Dázon Dixon Diallo, MPH, DHL, is the Founder and President of SisterLove, Inc. Dr. Diallo is a co-chair for the Act Now End AIDS National Coalition. She recently served as a member of the National Institute for Health Office on AIDS Research Advisory Council and the board of directors of the National Women’s Health Network.
Q: Tell us about the focus of SisterLove, and why you started the organization?
SisterLove’s focus is on the intersections of sexual and reproductive health rights and justice through an HIV lens, particularly in the lives of women and girls of African descent in the U.S. and around the world. We carry out this mission through six program areas, with health education and prevention at our core. In addition to advocacy, we do community-led research, women and youth leadership development, and even have an international program.
One of our upcoming programs is called Innovative Interventions. We’re looking at some of our craziest ideas to upend the status quo on ending the HIV epidemic among women, reflecting on our past successes and lessons learned so far. We are beginning to work on a study to examine what happens when you abandon the risk paradigm in engaging women around testing and counseling. We don’t want to talk about risk perception or assessment – we want to focus on sexual health, well-being, and pleasure of women. What do women really want? What do we really need?
Before SisterLove, I was working at a local women’s organization, which was also an abortion provider. In an era when Ronald Reagan was the president, stigma around HIV was high. We had draconian policies around abortion, which prevented any federal funding to support prevention work for women at that organization. For women who were impacted by AIDS at the time, there were no services for them. That’s why I started SisterLove – to provide those programs for women.
The funny part about starting the organization was that on the same day of our founding, Rock Hudson announced his AIDS diagnosis. Rock Hudson was like the Brad Pitt of the fifties and sixties. He was an A-lister, leading man, and a sex symbol in all the movies back then. When Rock Hudson announced his AIDS diagnosis, it triggered people to think about their own risks at the time. And that’s when women started calling in and asking about HIV. I always say Rock Hudson is one of the reasons I got involved and why we started doing this work.
Q: In 2019, nearly 1 out of 5 new HIV diagnoses was among women, but women are less likely to get tested for HIV and be aware of their status. What are the main obstacles to HIV screening and care among women and girls and how do we address these obstacles?
Stigma is a core issue in HIV, especially around HIV education and engagement. Stigma is a euphemism, a container. We need to talk about what really drives stigma: racism, sexism, homophobia, transphobia, and gender inequality. Those are the real issues.
Another challenge is provider attitudes. The provider decides to whom they talk about HIV and testing. There are numerous women who work in this field that go to their private doctors and still have to demand screening or services until they find a provider who considers their sexual health. When Gay and Bisexual Men walk in the door, you already know that providers will talk about HIV and pre-exposure prophylaxis (PrEP). Providers don’t do that with women as readily as they do with men. Family planning clinics and sexual and reproductive health services frequented by women are more centered on obstetrics and gynecology without HIV services because providers are not comfortable with it. We have not yet integrated the intersections between maternal and sexual and reproductive health.
The last and most important obstacle is getting women to assess their risk and assert themselves to get screened. Often, women don’t consider their sexual relationships in terms of risk. If I think that I’m in a monogamous relationship and I’m trusting my partner, then why are you asking me about all my risks? Now you want me to go and ask him? That’s the barrier. Instead, we can ask about their concerns around sexual health and what they want to know about their bodies that could make their life easier, more pleasurable, and more comfortable. The barriers are not only screening but also demanding and accessing services, whether it’s PrEP, prevention, or even treatment.
Q: Black women and Black transgender women are disproportionately impacted by HIV – in 2019, Black women made up 7% of the overall U.S. population, but 11% of new HIV diagnoses. Between 2006 and 2017, an estimated 44% of Black transgender women were living with HIV. What are the conditions that drive the HIV epidemic among these communities of color, and what should be done to address these disparities?
We must place HIV squarely in the framework of sexual and reproductive health rights and justice, which means that we have to do all of the things that the 14th,15th, and 19th amendments guarantee – equality for all people.
For women in the HIV/AIDS epidemic space, everything is so U.S.-centric with a predominant focus on Gay and Bisexual Men. But globally, women have always been more than half of the epidemic. In the U.S., we also need to talk about race and geography, because certain regions such as the Deep South bear disproportionate disease burdens among Black Americans.
Other groups that we don’t talk enough about are transgender men and people who were assigned female at birth. We don’t have enough data yet, but we have plenty of anecdotes to know that their HIV and AIDS situations are almost as dire, especially among transgender Gay and Bisexual Men. Many transgender people face discrimination, and these conditions may force them into sex work and transactional sex, or what some people might call survival sex. It becomes their only means of staying alive or getting basic needs such as food, housing, and gender reassignment.
Anyone who receives sexual or reproductive healthcare should be treated in the way they present themselves, not in the way we presume them to be based on their bodies. We think a woman is a certain type of person when she walks in. But she may have a story that explains why you should test her for HIV and provide information to receive treatment and achieve viral suppression, or take PrEP and remain HIV-negative. These conditions are based on structural and social inequities rather than on behaviors.
Q: You are a recognized advocate in the fight against HIV, and on behalf of communities of women and girls living with or at risk for HIV. What can stakeholders in this space do to advocate for women and girls living with HIV or at risk for HIV?
We have to fight for global, universal healthcare that is rooted in basic health because that’s where so many of our disease issues begin.
Stakeholders can also fight for the policies that we need moving right now, such as the COVID-19 relief bill. Women are the most impacted population from the pandemic—in unemployment, mental health, and caring for children at home. In addition, we have the Global Health, Empowerment, and Rights (HER) Act and the Equal Access to Abortion Coverage in Health Insurance (EACH Woman) Act. We must also champion eliminating the Hyde Amendment and ensuring all of our Title X clinics are providing full comprehensive health.
We need to make sure that stakeholders are lifting up women and people with lived experiences – not representing them. Congressmember Ayanna Pressley from Massachusetts, the first Black woman to represent the state in Congress, has a perfect quote for this: “The people who are closest to the pain must be the people closest to the power.” If any of us, including me, are invited to present and engage on a community advisory board or participate in research, we should be bringing others along or stepping aside and saying, “Hey, you know what? I understand why you invited me, but there’s someone who can better represent this issue.” That’s what we need our stakeholders to do.
And of course, support your community-based organizations with time, donations, referrals, recommendations, and skills to help provide critical services to folks. The reason we are so keen on collaboration is that the intersectionality of our work requires it. If you understand the intersections, then you will notice that, for example, a climate bill impacts people living with HIV because so many of them are already living in environmentally inequitable communities. We need to incorporate that health context in all the policies we’re fighting for. There is no way that my organization can encompass everything. Creating a one-stop-shop might mean that you bring in another partner organization that already delivers that service. In this shrinking world of resources and funding, the more we work together, the more likely we are to get those resources.
We should also actively join coalitions that are fighting to get to the end of the epidemic. Read and incorporate the aims of the HIV National Strategic Plan. Be involved in the advocacy work locally, statewide, and federally. Listen to the diverse discussions on the intersectionality that may not have HIV in their name. For instance, we host Women Now, a global conversation on sexual and reproductive health, rights, and justice for women and girls of African descent. We can’t have just an HIV focus in those conversations, but they offer important insights into the factors driving the epidemic.
Q: March 10 is National Women and Girls HIV/AIDS Awareness Day, which gives us an opportunity to underscore the impact of the HIV epidemic among women, particularly women and girls of color. What message do you have for the community on this awareness day?
On March 10, we nationally recognize the conditions that drive the HIV epidemic and remember those affected by HIV and AIDS. If we are not fighting to make sure that women are in the lead and are getting us to the end of this epidemic, we never will achieve our goals. You can reach the end of the epidemic for every man but you will still have a global HIV epidemic because if women are still impacted, everybody else will be impacted as well.
It is an inescapable truth that in the 40 years of this epidemic, there are things that reflect the old NAACP tagline: much has changed, much has not. Whether it’s cisgender women, transgender women, transgender men, individuals who have been assigned female at birth, gender non-conforming, or non-binary individuals, we are still fighting for inclusion in all of the most important spaces. And we are seeing it change. I’m in the state of Georgia, and we know that when Black women organize, we change things.