I think a lot of families have been very reluctant to tell their children they have HIV because of those issues. Particularly, shame is the driving force for keeping it a secret."

Part of the shame also involves how the woman became infected. For an estimated 67% of African-American women, the HIV infection was due to heterosexual sex, according to the CDC. And many of these women were in monogamous relationships and did not realize they were placed at risk for HIV infection by men who were engaging in sex with other men on the side, Tucker adds.

Called the "down low," the phenomenon involves men who have a wife or girlfriend who help them maintain a heterosexual profile, while they also seek sexual partners who are other men.

"It’s often a shock and surprise — the way the women find out," Tucker says. "They couldn’t understand how they got HIV from a spouse or boyfriend, and then things begin to unravel."

Since many women at risk for HIV are poor and have other socioeconomic issues with which to contend, HIV prevention is low on their priority list, notes Jean Johnson, an outreach coordinator for the Good Samaritan Project.

"Getting a partner to use a condom is one of the barriers for some of these women," she says. "Because some are in homeless shelters and have low self-esteem, the fact is that HIV is not a priority right now." They are more concerned about finding a place to live and feeding their children, Johnson says. "Plus there’s the opinion that It won’t happen to me.’ A lot of women don’t know what men on the down low’ means."

Often, HIV prevention programs directed at African-American women take into consideration the fact that women often are juggling more important life concerns than HIV infection. Johnson has developed prevention and intervention programs for African-American women, using incentives and assistance that address those concerns.

Another prevention program, called Healthy Love developed by SisterLove Inc. in Atlanta, addresses the needs of African-American women as this group’s risk for HIV grows, says L. Nyrobi Moss, MA, Healthy Love program coordinator. "We wanted to create a program that first recognized that women had more to deal with than just HIV and sexual status. They had to deal with the fact that they are mothers and partners."

Programs such as the ones developed by SisterLove are important interventions for preventing HIV and helping women grasp ways to control their risk, Cargill points out. "The bottom line is that for any intervention, it can’t be a one-size-fits-all [method]; it has to be a culturally and contextually appropriate intervention. If I’m a 60-year-old woman who doesn’t live in public housing, I won’t go downtown for an HIV intervention because I don’t think I need it anyway."

Likewise, young girls who are just beginning to engage in sexual behavior may view sexual activity as part of their initiation into a group of peers, so in order to teach prevention to this group, there needs to be an understanding of their culture, she says.

"In some cultures, once you’ve developed hips, it’s time to get out there and be sexually active," Cargill says. "There have been anthropological studies done of upper- and middle-class girls attending a juice bar in Connecticut, and while these girls were going to a nonalcoholic environment, the men they were meeting were a little older and trying to engage the girls in sexual risk behavior with them."

Likewise, teenage girls might be meeting sexual partners at church; so it’s important to understand the social networks and how these contribute to HIV transmission, she explains. "The girls think, I’m safe because I’m only in this group.’"

"The work of adolescence is going from the childhood philosophy of black and white, right and wrong, into sexual identity and learning judgment and that there are shades of gray," Cargill notes. "I consider that the perfect storm for the risk of HIV transmission is adolescence."

"People make mistakes, and that’s how we learn," she adds. "But making a mistake where risk of HIV transmission is high is the perfect storm."