Centering the Voices of Women Living With HIV

In June 2008, 28 diverse women living with HIV flew from around the country to San Francisco and gathered at the Hotel Kabuki for a special retreat. The women were all leaders of projects catering to people living with HIV, ranging from nutrition gardens to health care organizations.

They had decided to form a new national organization dedicated to women living with HIV. Its name: Positive Women’s Network–USA (PWN-USA).

“We spent a lot of time at that first gathering articulating what we were seeing impacting our communities and what we thought the solutions were,” says founding member Naina Khanna, the group’s co–executive director. “We developed a set of values and principles that continue to guide our work today.”

Khanna became an advocate a few years after being diagnosed with HIV in 2002, but a 2007 trip to Nairobi, Kenya, for a conference catapulted her work to a new level.

“There were about 300 women living with HIV from all different countries,” Khanna says. “There were all these powerful women living with HIV. But when it came to the North American and United States representation, I was really disappointed.”

Khanna noted that those speaking on behalf of women living with HIV in the United States were mostly white. Missing were the voices of those most impacted by HIV: Black women. Something needed to change. Khanna had just learned about a global network for women living with HIV that was shaking the table—the Positive Women’s Network.

Khanna (left) and advocates in Washington, DCCourtesy of PWN-USA

“There were these badass women all over the world who had organized formations and civil society mechanisms to hold their governments accountable,” she says. “They were demanding different kinds of guidance on breastfeeding and what type of medications were available to people living with HIV who were pregnant.”

This inspired Khanna and a few other American women living with HIV to establish their own PWN organization back home.

Today, PWN-USA is one of the largest HIV organizations in the United States, boasting 4,000 members nationwide. It has changed the lives of cisgender and trans women living with HIV through mobilization, empowerment and policy changes at the federal, local and state levels.

Khanna, who started as a coordinator of the network, became PWN-USA’s first executive director in 2012 and has been co–executive director since 2020.

But now Khanna is moving on. As she prepares to leave the organization she helped found, she and other PWN-USA members reflect on how far it’s come and where its heading.

Khanna remembers PWN-USA’s first project. It was around the time of the 2008 presidential election. HIV advocates wanted the next president to commit to a national AIDS strategy, but PWN-USA realized that women were missing from the conversation.

“We said, ‘You can’t have a national AIDS strategy without women,’” Khanna says. “We needed to make sure that our voices were being represented. Otherwise, we were going to have a national AIDS strategy that didn’t address the issues that matter to cisgender and trans women.”

The all-volunteer group was spread across the country without much structure. Although it had a national steering committee, its members had little experience in writing policy recommendations. In a pre-Zoom era, they composed a document of their demands for the next administration via old-school conference calls.

“Our first-ever policy document was a memo that went to the transition team for the Obama administration in November 2008 that said, ‘Here’s what women living with HIV around the United States are asking for from you,’” Khanna recalls.

PWN-USA’s memo caught the administration’s attention. The Obama White House used its recommendations, along with those of other HIV groups, to develop the first National HIV/AIDS Strategy.

PWN-USA also succeeded in getting the Obama administration to add an addendum to the strategy that included the word reproductive in reference to women’s reproductive health care needs vis-à-vis HIV and accounted for how trauma and violence intersect with HIV, particularly for women.

Venita Ray (left) and KhannaCourtesy of PWN-USA

“I’m really proud of our contributions to the National HIV/AIDS Strategy,” Khanna says. “PWN-USA is the organization that really helped push a gender lens on the strategy.”

Over time, PWN-USA grew to include paid staff. Its work also continued to grow. It began to address stigma by centering the voices and expertise of women living with HIV and policy experts via blogs, articles and op-eds. The group also pivoted its focus to HIV criminalization and training people on addressing HIV within the frameworks of human rights and reproductive justice.

In 2012, PWN-USA separated from WORLD (Women Organized to Respond to Life-threatening Disease), the group that had provided the structural umbrella for PWN-USA to establish itself. It was time for PWN-USA to form its own autonomous network led entirely by women living with HIV. Someone needed to lead the group as its first executive director. Khanna was chosen for the job, and the steering committee evolved into a board of directors.

“It was definitely a tremendous honor and a responsibility I took very seriously,” Khanna says. “I was really grateful to be entrusted by so many women that I respect and look up to, to serve in that capacity and also understand that it comes with a lot of obligation.”

For Khanna, it was important to be honest about the privilege that she, as a non-Black woman of South Asian descent, benefited from. To that end, as executive director, she endeavored to create avenues for accountability and transparency.

One of PWN-USA’s great accomplishments has been to center the voices of women most affected by HIV, notably Black and Latina cisgender and transgender women.

Venita Ray can attest to that. Ray was diagnosed with HIV in 2003. As she navigated life with HIV, she discovered PWN-USA online. But she didn’t connect with the group until 2013. Then Ray met Khanna at an event in Los Angeles.

“It’s interesting because I never would have thought I’d work with Naina,” she says.

Ray eventually started her own PWN-USA chapter in Houston and began attending PWN-USA summits. In 2015, she joined the organization’s board of directors and later became deputy director. From 2020 to 2022, she served as co–executive director alongside Khanna.

PWN-USA was the first place Ray worked where she could be her authentic Black self, and she’s been happy to help uplift PWN-USA’s Black staff and members.

“We really leaned into racial justice work, fighting anti-Blackness and dismantling white supremacy,” Ray says. “We started the annual event called Celebrate and Honor Black Women. When I left, I was proud that Black staff were able to say that they felt affirmed and empowered in the space.”

For Ray, working with Khanna was one of the richest relationships she’s ever had. “As co-E.D., I felt like I’d been invited into somebody’s home. They had raised the money, built this, and I didn’t want to break anything, but something needed to be broken.”

Khanna always implored Ray to share her honest opinions about PWN-USA and its direction. And despite their 20-year age gap, the two hit it off.

“As two women of color, it was one of the greatest experiences,” Ray says.

Barb Cardell, who uses they/them pronouns, is PWN-USA’s program director. Cardell joined PWN-USA’s steering committee in 2009. But in 2019, they became a full-time staffer.

Cardell has seen firsthand how Khanna’s leadership has centered those most affected by HIV through racial and gender justice lenses.

“Naina is a stone,” Cardell says. “You know how you toss a stone into a lake and the ripples move out? You see the obvious pieces about how she lifts up and elevates people, how she asks the difficult questions, how she has the analysis around the impact of policy on communities that are vulnerable.”

Cardell continues: “That’s the first big splash. That’s beautiful and obvious. But then there’s this ongoing ripple that I’m not sure Naina is aware of.”

When Cardell joined PWN-USA, Khanna never pushed them to take on a big role. Instead, she encouraged Cardell to consider what they could do in their home state of Colorado to help women living with HIV and fight criminalization.

Cardell believes that Khanna has been instrumental in shaping the women living with HIV movement in the United States.

“When we talk about the mobilization, the organization, the empowerment, the centering voices of those most impacted, the elevation of Black liberation and trans liberation,” Cardell says. “All of that—that comes from this inherent sense of justice and pushing back against injustice that Naina has led the way for.”

Similarly, Ray believes that Khanna’s leadership, commitment, skills and passion have made PWN-USA the organization it is today.

“She created something out of nothing, and she will tell you she didn’t do it,” Ray says. “She took the reins and made this real. Naina took PWN-USA into places I don’t think it would have gone unless she did that. That’s from a fiscal and reputation standpoint to the type of work PWN-USA did.”

But through it all, Ray says, Khanna never takes all the credit, which is especially impressive considering she’s dedicated almost a third of her life to PWN-USA.

“I just think we all owe her a lot,” Ray adds. “I just want so much for her because she gave not only to PWN-USA but to the whole HIV movement. Her contribution to the movement, PWN-USA and to thousands of people changed the game.”

For her part, Khanna knows that she owes her successful leadership—not to mention her survival as a woman living with HIV—to those who came before her.

“My role as the steward of PWN-USA has been to really honor all the folks who made it possible for me to be here and to leverage my privilege to create more safety, opportunity, dignity and rights for all the other women who come next,” Khanna says.

Her advice for the next executive directors is simple: Trust yourself, and trust PWN-USA’s members.

As she bids farewell, Khanna offers some parting words for the members who will help usher in a new era at PWN-USA.

“I am so proud of having had this opportunity to lead this organization,” she says. “I have learned so much from every single one of you. It has made me a better leader. We already have everything we need to create the world we want to live in, and we must continue to be unapologetic about that.”

What’s next for Khanna? She’ll spend time with her family and her dog. But she’ll also prepare for the 2024 election. She will keep fighting because she knows what’s at stake for the HIV community.

UPDATE: On January 29, Positive Women’s Network–USA announced their new leadership team: Marnina Miller and Keiva Lei Cadena will jointly serve as co-executive directors.