Nearly 250,000 Australians with Hepatitis C hope new drugs will be approved by the Pharmaceutical Benefits Scheme (PBS).
Current medication can require 6-12 months of treatment and for many patients causes debilitating side effects like nausea, hair loss and depression.
Hepatitis Queensland spokeswoman Jodie Walton said while the available drugs had an 80 per cent cure rate, the emotional and physical cost was often too high. She said the stigma associated with Hepatitis C meant many sufferers were reluctant to tell their family or work colleagues they were infected. But she said new drugs from Europe and the US were providing hope.
"The medications we're seeing approved overseas now are around 12 weeks on treatment and have very little side effects," Ms Walton said. But they cost between $80,000 and $100,000 - well beyond the means of many people with the illness.
"Some people are at that stage where they're looking at potentially moving onto more advanced liver disease and they're sitting there weighing it up and saying how much is my life worth, and trying to mortgage their house or trying to buy that medication," she said.
The Pharmaceutical Benefits Advisory Committee (PBAC) last week considered five drugs for the government-subsidised PBS.
Their recommendations are expected in six weeks.
Baby boomers may not know they are living with Hepatitis C
In 2013, 630 people died from Hepatitis C complications in Australia and nearly 1,000 more progressed to either liver cancer or end stage liver disease. About 230,000 Australians have the disease which is passed on through infected blood.
Although it is prevalent in marginalised communities, it is also common among baby boomers, many of whom may not know they have the illness.
"Often we've found the baby boomer generation is a really big population affected by viral hepatitis and it might be that people have experimented with drugs back in the 60s or 70s [and] haven't even thought about it since," Ms Walton said. "Overseas everyone who's a baby boomer in the US is being tested for hepatitis C, it's that common. But in Australia we haven't gone down that track yet."
Nurse Morag Goodinson found out she had Hepatits C only by accident four years ago. She never considered herself at risk and was taken aback by the news. She said she had spent years caring for others with Hep C and was aware there were treatments, but had no idea how brutal the side effects would be.
"I was really very, very sick and I was anaemic, I needed a blood transfusion, I lost hair, I lost weight, I became quite depressed. It was really an awful experience to be honest," she said.
On top of that, the treatment did not work. Ms Goodinson said she was desperate for the new drugs to be PBS approved and even considered travelling to India to access the medication cheaper. "For me personally it's my only hope of getting cured for this illness because the treatment I had was unsuccessful," she said.
Australian Hepatitis C community 'hanging out for this'
"Karen", who did not want to be identified, has had the blood-borne virus for 30 years. She said the stigma associated with it kept many from speaking out. "For my family, the impact has been horrific," she said.
"There's days when I'm just so ill, they're scared. They think I'm dying." Karen said she had tried current treatments but had to withdrew because of the severe side effects. "By the 10th week I implored my psychiatrist to put me in a psychiatric unit where I was for a week," she said, describing the constant agitation she felt. "For someone like me to have my life back, to be happy again, to not be anxious and depressed to not be in constant pain ... gosh my family would rejoice, my sons would be so happy.
"Everyone in the Hepatitis C community are hanging out for this. "This is their lives. They may die. It's as simple as that."
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