Reversal on Govt pledge stuns charity

The country’s biggest charity helping patients dealing with rare disorders has slammed the Government for reneging on a pre-election pledge to put $20 million towards their cause.

The Organisation for Rare Disorders says it is stunned a pledge to set up a separate fund so rare-disease patients could access life-saving medicines will not go ahead.

Chief executive Collette Bromhead said two Labour MPs last week told the organisation the funding will not be part of this year’s Budget.

“The decision to cancel the fund for medicines is a complete U-turn by the Government and has been done without any consultation with the rare-disease community,” she said.

“It leaves these vulnerable patients with no way to access the essential medicines that could extend their life and provide them with a better quality of living.”

During the election David Clark, now the Health Minister, said if Labour became the Government it would give $20m to help patients with rare diseases over four years.

He told Newstalk ZB that Labour made no specific commitment in terms of the coalition agreement when the Government was formed, but he had taken it upon himself to commit to coming up with a solution.

“I have now got assurance from Pharmac that it is going to continue with [a fund it had set up] so there will be funding available.

“The way in which that fund is set up is a matter for policy advisers to best advise how we get the best value for money for those suffering from rare disorders.”

— Vaimoana Tapaleao