On June 9, 2016, the Redwood City Hepatitis C Support Group met for the last time. It was the end of a chapter of a story that isn’t quite finished. The beginning of the story is that in 1998, nurse practitioner Ginny Morrow and I saw a need to offer more support to hepatitis C patients than what they were able to get on their own.
Our first meeting was in April and the group continued for 18 years. The group grew; other leaders emerged, including another nurse named Brooke Clark. A second group was added for the often neglected family and friends of those with hepatitis C, facilitated by Amanda Newstetter. In 2006, I moved out of the area, leaving behind dear friends and an important part of my life. After Brooke moved, Mary Northrup helped facilitate with Ginny.
More than 40 people attended the final meeting, including caregivers. Every single person with hepatitis C in attendance is now cured. One of our youngest group members went to nursing school and is now working with hepatitis patients. There was much to celebrate.
Now that hepatitis C treatment is infinitely easier, and can be cured in as little as 8 to 12 weeks, attendance has dropped. This is a wonderful reason to end the group meetings. However, people with hepatitis C still need support. There is much to navigate, such as treatment, access to care, medication side effects, living with cirrhosis, extrahepatic manifestations, transmission prevention, and so on.
Fortunately, web-based hep C groups are flourishing and there are many to choose from. Two that I have personal experience with are HEPmag.com and Facebook’s Hepatitis C Family and Friends.
Think we don’t need support groups? Well, research says we do. In his ground-breaking research, Harvard-trained psychiatrist David Spiegel found that support groups can:
- Improve quality of life.
- Affect response to treatment and resistance to disease progression.
- Prolong life.
During my hep C treatment, participation in the Redwood City Hepatitis C Support Group made all the difference in the world. Ditto for the HEP Forums and Facebook’s Hepatitis C Family and Friends. I can’t imagine what my life would be like had I not found these safe havens.