When asked to describe what their hepatitis C cure meant to
them, Australians who had recently completed treatment emphasised an improved
sense of psychological wellbeing, according to a qualitative study recently
published in Hepatology, Medicine and
Policy.
They described their relief about no longer fearing the development
of liver disease or cancer, or of infecting others. Interviewees who had a history
of injecting drug use understood their cure as a way to break the connection
with their past.
Jacqueline Richmond of La Trobe University and colleagues
recruited people who had achieved a sustained virological response 12 weeks
after completing treatment (SVR12) in order to be interviewed about their
experience of treatment and of cure. All participants were recruited from
clinics in Melbourne, Australia between October 2016 and April 2017. The
interviews were conducted during an early phase of the roll-out of direct
acting antiviral (DAA) treatment in Australia; those interviewed are therefore
likely to be ‘early adopters’ who may have been more motivated and enthusiastic
than some other people who are eligible for treatment.
Twenty people took part in semi-structured interviews. They
were evenly split between men and women; most had been diagnosed for over a
decade; four had cirrhosis or other indications of severe liver disease; and
seven had previously tried interferon-based therapy.
The most frequently identified outcome of achieving a ‘cure’
was being relieved of the psychological burden of living with hepatitis C. Most
participants had not experienced physical symptoms, so the mental burden of
hepatitis C was more important than the physical burden.
People had less uncertainty and fear in relation to the future. A woman who had been diagnosed in 1990 commented:
“It hasn’t changed my
life that much because I never really had any symptoms… The biggest change is
just…emotionally…you go from being someone with a chronic disease that has the
potential to cut your life short to being free.”
While they were living with hepatitis C, they were never sure
whether to attribute illnesses or fatigue to hepatitis C, another illness, or
ageing.
“The fact that that’s
not there anymore, like if I get sick or I’m ill means all I’ve got is that.
I’ve just got the flu ... It’s not that it’s my liver’s fricking packing up on
me or something.”
Being cured helped people feel ‘normal’ again. In
particular, they did not feel ‘dirty’ or ‘infectious’.
“I love not being infectious…That
for me has probably been the biggest thing – not having to feel guilty every
time I had a blood test done that I might infect somebody, going to the dentist
is nowhere near as stressful.”
“At my house, with
toothbrushes and razors and stuff, it’s been something that I’ve had to be
really, really vigilant with, with children in the house and with my partner…
It’s really nice to know that I don’t have that in me anymore, and there aren’t
those risks there of passing it on to anyone else.”
Many participants had acquired hepatitis C through injecting
drug use, something that some individuals still felt guilt and shame around
long after they had stopped injecting. Having hepatitis C had been an ongoing
marker of their history of drug use – breaking that connection was
transformative. A man who had been diagnosed in 2003 said:
“It’s like the last
mark… is now gone. All the rest is just memories that I don’t have to think
about.”
One woman spoke about no longer worrying about her
daughter’s friends finding out about it. However, not everyone agreed that this
history could so easily be erased:
“I still feel guilty
about it…about having used drugs when I was younger, about having contracted
the hepatitis C… It’s just a bit of a mental scar that I suppose I’m going to
carry for a long time.”
While many participants had not felt they had physical
symptoms before commencing treatment, some described experiencing improved
physical health as a result of being cured.
“I don’t know how much
of that is psychological. I don’t think it’s all psychological. I’m sure there
is a physical element … I have more energy, I am sleeping better, just a whole
range of things.”
For some, the physical effects of living with hepatitis C only
became apparent once they had been cured.
However, those who had significant
liver damage would continue to need to attend a clinic for regular monitoring.
They said this would be an ongoing reminder of the
virus.
Participants were keen to encourage other people with
hepatitis C to find out about treatment with DAAs.
“I have told a few
people and other people have asked me… I recommend it.”
“I would urge anybody
with hep C to very much be confident about getting onto this drug to cure
themselves.”
They said that it was important to distinguish DAAs from
interferon-based treatment, emphasising the reduced burden of side-effects and
DAAs being simpler to take.
However, stigma associated with having injected drugs
discouraged one interviewee from discussing his treatment more openly.
“One part of me wants
to sort of yell it at the top of my voice and say, look, this is an amazing,
miraculous cure out there. Please, anyone that’s got hep C, go and get involved
with it. But then the other part of me, sort of I suppose the conservative –
but… I still feel guilty about it.”
Another participant continued to inject drugs and worked as
a peer educator. While she often discussed her experience of treatment, she noted that many
injectors saw hepatitis C treatment as something to do after they finished
injecting drugs.
“I am finding that
just even talking to the community on the street, it’s just like - yeah, big
deal, there’s a treatment, but I’m not done with the life at the moment here,
you know. And they do see it as something to happen when they’ve done with
their using life.”
The authors conclude: "Future engagement strategies targeting people with hepatitis C who are not currently accessing DAA treatment need to use the lived experience of being cured, particularly the significant psychological impact." This should be promoted alongside the benefits to physical health, they say.