The 30 for 30 Campaign, spearheaded by the National Black Leadership Commission on AIDS (NBLCA), has brought together numerous national and local advocacy and service delivery organizations to focus on the unique needs of women who are affected by HIV and AIDS, especially African-American women and transgender women. Women with HIV enter into care later, are less likely to receive anti-retroviral therapy, have twice as many HIV-related illnesses, and a higher mortality rate than HIV-positive men. Moreover, women at risk of or living with HIV are more likely to be living in poverty — 64 percent of women in ongoing HIV care have incomes below $10,000 compared to just 41 percent of men. And, while Black and Latina women make up only 12 percent and 14 percent of the female population in this country, they make up 80 percent of those living with HIV and/or AIDS.
Those involved in the campaign — named to represent the 30 years of the AIDS epidemic and the fact that women make up almost 30 percent of the cases — saw an opportunity to address the needs of women with the introduction of the National HIV/AIDS Strategy (NHAS) which helps focus the government’s response to the epidemic, and the Affordable Care Act, which will shift how health care is provided in this country. I recently talked with C. Virginia Fields, the President/CEO of the NBLAC and the Chairman of the campaign, to discuss the disparities faced by women and the steps we can take to fix them.
Ms. Fields reminded me that the United States has been requiring any country that received money for HIV/AIDS prevention and care to have a national strategy on AIDS, but that we didn’t have one in place until 2010. She sees the NHAS as a great step forward but feels that there were many missed opportunities to address the specific needs of women. When I asked why she thought this happened, Field’s agreed that HIV is often still thought of as a man’s disease and more specifically a disease for men who have sex with men or those who use drugs. Women, including African-American women, most often contract HIV from heterosexual sex which is less controversial and gets much less attention. Still she suggested an even simpler reason: “Because women’s voices are not at the table when a lot of these decisions are made.”
One of the campaign’s initial goals is to work with the Presidential Advisory Council on AIDS (PACHA) to ensure that the implementation plan for the NHAS includes more specific “provisions, goals, and metrics to measure progress for women living with and affected by HIV.” A good step toward this goal was made just a few weeks ago when PACHA passed a resolution that acknowledges the “devastating and severe impact of HIV on women and their communities.” With the resolution, PACHA calls on Health and Human Services Secretary Kathleen Sebelius to request all relevant federal agencies update the NHAS implementation plan accordingly. In a press release, Fields called the resolution:
“…a monumental achievement in efforts to assure that the rights and needs of women are being addressed in national policies and decisions affecting women and girls living with and impacted by HIV/AIDS.”
The work of the 30 for 30 Campaign is not done, however, and it is pushing numerous specific ideas on how to address the disparities women face in HIV/AIDS prevention and care, as well as the underlying social drivers that fuel inequalities. The campaign has released three briefing papers that detail these recommendations.
Expand services to address all the needs of women.
Women living with HIV are not only more likely to be living in poverty, they are also more likely to be responsible for taking care of and housing other members of their family, in particular children. More than twice as many HIV-positive women (76 percent) as HIV-positive men (34 percent) are living with and caring for children under 18 and 75 percent of women living with HIV are responsible for housing themselves and their children. These added responsibilities can make it more difficult for women to seek and afford the health care they need. In one study, more than 10 percent of HIV-positive women in treatment reported going without medical care in order to pay for household food and other necessities.
The 30 for 30 Campaign suggests that a broader set of services is needed in order to help women overcome these barriers. Women need access to transportation services, stable housing, and food. Food insecurity can be particularly problematic to those on anti-retroviral therapy (ART) because adequate nutrition is required for these medications to be effectively absorbed and can also help reduce side effects. The campaign also suggests a more widespread use of case management services to help women stay in care and adhere to their ART regimens. In one study, 78 percent of participants with case management services were still using medical care six months after enrollment compared to 48 percent of those without case management.
Fields explained that a family-centered care approach to both sexual and reproductive health or HIV counseling:
“… would allow for more in-depth discussion that gets in to issues of domestic violence, of other needs—economic status, transportation, food—if they don’t have these things, they’re not going to keep the next appointment.”
Integrate HIV, sexual and reproductive health, and intimate partner violence services.
Fields described the care women now receive as being “siloed” so that HIV prevention, treatment, and care is separate from sexual and reproductive health care which is separate from services to prevent and treat intimate partner violence. The campaign suggests that this split:
“…forfeits opportunities to engage women in HIV testing, improve their prevention behaviors, and assure the access to care and information needed by HIV-positive women.”
In 2010, for example, nearly five million women accessed federally-funded family planning services but fewer than two in 10 of them were tested for HIV during their visit. Similarly, fewer than 10 percent of HIV providers screen for intimate partner violence even though such violence is thought to account for at least 12 percent of HIV/AIDS infection among women in romantic relationships.
The campaign envisions integrated HIV, STI, and violence services. Under such a system voluntary HIV counseling and testing would routinely be offered in family planning and sexual health care clinics; HIV/AIDS services providers would refer all patients to STI screenings as well as other family planning and reproductive health care services (or better yet be able to offer such services themselves); and screening for intimate partner violence would be provided in all settings that provide HIV and/or sexual and reproductive health services.
When I asked Fields why she thought these clearly related services were so isolated she pointed to funding as a baseline issue:
“I think the way the funding has been allocated speaks to the problem. Funding sexual and reproductive health clinics separate from HIV is a problem. If the funding incorporates the two, it creates a level of integration of services that is needed.”
Fields also acknowledged the role of discomfort and stigma around HIV:
“Centers that typically don’t do HIV testing, treatment, have been reluctant to engage around integration of some of these services.”
Her organization has started some training programs to help those that do sexual and reproductive health care become more comfortable with HIV care. Fields argues that:
“Dealing with the whole person, gives us the chance to adapt [our services] to that person.”
Focus on Women-Controlled Prevention Methods
The first line of defense against the sexually transmitted spread of HIV is the male condom but obviously its use depends on a willing partner and many women, especially those who are experiencing intimate partner violence, are not in a position to negotiate condom use with a male partner. The 30 for 30 Campaign suggests that providers of male condoms be trained to provide the female condom in order to help overcome the negative perceptions of this prevention method. That said, the female condom does not solve the larger problem as it is not a method that can be concealed from an unwilling partner. The campaign recommends an investment in treatment as prevention options, pre-exposure prophylaxis, and microbicides.
Produce Better Data and Research on Women
In order to better address the needs of women, public health professionals and medical providers need a deep understanding of the existing gaps in services and how they impact women. The campaign points there is a great deal that we don’t know because of the data collected and the way it has been analyzed. For example, we don’t yet know:
“the gender break-out among people living with HIV whose viral load is currently undetectable, or the number of women on ADAP waiting lists, or what percentage of condoms purchased by state health departments are female condoms. Worse, transgender women are often completely missed and not accurately counted in HIV surveillance data due to provider discomfort.”
The campaign suggests that all data must be disaggregated by sex and gender.
I ended the conversation with Ms. Fields by asking about the social drivers highlighted by the campaign. The underlying poverty and the disparities that go with it are not only at the root of the HIV/AIDS epidemic but the overall STI epidemic as well as teen pregnancy and births in this country and so many other public health crises. I asked her how we even begin to deal with such an systemic problem. Like many people, Fields believes that the NHAS is a good start because it recognizes all of these factors and accepts that HIV does not stand alone. She believes that it has begun to address HIV/AIDS issues in a new way but that the next step is to ensure that all federal funding and agencies are working together from the Centers for Disease Control and Prevention to the Department of Housing and Urban Development to the Department to Education — which is often left out of the equation.
Moreover, she said that we have to stop the worrisome trend of sliding back into a medical model of prevention that handles one “at-risk” population (like men who have sex with men) at a time instead of looking at communities: “One thing that needs to happen in the Black community, for example, is that we need focused efforts almost like a laser beam until we can see a turn around. We know, based on data and zip codes, where the problems are and we need to focus on them until there is acknowledgement that they are all at risk.”