Southern black women living with HIV are the forgotten demographic. Faced with numerous intersecting challenges, most notably poverty, they are at high risk of falling through the cracks of the health care system. To make matters worse, Southern states often lack a sufficient safety net to help ensure that these women engage in consistent HIV care.

A group of researchers at the University of Alabama at Birmingham recently published a paper in Culture, Health & Sexuality describing how numerous societal factors stack the deck against low-income women living with HIV in the South.

The investigators conducted a series of focus groups with 46 low-income HIV-positive women, 89 percent of whom were African American, living in the Birmingham area. They also interviewed 14 individuals working for local organizations that provide services for low-income HIV-positive women, as well as representatives from the legislative, religious and business sectors. Most of the HIV-positive women were unemployed, had a high school education or less, had at least two children, and made less than $11,000 per year. (Alabama is one of the poorest states in the country.)

The researchers found that, in addition to poverty, factors standing in the way of these women’s engagement in HIV care included poor employment opportunities, limited access to health care, HIV-related stigma, lack of proper access to transportation, and substance abuse.  

The study’s findings are limited by the small sample size and the fact that it did not include random sample of women. Nevertheless, the researchers felt they did recruit a wide cross-section of participants.

According to the study’s lead author, Melonie Walcott, DrPH, who is now a clinical and community-based HIV/AIDS research training fellow at Brown University, these intersecting challenges “can create a cycle where one could feel a sense of hopelessness, which would make it difficult to practice health seeking behaviors such as safer sex, medication adherence, and engagement in HIV care.”

A 2011 paper in Issues in Mental Health Nursing looked at the social factors affecting the HIV epidemic among rural Southern women, focusing on an almost all-black sample of women. The paper’s authors summed up the lives of these women bluntly: “For the HIV-positive clients,” they wrote, “instability is the norm.”

A prevailing theme among HIV-positive women is that they place the care of others above their own. Additionally, the need to focus on basic needs, such as housing or getting enough to eat, among those living in poverty may send their own HIV care far down the list of priorities. To make matters worse, untreated HIV can result in illness that may lead women to lose their jobs and insurance coverage, creating a downward spiral effect.

Among the women she and her colleagues studied, Wolcott says, “the management of HIV is particularly challenging because there are so many other competing priorities in their lives, such as securing diapers or the next meal for their children. Too often we forget that these underlying issues can undermine our efforts to control the HIV epidemic.”

Poverty also leads to logistical challenges when certain medications should be taken with food. Almost a quarter of the women interviewed said they had missed taking their antiretrovirals because of lack of food.

Many of the women in the study were faced with having to cobble together public assistance from disparate resources—such as help with paying for medications or securing housing—if they were even aware that such help was available to them.

Medicaid is often off the table. Of the 19 U.S. states that have not opted to expand their Medicaid programs under the Affordable Care Act, 10 are in the South. Expanding Medicaid allows those making less than 138 percent of the federal poverty level, which translates to $16,250 for an individual, to qualify for the public health coverage program. A Kaiser Family Foundation analysis of 2010 data found that, among the four main regions of the country, the South spent the least on each member of the traditional Medicaid program. Also, eight out of 10 states with the most restrictive Medicaid eligibility policies were in the South.

Making it to a doctor’s appointment can be a serious uphill battle among women who don’t have access to proper transportation. Attending medical appointments is especially challenging to those living in rural areas of the South that require a long drive to reach a doctor who can provide proper HIV care. Thirty-nine percent of the Birmingham women said they had missed HIV-related doctor’s appointments because they lacked a way to get there. These findings are in line with other studies that have stressed that improved transportation possibilities, particularly for those in rural areas, are needed to help people with HIV better engage in care.

Stigma and the fear of being ostracized also affected transportation options among the women in the study. Even a twice-yearly HIV-care checkup may be too difficult for some women when making it there requires asking friends or family for a ride—a request that can ultimately force the disclosure of their serostatus. Keeping the purpose of the doctor’s visit a secret from a ride or from anyone who might see them in or around the clinic is especially challenging when lack of insurance means women have to visit a public clinic easily identifiable as a source of HIV care, rather than a private physician’s office.

Susan S. Reif, PhD, a researcher in the Center for Health Policy and Inequalities Research at Duke University, studies the Southern HIV epidemic. She recalls an HIV-positive woman in a focus group “who said that you still have to have a good ‘explanation’ for why you’re HIV positive, to overweigh the judgment. There’s still so much stigma in the community.”

Housing instability can also keep women from adhering to HIV treatment because of their fear that others in a shelter, group home, or housing shared with friends or relatives may see the medications and figure out what they are for. Homelessness, of course, presents numerous burdens that can keep women from taking antiretrovirals daily.

Kenneth D. Phillips, PhD, RN, a professor at the University of Tennessee College of Nursing in Knoxville, was the lead author the 2011 paper examining HIV among rural Southern women. He says the kind of community support that sprang up for men who have sex with men (MSM) in major urban areas during the early years of the AIDS crisis is sorely lacking for black women living the rural South today.

“They can’t turn to church because the churches have turned their backs on them,” says Phillips of Southern women living with HIV. “And they can’t turn to support groups because they don’t exist in many small towns and rural counties where they live.”

Easy access to narcotics in their communities also poses challenges for Southern women living with HIV. One participant in the Birmingham study said, “The only thing that stops you” from staying in HIV care “is being on drugs.” Indeed, numerous studies have found that substance use acts as a major barrier to engagement in HIV care.

Despite the enormity and the complexity of the challenges facing the women in her study, Wolcott is nevertheless hopeful that there are solutions than can help turn the tide. Ideally, such solutions will address larger, systemic factors.

“The HIV epidemic,” she says, “has taught us that focusing on individual behaviors alone is not very effective. The environment in which we live will to a large extent influence our health behaviors and health outcomes.”