I have heard lately that some doctors and others are questioning if there is still a need for HCV support groups. While I agree these groups are no longer needed for hand holding purposes as they were in the interferon era, they now have taken on a new look. These are some of the reasons I believe there is still a very important role for educational support groups.
As I travel the country training people, I see the lack of education about HCV, both from patients, as well as doctors, particularly in rural areas. This is why I now call them Educational Support Groups.
Support groups are a great source to find patients who may want to become advocates for their own health as well as for others who cannot speak for themselves. Part of the group can be demonstrations to patients on the few easy steps it takes to call their local and state politician’s office to help educate them on HCV. It is a good way to show patients how their voice matters!
For those of us who experienced treatment before the DAA’s, the side effects of today are minimal. But for those who are treatment naïve, for some, side effects exist. While the treatments may be for a shorter time, some patients still need help in dealing with having HCV.
Even after cure, I am seeing some patients return to groups stating that they are experiencing post treatment issues, both physically and psychologically. For some they are not aware that they need to follow up, for those with cirrhosis knowing they should be having MRI’s done every six or twelve months. These are some of the things patients have told me they have learned by attending a group.
For those who know there is a cure, but have no access to treatment due to restrictions, this has impacted them psychologically. They feel “stigma” now more than ever. I have even had a few folks say it makes them feel "unworthy". This is to me is heartbreaking.
For those who do not have access right now, it is a good source for how one can maintain their health while awaiting treatment. For those who have cured, ensuring they stay cured and healthy. Working with the substance use community, I have heard too many times that they are not aware that they can become REINFECTED once cured. This message must be told loud and clear.
There is a whole new generation of young people who have become infected with HCV through use of injecting opioids and heroin sharing needles. More education in regard to transmission should be included in these groups.
I strongly urge those who are looking for education and support to join a group whether it is on line, in person, or thru tele-support. HCMSG has links to many helpful sites,
http://www.hepatitiscmsg.org/links.html and listing in New York for HCV and Co- infection support groups http://www.hepatitiscmsg.org/hep-c--co-infection-support-groups.html.
If your organization, hospital or clinic is interested in training for facilitating and setting up a group, HCMSG can be instrumental in helping. (Free of charge) Please refer to:
The Hepatitis C Education and Support Group Assistance Program http://www.hepatitiscmsg.org/the-hepatitis-c-education-and-support-group-assistance-program.html for all the details.
Patients must never give up hope!