||Gabriel ADEYEMO [ profile ]
Lessons from HIV/AIDS advocacy efforts
Jun 18th, 2011 - 19:09:48
Source:* Wall Street Journal*
AUTHOR: Amy Marcus
This month marks 30 years since the first case reports were published about
HIV, the virus that causes AIDS. A new report analyzes the factors that
helped patient advocates drive research into and drug development for that
disease, and tries to figure out whether there are lessons to be learned for
other disease advocates.
The paper, called "Back to Basics: HIV/AIDS Advocacy as a Model for
Catalyzing Change" and co-authored by consulting-firm HCM Strategists and
the nonprofit group FasterCures, is based on in-person and telephone
interviews with activists, scientists, government officials and policy
makers involved with the HIV/AIDS advocacy movement. It credits patient
advocates with helping to implement regulatory changes that speed up access
to investigatory drugs and with ushering in an era where patients are taken
seriously and their views represented on governmental and scientific
While advocates now have a level of access and face time with policy makers
and officials that took years for HIV/AIDS activists to win, the report
argues that this doesn't mean advocates "have their attention and, in some
instances, it only means that the decision makers can 'check the box' about
consulting with the community without having really listened.'' In the past
decades, patient-driven foundations have raised huge amounts of money to
help fund research and have hired scientists to staff their organizations.
But it's still crucial to have an actual patient sitting at the table along
with the scientists, drug company executives, and policy makers, the report
says. Patients shouldn't simply "defer to the organizations and scientists
representing their interests."
There are some specific steps taken by yesterday's HIV/AIDS advocates that
could help today's advocates be more effective. Among them: focusing on
specific problems that hold back research or drug development and proposing
solutions; creating a sense of community among advocates so that different
groups are driving towards a common goal; training patient advocates to
understand the scientific and policy issues in their disease and figuring
out the key issue limiting research progress and then developing an approach
to fix it.
Yours' in Prevention Science
Regional Focal Point - West Africa
Global Youth Coalition on HIV/AID (GYCA)
+234-80-6798-7317 | gabriel (at) gyca.org
www.gyca.org | www.tigweb.org
GYCA is a youth-led global network of more than 5,500 young leaders and
adult allies working on youth and HIV/AIDS in over 173 countries world-wide.
GYCA's mission is to empower young leaders with the skills, knowledge,
resources and opportunities they need to scale up HIV/AIDS interventions
amongst their peers.
Universal Access is possible; *
*Zero new HIV infections. **Zero discrimination and ***Zero AIDS-related