Table of Contents
"Fighting HIV/AIDS in America and around the world will require more than just fighting the virus, it will require a broader effort to make life more just and equitable."
-- Barack Obama, July 2010
Introduction
In the U.S., women account for a quarter of the HIV epidemic. Globally, however, they make up half of all people living with HIV, and they experience the effects of the epidemic in many ways, whether HIV-positive themselves or as primary caretakers in families and communities affected by HIV. According to 2006 CDC estimates, there are nearly 300,000 women living with HIV in the U.S. Over the last 30 years, the epidemic's toll on women has worsened and now appears to have stalled at a stubbornly high level. In 1985, women represented 8% of HIV infections each year in the U.S. By 2006, that had more than tripled, to 27%.
The HIV epidemic among women in the U.S. largely affects women of color, lowincome women, and women with dependents. Over 80% of women living with HIV in the U.S. are women of color. While African-American women make up about 12% of the U.S. female population, a shocking 66% of new AIDS diagnoses among women in 2006 were African-American. Latinas represented 16% and Caucasian women 17% of new diagnoses in that same year, though they are 13% and 68% of U.S. women, respectively.
The rate of HIV infections among black women is nearly 15 times as high as that of white women, and nearly four times that of Latinas. According to the HIV Cost and Services Utilization Study, 64% of women with HIV receiving medical care had annual incomes under $10,000, compared with 41% of men. And the overwhelming majority of women with HIV in the study had children in their homes. This is drastically different from men with HIV.
For many HIV-positive women, their diagnosis has been a sentence to a lifetime of poverty as a result of complcated health insurance programs, employment discrimination, and income requirements for benefits such as housing and HIV medications. Women carry a heavy burden of family responsibility, and factors such as poverty, homelessness, and racial discrimination add to the burden and contribute to their vulnerability to HIV infection. Once a woman is diagnosed, these factors may have a negative effect on her quality of care and can lead to poor health outcomes.
How Do Women Get HIV?
The CDC reports that 72% of U.S. women who acquired HIV in 2006 did so through heterosexual contact, and another 26% through injection drug use. In August 2008, the CDC published new data estimating HIV incidence. A striking 57% of new HIV infections were among men who have sex with men (MSM), including MSM who also injected drugs. Another 31% were from to "high-risk heterosexual contact." But what exactly is "high-risk heterosexual contact"? The CDC defines it as intercourse with someone known to have HIV or at high risk for HIV. But the majority of women who acquired HIV didn't know the HIV status of their partners or didn't know their male partners were at risk for HIV.
The CDC published another estimate of HIV incidence in 2010, finding that the rate of HIV infection among MSM was more than 44 times that of other men, and more than 40 times that of women. These statistics are shocking, and call for an appropriate response. But comparing MSM to all women in the U.S. is misleading, since there is no way of knowing how many women are actually having "highrisk heterosexual contact." Thus, there is no way to determine how likely it is for them to acquire HIV and no way of knowing the trends of the epidemic among them. To understand these trends, we need a better understanding of the number of women truly at risk for HIV.
A CDC study released in July 2010 showed that among heterosexuals in low-income urban areas, poverty was the major factor driving HIV infection. In fact, people in the study living below the poverty line had double the risk for HIV than those living above it. Prevalence for both groups in these low-income areas was far higher than the national average. The study further concluded that "in epicenter cities such as Washington, DC and New York City, rates of heterosexual transmission among low-income populations are enough to sustain an epidemic independently of populations traditionally considered to be at higher risk [defined in the CDC's press release as sex workers and MSM]."
Lifting As We Climb: Women of Color, Wealth, and America's Future, a report released by the Insight Center earlier this year, documented enormous economic differences between black, Latina and white women in the U.S. According to the report, "single black and [Latina] women have one penny of wealth for every dollar of wealth owned by their male counterparts and a tiny fraction of a penny for every dollar of wealth owned by white women." Excluding cars, single black women have a median wealth of $100 and Latina women $120, while the median wealth of single white women is $41,500. This is partially due to lack of economic opportunity, housing and food insecurity, limited social mobility, and the fact that in the U.S., health care is largely tied to employment. Thus, women living in poverty (largely black and Latina women) are most vulnerable to poor health outcomes overall and have less access to health care, including HIV prevention.
The truth is, we do know which women are most likely to acquire HIV. All women may be at risk, but lowincome women -- especially black and Latina women in major urban areas with high HIV rates -- have a much greater risk of HIV infection. If the same women are experiencing challenges with mental health, substance use, domestic violence, or homelessness, or have incarcerated partners, they are at even greater likelihood of acquiring HIV. These factors contribute to a woman's HIV risk independently of her personal risk behavior.
Yet prevention efforts to date have failed to intervene with an understanding of which women are most at risk and which interventions would truly make a life-changing difference. Efforts need to move away from solely asking women to use condoms, and to focus on upholding their rights to mental, physical, and emotional wellness, and their safety, self-sufficiency, and equality.
Prevention: Follow the Money
Many women are never offered an HIV test. The National Women and AIDS Collective has documented numerous instances of women being discouraged from taking, or being flat-out denied, an HIV test. This is true even when HIV testing was medically indicated. This may be because reimbursement rates for testing individuals vary depending on perceived risk, and risk is defined by behavior. The lack of data collected on factors that influence a woman's risk -- other than her number of partners and drug use -- limit HIV prevention planning and resource allocation. The current model targets resources by demographics and individual risk behavior. It is rare for prevention planning to incorporate income level, health care access, housing stability, or mental health concerns -- all factors shown to correlate with HIV vulnerability. HIVrelated stigma and fears of criminalization for nondisclosure or transmission make it even less likely that people would seek out an HIV test
There are promising signs, however, that prevention and resource targeting are moving in new directions that may better identify women at risk for HIV. One such mechanism is the Dynamic Prioritization Model being tested by New York City's HIV Prevention Planning Group. The model targets prevention resources using a combination of local epidemiology, risk behavior, and socioeconomic and other data. The Maryland Department of Health is also using innovative measures to identify women at risk. This includes utilizing data on homelessness and income, and mapping geographic areas with high rates of HIV to best target HIV prevention and testing resources.
Addressing HIV prevention in a comprehensive way, including biomedical, behavioral, and social interventions, will improve efforts among women. A critical component of this is the understanding that prevention and care must be integrated. Women are whole beings, and services should reflect that.
Health Care and Health Outcomes
Women with HIV face poor health outcomes, and studies show that African-American women in particular receive substandard medical care. The Women's Interagency HIV Study found that African-American women taking HIV medications were less likely to achieve an undetectable viral load and more likely to die than other women with HIV. According to the investigators, "White women had more favorable responses to HAART. The poorer responses to HAART found in African-American and Latina women, however, were explained largely by HAART discontinuation . . . and depression." Studies show that women of color with HIV are more likely to be depressed but less likely to be offered treatment for depression than white women. Women of color with HIV are also less likely to be offered HIV medications.
In addition to barriers presented by the cost of health care, women of color report a lack of trust in the medical system. Peerbased and culturally relevant programs have been shown to increase retention in care and HIV treatment adherence.
Reproductive justice is also an integral part of HIV care, especially for women. The majority of women interact with family planning services in some way every year. Each one of these interactions is an opportunity for HIV education, screening, and care. They are also opportunities for screening for HIV risk factors, which may include domestic violence, substance use, housing instability, and mental health challenges. Yet insufficient funding results in poor service delivery, so the majority of women are never even asked if they want an HIV test. By the same token, HIVpositive women report distressingly few conversations with their health care providers about whether they are hoping or planning to have children. One study in Canada showed that 31% of women with HIV engaged in such a conversation. Of these women, 61% brought up the subject themselves.
For many years, the primary fight of women affected by HIV has been to secure high-quality and nondiscriminatory pregnancy planning, fertility assistance, and access to reproductive technologies that protect women from HIV. Recent research by the U.S. Positive Women's Network indicates that HIV-positive women's sexual and reproductive rights are routinely violated. Respondents report alarmingly high levels of stigma and discrimination in reproductive health care settings, resulting in coerced abortions and forced sterilizations.
A battle is also being fought on a related issue: the right for all women to receive safe abortion services, independent of income level. For the first time this year, the International AIDS Conference program included a panel on HIV, unwanted pregnancy, and abortion. This conversation must continue with a focus on the sexual and reproductive rights of women with HIV.
Next Steps
The first-ever National HIV/AIDS Strategy, released in July 2010, discusses the extent of the HIV crisis among black and Latina women. The next step should be targeted initiatives to address the prevention, care, support, and anti-stigma needs of black and Latina women. These should be developed with input and decision-making from all stakeholders, including HIV-positive women from those communities and the people who work with them.
HIV stigma and discrimination create barriers to testing and quality care, and must be dealt with effectively and compassionately. The U.S. must end criminalization of people living with and vulnerable to HIV. This includes sex workers, drug users, LGBT individuals, and people of color, especially black men and women.
As HIV becomes a chronic, manageable condition, it becomes increasingly necessary to understand the psychological and emotional effects of a longterm diagnosis. Individuals "manage" their HIV differently. There are little data, for example, on what choices women in heterosexual sero-different relationships -- in which both partners' HIV status is known -- make about risk reduction. Additionally, we do not know how reproductive desires and relationship expectations influence their choices.
Additional research and increased investment are needed to find HIV prevention technologies like microbicides that are controlled by women, and which offer a range of conception options. Research design should utilize teams of medical researchers working together with behavioral scientists, sociologists, and community members, including people with HIV.
Community-level interventions will have to incorporate a variety of policy, cultural, and economic changes, including syringe exchange programs, comprehensive sexuality education, effective re-entry programs for formerly incarcerated individuals, and improved targeting of resources to social and sexual networks where HIV prevalence is high. These interventions must be more accessible, and HIV testing and care must be made more acceptable to the general community by addressing HIV-related stigma.
Finally, addressing the HIV epidemic among women in the U.S. requires that the human rights and dignity of all people are upheld through economic justice, ending racial discrimination and homophobia, and challenging gender norms and sexist practices.
Naina Khanna is Director of Policy and Community Organizing at the U.S. Positive Women's Network's Women's Organized to Respond to Life-threatening Diseases (WORLD).
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