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I would like to take this opportunity to thank Chuck and Fulvia as well as the scientific organizing committee for inviting me to participate in this ground-breaking Workshop, one which will have important implications for the future of HIV research worldwide in the years to come. It is very clear that the face of AIDS has changed over the years and the successes we have achieved with antiretroviral medications (ARV), at least here in the United States, have led people to mistakenly believe that HIV is a disease that pertains to people in other countries, most certainly not in our backyard. What is not widely recognized is that women have been affected by HIV/AIDS since the beginning of the epidemic, and that the impact of this disease has grown with time. Although men represent the majority of new HIV infections and AIDS diagnoses in this country, on a worldwide basis, women and girls are the face of HIV/AIDS representing more than half of the cases globally. The sad truth is that in the United States today, we have approximately 300,000 women who know they are HIV positive and possibly another 300,000 who are unaware that they are infected.1 Black women account for 65% of estimated AIDS diagnoses among women ages 13 and older in 2008, but only 12% of the U.S. population of women. For many women in this country and worldwide, HIV remains a life threatening disease due to poor health care access and the cost of ARVs. For those like myself, fortunate enough to have access to these important medications, there are the side effects and challenges of long-term use of ARV’s that impact us in all that we do. Today, I’m am privileged to stand before you as a spokesperson for the millions of women worldwide who look to scientists and doctors for help in preventing and controlling the spread of this devastating disease.

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My journey with HIV began when I was diagnosed in 1988, I had few reasons to believe that I would be alive in 2010. But I believed I would be. I knew I wanted to be. I had things to do. I still do. My journey began in a small, sterile exam room in a doctor’s office in Atlanta, Georgia. It was June 28, 1988, and I was sitting in this room with my parents for what seemed like an eternity while we waited for the results of my confirmatory Western blot. When the door opened…and then shut, it was clear the news was not good. I was HIV positive. I was told not to read anything, it was too confusing, and not to tell anyone, this could ruin my family’s lives. I was 19 years old.

Although, metaphorically speaking, it took several years to escape that room – the room where the shame and stigma of HIV was first introduced to me – I did not stop living. I finished college, went to work for Senator Sam Nunn on Capitol Hill, and eventually found my way into the community of people living with HIV through a grassroots AIDS service organization back home in Atlanta. This is where I found my way out of that room of secrecy and silence, of shame and stigma – a room where many, many people with HIV still live.

Over the past nearly 20 years, I have had the privilege to work with the best and brightest in the field to increase awareness, expand research, develop novel programs, and serve people living with HIV. For most of this time, I have largely focused my efforts on treatment advocacy for women with HIV and AIDS. Not because I feel women are more important than men, but because I believe the more we know about preventing and treating HIV disease in women, the more we know about preventing and treating HIV disease. Specifically, the human body is a vast frontier, and an amazingly complex series of ecosystems with varying degrees of independence and interdependence. I believe the female body, and in particular the female reproductive tract, is the next great frontier for answers and insights into HIV prevention, transmission and overall disease management.

In 2002, I started an organization called The Well Project, with a mission to change the course of the AIDS pandemic through a comprehensive focus on women. The Well Project is made up of an award-winning web portal, http://www.thewellproject.org, in both English and Spanish (and working towards globalization now), which hosts a remarkable blog called A Girl Like Me, and the Women’s Research Initiative on HIV/AIDS (WRI). The WRI is an amazing group of thoughtful leaders representing the government, researchers, academia, the HIV community, and the pharmaceutical industry – who all come together to work towards more, better, faster research in women.

At WRI 2010, this group described the shifting research paradigm and the need for expansive and novel thinking as we move into the 30th year of the fight against this disease. Expansive thinking means many things to be sure, but the opportunity to engage in expansive thinking manifests most profoundly when we integrate a broad, interdisciplinary approach to the development of novel research. For example, the WRI has focused on a seemingly simple and basic question in our deliberations over the past two years: How do women become infected with HIV? I challenge each of you to consider the many layers and facets to this simple question. Think first about the layers to this question biologically. Then one by one overlay the behavioral, psychological, social, political, and environmental determinants/questions to how women become infected with HIV. You may scoff at this exercise, but if you take a few moments to consider this you may be surprised at the number of questions you can come up with.

Like many women living with HIV, I care about these questions for many reasons. There is the obvious one, my own HIV-positive status. There are the countless women I have met (and even more that I haven’t yet met), who walk this walk with me – whether they know it or not. And there are the girls of the world, who are growing up with the threat of HIV in their future. These girls are your daughters and my daughters – and they deserve to live in a world without AIDS.

My daughters, Madelyn and Sophia, are my miracle babies. They are the children I was never going to have, because I had HIV. They are both HIV-negative, healthy, vibrant children – Maddy is 8 years old and Sophie is almost seven. They are a tribute to the work we all do – as researchers, as advocates, as clinicians, as patients. They are living, breathing (and sometimes screaming) reminders that what once seemed nearly impossible (HIV-free, healthy children born to mothers with HIV), is not only possible, but perhaps the greatest success story in the fight against HIV so far. What will our next one be? And what will your part in that story be?

I believe the next great success story is coming. The work is being done now – and for that I am deeply grateful. I am here, living this very full life, because scientists like each of you, who I don’t know and who don’t know me, chose to take this battle on and fight HIV. There is still a great deal to be done, and I will continue to work side by side with you to realize a world without HIV and AIDS.

Footnotes
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    This publication (#6092-08) is available on the Kaiser Family Foundation’s website at http://www.kff.org.