POSITIVELY AWARE September/October 2012
Securing Care for women living with HIV - Challenges and solutions for HIV-positive women
ive years ago, women had the dubious distinction of surpassing men as the majority of people in the world living with HIV. And in some countries, including Cambodia, Mozambique, and Rwanda, women now comprise nearly two-thirds of people living with the virus.
In the U.S., the HIV epidemic looks very different. Women comprise over a quarter of the estimated 1.2 million people living with HIV in the U.S.—not including transgender women, for whom no accurate data are available. In 1984, women represented only 8% of HIV infections in the U.S. Thus, even at a national level, the trend is troubling. Data from 2012 show that in the District of Columbia, rates of new HIV diagnosis among black women have doubled. In Maryland, 35% of all AIDS diagnoses are among women, and in the U.S. Virgin Islands, 36.4% of people with an AIDS diagnosis were women in 2009. And when you drill down further, particularly in the U.S. South, in some counties, HIV infection rates among females may be even higher. Let’s be clear: this is not a numbers game anyone wants to win.
Of even more concern, in the United States, HIV acquisition among women is correlated with race, poverty, experience of trauma, mental illness, substance use, and vulnerability to assorted social stigmas—the same factors that reduce likelihood of positive health outcomes in people living with HIV. That is, these socioeconomic factors increase vulnerability to poor health outcomes, with or without an HIV diagnosis. U.S. women living with HIV are disproportionately likely to be women of color (over 80%), especially black and Latina, and living in poverty, compared to men living with HIV. According to the HIV Cost Services and Utilization Study (HCSUS), 64% of HIV-positive women in ongoing medical care had annual incomes under $10,000, compared with 41% of HIV-positive men in care. More than twice as many HIV-positive women (76%) as HIV-positive men (34%) are living with and caring for at least one child under the age of 18. Thus, care systems for HIV-positive women must account for caretaking responsibilities, including provisions for minor children.
Alarmingly, data show that adherence to anti-retroviral therapy tends to decrease among women living with HIV as the number of children under 18 living in the home increases. This is no real surprise. As women, we tend to prioritize caring for others over ourselves. Sometimes it’s a matter of practicality—we only have so many dollars to go around and hours in the day and bus vouchers. Sometimes it’s a matter of stigma—we don’t want others to see us taking our meds or going to medical appointments. And frequently it’s a reflection of how we value ourselves, especially as poor women, women of color, women living with HIV. We have internalized that our health, our wellness, our wellbeing is too often not a priority for our society and political leaders—so why should we make it a priority for us?
Transgender women are especially likely to live in extreme poverty, to face exceptional barriers to safe housing, employment, and access to quality health care, and, if HIV-positive, are less likely than other populations to receive antiretroviral therapy and more likely to experience negative interactions with health care providers. Transgender women are also disproportionately likely to face violence in their communities.
Although researchers within the U.S. and internationally have known for years that women who have experienced violence and trauma are at elevated risk of acquiring HIV (even in non-conflict settings), new data released in 2012 show that women with HIV in the U.S. are twice as likely to have been victims of intimate partner violence and suffer post-traumatic stress disorder at a rate five times greater than HIV-negative women. Rates of violence faced by transgender women are likely to be even higher—data released in 2011 by the National Coalition of Anti-Violence Programs showed that transwomen comprised 44% of all LGBTQ murder victims. The same study found that over half of LGBTQ violence survivors did not even report attacks, with the highest rates of non-reporting being among transgender women of color. Not that surprising, given that transwomen also face disproportionate sexual, physical, and verbal harassment at the hands of police, according to Injustice at Every Turn—A Report of the National Transgender Discrimination Study. Research shows that women, including transwomen, who have experienced trauma are less likely to be adherent to medication and are more likely to face multiple barriers to care overall.
Systemic violence against women also persists. Women living with HIV in the U.S. continue to report significant reproductive rights violations, despite medical progress and research and treatment advances that clearly demonstrate HIV-positive people can live a long and healthy life, avoid passing the virus to children with appropriate care and treatment, and even avoid passing the virus to their sexual partners, when viral load is suppressed and other factors that increase vulnerability (such as genital sores or ulcers) are not present.
Importantly, for many women living with HIV, motherhood may be one of the only socially valued identities available to them. As described by Michelle Berger in Workable Sisterhood, many women living with HIV in the U.S. already exist at the intersection of race, class, and gender oppression, in addition to societal stigma about any behaviors they engage in, or life experiences they have had—even prior to HIV diagnosis. “When they became HIV-positive all the positions they occupied—drug user, sex worker, poor woman, were already concentrated, or saturated, with a set of representations and assumptions about those positions.” Thus, HIV becomes just another one of several stigmatizing social markers. Yet having a socially valued identity may impact HIV-positive women’s feelings about themselves and may inspire them to take better care of themselves. In one study, HIV-positive women reported that pregnancy and childrearing provided them a socially sanctified feeling of being important and valued. Motherhood became a highly valued identity that helped mitigate regret related to HIV acquisition and other life circumstances.
One study, published in AIDS Patient Care and STDs in May 2010, demonstrated that of 181 predominantly African American HIV-positive women in care in two urban HIV medical clinics, only 31% reported a personalized discussion with their HIV provider about their own fertility desires and intentions. Of those 31%, 64% had initiated the conversation themselves with their providers. The same study found that age was a strong predictor of provider-patient communication about pregnancy, with women under the age of 30 being six times more likely to have had a general conversation about pregnancy with their providers. Another study of 118 HIV-positive women conducted at the University of Rochester found that 54% of participants in that study had been sterilized. The study found high rates of “tubal regret” among participants, and pointed to a need to counsel women living with HIV about reversible methods of contraception. And research conducted by the U.S. Positive Women’s Network found that women living with HIV self-reported high rates of coerced abortion, tubal ligation, and sterilization. When HIV-positive women do have conversations with providers about their fertility plans, some health care providers perceive the pregnancy-related needs of women living with HIV to be limited exclusively to the prevention of vertical transmission. In addition, data collected by the U.S. Positive Women’s Network suggest that HIV criminalization laws, currently on the books in 36 states and U.S. territories, may deter women from HIV testing, from accessing care, and may intimidate them with regard to disclosing sexual behavior to providers.
Despite the fact that there are many other diseases and genetic disorders with higher risk of parent to child transmission, and that assisted reproduction is not only permitted but often encouraged in such cases, HIV status has been used as a special reason to deny HIV-positive women the right to conceive naturally or with assistance; the right to comprehensive family planning and counseling service; and the right to retain custody of their children.
Given last year’s HPTN 052 data, which demonstrated a 96% reduction in HIV transmission among heterosexual serodiscordant partners when viral load was suppressed, people living with HIV and/or their partners who want to conceive should be counseled about a range of options, including natural conception and now pre-exposure prophylaxis (PrEP) for the negative partner. Prevention justice demands that a range of HIV prevention options be available, including options that are controlled by women. But women’s bodies are not only about making babies. Fully upholding our human rights includes upholding our right to be sexual beings who experience joy and erotic pleasure. And for some of us, that means not using condoms, with our partner’s knowledge and consent. This will require a conscious effort of providers counseling patients who have experienced stigma, sometimes multiple concurrent stigmas, to provide accurate information about risk.
Despite the significant epidemic among U.S. women—it is estimated that 300,000 women are living with HIV in the U.S., and 25% is no minor proportion—the National HIV/AIDS Strategy, released in July 2010, failed to articulate a single goal specifically for women. It does not detail how to reduce new HIV infections among women, to increase access to care, or a strategy to improve women’s health outcomes. The Strategy similarly failed to articulate the relationship between violence or trauma and HIV for women. And nowhere in the Strategy was the need to strengthen sexual health and reproductive choice for women living with HIV even mentioned.
And just this year, although the President’s proposed domestic HIV budget for FY 2013 was relatively good, the Part D program was the only part of Ryan White for which a decrease was proposed. Part D is the only program within Ryan White specifically designed to meet the needs of women, youth, and families. This is indicative of an alarming trend away from women-centered care and supportive services when they are more critical than ever.
Thus, not only are we faced with a well-documented social and political “war on women” from the far right, with all women’s rights and body sovereignty being utilized as a political football in the 2012 election cycle—but women living with HIV are literally facing disproportionate wars: violence, and a battle for their lives, health, and dignity in their own communities, neighborhoods, and homes.
And in the midst of all this, somewhere along the way we lost our will to address the gender nuances of the domestic HIV epidemic.
2011’s HPTN 052 results demonstrated that achieving viral suppression in people living with HIV can effectively reduce onward transmission of HIV. Thus, ensuring high-quality care and access to voluntary treatment for people living with HIV should be one of our primary goals as an HIV community—to achieve the National HIV/AIDS Strategy’s prevention and care goals.
In July, the International AIDS Conference (AIDS 2012) returned to the U.S. after a 22-year absence. The theme of AIDS 2012 was Turning the Tide Together—meaning that we have the science to end new HIV infections and to keep people living with HIV healthy. Now we have to muster the political will and resources to make this possibility a reality. Just last June, the Supreme Court of the United States upheld the Affordable Care Act (ACA)—a piece of legislation that holds great promise for all women, and especially for women living with HIV. But HIV care and treatment is more than just medication and more than just medical care, especially for women. It must be coupled with services designed to uphold sexual and reproductive rights and to address the impact of violence and trauma in women’s lives. Women living with HIV still face unique vulnerabilities in 2012 and turning the tide on the epidemic for women will require a gender-sensitive response.
Because women’s access to health care and ability to adhere to medication is related in large part to other life factors, including our physical, psychological, and emotional safety, addressing logistical barriers to care and promoting safety for women is central to achieving the National HIV/AIDS Strategy’s goals and to achieving the promise of the Affordable Care Act for women.
Through ACA implementation, we must also keep in place services that facilitate access to care for women living with HIV, including but not limited to psychosocial support, peer-based services, transportation, and childcare.
Thankfully, President Obama’s March 30 release of a memorandum establishing a federal interagency working group to address the intersection of HIV/AIDS, violence against women and girls, and gender-related health disparities presents a new opportunity to align the domestic HIV response with international standards and to rectify some of these serious oversights.
The workgroup is charged with, among other things:
- Integrating sexual and reproductive health services, gender-based violence services, and HIV/AIDS services, where research demonstrates that doing so will result in improved and sustained health outcomes.
- Promoting research to better understand the intersection of the biological, behavioral, and social science bases for the relationship between increased HIV/AIDS risk, domestic violence, and gender-related health disparities.
2012 marks a critical moment in the global HIV response. It’s time we truly commit to upholding women’s rights and the rights of all people living with and disproportionately impacted by HIV as an essential component to turning the tide of the epidemic. This must include:
- Meaningful and visible leadership of women living with HIV in all aspects of decision-making.
- Research on and funding for women-controlled prevention options—tools which a woman can use without the consent or even the knowledge of her partner, and which uphold our full rights to sexual pleasure and sexual and reproductive health.
- Bold action, including a plan and a timeline from the White House Office of National AIDS Policy to address the intersections of violence against women, HIV, sexual and reproductive rights, and women’s health.
NAINA KHANNA is the policy director at Women Organized to Respond to Life-threatening Disease (WORLD) in Oakland, California and coordinates the U.S. Positive Women’s Network (PWN). She was appointed to President Obama’s Advisory Council on HIV/AIDS (PACHA) in 2010. She has presented and advised on women’s rights and achieving gender-sensitive, human rights-grounded policies informed by people living with HIV. Ms. Khanna was diagnosed with HIV in 2002.