National Patient Advisory Committee

Through the generous support of Gilead Sciences, ALF has launched its first National Patient Advisory Committee, 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 National Patient Advisory Committee (NPAC).

Learn all about the Hidden Truths of Hepatitis C. Watch these videos…

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 have participated in a hepatitis C health education video series produced by WebMD and Everyday Health (view them here). 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!

 

This page has been updated May 2015.