1st International Workshop on Adverse Drug Reactions and Lipodystrophy in HIV 26–28 June 1999 - San Diego, CA, USA

LIPODYSTROPHY IN HIV: A COMMUNITY PERSPECTIVE

Antiviral Therapy 1999; 4(Suppl. 2):33 (abstract no. 10)

B Cheng
Project Inform, San Francisco, California, USA

Project Inform is a national HIV/AIDS treatment information and advocacy organization based in San Francisco. We began hearing of changes in body composition around January 1997 from our volunteers and through our treatment hotline. Since that time the number of calls to the hotline regarding lipodystrophy has dramatically increased. In a survey of 3936 hotline calls from January 1, 1997 through May 26, 1999, almost 15% of the callers had questions on lipodystrophy and/or increases in lipid levels. The first few months after we began hearing about the body composition changes we referred people to endocrinologists to try and get a better understanding of what was happening. As the reports increased, we organized and participated in forums as well as collaborated with other community and research groups to push forward a research agenda to better understand and treat the problem. While the research community is continuing to find the cause and potential therapies for the lipodystrophy syndrome, Project Inform is providing the latest information to our constituents through our treatment hotline, our website and through our Town Meeting program. Additionally, we are sponsoring multiple forums which will explore the question of whether structured interruptions of treatment might help reduce the manifestations of lipodystrophy and other drug side without seriously compromising the beneficial effects of therapy.

Lipodystrophy has become a major interest of researchers worldwide and multiple strategies are being tested to treat it. The patient community is increasingly well informed about the problem and anxiously awaiting additional information from Project Inform and other information providers before choosing personal strategies for coping.

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