What a privilege it was to lead a recent discussion with esteemed leaders and officials in the HIV/AIDS advocacy space about our new paper "Back to Basics: HIV/AIDS Advocacy as a Model for Catalyzing Change." Authored by FasterCures and HCM Strategists, the paper was intended to distill lessons learned from HIV/AIDS activism with the goal of replicating that success in medical research advocacy.
Five elements of the model rose to the top: attention, knowledge and solutions, community, accountability, and leadership. Last week's forum delved into each element and reminded us that, while challenging the system is a Herculean task, it is absolutely possible to achieve change.
"We don't question status quo anymore. We should not accept that the system is unchangeable," said Michael Manganiello of HCM Strategists. "If it weren't for the leaders of this movement, I wouldn't be standing here today."
HIV/AIDS activists were successful at turning a cause into a movement because they were organized and knowledgeable about the issues, not just loud. It started with fear and anger, which led to theater, which led to getting smart about the science. That combination of factors was absolutely key.
Getting to the table does not equal getting attention. We asked whether advocates today are lulled into a sense of complacency simply because we are "invited in." Are advocates a box that gets checked instead of a voice that gets heard?
Maureen Byrnes, the former executive director of the National Commission on AIDS, had two important messages for advocates today: "Be specific, and don't wait to be invited." Brenda Lein, who was a member of ACT UP and worked with Martin Delaney at Project Inform, said, "Getting angry isn't enough. That's where it starts, but then you need to understand process and be open to solutions." She has since worked with breast and prostate cancer organizations to share the lessons learned.
Our new report offers an opportunity for all disease advocates to figure out how to apply this to their community. What advice did participants in last week's discussion have for today's advocates? "If you really want to shake cages, you have to be persistent," said Tony Fauci, director of the National Institute of Allergy and Infectious Diseases. "This is very different than coming out for a meeting once a year. We knew (HIV/AIDS activists) weren't going away."
Or as Larry Kramer, founder of ACT UP, said in our interview with him: "You always have to be in charge, and you have to be on top of it, and you have to not give up. It is never ending, and it is day after day after day after day, and it's exhausting. And it really doesn't work unless you realize that. It doesn't work if you don't do it every single day."