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 naive, 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.
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 an Ultra sound done every six or twelve months. 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 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.
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 told loud and clear. Many are not aware that the virus can live 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.
The LGBTQ community are sharing needles for hormones and steroids. 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.
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) The Hepatitis C Education and Support Group Assistance Program. http://www.hepatitiscmsg.org/the-hepatitis-c-education-and-support-group-assistance-program.html
For Providers: http://www.hepatitiscmsg.org/healthcare-provider-support-and-education-program.html
We Must Make Sure that Patients Never Give Up Hope!
Ronni Marks-Founder/ED, Patient Advocate, The Hepatitis C Mentor and Support Group- HCMSG