HIV treatment and research advocacy

Project Inform’s Treatment Information and Advocacy Department staff works to accelerate the pace of discovery in HIV/AIDS and provides a community voice to the research process. We partner with researchers in government, academia, the community and industry—as well as others—to ensure research meets community needs and is conducted in a timely and ethical manner. We also strive to ensure that early access programs remain inclusive and fair. The feedback loop between Project Inform’s staff, the community of people living with HIV, the research establishment as well as regulatory and legislative bodies makes Project Inform’s programs particularly unique.

The Treatment Information and Advocacy team facilitates AIDS research funding by partnering with the Foundation for AIDS Immune Research (FAIR) and participating on advisory boards. Project Inform helps facilitate community-based research initiatives through our Institutional Review Board (IRB). An IRB helps ensure that research is ethical and study details are appropriately conveyed to volunteers.

Project Inform’s advocacy efforts are focused on:

Anti-HIV Therapies
The Department plays a leading role in advocating for early access to useful new therapies, especially for those most in need. Along with other community groups, Project Inform has helped develop strategy studies focusing on when to start or switch therapies. Our current efforts are working to define new strategies and emerging issues in the new era of anti-HIV therapies. Previous efforts have focused on identifying and understanding emerging issues such as structured treatment interruptions, lipodystrophy and bone problems.

Diagnostic Tests
The Department has played a significant role in broadening access to viral load and resistance tests over the course of the epidemic and now plays a similar role with developing and broadening access to tests for viral tropism. Other efforts include advocating for research to determine how therapeutic drug monitoring may provide more information on a person’s overall health or risk of disease progression.

Drug Pricing
Project Inform continues to be concerned with the rising costs of health care and particularly how drug pricing contributes to the crisis in the cost of HIV care and treatment. As a result, the Department participates in and provides leadership to the Fair Pricing Coalition, a loose coalition of activists that works with industry around the pricing of anti-HIV drugs.

For more information about any of the programs listed above or for other Project Inform activities, or call 415-558-8669.