22 February 2018

Health Minister backtracks on rare disease fund

The Government has let down hundreds of thousands of patients and families in New Zealand who live with rare diseases after backtracking on its promise to create a $20 million rare disease fund, National Party Associate Health Spokesperson Dr Shane Reti says.

“After pledging $20 million for a rare disease fund during the election, Health Minister David Clark has broken his promise, devastating those who would have benefitted from the fund,” Dr Reti says.

“Labour’s election manifesto outlined that they would ‘establish a specific fund for medicines to treat rare diseases’. But now that Labour are backtracking on their promise, Labour MPs met with the Chief Executive of the New Zealand Organisation for Rare Disorders (NZORD), Dr Collette Bromhead, to tell her that the fund is ‘off the table’.

“Yesterday David Clark told the Herald that he has ‘made a personal commitment to ensuring that we find money for rare disorders’, but today he is saying is that he ‘hoped to ensure’ those with rare diseases had a better future.

“Not only have the Government reneged on this fund, but they are also reviewing the contract for the NZORD, which is of serious concern to patients and their families who will no longer have access to the essential services that the organisation provides.

“Whether or not Pharmac continues their normal processes of funding treatments for rare disorders is irrelevant. The Government needs to realise that it can’t promise increases in funding for health care and then cancel them – this affects people’s lives and livelihoods.”

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