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


6-11 October: New Zealand Improvisation Festival Hits Wellington

Wellingtonians will have a wide selection of improv to feast on with a jam packed programme containing 22 shows, three companies from Australia, two companies from Auckland, one from Nelson, one from Christchurch and seven from Wellington. More>>


Bird Of The Year: New Zealanders Asked To Vote For Their Favourite Native Bird

Te Radar, David Farrier, Heather du-Plessis Allan and Duncan Garner are just some of the New Zealanders championing their favourite native bird in Forest & Bird’s annual Bird of the Year competition, which kicks off today.. More>>


Werewolf Film: It Follows - Panic In Detroit

Philip Matthews: When you heard last month that Wes Craven had died and you wanted to pay homage, you could have sat down with any one of five of his films that helped reinvent American horror at least three times over three decades... Or you could just have watched one of the greatest recent horror films that would probably not exist without Craven. More>>


Werewolf Music: Searching For The White Wail - On Art Pepper, etc

If the word ‘hipster’ means anything – which it arguably doesn’t – it seems to be more of an impulse than a condition. One always headed for the margins, and away from the white-bred, white-bread mainstream... More>>


Scoop Review Of Books: Leonardo da Vinci - The Graphic Work

The breadth of da Vinci’s work is incredible: from animals to weaponry, architecture to fabric, maps to botany. The works have been divided into themes such as Proportion Drawings, Anatomical Drawings and Drawings of Maps and Plans. Each section begins with a short essay. More>>

Scoop Review Of Books: James Hector: Explorer, Scientist, Leader

Publication of this comprehensive 274-page account of the life and work of James Hector by the Geoscience Society of New Zealand marks the 150th anniversary of James Hector’s appointment as New Zealand’s first government scientist. More>>

On Shoestrings And Phones: Rossellini And Contemporary Film

Howard Davis: Roberto Rossellini's Neo-Realist Rome, Open City provides some fascinating technical parallels to Tangerine, an equally revolutionary Independent movie made exactly seventy years later. More>>

Get More From Scoop



Search Scoop  
Powered by Vodafone
NZ independent news