Reflecting on Experiences of Treatment and Cure
NOTE: Quotes are presented word for word apart from minor editing for readability and clarity. Identifying details have been removed. Square brackets show text that has been added or, where ellipses (three dots) appear, show that text has been removed. Ellipses without square brackets indicate a pause. For example, ‘I had the nurses explaining to me, like, how easy it was […to have] treatment and I went to the [hospital liver clinic] and there was a doctor … can’t think of her last name, really nice lady […] Yeah, she explained everything to me and said it was a good time for me to do it now and, yeah, [I] just stuck with her and got that done’.
The people we interviewed for this website describe different experiences of hepatitis C treatment. They primarily discuss the new direct-acting antiviral (DAA) treatment, but some also recount experiences of the older (interferon-based) treatment. They report a range of different issues – often related to the kind of treatment they had – that affected their experiences, including treatment knowledge, different kinds of support, experiences with health professionals and, for those who had the old treatment, side effects. Family and friends also feature in their treatment stories (see also, Treatment decisions: Family, friends and other important relationships).
Most participants who had the older interferon-based treatment recall unpleasant and difficult treatment experiences. They often talk about severe side effects and uncertainty about treatment outcomes.
While most of the people we interviewed who had received the new treatment report positive experiences, some mentioned needing further information about treatment and more support following treatment.
Many participants also recounted positive interactions with health professionals that made the decision to begin treatment easier. However, issues such as uncertainty about treatment are also mentioned (see also, Obstacles to having the new hepatitis C treatment).
Many of the people we interviewed had been cured of hepatitis C, either with the new or old treatment. What they mean by being cured varies, but what they describe is often connected to improved health and wellbeing, feeling positive about the future and increased vitality more generally.