22 Jan 2019

Hep C drug to help thousands, but the disease is still stigmatised, advocates say

6:48 am on 22 January 2019

From February, the Hepatitis C drug Maviret will be funded by Pharmac which will help thousands of New Zealanders with genotype three of the virus, but it's taken years of hard work from advocates to make it possible.

Hepatis C virus

Photo: 123RF

They say more needs to be done to reach their goal of making New Zealand Hepatitis C free by 2025.

Currently just two drugs are funded, Viekira Pak for those with genotype one, and Harvoni for end stage liver disease involving all genotypes, but an estimated 24,000 others have been without funded treatment.

Hep C Action Aotearoa's Hazel Heal was first diagnosed with the virus in 1992.

"By 2015 when I was just about to sit my first year law exams, my time had run out, I had cirrhosis and I was on the edge of needing a liver transplant, so I couldn't wait for treatment.

"It was then I learnt the medication existed, but it would have cost me $268,000 US to buy the treatment I needed," Ms Heal said.

Looking at potentially selling her house to pay for medical attention, she decided to look for alternatives and found the generic version of the medication she needed.

"Identical medication came in the mail, it cost me about $3000 and I took that for 24 weeks and was cured and my liver has made a full recovery," she said.

She got the medication after contacting Australia-based doctor James Freeman, who has since spoken to other New Zealanders in a similar position with genotype-three hepatitis C.

Hazel Heal with Dr James Freeman and Tina Hill.

Hazel Heal and James Freeman. Photo: Supplied

"If you found yourself in the difficult situation of being towards the end of the disease and very sick, the alternatives are continuing to get sicker or look to source your own treatment, and certainly we've assisted several hundred New Zealanders access the generic versions of these treatments," he said.

But after years of campaigning and helping others like Ms Heal, who didn't qualify for medication available in New Zealand, Maviret is now going to be funded through Pharmac from 1 February.

Ms Heal said she and other advocates, some of which she has never met in person before, would be holding a celebration to mark the occasion.

"We are over the moon, that's why were pulling out the stops and all going to meet in Auckland, we can't let such a big victory pass without celebrating.

"There's 250 deaths estimated per year in New Zealand still of Hep C and those are all avoidable now," she said.

Fighting stigmatism

But Ms Heal said their work was not over yet and there was one barrier in the way of reaching their goal of making New Zealand hepatitis C free by 2025.

"Because it's so stigmatised, people don't ask for the tests, and doctors don't offer it because they think their patients may be insulted," she said.

And with thousands of New Zealanders still unaware they have the virus, Ms Heal's advice is to get checked.

To see what the symptoms are and what options are available you can visit the Hep C Action Aotearoa website.

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