Now I don’t have to strictly segregate my toothbrush, my shaving gear, and be conscious of blood all the time.”
In the year since she completed treatment to clear her system of the hepatitis C virus, Pam says the most significant changes have been psychological. “I had no future,” she says. “And now I have a life to look forward to and it is still unbelievable.”
Pam lived with hepatitis C for almost 20 years before being diagnosed. One of the first Australians to be successfully treated with the new drugs, she now says that “just knowing it’s gone,” has had an incredible effect. “You didn’t realise how much it sat in the back of your mind and what a burden it was. Plus the whole infectious thing and that fear of infecting your family, the people you most care about.”
Before treatment, Pam’s liver was badly damaged. At this time the new direct-acting antivirals (DAAs) were not on the Pharmaceutical Benefits Schedule (PBS) so her specialists recommended she be granted access to the expensive medications on compassionate grounds. After 24 weeks, Pam was cleared of hepatitis C.
Of her initial infection, she says “it was the ’70s” – a time when NSPs were unknown, injecting drug use was punished and sharing needles was rampant because equipment was difficult to source.
“We didn’t have disposable syringes and certainly there was no help and support you could seek at that time,” Pam says.
Later, Pam had four children and the growing weakness and fatigue she experienced was dismissed as normal for a busy parent. “The fatigue did get to me but then, I’ve got four children so what do you expect?”
In 1998 blood tests revealed her hepatitis C status. She had two unsuccessful rounds of the interferon/ribavirin treatment but in 2009 took part in one of the first Australian clinical trials of DAAs.
“The idea was to drop your viral load enough to return to interferon/ribavirin,” she says. “I did that but that was unsuccessful, too. Then they wanted me to do 72 weeks of treatment. Each round of treatment I had the side-effects like joint pain lingered, and each time these things just got worse. Things like my mouth being dry – little things that weren’t tragic but each time my body felt damaged. So I thought 72 weeks just seemed impossible.”
Anticipating a future overshadowed by a slow decline to death, Pam and her husband took a “farewell to the world” overseas trip.
The virus rebounded and she became so unwell she nearly died in hospital. It was then that doctors assessed her as qualifying for treatment on compassionate grounds – and her life took a new and wonderful turn.
Until recently, Jack had been living with hepatitis C for nearly 45 years. Now, he says, he is a happy man, having finished a course of the new direct-acting antiviral (DAA) treatments.
Jack completed the treatment about a month ago and is now hepatitis C-free. “I’ve got a young daughter, and now I don’t have to strictly segregate my toothbrush, my shaving gear, and be conscious of blood all the time. And my night sweats have gone, too. Oh yeah, I’m a happy man.”
When he contracted hepatitis C, the virus hadn’t even been formally identified. “I knew I had something,” he says. “I had an incredible tiredness, as well as night sweats and a mental fog.”
In the late 1980s, after a liver biopsy, Jack spent most of a year being treated with interferon. “It was horrible. It was a kick in the guts every day,” he says. “I was crawling around some days. My mother came and visited and she thought I was going to die.”
After completing the treatment, he felt better for a while, but symptoms soon returned and blood tests confirmed the treatment hadn’t worked.
Jack first learnt of DAA treatments from people who had travelled to China to buy the drugs directly. Then his partner told him the treatments had been released on the Pharmaceutical Benefits Scheme (PBS). “I couldn’t believe it,” Jack says. “It was just incredible.”
Even without a Health Care Card, Jack paid only $34 a month for the three-month course (those with a card pay $6.20). “You just had to take one of these pills a day,” he says. “That’s all you had to do.”
Jack did experience a few side-effects, some of them “a bit weird”, including itchy fingers and swollen earlobes – but it was a “breeze” compared with interferon.
– Gideon Warhaft