HIV epidemic among U.S. black women increasing at disturbing pace

'The statistics are mind-boggling.'

With the Centers for Disease Control and Prevention's (CDC's) new HIV prevention focus on scientifically proven, cost-effective, and scalable interventions targeted to the right populations, some experts worry black women will be left a low priority on the formula. And federal funding for small, hands-on prevention programs that work holistically with women of color might dry up entirely.

HIV scientists and advocates note that African American women are in a great deal of danger just by living their lives like their white sisters.

Black women in the United States are 15 times more likely to become infected with HIV than white women, even if their risk behaviors are identical, according to the latest national data.

"The statistics are mind-boggling," says Sally L. Hodder, MD, a professor of medicine and director of Adult HIV Programs at the New Jersey Medical School in Newark, NJ. Hodder also is vice chair of NJMS Infectious Diseases and has long conducted research about HIV and women.

"Among HIV-infected black and white women, black women are much more likely to die, so this is an enormous problem," Hodder adds.

One in 32 black women will be at risk of being diagnosed HIV positive in her lifetime. This compares with one in 106 Latina women and one in 526 Caucasian women, says Donna McCree, PhD, MPH, RPh, associate director for health equity in the Centers for Disease Control and Prevention (CDC), division of HIV/AIDS prevention in Atlanta, GA.

"Race tends to be a marker for some of the social determinates of health," McCree says. "African American women don't take greater sexual risk than other women; HIV prevalence within African American communities is so high, and they tend to have sex with other African Americans, so your risk of contracting HIV is higher."

Contributing to the problem are the socioeconomic factors of poverty, lack of health access, discrimination, and stigma about HIV.

Despite the dramatic impact the epidemic has had on this community, government prevention efforts have not caused the incidence rate to decline among African American women, and should be addressed, some say.

"Definitely, I feel we're not doing enough for black women with HIV," says Michelle Batchelor, MA, senior manager, health equity, for the National Alliance of States & Territories AIDS Directors (NASTAD) in Washington, DC.

Funding for prevention efforts specifically targeting black women are competing with funds targeting other groups, such as minority men who have sex with men (MSM), she notes.

"The CDC put out numbers before the national HIV prevention conference that were just startling for young men of color," Batchelor says. "We respect the data, but what we don't want to happen is for this to be another opportunity to draw attention away from the impact the epidemic has had and continues to have on young women."

Black women must be a centerpiece of any comprehensive national HIV prevention effort, she adds.

"As we move into the fourth decade of the epidemic we have to think bigger and more collectively," Batchelor says. (See chart of HIV infection rates by risk population.)

For women, and especially young girls, any prevention message or discussion of sexual risk must start with helping them understand their bodies, hygiene, and healthy lifestyles, says Valerie Rochester, director of programs for the Black Women's Health Imperative in Washington, DC.

The organization has run publicly-funded, education and prevention programs that work with small groups of black women and girls.

"One of the things we have found, and we're a national organization, is over the last several years, the needs of black women in particular are not being singled out and addressed," Rochester says. "Their prevention programming is being lumped in with African Americans overall."

The Black Women's Health Imperative has found its two-year-old HIV prevention project, called GLOW — Girls Leading Our Way — for black women and teenage girls has no future funding source when the federal grant funding ends, says Samantha Griffin, program assistant.

"We're looking for ways to carry on and continue," she says.

The CDC's priorities in prevention funding appear to be targeting African Americans in general, then MSM, followed by other populations, including African American women, Rochester says.

"What's coming with HIV prevention funding is for dollars to follow the epidemic," Rochester says. "But to take emphasis away from one population almost ensures in a few years you'll see the numbers go up in another population, and that's what we fear.'

In mid-2011, the CDC announced its new high-impact, HIV prevention approach, which is designed to maximize the impact of prevention efforts for at-risk Americans. A subhead introducing the new approach in the CDC's paper on "High-Impact HIV Prevention; CDC's Approach to Reducing HIV Infections in the United States" reads, "Maximizing Limited Resources for HIV Prevention."

HIV testing, condom distribution, and prevention for positives are examples of proven, cost-effective, scalable, high-impact prevention strategies, the CDC paper says.

This new direction will make sure every dollar counts, McCree says.

"We will fund scalable interventions with demonstrable potential," she adds. "We recognize this is a challenging economic environment."

The main prevention focus will be on core prevention programs, receiving 75% of the funding. These include HIV testing, policy initiatives, and evidence-based interventions in social marketing, medical, and biological, such as pre-exposure prophylaxis, she says.

Since 2007, when the CDC began an expanded testing initiative, the CDC has targeted HIV communities at the highest risk, with the vast majority of testing being done within the African American communities, McCree says.

"From 2007 to 2010, we did 2.8 million HIV tests, resulting in 18,000 new diagnoses, and 70% of those were African Americans," McCree says.

The high-impact HIV prevention approach makes sure that funded programs are scalable and have the potential to reduce infection rates.

"Allocated funding is in proportion to people living with HIV diagnosis in each jurisdiction," McCree says. "It replaces the historical funding approach to keep place with changes in the epidemic; total funding is unchanged, but it's redistributed for greater impact."

Florida might offer one of the best examples of this scalable, cost-efficient approach with its three-year-old Sistas Organizing to Survive (SOS) initiative that has met its 2008 goal of testing 100,000 black women for HIV by 2010, says Marlene LaLota, HIV prevention director at the Florida Department of Health in Tallahassee, FL.

"The CDC has shown a lot of interest in our mobilization initiative," LaLota says. "They have promoted this to other states, and we've shared ideas, materials, and information with several states already."

The program's success is due to the way the state department of health worked with community stakeholders, who quickly embraced the strategy, she adds.

"Women in the local communities took ownership of it; they made it happen, and they deserve the credit," LaLota says. "Another successful component of the program was a pledge that women would educate other women where they lived, worked, played, and worshipped; thousands of women have taken this pledge."

Some communities in Florida made the pledge a competition. Others held workshops for women or formed collegiate chapters on college campuses. Hair salons participate, and churches have addressed the issue of HIV and black women, with some even having HIV testing at their place of worship.

"Having those conversations in churches goes a long way toward reducing the overall stigma in the black community," LaLota says.

"There is a group of women in Orlando who ride motorcycles, and they formed a chapter," LaLota says. "These women have kept SOS going through meetings, workshops, and educating, and they've made it fun for women too."

From the state's perspective, one of the best parts of the program is that it has been extremely cost-effective at a time when economic resources are scarce.

"We've spent so little money on this initiative because the people at the local level own it," LaLota says. "They do all the legwork, so we don't have to hire any staff or consultants or contractors to keep it going."

The state department of health provides resources and materials about SOS on its website, but the state involvement otherwise is fairly low key, she adds.

"It's truly a grassroots initiative," LaLota says. "In over three years, it really has not lost a lot of momentum, which is really a little bit surprising because things phase out."

Florida's program shows how states and communities have to think outside of the box and look for opportunities to succeed within their funding limitations, Batchelor says.

"Since there is not a lot of dedicated funding for black women, there is more flexibility," she says. "So states are able to support home-grown interventions."

Another example is in Kentucky, which has started Pillow Talk program that is a low-cost, home-grown intervention that brings black men and women together to start a dialogue about sexual health issues, Batchelor says.

"They have a potluck-style meal, and community organizations contribute what they can," she adds. "They have a potluck discussion group that uses topics written on cards to stimulate discussions, and it costs next to nothing."