The DARE scientific leadership and affiliated researchers partner with people living with HIV and their advocates and allies not only because it is the right thing to do, but because it will certainly result in better science and a faster path towards an HIV cure.

 

Community partnership within DARE starts with the DARE Community Advisory Board (CAB), which is made up of a network of people living with HIV and their allies and advocates in the United States, Australia and Germany. As community advisors, we bring significant expertise and experience in clinical trial design and conduct, science advocacy with funders and regulators, and education and engagement with people and communities affected by HIV.

 

Community engagement in biomedical research had its roots in an historic moment in the 1980s, marked by the refusal of people living with HIV to be passive in the face of a disease for which survival post-diagnosis was measured in weeks and months. People with HIV and their allies fought for expanded research funding, rapid access to promising new therapies through changes to the U.S. Food and Drug Administration (FDA) drug approval process, and – critically important – direct involvement in the clinical trials being designed to test medicines to prevent and treat opportunistic infections (OI) and ultimately antiretroviral (ARV) drugs.

 

Additionally, most science advocates from the 1980s and 1990s and beyond have founded or been in leadership positions in community-based organizations that provide education on science, medicine and healthcare to people living with HIV and their communities and have fought for and been advisors to more comprehensive engagement of community members in every aspect of the scientific process, including not only biomedical, but also behavioral and social science.