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A charity dealing with rare diseases has accused the government of breaking an election-spending promise.
The NZ Organisation for Rare Disorders (NZORD) is the country’s biggest charity for rare diseases.
It says, before the election, Labour made a multi-million dollar pledge to treat rare diseases.
NZORD says the $20 million promise was to allow rare disease patients to access life-saving medicines.
It would have been paid over four years.
The government denies ever promising the fund, while saying money would still be available for people suffering rare diseases.
NZORD chief executive, Dr Collette Bromhead, met two Labour MPs last week.
She says they told her that the fund won’t be part of the upcoming Budget.
The NZ Herald reports that the pledge came from Labour’s then health spokesman, David Clark.
Media reported it at the time.
Clark is now the minister of health.
Dr Bromhead says the cancelled fund is a complete U-turn by the government.
“It has been done without any consultation with the rare disease community,” she says.
“It leaves these vulnerable patients with no way to access the essential medicines that could extend their life…”
No promises made
But Health Minister Clark denies that he made specific funding promises to the NZORD.
He told Newstalk ZB that Labour had made no specific commitment in the coalition agreement.
He says he will find a solution.
“It was something I was concerned about in Opposition and I was concerned that Pharmac might not continue with the fund that it had set up,” he says.
Pharmac has approved four medicines for rare diseases in the last few years.
Its programme makes $5m available per year, for five years, to fund rare disorder medicines.
Clarks says Pharmac has assured him that it will continue with that fund.
There are around 377,000 patients in New Zealand with a rare or life-threatening disease.
NZORD has been helping them for 25 years.
Dr Bromhead says officials now say her organisation’s government contract is under review.
She calls it a “double blow”.
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