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Community Engagement in HIV Research
Living into the History of Activism
Victoria A Cargill, M.D., M.S.C.E.
Office of AIDS Research, NIH
Goals of Presentation
• Timeline review of AIDS Activism in the U.S.
• Impact of HIV advocacy on clinical research
• What advocacy is/what you need• What advocacy is NOT• Why we need advocates• Living into the history
What Advocacy Is …
• Asking the hard questions –repeatedly
• Identifying the issues• Understanding the
issues• Making the
commitment to understand the science
• Asking for help when you don’t
• Helping others to understand the issues
• Admitting when you are wrong
• Working across artificial divisions – it’s the VIRUS stupid
• Understanding the difference between compromise and capitulation
• HARD WORK • Empowering and
Infectious
What Advocacy Is NOT…
• Mean-spirited• Rudeness for the
sake of being rude• About being the
center of the world• Putting others
down to raise up yourself
• Ignorance + Arrogance
• Based upon irrationality
• Hijacking important work for a subtext agenda
• Pitting equally impacted groups against each other
Advocates come in all…• ages
• races
•genders
•locations
•serostatus
•celebrity status
We need advocates to say what others cannot…
Very pointedly….
With humor….
And deadly aim….
Living into the history!
Get UP, Get BUSY, GET MOVING
THERE’S WORK TO BE DONE!!!!