The Patient Advisory Council is a way to provide a voice for communication between patients, caregivers and their families and the staff resulting in policy, advocacy or program development for the American Liver Foundation.
Through the generous support of Gilead Sciences, ALF has launched its first Patient Advisory Council, comprised of 30 members who are living with or were cured of hepatitis C. These individuals will help guide ALF’s communications activities around hepatitis C. On November 20 – 22, 2014, ALF brought together half of the group who participated in media training exercises and heard presentations about hepatitis C communications messaging and ALF public education activities. A meeting of the second half of the group was held in San Francisco in late January.
To be a hepatitis C patient advocate is to offer your time and energy to generate greater awareness about a disease that affects some four million Americans and try to effect policy changes in Washington for more research funding and services to support patients and families.
Thirty such individuals – people living with or cured of hepatitis C – were quick to volunteer, helping to launch the American Liver Foundation’s first Patient Advisory Council.
Supported by Gilead Sciences, the Patient Advisory Council will help guide ALF’s communications activities around hepatitis C. In late November 2014 and January 2015, committee members who are divided into East and West Coast Groups, gathered in New York City and San Francisco, respectively, spending three days learning to be effective communicators. Patient Advisory Council members participated in presentations on media training and mock interviews, learned about hepatitis C communications messaging and how to effectively use social media.
Patient Advisory Council members are already putting what they learned into practice. Several are participating in a hepatitis C health education video series being produced by WebMD and Everyday Health (which will be posted in May). This spring, some will travel to Washington, DC for a series of ALF advocacy activities and others have already participated in advocacy activities on the local level.
Says Patient Advisory Council member Michael Adams of Houston, “As a survivor of many hepatitis C treatments and a liver transplant, I am thrilled to be involved in the ALF Patient Advisory Council community. I feel that the experiences that we have endured and the knowledge we have gained on our journey makes us uniquely equipped to help educate and inspire others with this disease.”
“I am so happy to be a part of Patient Advisory Council because it gives me the opportunity to be among people who have had similar journeys and who have a passion for helping others,” says another Patient Advisory Council member Charlotte Stewart of Nashville. “The Patient Advisory Council allows me to share my experiences of living with and eventually being cured of hepatitis C and offer hope and support to those who are still going through treatment.”
As ALF hepatitis C patient advocates, Patient Advisory Council members will give hope to millions of Americans affected by hepatitis C!
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