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Treatment Activism and You!

December 2003

The ultimate goal of AIDS treatment and research advocacy is to accelerate the pace of scientific discovery toward a cure for AIDS. As we progress toward this goal, including new HIV therapies, new issues emerge, such as the need for research to better understand and manage drug interactions and side effects of new medications. People living with HIV and their advocates have dialogued with scientists since the early days of the epidemic, conveying community needs for research and working to influence what is researched and how research is conducted to better serve the needs of all people living with HIV.

Fundamentally, what is researched and how things are researched results in what we learn about HIV and its therapies. For example, if women are not included in a research project and/or if questions about how a drug or HIV is impacting women are not asked from the beginning of a research project, then when it's finished women-specific information can't be expected from it. This doesn't mean that the study results have no meaning or relevance to women, but the information would have limitations.

Treatment and research activism is not always easy to do. It takes time and determination and can feel intimidating and overwhelming at first. Many of us don't have science backgrounds or special educations that help us understand the world of research and science. Science is a very male-dominated field and women, including women working in science, often find it hard to be heard by the powers that be.

Each of us brings unique life experiences and perspectives to the table. What questions are important to you and your loved ones relative to HIV? What questions do you have about treatments and how they are (or are not) working in your body? What barriers do you have (and others like you) to being in a study? What would remove those barriers? What kinds of HIV research would you participate in and why? What do you think AIDS research priorities should be and why?

When you ask yourself these questions, what are your answers? Who will represent your concerns to the research establishment so that they get addressed? If not you, then who? Making your voice heard will effect changes that will benefit you, our children and future generations -- to realize a cure and a world without AIDS.

In the late 1980s and early 1990s, when women asked themselves these questions, one of the answers was, "I would participate in research, but most of the studies won't allow women of childbearing potential to participate." An entire range of women from girls who just began menstruating up to menopausal women were excluded from most studies of new therapies. Industry and government didn't want to bear the burden of legal concerns if a woman in a study became pregnant and a new drug impacted the healthy development of her unborn baby. Treatment activists got together to change the system. Now, unless there is some strong scientific reason, women cannot be excluded from research merely because they could have a baby. Instead, most studies now either require the use of birth control and/or make provisions for women who do become pregnant. Several studies of anti-HIV drugs have only included women, and there are research networks that focus almost exclusively on women and HIV.

It will take a bit of heroism from each of us to realize our visions of our communities, our futures and our lives. Your voice, your vision of the future and your celebration of life are needed in the fight for better research towards a cure.

There Are Many Ways to Influence Research, But How Do You Start?

There Are Many Ways to Influence Research. But How Do You Start?

Ask yourself questions ... like the ones above. What questions do you have about HIV and therapies? What's important to you? The goal is to understand what barriers exist for you, and people like you, to participate in research and what can be done to address and remove those barriers; to change both the type of research as well as how research is conducted. You have answers to these questions and your perspective and ideas are much more valuable than perhaps you realize!

Learn. Sometimes our most pressing questions have already been addressed by research, and answers exist. Other times, perhaps more often, the questions we have are exactly what researchers need to hear to inspire new research. As you start to answer your own questions, it becomes apparent what has and hasn't been done -- where there is and isn't information from studies.

Take action. There are several places you can take the issues that are important to you. One place is directly to HIV researchers in your area. Set up a meeting and talk with them about your concerns. Many academic institutions have public hospitals with large research programs. You may have an AIDS Clinical Trials Unit (ACTU) or a Community Program for Clinical Research on AIDS (CPCRA) site in your area. These groups have local community advisory boards (CABs) that meet regularly to get input into research and hear and respond to concern.

They also have national community constituency groups (CCGs), providing community input into their national research agenda. These groups are always looking for people interested in bringing a new perspective to AIDS research, inspire new ideas and assure that research addresses the concerns of all people. There are also CABs for the Women's Interagency HIV Study (WIHS) and other networks that focus on or include women like the Women and Infants Transmission Study (WITS). Becoming involved with these groups is a great way to start, and other community members who are involved can help and mentor you.

Recently, a network of activists around the country have begun building a coalition -- the AIDS Treatment Activist Coalition (ATAC), who support and mentor one another while working together on treatment activist issues. Their Web site,, is a great place to go to ask questions, learn about treatment activism, meet others just beginning to get involved and find mentors.

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