amfAR, The Foundation for AIDS Research

Empowering Women with HIV: An Interview with Activist Naina Khanna

Naina KhannaNaina KhannaNaina Khanna is the executive director of Positive Women’s Network – USA (PWN-USA), a national organization that advocates for local, state, and federal policies and programs for women living with HIV. She was diagnosed with HIV in 2002 and has been working in the field since 2005.

Roughly 1 in 4 people living with HIV in the United States are women, according to the Centers for Disease Control and Prevention, and African American and Latina women continue to be disproportionately affected by the virus. Only about half of women living with HIV are engaged in routine care, and only four in 10 of those in care have the virus under control.

In observance of the 12th annual National Women and Girls HIV/AIDS Awareness Day on March 10, amfAR spoke with Khanna about her own diagnosis, the holistic needs of women with HIV, and how PWN-USA is changing the conversation.  

You have said that after being diagnosed with HIV you “compartmentalized it and went about the rest of my life.” What made you decide to not only address your diagnosis but also become an activist for women living with the virus?

It was the 25th anniversary of the HIV epidemic and San Francisco was having a big event at City Hall. They called all the people with HIV to come up on the stage. I looked at the stage and there were very few people of color and women. The media were snapping photos. I thought, ‘I can’t let this be the story that gets told.’ I knew through my own experience and others that our voices were not out there. At the time, I worked for a local organization that focused on HIV but not women specifically. When I left the event, I went back to my agency and told the interim executive director that we needed to do more for women living with HIV. He said, ‘That’s not really what we do here.’ I gave my two weeks’ notice and put it out there that I was going to find a way to work on behalf of women living with HIV.

You were on the Presidential Advisory Council on HIV/AIDS for four years. There is a lot of concern that the new administration will cut funding for prevention and treatment programs. How do we keep HIV/AIDS at the forefront?

We need this administration to understand that we still have a serious epidemic here in the U.S. and globally. But we have the tools to end it and to significantly advance human rights of people living with HIV. We had tremendous success in getting our issues on the radar during the previous administration. To succeed now, we must break out of the HIV silo and engage in broader platforms around issues that affect our communities, such as low-income housing and health care. We also have a lot of battles that are winnable at the state level, such as HIV criminalization, so we need to maintain a focus there.

women and girlsYou mentioned in an interview with Visual AIDS that most of the public health focus on women living with HIV has been “vertical transmission” (transmission from a woman living with HIV to her child). How do we shift the conversation to address the needs of all women living with HIV?

The majority of resources and focus for women has historically been on vertical transmission to protect babies from acquiring HIV. Now that we have virtually eliminated vertical transmission in the U.S., we see that there’s a defunding of programs and services for women – as if we are no more than baby machines. But the need for sexual and reproductive health care was never only for cisgender women and never ended when we passed reproductive age. There has always been a need to support women as whole beings, in terms of employment, health care access, mental health needs, etc. We need to provide comprehensives services for whole people of all genders living with HIV.

What impact do you think HIV prevention tools such as PrEP (pre-exposure prophylaxis) will have on reducing infection rates among women?

That will really depend on changing how people think about sexual health — not just the people who may be perceived at risk but also health care providers. How much can we routinize the offer of these types of interventions for women? Unfortunately, we haven't seen a big uptake in PrEP for women in the U.S. I think we have to look at issues of access as well as affordability. But certainly these tools have promise. Women need to be able to have tools they can control that don't require their partner’s consent or even knowledge. Something like PrEP makes that possible.

The Positive Women’s Network-USA was founded in 2008. How has the mission and focus changed over the last eight years, especially with a membership that has grown to more than 3,000?

Our mission remains the same, to elevate leadership and build power among women living with HIV, including women of trans experience, with a focus on women from disenfranchised communities. Today, we have advocates who are leading campaigns, from fighting HIV criminalization to improving gender-responsive services. We have seen a lot of progress and a lot of wins, but there is a lot of work to do, particularly in this political environment.