ALF Patient Advisory Council
Hepatitis C Patient Advocates Speak Out
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 National Patient Advisory Committee (NPAC).
Supported by Gilead Sciences, the NPAC 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. NPAC members participated in presentations on media training and mock interviews, learned about hepatitis C communications messaging and how to effectively use social media.
NPAC 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 NPAC 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-NPAC 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 NPAC 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 NPAC member Charlotte Stewart of Nashville. “The NPAC 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, NPAC members will give hope to millions of Americans affected by hepatitis C.
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