Community Advisory Board Member Advocates for Women and Minorities to Participate in ACTG Network Clinical Trials

Aug 11, 2015

Danielle Campbell has served on the AIDS Clinical Trials Group (ACTG) Network’s Community Advisory Board (CAB) at the University of California, Los Angeles (UCLA) clinical trial site since 2012. Each ACTG Network clinical trial site has a CAB made up of members from the local area that are affected or infected by HIV/AIDS. The CAB holds regular meetings with site investigators and also hosts events open to the community to educate people about HIV/AIDS and ACTG Network clinical trials.  In addition to serving on the UCLA CAB, Danielle is also a member of the Network’s Community Scientific Subcommittee (CSS) where she provides input to ensure that the ACTG scientific agenda reflects the needs of all people living with HIV/AIDS. More specifically, Danielle is proud to provide a voice promoting and advocating for the inclusion of women and minorities as study participants in ACTG Network clinical trials.

“I choose to advocate for women and minorities to enroll in ACTG Network clinical trials because I believe in the power of science to affect biological and clinical change,” said Danielle. “I believe that it is imperative for those most marginalized in this epidemic to take part in the transformative science of the ACTG, and any and all treatment, curative and advocacy efforts contained therein.“

Through her participation as a CAB member, Danielle has had the opportunity to foster relationships with other members. She notes that her relationship with fellow CAB member Liz Barr has had a significant personal impact on her life and helps to remind her of the important reasons why she is an advocate for those impacted by HIV/AIDS. Danielle cherishes the relationship she has built with Liz through their joint advocacy efforts. She takes every available opportunity to connect with Liz to gauge her impressions about women’s health issues and life in general. Danielle feels extremely fortunate to be part of a group of brilliant thinkers, advocates and leaders of the CSS, Liz being one. It is not surprising that Liz has a mutual admiration for Danielle as well.

“Danielle is a tireless advocate for women and people of color in our trials, and also for younger members in the CSS,” said Liz. “She is a prime example of what we can accomplish together and I have so much respect for her as a person and an advocate. It is an honor to work with Danielle, not only as a colleague but also as a dear friend.”

Over the past few years, there have been considerable efforts taken to increase the number of women who participate in ACTG Network clinical trials.  These efforts are motivated by the need to accurately represent all populations infected with HIV/AIDS, which has proven to be a challenge for the ACTG Network in the past. However, Network investigators are acutely aware that active and well-represented participation of women in trials allows them to explore sex-based differences as primary and secondary study objectives or develop exploratory studies that examine screen failures among women. In addition, Network investigators understand that minorities face an array of multi-cultural issues that should be addressed and incorporated into protocol development.

Danielle has a message for ACTG Network leadership and investigators:

“We have proven that there is added value in partnerships fostered between clinicians, researchers and the CAB. In this light, we look forward to continued invitations to participate in trials, sit on protocol teams, community advisory boards, leadership committees, conference support and in other capacities as needed.  I will continue my efforts to advocate for the enrollment of women and minorities in ACTG Network clinical trials and will work with you to help you achieve these important enrollment goals”

She also has a message to anyone who is considering enrolling in ACTG Network clinical trials:

“The road ahead will be filled with uncertainties, rest assured. Stay connected. Get to know your clinical research site staff, clinicians and researchers. Ask questions, ask questions, and did I say, ask questions!? Compassion is the key! We need to work together to support one another in this endeavor.”

Danielle notes that one of the most rewarding aspects of being a CAB member has been connecting with other HIV/ AIDS advocates across the globe. She is encouraged by the construct of the ACTG Network CAB that allows members a space to have meaningful conversations about the significance of clinical trials, share exciting scientific research and advocate for study participants during protocol development.

In the future, Danielle will continue her advocacy work promoting the enrollment of women and minorities in ACTG Network clinical trials.  Nevertheless, she is always mindful of the past and offers this closing message to all of those who have participated in ACTG Network clinical trials over the years:

“There are no words to express the depth of my thanks to you for your sacrifice. Your selfless actions will forever benefit generations of people impacted by HIV/AIDS. I stand with you, for you, and beside you, from now until we find a cure.”