Top End doctors, recovered sufferers overjoyed by hepatitis C funding changes set for March

Source: ABC News Author: Emilia Terzon

When Darwin grandmother Maria was diagnosed with Australia's most prevalent blood-borne virus — hepatitis C — in her early 50s, she "almost fell off the doctor's chair".

"You don't always appear to be sick and that's the scary thing about it," Maria told 105.7 ABC Darwin.

"I was super fit, going to the gym and bootcamping. When I was told that I had hepatitis C, I was stunned."

The shock quickly turned to devastation and depression, starting with a potentially life-threatening diagnosis by a doctor after she was sent for a liver scan in Melbourne.

"I just sat on the sidewalk outside a cafe and cried all morning," she said.

Maria then decided to undergo a six-month round of injections — the only affordable treatment available at the time — to eradicate the disease, and that is when things became truly unbearable.

"It's an experience I truly wouldn't wish on anyone. The side effects are so debilitating," she said.

Dr Steve Tong from Darwin's Menzies School of Health is one of many doctors in the Northern Territory that have seen the local effects of hepatitis C.

If left untreated, a quarter of those diagnosed will eventually develop liver cirrhosis or liver cancer with potentially deadly results.

But the good news is that the virus is curable, Dr Tong told 105.7 ABC Darwin.

"The issues in the past have been that treatment has been so terrible due to side effects that it's hard to get people onto it," he said.

Maria's side effects from the injections included fatigue, nausea, loss of memory, lack of appetite and taste, a "fuzzy-brained" feeling, depression and even hair loss.

"I had quite long hair and then my hair started falling out and I had to cut it short," she said.

"It was one of those side effects that you get told about in passing but then they do actually happen, and for somebody like me who is a bit vain, losing my hair was so upsetting."

Revolutionary new oral treatment options

But now there is more hope for sufferers, following a Federal Government announcement last month that $1 billion will be put towards funding revolutionary yet previously unaffordable oral treatment options.

If this treatment had been available for me, I'd have been able to cope much better.

Maria, Darwin grandmother

From March, the costs for four types of treatment will be reduced from $100,000 to $37.70, or $6.10 for concessional patients, after they are added to the Pharmaceutical Benefits Scheme (PBS).

"They're amazing drugs. They're all oral therapy, so they're tablets, and taking them for 12 weeks can cure 95 per cent of people," Dr Tong said.

"The last two years we've seen these trials come out talking about how amazing these drugs are. We've been waiting and waiting and waiting and telling patients not to go onto the old treatment and wait for the new."

'I'm still paranoid about blood'

Around 700 people die each year from complications associated with hepatitis C, with it more prevalent among people with tattoos, sex workers, people who inject or have injected drugs, and Indigenous Australians.

Maria said she believed she contracted it during blood transfusions in the 1980s, with the virus taking three decades to physically present.

She is now fighting fit and feeling "back in the real world again" following her "debilitating" treatment.

She said she wished she had access to oral treatment back in 2013.

"If this treatment had been available for me, I'd have been able to cope much better," she said.

"I have no side effects today but I'm still paranoid about blood. I think twice about manicures, facial treatments and I don't share toothbrushes with my grandchildren."