Gordon Campbell | Parliament TV | Parliament Today | Video | Questions Of the Day | Search


Health Minister backtracks on rare disease fund

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.”


© Scoop Media

Parliament Headlines | Politics Headlines | Regional Headlines

Gordon Campbell: On Why France Could Become Our Closest Ally In Europe

As PM Jacinda Ardern returns from a triumphant tour to Britain and the capitals of Europe, her officials have probably begun to assess what the more substantive gains from the trip might have been. Most of the chatter has been about potential trade deals – so lets just assume for the moment that bilateral trade deals between big and small countries are a good thing, despite the perils they pose to the smaller party. Currently, Britain is so involved with its Brexit nightmare that there seems little prospect of any substantive early progress on an FTA with Britain. In any case, New Zealand should be wary of being the first cab off that particular rank. ... More>>


HiveMind: Fair Enough? How Should New Zealanders Be Taxed?

Have Your Say - Scoop and PEP invite you to share your issues, ideas and perspectives on the NZ tax system with other New Zealanders using Scoop’s HiveMind tool. This Tax HiveMind is intended to complement and feed into the review being run by the Government-appointed Tax Working Group (TWG), which is looking at the fairness, balance and structure of the tax system with a 10-year time horizon. More>>


Gordon Campbell: On Thompson + Clark & Russia’s World Cup

Daily, the coalition government keeps running into examples of the toxic legacy left behind by National – and just as regularly, even the simple fixes are proving stubbornly difficult to enact. Take the case of the security firm Thompson + Clark ... More>>


Gordon Campbell: On The GCSB’s Security Hang-Up With Russia

So our GCSB has chimed in, alongside its British, Australian and US allies, with warnings about a “fresh wave” of Russian cyber attacks, although the warning has been curiously framed. More>>


PM's Europe Trip: CHOGM & Bilateral Meetings

Prime Minister Jacinda Ardern is in Europe for the Commonwealth Heads of Government Meeting (CHOGM) in London and meetings with counterparts in Paris and Berlin. More>>


Addressing Climate Change: No New Offshore Exploration Permits

The Coalition Government is taking an important step to address climate change and create a clean, green and sustainable future for New Zealand, Prime Minister Jacinda Ardern announced today. More>>


Road Safety Summit: Actions To Improve Identified

The Local Government Road Safety Summit held last week identified actions that will lead to lasting changes to road safety in New Zealand, says Associate Transport Minister Julie Anne Genter. More>>





Featured InfoPages