One month ago, the National Viral Hepatitis Roundtable (NVHR) hosted its first ever Patient Summit with the theme of “Nothing About Us Without Us.” Nearly 100 hepatitis C patient advocates from across the country joined to share their stories, strengthen advocacy skills, and identify opportunities to lead the way in our national response to viral hepatitis. You can follow the conversation on Twitter by searching #Voices4Hep. I had the pleasure of helping facilitate a discussion about building coalitions and working with health departments with Ronni Marks from the New York State Hepatitis C Elimination Task Force/Hepatitis C Mentor and Support Group (HCMSG) and Robin Lord Smith from the Maryland Hepatitis Coalition/ Help4Hep. It was an incredible meeting to be part of and the room was filled with both support and a strong sense of community. You could feel the excitement as patients shared their experiences and provided invaluable critique and suggestions on how to eliminate hepatitis in communities across the United States. Many patient advocates are currently part of their state or local elimination planning processes and others are looking for ways to become involved with this work.
“The voice of the patient advocate is as important if not more important than other voices at the table. If health departments don’t include the patient perspective, they are missing essential insight and information. The Patient Summit was an incredible success and we are already seeing results with patient advocates connecting with state and local health departments and other key partners. This is just the beginning….the patients are coming to the table.” - Robin Lord Smith from Maryland Hepatitis Coalition and Help4Hep
I sat down with the new Director of NVHR, Lauren Canary, to discuss the importance of engaging people with lived experience in hepatitis work and ways that health departments can support their state and local patient advocates.
TO CONTINUE READING: https://www.nastad.org/blog/nothing-about-us-without-us-importance-centering-voices-patient-advocates-public-health