Monday, August 15, 2011

Working Together for HIV/AIDS Cures: Advocates

Photo Credit: Amaury Laporte

In my first post in this series, I discussed how scientists and physicians worked to better understand and find new treatments for HIV and AIDS. Scientists didn’t act alone though. Advocacy groups have been and continue to be central to the progress in this field.

Here at New Voices we mainly focus on advocacy, but what does effective advocacy entail? According to a new report by FasterCures and HCM Strategists, the fight for HIV/AIDS patients provides a powerful model for other advocates to follow. This strategy includes 1) attention, 2) knowledge and solutions, 3) community, 4) accountability and 5) leadership.

Bringing attention to the plight of AIDS victims was the first step toward advocating for them. Groups like the AIDS Coalition to Unleash Power (ACT UP) staged protests in front of government agencies like the FDA and the CDC to raise awareness among administrators and the public regarding the human cost of this disease.

While the theatrical nature of street protesting helped advocates grab the spotlight, they also needed their concerns to be taken seriously. That’s where knowledge and solutions came into play. HIV/AIDS activists educated themselves with the help of researchers like Iris Long about the science behind the disease and the complexities of government processes. This allowed them to identify specific problems they wanted solved, like changing the definition of AIDS to include symptoms that are unique to women or intravenous drug users so these groups could receive government health benefits and pushing the FDA to speed up the approval process for potentially lifesaving therapies.

A third element in HIV/AIDS advocacy was the emphasis on community. Groups like ACT UP and Project Inform brought together people who were suffering from AIDS and the stigma associated with it. There were lots of meetings and events incorporating fun with these serious issues. People are social beings after all and these get-togethers helped to strengthen personal relationships and community ties.

Finally, accountability and leadership go hand in hand. Advocates followed through on their demands, holding policy makers, scientists and regulators accountable for their promises. They did this by singling out "champions" within these three groups who would act as leaders in AIDS policy and research. These groups also identified leaders in the advocacy community to step up to act as unifying voices for their movement.

What might advocates for health-related research learn from the work of groups like ACT UP?

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  1. Great post! Are there any other advocacy groups that have been successful with this approach? What kind of events would they hold to bring in the community? Thanks!

  2. Breast cancer advocacy groups have also had a great deal of success using a similar approach. These groups have seized public attention for the disease through a number of outreach programs including, but not limited to, sponsoring races and popularizing the pink ribbon as a symbol of breast cancer awareness. Gaining knowledge helped advocates play a role in establishing screening and treatment recommendations. Working as advocates has also brought people suffering from this disease and their families and friends together, creating a sense of support and community.