My Experiences in CHAMP Prevention Research Advocacy

By Waheedah Shabazz-El

In early 2007, I was introduced to an innovative approach to combating HIV through the CHAMP Prevention Research Advocacy Institute. Prevention research advocacy is pioneering work that is building an agenda through which community involvement becomes an essential and compulsory component in the development of research concepts for HIV prevention in the United States. As an African American woman living with HIV, I am anxious to be a part of the solution that will lead to ending the catastrophic rates of HIV infection in my community.

CHAMP's Prevention Research Advocacy affords a person like me a voice and opportunity to contribute my expertise and draw from my life experience when it comes to identifying areas of community concerns as researchers develop concepts and protocols.

Currently I serve on an HIV Prevention Trials Network (HPTN) working group charged with the development of a “Women at Risk Concept” that targets African American Women at risk of contracting HIV. As a member of this working group, I feel my role as a research advocate has been accepted and taken very seriously by the HPTN researchers. As such, it has given me an enormous sense of empowerment. I do not intend to diminish the importance of the community's role in reviewing informed consent documents, which, until now, has been my only contribution to research. However, I feel very strongly that people living with HIV/AIDS and community representatives can have a greater impact on HIV prevention research if they involve themselves on working groups, especially during the early stages of the development of these concepts and protocols development.

While moderating the CHAMP Research Advocacy Institute at the 2007 NAPWA Staying Alive Conference, I watched the eyes and faces of the participants light up as they began to grasp the concept of community being involved in prevention research in its early stages, along with the researchers and scientists. Our guest presenter, Dr. Jeff McConnell, a brilliant researcher, immunologist and virologist who also disclosed that he was HIV positive, substantiated the need for prevention research advocacy by illuminating how the absence of community input in HIV research directly impacts our communities and our partners when it comes to the development of meaningful and crucial interventions that are needed to decrease their risk of infection.

CHAMP's Prevention Research Institute at the 2007 National HIV Prevention Conference was an extremely powerful event. The agenda was well thought out and encompassed some basic subject matter, which was of enormous relevance. In addition, the topics were presented with amazing clarity by a number of renowned researchers and activists. The topics included:

What is prevention research?

How does prevention research happen?

Where does prevention research happen?

Who sets the agenda?

The infrastructure of the NIH and CDC

I was honored to co-moderate this Prevention Research Advocacy Institute along with another community activist who I have a tremendous amount of respect for, Mark McLaurin from the New York State Black Gay Network (NYSBGN). Once again, it was delightful to catch sight of the light of acceptance as it sparkled in the eyes of the participants! Their embrace of advocacy proved to me that they were no longer in the contemplation stage, but were, indeed, ready to go forward as HIV Prevention Justice Research Advocates.

You can download presentation slides and training notes from this training HERE.

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