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Women’s lives matter. And yet, when it comes to the AIDS movement it is often hard to see that truth put into action. Look no further than the cultural imagination around who is living with HIV/AIDS. While there was a big shift in cultural awareness taking root in the early 90s away from the idea that only white gay man have HIV to also include “needy” mothers in Africa, this move was not necessarily helpful. Some women have children, some women do not. Some women living with HIV reside in the 53 countries that make up the continent of Africa, others do not. Some women living with HIV need a lot of support, and other women do not.
Empowered by this tapestry of reality for women living with HIV, Naina Khanna, the Executive Director of Positive Women’s Network-USA is a fierce force within the movement. PWN believes in the power of positive women to be agents of change, working together against stigma, discrimination and the silencing that occurs around HIV in general, and specifically around women living with HIV/AIDS. As an active person within the movement Khanna has been engaged in articulating the specifics of women living with HIV in the US context. Worldwide women account for over half of HIV infections. In the US women living with HIV are at least a quarter of the epidemic. And within that percentage are the drivers and ramifications of the virus that are of interest to Khanna. For Positively Aware she wrote: “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.”
Below Khanna responds to questions from Ted Kerr, in which she discusses the connection between HIV and PTSD, her role serving on President Obama’s HIV and Women working group, and why she thinks women are so neglected within the struggle.
Visual AIDS: This summer the University of California San Francisco released a study that provided more evidence that expressive therapy improves life chances for women living with HIV. As an organization dedicated to the well-being of women living with HIV, what does a study like this mean to you?
Naina Khanna: As a membership body of women living with HIV, this study reflects our lived experiences. Expressive therapies, including storytelling, can be profoundly healing. Speaking our truth safely can facilitate wellness, including improving our own awareness of our needs and enhancing communication with healthcare providers. While disclosure of HIV status and other life events or circumstances can be challenging, even dangerous, for women with HIV, this study points to the opportunities presented to enhance health outcomes when safe spaces are created for women facing multiple stigmas to disclose. It’s important to understand that women with HIV often live at the intersection of multiple stigmas and oppressions—which may include racism, poverty, HIV status, sexism—even before we begin talking about behaviors and life experiences that are socially stigmatized. These multiple stigmas interact with self-efficacy and healthcare engagement in complex ways. Peer-based models can be particularly powerful in supporting disclosure and enhancing healthcare interactions.
Visual AIDS: In reading about this study I came across mention of the Interagency Federal Working Group on the Intersection of HIV/AIDS, Violence Against Women and Girls, and Gender-Related Health Disparities, which I did not even know excited. How did it come to be, and what does it mean for your organization?
Naina Khanna: The Federal Interagency Working Group on the Intersection of HIV/AIDS, Violence against Women and Girls, and Gender-related Health Disparities was created by Presidential memorandum in March of 2012, as US data on the relationship between violence, trauma and HIV became more readily available. Although the link between violence and risk of HIV acquisition had been well-recognized for some time, it is not until the last few years that the literature has documented the many ways in which violence and trauma continue to play a role in the lives and healthcare outcomes of women with HIV. Rates of lifetime intimate partner violence among women with HIV are extremely high, and a study conducted by a researcher at the University of California San Francisco demonstrated that the rates of post-traumatic stress disorder (PTSD) among women living with HIV may be five times that of the general population of women. This interagency workgroup was charged with identifying opportunities to enhance linkages between efforts aimed at reducing violence, helping women heal from trauma, and HIV testing, prevention and care. This is critical to enhancing HIV testing efforts at sites already doing violence intervention work, as well as addressing violence and trauma in the lives of women who are living with HIV.
Visual AIDS: The Group has a list of recommendations, that make use of the term “trauma-informed care.” What does this term mean for the work you do?
Naina Khanna: Given the high rates of PTSD and lifetime experiences of violence among WLHIV, we believe that screening for recent trauma, current or potential violence, and helping women with HIV heal from past trauma are all critical aspects of delivering quality healthcare for women with HIV. We have partnered with the University of California San Francisco’s Women’s HIV Program to develop and evaluate a model of trauma-informed primary care for women living with HIV. Trauma-informed care would include a clinical environment, methodology and approach that is designed to minimize triggering events for clients, building ongoing, empowering provider-patient relationships, screening for trauma that may be affecting a woman’s health of quality of life, and interventions as needed.
Visual AIDS: We are an organization that uses art to remind the world that AIDS is not over. What role do you think art plays in not only helping to meet the recommendations, but improving life chances for women living with HIV/AIDS?
Nanina Khanna: Art has the potential to reframe narratives, to help people see themselves, each other and the world differently, and creates opportunities to express that which may be difficult to say in words. In the context of trauma and violence, women with HIV may be able to explore experiences and feelings through art in a way they had been previously unable. Art can also bring attention to critical social, cultural and political issues— including HIV and the many human rights intersections.
Visual AIDS: Based on your experience, why is there a lack of focus and conversation on women living with HIV/AIDS?
Naina Khanna: The majority of public health focus on women with HIV has historically been on ensuring that we don’t transmit vertically (i.e., to babies). So, as we’ve effectively reduced vertical transmission in the US, folks are under the impression that women don’t require attention anymore. The problem with this narrow approach is that childbearing was never our only concern, and was never relevant to *all* women with HIV in the first place. The myopia of this approach fails to recognize that women living with HIV have other issues going on in our lives that compromise our health, dignity and rights—independently of whether or not we are of childbearing age or have any childbearing intentions.
Secondly, you can’t take race and class out of the equation here. It’s no accident that most women with HIV in the US are women of color and low-income women, predominantly Black. The same women we’re not prioritizing in the HIV response are—guess what?— not prioritized in *any* response. This is no accident either.
Thirdly, folks prioritizing the public health aspects of HIV (read: new infections) and allocating resources commensurately know that most new HIV infections are not coming from women.
The bottom line is though, you have approximately 300,000 women currently living with HIV in this country—that’s about a quarter of the epidemic. Yet we had a National HIV/AIDS Strategy released just four years ago which failed to substantively prioritize women’s prevention and care needs. There was not one metric in the Strategy specific to women. For example, in the Strategy’s discussions about improving access to healthcare, there is literally zero mention of sexual and reproductive healthcare for people living with HIV—which of course has implications for women with HIV. Women living with HIV need culturally relevant, nonstigmatizing sexual and reproductive healthcare throughout our lifespan from providers who understand both HIV and how women’s bodies work! Positive Women’s Network – USA is the only national body of women living with HIV working to address these issues, and to ensure that these conversations are not only informed by, but led by women with HIV. Through our local, state and federal policy work, work in partnerships and coalitions, efforts to build leadership among WLHIV, regional chapters, and strategic communications work, we seek to change the trajectory of what is possible for people who are stigmatized, discriminated against, oppressed and historically marginalized.
For more, read Untangling the Intersection of HIV & Trauma: Why It Matters and What We Can Do co-authored by Khanna and Suraj Madoori.