After Treatment Ends: Understanding Long-Term Side Effects & Symptoms

If you are one of the people who has completed treatment and gotten the great news that you are cured/undetectable virus, my heartfelt congratulations to you. I will never forget hearing that news myself. It really was life-changing and I know from talking to a lot of others who share in that memory of when we got the wonderful news that we were free of the virus, and how uplifting it was.

New versus old treatments

Over the years, I have been blessed to talk to many more people who themselves have been cured and it always makes me smile to hear the news and give congratulations. It is a big deal, considering how we are now able to cure people of hep C with relative ease. For some of us, we are part of the original treatment cohort with interferon, and some were successfully cured, but not in the numbers like we can expect and see now, and that does not begin to address the side effects experienced, as some treated multiple times without reaching SVR (cure). For some, the interferon-only and later combinations with ribavirin and two other drugs caused their own set of health problems. Some of these have shown themselves to persist in causing health and wellness challenges that are ongoing years after people finish what was the standard of care once.

Long-term effects of treatment

This is not wholly unique to people who treated with interferon and combined therapy. In my work, I have heard from a significant number of people who express that they have lingering health issues post-therapy and cure. Anecdotally, based on what we have seen and heard from people, there are two basic groups of people who have successfully treated and been cured. The first group is the people who were cured and went on to feel much better and return to their lives with no issues to speak of as far as any lingering health concerns. The second group is made up of the people who are now cured and are dealing with lingering and ongoing health concerns.

Looking after the hep C community

Taking into account that curing hep C does not solve all health issues that people experience in their lives, and the social determinants of health can and do play a huge role in long-term health outcomes, people who have little or no access to secure housing, food, and healthcare will suffer the most across all health and wellness categories and measurements. This is not to say that everyone who experiences ongoing health issues related to their hep C fits in this category. Some people have advanced liver disease or other conditions that compromise the wellness of people, and some are directly linked to their hep C experience. These are the people we need to help most. These are the people we need to hear from most, and although they are in general the ones we do hear from, there are many who have no voice that we need to engage with more and find better ways to do it.

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