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!!!!