I have heard that some providers and others are questioning if there is still a need for Hepatitis C 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 these groups.
As I travel the country training people, I see the lack of education about Hepatitis C, both from patients, as well as providers, particularly in rural areas. This is why I now refer to them as Educational Support Groups.
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 Hepatitis C. Some patients return to groups stating that they are experiencing physical and psychological issues post treatment. Even after cure, some are not aware that they need to be followed up with an Ultra sound every six months (F-3 or cirrhosis) as they may still be at risk for Liver Cancer. These are some of the things patients have told me they have learned by attending a group not from their provider.
For those aware 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 had a patients express to me that it makes them feel "unworthy". This 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. When working with people who inject drugs, I have heard too many times that they are not aware that they can become REINFECTED once cured. This message must be heard loud and clear. Many are not aware that the virus lives on equipment.
There is a generation of young people who have become infected with Hepatitis C through use of injecting opioids and heroin sharing needles. More education in regard to transmission should be included in these groups.
Some in the LGBTQ community are sharing needles for hormones and steroids. There is also a growing consensus that sex is a leading cause of new HCV infections among men who have sex with men (MSM), especially those who have HIV. We need to be educating them.
Women of child bearing age need to be educated on vertical transmission of Hepatitis C.
Support groups can be a good 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 Hepatitis C. It is a good way to show patients how their voice matters!
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.
We must ensure that patients never give up hope!