Margaret Anderson, Executive Director, FasterCuresWhat a privilege it was to lead a 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. The paper, authored by FasterCures and HCM Strategists, was intended to distill lessons learned from the HIV/AIDS model so we could examine if they can be replicated to address today’s medical research advocacy challenges. Five elements of the model rose to the top: attention; knowledge & solutions; community; accountability; and leadership. Thursday’s forum delved into each of these elements, and reminded us that while challenging the system is a Herculean task, even under the most difficult circumstances, it is absolutely possible to achieve change.
As my colleague from HCM Strategists and collaborator on this effort Michael Manganiello said in his opening, “If it weren’t for the leaders of this movement, I wouldn’t be standing here today.” I pointed out how personal this issue is for so many, and how many people who have died from HIV/AIDS paved the way. But, as Manganiello offered, “We don't question status quo anymore. We should not accept that the system is unchangeable.”
HIV/AIDS activists were successful in 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 on the science – and it was that combination of factors that was absolutely key. Getting to the table does not equal getting attention. We asked whether advocates today are lulled into a sense of complacency by sheer virtue of the fact that we are “invited in”. Are advocates part of a box that gets checked instead of a voice that gets heard?
We need to stop accepting that the system is what it is and focus on what it should be. Maureen Byrnes who was executive director of the National Commission on AIDS, had two important messages for all 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 other disease populations including breast and prostate cancer to help share the lessons learned.
Patients, not just patient groups or scientific representatives, must be at the center of advocacy efforts – and they need to invest time and energy into understanding the scientific, policy, and regulatory issues and how to address them. Byrnes asserted, “Success is not just asking for change, but understanding the system and thinking about what a solution looks like.” This report offers up an opportunity for all disease advocates to figure out how to apply this to their community.
So, what was the advice for today’s advocacy? Dr. Tony Fauci, director of the National Institute of Allergy and Infectious Diseases asserted “If you really want to shake cages you have to be persistent. This is very different than coming out for a meeting once a year. We knew [the HIV/AIDS activists] weren't going away.” Dr. Jim Curran who ran the HIV/AIDS Division at the Centers for Disease Control and Prevention and is now Dean at the Rollins School of Public Health said “As an activist, you have to have a certain amount of threat you bring to a meeting.”
I think what struck me most during this discussion was the shared insight that both Fauci and Curran offered: activism is NOT personal. Whether it was the 20,000 postcards with unfriendly images being delivered to your home, or full-page NYT ads saying you were an idiot, or relentless noisemaking and disruption at meetings, they both spoke over and over about how “they aren’t just numbers, they are people.” Leadership was one of the elements of the model we offered in the paper, and I think those who have worked with these officials, have benefited from their tireless commitment to getting things done, or have heard them speak can say they embody just what you want and need in a leader.
So, I urge everyone to read this report, and analyze how you can apply the elements that defined HIV/AIDS activism to advance your solutions. They’re basic but it’s a roadmap for how to achieve meaningful change. 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.”
Onward. Let’s get back to basics.