Thousands of people living with Hepatitis C unaware a cure is in reach

Story originally published on Stuff.

A Hepatitis C survivor says she has been forced to do the government’s work to ensure others with the potentially life-threatening virus get access to “miracle” drugs.

Dunedin’s Hazel Heal credits the drugs with saving her life and completely restoring her liver, but is angry the government is not informing people about the virus and treatment options.

JOHN KIRK-ANDERSON/STUFF

At least 50,000 Kiwis are estimated to have chronic Hepatitis C, but only half of them realise they have the blood-borne virus that attacks the liver. About 200 people die each year from it.

Dunedin’s Hazel Heal says she is doing the government’s work to help thousands of people get testing and treatment for Hepatitis C.

From July 2016 a Pharmac-funded direct-acting antiviral (DAA) medication, Viekira Pak, has offered hope to more than half of those with the virus.

So far about 2500 people have received the treatment, but another 9000 people could benefit, according to Pharmac, the government drug-buying agency.

Ms Heal, a Hepatitis C survivor, gets a tattoo of a butterfly, the symbol of survivors, by Holger Mauersberger at The Sanctuary in Woolston, Christchurch.

The Viekira Pak drug company claims the medication has been clinically proven to cure more than 95 per cent of people who have been prescribed it.

In 2015, with her liver shutting down, Ms Heal sourced generic versions of the then unfunded and extremely expensive DAA drugs through an Australian venture, FixHepC.

Ms Heal said she had since become a “one woman NGO (non-governmental organisation)” for people diagnosed with Hepatitis C and slammed “lacklustre action” in spreading information about treatment options by the government as a major public health failure.

As Hepatitis C is a blood-borne virus, intravenous drug users and people who had unhygienic tattoos or piercings were more likely to have it.

“I’m reduced to doing this campaign myself because I don’t think you can expect clinical services … to be an advertising agency or run a publicity campaign because there’s 30-50,000 people who don’t know they’ve got it (Hepatitis C).”

From 2015, $1.9 million in Hepatitis C funding was re-directed from Hepatitis Foundation of New Zealand to district health boards (DHBs).

Ministry of Health group manager for service commissioning Clare Perry said the funding was for the “detection, management and treatment of Hepatitis C for the most at-risk populations”.

“Services were to increase diagnosis rates, better individualised care, improve patient related outcomes and ultimately to reduce liver related morbidity and mortality.”

Ms Heal said she had seen little evidence of the services: “If there has been any action it’s been well hidden.”

The 52-year-old law student has started work to set up a charity organisation to help reach those suffering with chronic Hepatitis C.

“If no one else will do it, I will.

“People are ringing me, asking for help and needing the information. [We have] people needing to get tested, showing up at the liver transplant unit who didn’t know they had Hep C.”

Ms Heal said she heard from many people trying to find a GP who could offer a test or write a prescription for generic drugs available through FixHepC. Pharmac does not fund cheaper generic medications.

“The difficulty for New Zealand GPs is they can say ‘Have a test’ and then they have to say to half of them, ‘I can’t help you’. It’s quite a difficult situation we put GPs in.”

She wanted the Government to set up an freephone number for people to get information about testing and treatment services in the community.

As Hepatitis C is a blood-borne virus, intravenous drug users and people who had unhygienic tattoos or piercings were more likely to have it.

The virus’ association with drug use had created a strong stigma, which Ms Heal said was another barrier to testing and treatment.

“Stigma is killing people with this silence everywhere – at the doctor’s surgery, in the workplace…everywhere.”

Ms Heal said she did not know how she contracted the virus, but said it could have been a childhood dental infection or piercings she got as a “punk rock girl”.

Symptoms of chronic Hepatitis C, including fatigue, depression and gastroenteritis, could take up to 10 years to surface.

While recently getting a large butterfly – the international sign for Hepatitis C survivors – tattooed on her forearm, Ms Heal encouraged anyone who felt old and tired to get tested.

“I’m doing this because this is a risk factor; people who got tattoos back in the day, people who had tattoos in prison, people who had piercings, so people should be tested – even if they feel great.”

– Stuff

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© The Hepatitis Foundation of New Zealand 2016