The World Health Organization (WHO) and the International Association of Providers of AIDS Care (IAPAC) recently released new treatment guidelines for people with HIV that included recommendations for women. While such guidelines are essential for those of us who provide care, for me the issue has always been personal. So I'll begin with my story of how I started to work with women with HIV.
We began an HIV screening program for pregnant women in Puerto Rico in 1986. I was pregnant myself at the time and provided care to the women who tested positive. There I was, pregnant and caring for pregnant women who were newly diagnosed with HIV. We were forever connected by our life experience -- as Latinas, as women of color, and as mothers-to-be -- but we faced very different outcomes. Many of my colleagues also feel a special connection with their HIV patients and were always looking to increase access to care and improve that care through activism.
After three decades of working in HIV, I recently searched for new messages for women, particularly women of color, and guess what? The message is still the same: "Please get tested. You don't know where your partners have been." Most of the women in our clinic with HIV got it heterosexually. But because we trust our partners, and because of our culture, we do not have many options for prevention -- we don't have control of our sexual practices, we feel embarrassed to talk about HIV or question our partners, or we feel we are not at risk. And often our partners don't know they have HIV.
Who Is At Risk?
Because prevention campaigns have focused on men who have sex with men (MSM) -- currently the group at highest risk in the U.S. -- women might believe they are not at serious risk. Not so.
Many women don't see themselves as being at risk for HIV, often because they are unaware of their partner's risk behaviors or HIV status. There are also many other reasons why women are at greater risk for HIV, such as gender inequality and domestic violence.
According to the CDC, about one in four people living with HIV in the U.S. is a woman. In 2010, the fourth largest number of new HIV infections in the U.S. (5,300) occurred among African American women through heterosexual sex. Of new infections in women, the overwhelming majority were among women of color: overall, 64% were in African Americans, 18% in whites, and 15% in Latinas. These numbers remind me of the most important message I give to my female patients: get tested, and ask your partner to get tested. "Easier said than done" is the response I often get. But many lives would be saved if women followed that advice.
Ideally, providers of women's health services (including reproductive health and family planning) should be aware of the gender-related HIV issues women face and should encourage testing. Women should receive comprehensive care and access to treatment and support. Many providers are experienced in medical management, but they might not have a system in place for checking reproductive health and gynecologic conditions.
Also, many providers are not comfortable offering HIV testing to women (women of color in particular), or providing the comprehensive care they deserve. This is due in part to a reluctance to discuss certain issues. For example, intimate partner violence (IPV) increases women's vulnerability to HIV and pregnancy, and can lead to serious psychological problems.
IPV refers to physical violence, sexual violence, stalking, and psychological aggression by a current or former partner. African American women face higher rates of IPV than white women, and Native American women are victimized at a rate more than double that of other races. Providers who lack expertise in this area might miss an opportunity to intervene and reduce the impact of violence on risk behavior, emotional health, and treatment adherence.
Access to Treatment
In September 2015, WHO released new guidelines recommending treatment for everyone with HIV, regardless of CD4 count, and PrEP to prevent HIV for everyone at substantial risk of HIV The guidelines also recommend treatment for all pregnant and breastfeeding women with HIV. The hope is that this will benefit women who were treated during pregnancy but who lose access to medication after giving birth. We now have a strong argument for continuing HIV treatment in women whose HIV was diagnosed during pregnancy.
IAPAC Treatment Guidelines
IAPAC recently published recommendations for women with HIV, including:
- Increase access to services through gender-sensitive programs
- Integrate community services, including peer programs and programs that engage partners and family
- Address food insecurity
- Screen for physical and emotional abuse
- Provide family planning services and support sexual and reproductive rights
- Scale up access to care for pregnant and breastfeeding women
- Scale up services for infants born to HIV-positive mothers.
- Consider potential interactions between HIV meds and birth control
- Address the challenges faced by younger women
PrEP for Women
Trials of PrEP for women have reported varying results. According to the WHO guidelines, PrEP is recommended for both men and women. But two PrEP trials in women (FEM-PrEP and VOICE) showed that less than a third of the women in the studies actually took the drug, leading to a lack of effectiveness. On the other hand, PrEP was effective in women in four trials that included both women and men. For example, in a 2012 trial that included both men and women in Kenya and Uganda, Truvada showed 77% effectiveness in women under 30. The results from a recent PrEP study in South Africa (HPTN 067) showed that young women can be adherent -- 80% of them had high levels of Truvada in their blood after four weeks and 65% did after 24 weeks.
But PrEP for women is still far from being widely used worldwide, or in the U.S. and Puerto Rico. This is an area that we should be studying for opportunities. Guidelines are needed for the use of PrEP in groups with substantial risk. But finding women with a high risk of HIV has been difficult and will make the widespread use of PrEP in women an uphill struggle.
We need to improve strategies to help women control HIV. According to the CDC, 88% of women with HIV in the U.S. have been diagnosed, but only 45% are in care, and only 32% have the virus under control. This has a serious effect not only on women's health, but also on the risk of transmission.
A recent analysis by Jacek Skarbinski, an epidemiologist with the CDC's, found that people with HIV who do not know their diagnosis or who are not in care account for the majority of the transmissions in the U.S. -- 92% of the estimated 45,000 HIV transmissions in 2009. We could potentially end the epidemic if we dramatically increased the number of people with HIV who know their diagnosis and are in care.
Women with HIV belong to a special community, and they need to feel safe in order to connect. One of my favorite groups committed to improving knowledge and a sense of community among women with HIV is The Well Project. The Well Project is a non-profit whose mission is to change the course of the epidemic through a focus on women and girls. The project advocates that every woman and girl should have access to quality, up-to-date information about HIV. Women who feel isolated or who are just discovering their diagnosis can find a community and support online, and that can be powerful. But personal contact with other women provides information, support, guidance, and a sense of sisterhood.
We know that we tend to connect more easily with people who are "like us" -- part of "our" group: women of color, Latinas, women with HIV, activists, mothers, etc. But often we connect just because of our gender. As women we understand and support our sisters wherever they are. Our community is larger than our labels. It is our world.
Making the Global Local
Although the issues in this article apply to women all over the world, we can make them local by emphasizing the issues that our providers notice or that women in our community point out to us. Stigma and discrimination are universal, but they present themselves in different ways in different places and among different groups, and they need to be addressed locally as well as internationally. The same goes for other gender-related issues like violence, access to care, and the need for comprehensive services.
We have witnessed great advances in the fight against HIV, from understanding the disease and its treatment to new forms of prevention. Activist efforts have resulted in 15 million people being on treatment worldwide, leading to a decrease in new infections.
The success of these interventions is directly related to partnerships among providers, scientists, industry, politicians, activists, and people with HIV. Women with HIV are warriors and angels -- while they have plenty of burdens, they also have the opportunity to change the world.
Carmen D. Zorrilla is professor of OB/GYN at the University of Puerto Rico School of Medicine and CEMI Principal Investigator. Jessica Ibarra is an HIV clinician at CEMI. Yailis Medina is assistant professor of OB/GYN at UPR. Ana Mosquera is a psychologist at UPR Maternal Infant Studies Center (CEMI).