Sue Simon

”HepatitisI was diagnosed with hepatitis C and cirrhosis in 1991. My only symptoms were fatigue and a lack of stamina. Most people who were diagnosed earlier were told they had non-A non-B hepatitis and it was nothing to worry about. We now know that hepatitis C is not a benign disease but is asymptomatic in the early years as it quietly progresses damaging the liver. I was terrified and found that my doctors knew very little about my virus. I tried treatment over and over again each time a new interferon came available or a new combo treatment was approved. I never responded. In 2013 I got my SVR (sustained viral response) in a clinical trial with the new direct acting antivirals. I never thought I would see the day that a virus was cured with medications.

Soon after my diagnosis I began to work in the hepatitis community as an advocate and an educator. In 1999 she started the Hepatitis C Association with a mission to educate patients and providers about this insidious disease and give patients a place to talk about their fears, their hopes and their dreams for a healthy life. Meeting and getting to know other patients inspired me and took away some of my fear. I learned that helping others helped me, as well. As time went on and patients learned that I had cirrhosis since diagnosis and I had treated and didn’t respond so many times, yet I was still here and living my life, that gave them hope and lessened their fears.

Since my diagnosis I have been an active hepatitis C advocate for education and awareness. I have participated in CME and CEU programs for physicians, nurses, case managers and counselors who work in substance abuse settings. I have done many media interviews and established and managed Hepatitis C Association’s hepatitis C toll-free support line and online discussion group from 2001 to 2012.

The following are some of my HCV advocacy contributions and activities:

  • Reviewer for CSAT (SAMHSA) Treatment Improvement Protocol (TIP) 43, Medication-Assisted Treatment For Opioid Addiction Treatment Programs
  • Developed Viral Hepatitis Education Program for clinicians working in substance abuse and managed delivery of the program for CSAT (SAMHSA) to 3,600 clinicians in 38 states between 2004 and 2009. This program was funded by US Department of Health & Human Services (HHS)
  • Developed and continues to manage delivery of a companion HCV education program for patients in substance abuse settings. This program has reached more than 6,000 patients in since 2009.
  • Hepatitis C Association has been a member of the National Viral Hepatitis Roundtable (NVHR) since its inception. Recipient of the NVHR Community Advocate Award – 2013
  • Member of Patient Advisory Committee of Summit Medical Group
  • Member of New Jersey Department of Health Hepatitis C Advisory Board.
  • Founding member and Managing Partner of The Support Partnership which operates Help4Hep – a nationwide toll-free support and resource help-line for people living with hepatitis C. This helpline provides assistance and support to more than 100 new callers each month
  • Kean University
    • Bachelor of Arts, Education (BA Ed)
    • Certified Teacher of the Handicapped
    • Certified Elementary Education
  • Rutgers University Learning Disabilities 18 post BA credit

Click here to read all of Sue’s articles on HepatitisC.net.