News Video | Policy | GPs | Hospitals | Medical | Mental Health | Welfare | Search


Political parties back calls for a rare diseases policy

Political parties back calls for a rare diseases policy

It is time for some optimism. There is now strong political support for our call for a government policy and action plan for rare disorders.

In response to our survey of the seven political parties in Parliament, the Greens, Labour, Mana and NZ First parties all offer positive support for the development of a government policy and action plan for rare disorders. Support is also indicated by United Future and the Maori party, but in less clear terms. National says this issue will be addressed in its health policy release in the next few weeks, but does not indicate what their stance will be.

Click here for the detailed responses from all the political parties to our manifesto questions.

This is a significant advance for the interests of tens of thousands of New Zealanders affected by a rare disorder.

When NZORD was being formed 15 years ago, we were like voices in the wilderness, with many people suggesting we were unlikely ever to get the attention to rare disorders that we were seeking. Now our issues and concerns are mainstream political issues for most parties, as well as being supported by most major stakeholders in the health and disability sector.

Our questions to the parties outlined six issues for priority action under the action plan. We are pleased to note we have positive responses from all parties to our call for improved investment in diagnostic capacity to ensure no undue delays in diagnosing rare diseases, and strong support for improved clinical care access and coordination across District Health Board boundaries to reduce the disadvantages often faced by rare disease patients and their families. All parties have also supported a review of respite care provision to remove barriers to its uptake and improve options for family carers to have some time for themselves.

Disappointingly, the questions about folic acid fortification to prevent neural tube defects, the need for an orphan drugs access policy, and problems with the carer payments policy, did not receive a positive response from the National party. NZORD has identified significant policy failures in those three areas and this was an opportunity for them to address these issues constructively.

The responses from United Future to the action point on folic acid fortification shows a surprisingly poor understanding of the issues and a disappointingly weak response.

But we are very pleased that our advocacy has resulted in widespread political support from most parties on most of the issues we presented to them. The Greens, Labour, Mana, Maori and NZ First parties have all provided strong support for most of our agenda items, while National and United Future have kicked for touch on some of these important issues.


© Scoop Media

Culture Headlines | Health Headlines | Education Headlines


Howard Davis: Review - A Girl Named Mo

Moana Ete brought her three-piece band A Girl Named Mo to Wellington's intimate and iconic Bats Theatre last week for a five-night residency. Each show was recorded and filmed live for the release of her debut album 'Platonic/Romantic' on Loop records later this year. More>>

For The Birds: Who Will Be Crowned Bird Of The Year?

The competition involves well-known and enthusiastic New Zealanders acting as ‘campaign managers’ for their favourite birds with many going to great lengths to get New Zealanders to vote for their chosen bird... More>>


  • Image Out-Link - Giselle Clarkson on Twitter
  • Gordon Campbell: On Bob Dylan's Nobel (And The Surplus)

    So Bob Dylan has just won the Nobel Prize for… Literature? Wow. I’d be just as happy if he’d won for his work on particle physics (“One Grain of Sand”, “Simple Twist of Fate”) or got the Economics prize for his work on the theory of contracting (“Don’t Think Twice Its Alright”) ... More>>


    Scoop Review Of Books: Whose Goat Was That?

    Mysterious Mysteries of Aro Valley is a sharp, satirical and sometimes downright scary romp through and around that valley in ways that made me question the realities of the places I thought I knew so well. More>>


    NZ On Air TV Funding: More Comedy Comes Out Of The Shadows

    Paranormal Event Response Unit is a series conceived by Jemaine Clement and Taika Waititi as a TV spin-off from their highly acclaimed feature film What We Do In The Shadows. More>>


    Mars News: Winners Announced For The 2016 Apra Silver Scroll Awards

    Wellington singer-songwriter and internationally acclaimed musician Thomas Oliver has won the 2016 APRA Silver Scroll Award with his captivating love song ‘If I Move To Mars’. More>>


    Get More From Scoop



    Search Scoop  
    Powered by Vodafone
    NZ independent news