What is the ACTG? The AIDS Clinical Trials Group is the government funded AIDS research effort. As all clinical trials, this group is required to have a CAB (Community Advisory Board) to provide community input into trial design and implementation. The CAB for this effort is called the CCG. The CCG is comprised of HIV infected individuals and community members who are affected. The make up of the group is intended to reflect the demographics of the AIDS epidemic in the United States.
I am excited about being accepted as a new member of the CCG for several reasons. First, I can learn new information about what medications are coming down the pipeline and let my friends know about it right away. I can share this information with the staff and members of Women Alive, and we can write about it in this newsletter and let you know, too.
This effort of representing Latina communities will be a great challenge for me. I will have the responsibility of studying and following the latest developments in AIDS clinical trials. The members of my support group have expressed interest in such topics as the long term effects of medications, the secondary effects of these medications, and scheduled treatment interruptions.
I will be learning all I can about new medications and their different effects on different people. For example, what's the latest treatment strategy for HIV+ pregnant women? I will hopefully learn how to minimize the pain and symptoms associated with the side-effects that come with some medications such as; weight loss, hair loss, diabetes, osteoporosis, hepatitis, raised cholesterol, etc.
This position comes with tremendous responsibility. Please let me know if there are issues about AIDS, medications, and/or clinical trials that you would like me to bring up to the other CCG members and to the ACTG committees. The CCG has a conference call every week. This helps our members and members from other ACTGs maintain constant communication and stay updated on the progress of their clinical trials.
Because the CCG is so diverse, I will meet people from a variety of backgrounds. I will be able to provide input and share my thoughts and opinions about AIDS research and have the benefit of hearing what others have to say. Together we will be able to understand and share information about the clinical trial process, new medications and possible side-effects. In conclusion, being a member of the CCG makes me and Women Alive part of advocating for, and finding medication that actually works for, people living with HIV/AIDS.
If you have questions about any of this, please call me at 1.800.554.4876 and/or write to CCG Member c/o Women Alive - 1566 S. Burnside Avenue, Mid-City Los Angeles, Ca. 90019.
I will be writing updates for readers in upcoming issues of the Women Alive Newsletter.