Most Canberrans living with hepatitis C have not accessed cure, experts say

There has been a cure for hepatitis C since 2016, but the latest figures indicate that more than half of those Canberrans with the condition have not started using it.

Hepatitis is defined as an illness that inflames and damages the liver, and comes in five different forms.

Australia has committed to eradicating two of those, types C and B, by 2030. 

While there is no cure for type B, there is an effective vaccine.

Currently, the focus is on driving awareness of the curative treatment for type C, with former sufferers saying many might be wary to access it due to the memory of former treatments.

Sufferers wary of new treatment

Sarah Ahmed, executive director of Hepatitis ACT, said she believed many of those who had had Hepatitis C for some time might be hesitant about getting the cure, due to the legacy of past treatments.

“Half of people in Canberra who have been diagnosed have had treatment and cured the virus; we’re trying to get the word out to the other half,” Ms Ahmed.

“The traditional cure for hepatitis C was something called Interferon.

“From what I’ve heard, it was a very taxing treatment regime.”

Karen, a Canberra resident who used to suffer from type C, said Interferon side effects were almost unbearable.

“It just made you feel dreadful, it interfered with your day-to-day tasks and you became quite ill,” she said.

She said many people with hepatitis C chose not to get treatment.

“[You] had to weigh up ‘I’ve got kids to get to school’ or ‘I’ve got to get to work myself and I can’t afford to take time off’,” she said.

Since starting to take the new treatment, which comes in tablet form, Karen said she had not suffered any adverse side effects.

She encouraged people to take advantage of a subsidy offered by the ACT government.

“It’s quite an expensive treatment, so being able to access that is one of the biggest plusses there is,” she said.

More needs to be done to raise awareness

Advocates are hoping to use World Hepatitis Day to spark greater investment in awareness campaigns about the cures and treatments available for hepatitis C.

Karen said it would have taken her much longer to get the cure if she had not worked at a drug and alcohol rehabilitation centre in Canberra.

She said from her perspective, there was little marketing done to reach those who did not have her level of access to information and care.

Mrs Ahmed said  it was important to hear from people like Karen about their experiences, to reassure sufferers they would benefit from the treatment.

“They then go tell their friends and families … and let them know that ‘hey, I’ve gone through this treatment and it’s not bad, and I cured it in eight to 12 weeks,” said Ms Ahmed.

But she said more needed to be done to cut through.

“If we have sustained investment in the sector in community based programs … we could well be one of the first nations in the world to eliminate hepatitis B or hepatitis C,” she said.

She also urged those with hepatitis B to seek treatment.

Less than one in five of those living with the illness were receiving care.

Ms Ahmed said people should not think treatment was pointless, just because there was no cure.

“You can get treatment to reduce the side effects on your liver, to stop lasting damage on your liver, to stop it from becoming liver cancer,” she said.

“And people are working on developing a cure, so we never know, we might have a cure in the next couple of years.”

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