Hep C centre’s funding loss appals

Hazel Heal
Hazel Heal
The Hepatitis C Resource Centre Otago faces an uncertain future after a loss of Ministry of Health funding, just as publicity about an offshore ‘‘buyers' club'' has created a stir among sufferers of the disease.

Centre co-ordinator Allison Beck said the Dunedin centre lost about $80,000 annual funding at the end of last year, but cash reserves - and an understanding landlord - meant it could stay open for about a year.

The centre's plight has emerged as hepatitis C is in the spotlight because of Dunedin law student Hazel Heal's ‘‘buyers' club'' route to obtain new-generation drugs from overseas that cure the harmful virus in almost all cases.

Contacted yesterday, Ms Heal said she was dealing with a flood of inquiries from the media and hepatitis C sufferers after her story was published in the Otago Daily Times late last year.

This was not the time to slash advocacy services, Ms Heal said.

The resource centre could help people negotiate the overseas buying route, as well as advocate to have the up-to-date drugs funded in New Zealand.

‘‘I'm appalled ... just as there's an opportunity to clear this virus from the community.''

‘‘It's going to create an influx of people seeking and needing services because there hasn't been an answer until now.

‘‘More than we've ever needed resource centres, we need them, literally today.''

For hepatitis C sufferers, the drugs were the equivalent of the discovery of penicillin, and the Government was ‘‘behind the times''.

‘‘I have been in contact with people from all over the country. I'm aware of, in the Otago Southland area, at least 10 people starting [the] treatment very soon.''

The patients were saving the health system millions of dollars, in the Southern District Health Board area alone, by securing the new-generation treatment, she said.

Last year, Ms Heal was on the verge of needing a liver transplant, but now the virus was all but undetectable in blood tests.

With a prescription from a Tasmanian GP, Ms Heal bought the drugs through the buyers' club in Australia for $3800, when in New Zealand they would have cost $84,000.

The drugs are sourced from China and India, but recently the Australian Government announced a $1billion investment in the drugs to help Australian sufferers.

A Pharmac response to the ODT last year showed funding for the drugs was a low priority.

Ms Beck said Ms Heal should not have to assume all the responsibility for what was becoming a groundswell of demand. The centre could help patients safely navigate the drug-buying route.

‘‘Let's give Hazel a bit of a breather, because her phone's been off the hook.''

The centre had 200 patients on its books. It worked with the gastroenterology team at Dunedin Hospital to assist patients.

It worked with patients to negotiate the diagnosis process, specialist appointments, and support from Work and Income.

It supported patients through the DHB treatment, pegylated interferon, which was highly stressful and drawn-out.

The interferon treatment had ‘‘brutal'' side effects and was not overly effective.

Ms Beck believed the stigma and misunderstanding around hepatitis C affected how services were funded.

The virus was spread by blood-to-blood contact and transmission could happen in myriad ways.

The Ministry of Health contract was held by the Hepatitis C Trust Te Waipounamu, which covered the services in Christchurch and Otago.

The Ministry of Health has ordered the group of five South Island health boards known as the South Island Alliance to formulate a plan for hepatitis C - but the funding the ministry used to pay for services will not be following.

South Island Alliance general manager Jan Barber said the plan was in the early stages and the first step would be understanding the number of people affected and what services were being offered.

The ministry issued a statement in response to a query about the funding cut.

‘‘The Ministry of Health is taking steps to streamline and consolidate its investment in national hepatitis C services.

‘‘People with hepatitis C will continue to receive help, advice and support through their GP, or community health provider, and the Alliance managed programme.''

eileen.goodwin@odt.co.nz

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