Hepatitis C is now a curable disease for the vast majority of people.
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.
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.
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.
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, Heal sourced generic versions of the then unfunded and extremely expensive DAA drugs through an Australian venture, FixHepC.
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.
“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.”
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.”
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.
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