Fighting for Our Lives

After 25 years of providing HIV support services through The Women’s Collective to women of color living with HIV, Patricia Nalls reflects on how far we have come, and why we are still fighting for our lives.

Twenty five years ago, if you had told me I’d be leading the advocacy and fighting for the lives of women living with HIV in metropolitan D.C. area, I wouldn’t have believed you. I was young, married and in love, had three beautiful children. Then HIV/AIDS intercepted my perfect life, my American dream. Nothing can describe the feeling you get, when you are handed a piece of paper with a four letter death sentence – AIDS. Unless you have experienced the loss of loved ones, it may be hard to imagine the heartbreak I still feel for losing my husband and my youngest child to AIDS. But more than that, was the despair of being an insignificant statistic in the disease that was being called a “Gay Related Immune Deficiency.” 35 years into the epidemic, the face and the color of HIV has changed. In 2016, 1 in 4 people living with HIV are women. In the District, 9 out 10 women living with HIV are black. I can share my story because my grief and my despair gave me the strength I never knew I had, to fight for my children, and fight on behalf of women.

Twenty five years ago, I was newly diagnosed with AIDS, scared, lonely and stigmatized. Realizing that there had to be others like me, I started a secret women’s phone-support group that became The Women’s Collective (TWC). 8 million services later, we remain D.C.’s only agency that focuses on women as a “whole person.” As women often do, we take care of children, partners and parents, before we look after ourselves. Many a day our HIV status gets lost in the daily struggle of making a living. TWC is that essential safe space that offers women the services and support they need. We’re here to provide a space where women become empowered, and barriers to their healthcare such as food, transportation, child care, employment, housing…are eliminated. Most importantly, we help women find their voices to advocate for themselves to their family, their doctors, their political leaders, and their president. Right here in the nation’s capital, in the shadow of the Capitol and The White house, is one of the highest episodes of HIV in the country.

Twenty five years ago, as a woman, I was not allowed to participate in the first clinical trials for the first HIV medication, AZT. I have a vivid memory of that phone call, begging and crying to be included in the trial for the sake of my children who were about to become orphans. Today, I stand in our nation’s capital, representing women around the nation. I reflect on how far we have come and where we go from here. Scientific advances like Prevention against Mother to Child Transmission (PMCT) that could have saved my child; Pre-exposure Prophylaxis (PrEP), a pill taken just once a day to prevent HIV that could have prevented me from contracting HIV from my husband. National policies like the Ryan White Care Program, Medicaid and the Affordable Care Act (ACA) that have made it impossible for many women like myself to be denied insurance because of a pre-existing condition.

Today, in the face of a new administration, how do we protect our right to health? Can we raise our voices collectively to be heard in these uncertain times? Can we unite to fight for our lives? Why do we need to fight for our lives you ask? Because HIV is now a disease of the poor and marginalized; the same people dying of diabetes and heart disease, substance abuse and violence, are dying of HIV. Because the drugs and medical care to live healthy with HIV are unaffordable without Ryan White Services and ACA; Because women are still underrepresented in clinical trials. Because more black women are dying of HIV than any other affected population. We need to fight because HIV has to be stopped from killing black women.

Pat Nalls is the Executive Director and Co-Founder of The Women’s Collective. Her story launches our monthly blog series “Collectively Speaking.” Next, we want your stories of courage, survival and hope. We are uniting in the fight to save our lives, one story at a time. For more info: www.womenscollective.org

Recap & Comment: DC Commission for Women Inaugural Policy Conference

On October 18, 2014 the DC Commission for Women hosted an Inaugural Policy Conference. The Women’s Collective was in attendance, attending the opening and panel sessions, as well as providing free HIV testing at the event. Specifically, we attended the DC Healthy Women panel, which gave an overview of key issues affecting the health of DC women.  Of particular issue to our clients, the panel discussed the effects of HIV in the city, as well as access to reproductive health care.

The DC Health Department spoke about HIV. They gave the sobering reminder that nearly 1 in 5 new cases of HIV in DC occur among African American heterosexual women. However, there is also encouraging news about the HIV epidemic in DC. Overall, the number of new infections in DC is decreasing. Additionally, for those diagnosed with HIV, access to health care is improving. Currently, 86% of people are linked to care within 3 months of an HIV diagnosis, compared to 50% in 2005

However, the panel discussed some actions we can take or continue to support, in order to improve health outcomes and access to care for people living with HIV. These include free access to condoms and clean needles to reduce the risk of HIV transmission; promoting HIV as a routine part of health care, so that all people will know their HIV status; and changing discussions around sex and sexuality, so that they are positive and affirming.

In addition to these actions discussed by the panel, The Women’s Collective is working to support health care access among women living with HIV. Towards this end, we identified access to high quality health care, that is both culturally competent and trauma informed, as one of our policy priorities. Health care access is crucial for women living with HIV, because there are gender-based disparities in HIV outcomes, particularly related to viral load suppression. For instance, a smaller proportion of women in care achieve viral load suppression, when compared to men in care. To address these disparities, and enable women living with HIV to be linked to care, retained in care, and achieve viral load suppression, we believe that support services, such as those provided by The Women’s Collective and made possible through Ryan White funding, can be effective. As such, we believe that in the changing health care landscape, Ryan White funding for support services needs to continue.

Reproductive health care was also discussed at the Healthy DC Women panel. Shockingly, in DC, 70% of pregnancies are unintended. We recognize that this statistic points toward the need for comprehensive sexual education, access to contraception, and access to abortion. However women in DC face particular restrictions: Congress has banned DC from using its own funds to pay for medically necessary abortions for Medicaid recipients. Policies such as this severely restrict a low-income woman’s ability to access reproductive health care, which could have long-lasting effects on her health and ability to meet her basic needs.

While the health forum, in particular, pointed to areas where policy change is very much needed, we want to applaud the focus on women’s issues by the DC government. Recognition of and meaningful discussion about the specific issues women in Washington, DC face is a crucial first step. We hope that this conference and the continued work of the DC Commission for Women can support the creation and enactment of policies to protect the rights and improve the well-being of women in Washington, DC.

Ryan White Part D Funding: What about Women and Families?

Family 1 SlideOn March 4, 2014 President Obama released his proposed budget for FY 2015. While his budget doesn’t go into effect without congressional approval, and it’s unlikely that congress will approve it without making any changes—the President made an important change in the way HIV related services are funded. The proposed budget condenses Part D of the Ryan White Program (which focuses on providing supportive services and medical services to women and families) into Part C (which provides comprehensive services without a focus on any specific group impacted by HIV/AIDS).

This proposal isn’t itself particularly concerning—Part D funds have always been very competitive and difficult to compete for so the compression of Part D into Part C may open up some new funding opportunities for community-based organizations (CBOs) that had been previously shut out of Part D funding. It also makes sense from the standpoint that there are less children being born with HIV and therefore a reduced need for funding those targeted services.

But we can’t forget about women and families.

The real concern with this proposal is the small part it plays in a larger movement in HIV/AIDS advocacy and funding that increasingly forgets about women and families and their unique needs and barriers. Language matters. Even though there are no funds being diverted out of the Ryan White program, removing “women and families” sends a problematic message about the focus of HIV/AIDS advocacy and services, who is living with HIV, and what their needs are. It lumps everyone living with HIV/AIDS into the same boat when they have distinctly different and complex needs—for women and families, those needs are often ignored.

There’s an argument that women and families served by Part D of the Ryan White program can get those same services through providers that receive Part C funding. That’s technically true. But those providers often don’t have woman-focused or youth-focused services that we know are effective. Women and youth may have a more difficult time articulating their needs and getting those needs met. As a woman-focused CBO, we have a first-hand view of what those needs are. Women aren’t just looking for access to quality health care or treatment. They’re looking for food so they can feed their families; housing so they can provide their families with stability and safety; employment so they can feel empowered to take care of themselves and their families; childcare so they can get to doctor’s appointments and to work; education so they can better themselves and set a good example for their families…

The needs of women go well beyond just taking medicine and adhering to treatment. As we lose focus on women and their needs, we are making it more difficult for them and families to enter and stay in care. The Women’s Collective urges the President and Congress to ensure that in the fight against HIV/AIDS, women are not left behind.