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

US Women & PrEP: Remember Us?

The New York Times recently ran an article about the use of Pre-Exposure Prophylaxis (PrEP) as the next great sexual revolution – it compared the impact that the pill made for women to the impact that PrEP can make for men who have sex with men (MSM).

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Centers for Disease Control and Prevention. http://www.cdc.gov/hiv/statistics/surveillance/incidence/

We certainly cannot ignore the high rates of new infections among MSM.  According to the Centers for Disease Control and Prevention (CDC), in 2010 63% of new infections are among men who have sex with men. But that statistic, as alarming as it may be, does not mean that we should ignore other vulnerable populations.

On May 14, 2014, the CDC came out with new guidelines for providers on assessing risk and prescribing PrEP. And those guidelines focused on all vulnerable populations – including women.  Though it’s important that we see PrEP for what it is – and the positive outcomes that it will support – as an important step forward in HIV prevention and treatment, that step is not exclusive to men.

Let’s remember that the HIV epidemic is diverse and focus on the ways that our prevention and treatment efforts can reach all vulnerable populations.  We need to decrease stigma associated with PrEP and ensure that providers increase access to PrEP for both men and women.  We need to ensure that there is an effective outreach strategy in place to reach both men and women who are at risk of HIV infection.

TWC calls on public and private entities involved in guideline development and dissemination to work with obstetricians, gynecologists, and thought leaders in women’s health to ensure increasing voluntary and informed discussion of PrEP by providers and use of PrEP by vulnerable populations. We also strongly recommend collaboration between guideline-making bodies and community-based women’s organizations, both within and beyond the HIV arena, the U.S. Women and PrEP Working Group, AVAC, and a diverse group of HIV stakeholders to ensure that guidelines are practical and inclusive of all populations, including women and people of color.

What are your thoughts on PrEP outreach and roll-out? How can we further ensure that women have access to PrEP?