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


NZORD: Pharmac proposal for change - Read it and weep?

NZORD - the New Zealand Organisation for Rare Disorders

Hello everyone,

Should I cover the good news or the bad, for Rare Disease Day on Friday 28 February?

There’s lots of good things going on with awareness activities and fundraisers for various support groups, and good news stories about small but dedicated teams of researchers in New Zealand making steady progress in understanding some very difficult rare diseases.

Likewise, various clinical groups are working to improve care by networking to ensure more joined-up services for rare disease patients across the country, with improvements to paediatric palliative care probably the stand-out example within these new networks. Specialist labs and genetic technology are rapidly improving the chances that those with rare diseases will get an accurate diagnosis much sooner than has happened in the past, and screening programmes and advanced IVF technologies have significantly increased the number of couples who can avoid fatal or seriously disabling conditions in their next pregnancy.

So why the pessimism? Why even anger? Well, just one week before rare disease day, Pharmac produced its Proposal for Change in its decision criteria following a lengthy consultation process last year. NZORD had intended taking time to carefully analyse this document to see if any real and positive change was indicated. Our initial read said NO, but we didn’t want to rush our conclusions, and we have an offer we are still keen to take up to meet Pharmac and discuss the detail of this and other recent correspondence about their decision making responsibilities.

Our patience and careful steps forward were dealt a cruel blow when Pharmac’s chief executive provided his own brief but clear analysis in aStuff press article, emphasising that no substantive change was intended. There would be no shift in their approach to evaluation and decisions regarding treatments for rare (or orphan) diseases, despite clear indication from their consultation of widespread community and stakeholder support for such a change.

Pharmac are arrogantly fixed on the idea that they are right and we all simply need help to understand their decisions. Yet a range of commentators including the Ombudsman, academic and litigating lawyers, health economists, moral philosophers and clinicians, are saying they need to adjust their thinking and their decisions. In addition, these arguments which support NZORD’s and other patient advocates’ views, are now mainstream political thinking. All major NZ political parties other than the National party, now support an Orphan Drugs Access programme, such as that recently introduced in Scotland and reflecting such programmes in place in other parts of the world. Even Peter Dunne, who has been associate Health Minister for much of the past 14 years and a strong defender of Pharmac, is on record (Medicines NZ seminar, Auckland 9 October 2013) as supporting a separate fund so drugs for orphan diseases can be considered separately from drugs for common diseases.

Today’s announcement by Health Minister Tony Ryall of his retirement at the next election, naturally sought to claim kudos for many improvements in health care delivery. But he was noticeably silent on the 2008 pledge in the National Party’s election manifesto to improve access to highly specialised medicines. That promise has crumbled to dust as endless reviews and consultations have changed nothing in any substantial way for those with orphan diseases.

So it seems clear that Pharmac will continue ignoring the now overwhelming views of informed stakeholders on these matters, and bunker down in a decision process devoid of community values and without sound ethical justification, while ignoring the human rights and other responsibilities they have to address equity issues and reduce health disparities.

We conclude that the greatest threat right now to the health and well-being of New Zealanders with rare diseases is the health economist who lacks a moral compass, and especially those who regularly use double-speak and half-truths to defend and justify their position.

Regards, john

John Forman
Executive Director
NZ Organisation for Rare Disorders


© Scoop Media

Culture Headlines | Health Headlines | Education Headlines


University Of Canterbury: Henry VIII’s Divorce Lawyer’s Magna Carta On Display

The University of Canterbury is publicly displaying New Zealand’s oldest copy of the Magna Carta for the first time, just as a new connection it has with Henry VIII and Anne Boleyn has been discovered. More>>

Arts Festival: An Evening With Richard Dawkins

In a special one-off, New Zealand event at the Michael Fowler Centre, Dawkins will reflect on his eminent career as a scientist, and expand on the themes of inspiration, influence and ideas in his recent memoir, Brief Candle in the Dark: My Life in Science. More>>


Scoop Review Of Books: Worldly And Unworldly

"Being Magdalene" by Fleur Beale The situations shown in this youth novel are shocking, scary, and very moving as we experience Magdalene’s struggle to be a perfect girl as defined by the cruel and unreasonable leader of “The Children of the Faith”, as she moves reluctantly into young womanhood. More>>

Whistle Stop: Netball NZ To Implement New INF Rules

Netball New Zealand (NNZ) will implement the new Official Rules of Netball, as set down by the International Netball Federation (INF), from January 1, 2016. Key changes include the elimination of whistle following a goal, amendments to injury time and changes to setting a penalty. More>>


Scoop Review Of Books: Waiata Aroha

Vaughan Rapatahana on Chappy by Patricia Grace: With this eminently readable novel Patricia Grace returns to the full-length fiction stage after a hiatus of ten years. More>>

'Ithaca' At Q Theatre: Introducing NZ's World Class Cirque Troupe

NZ’s very own cirque troupe is set to become a household name with the premier of its adaptation of Homer’s Odyssey having secured a key season in Auckland. More>>

Music Awards: The Tuis Are Broody This Year

Topping off a sensationally eventful year both at home and internationally, Nelson born brother-sister duo Broods has taken home four Tuis from this year’s 50th annual Vodafone New Zealand Music Awards. More>>


Sport: Richie McCaw Retires From Rugby

Richie McCaw has today confirmed he is hanging up his boots and retiring from professional rugby. The 34-year-old All Blacks captain and most capped All Black of all time has drawn the curtain on his stunning international career which started in Dublin 14 years ago, almost to the day, and ended in London last month when he hoisted the Webb Ellis Cup aloft for the second time. More>>


Get More From Scoop



Search Scoop  
Powered by Vodafone
NZ independent news