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

ENDS

© Scoop Media

 
 
 
 
 
Culture Headlines | Health Headlines | Education Headlines

 

NZ on Air: More Funding For TV Captions To Increase Access

More funding for TV captions to increase access NZ On Air has increased funding to provide more captions and audio description on television programmes for the hearing and sight impaired. More>>

Music: So Laid Back Country China Album Release

On Friday night, So Laid Back Country China held a gig at Meow for the release of their new album With Knees of Honey in Goodbye Canyon. I briefly spoke with Harriet lead vocals, keyboard) and Michael (lead vocals, guitar) before the gig More>>

Art: Wellington Region Celebrates Matariki

Eight Wellington museums and galleries have joined forces to present a major programme of exhibitions and events to celebrate Matariki 2015, the Māori New Year. The Wellington Matariki Festival will host more than 60 free events and activities between Saturday ... More>>

Wellington: TEDxWellingtonWomen Speakers Unveiled

The lineup is announced today for the highly anticipated upcoming event TEDxWellingtonWomen. Speakers include local women and men who have lived extraordinary lives and have ideas worth spreading. More>>

Culture: RNZB Showcases NZ Artists With Two World Premieres

The Royal New Zealand Ballet’s mixed bill Salute - Remembering WW1 which opens on 22 May will showcase the talents of New Zealand artists working at the top of their field. More>>


Books: Witi Ihimaera To Address ‘State Of NZ Literature’at Festival

6 May 2015 MEDIA RELEASE Witi Ihimaera to Address ‘State of NZ Literature’ at Dunedin Writers and Readers Festival The New Zealand Book Council has chosen the 2015 Dunedin Writers and Readers Festival as the stage for its annual address, which ... More>>

Culture: Historic Māori Portraits Travel To The Czech Republic

Image credit: Gottfried Lindauer, Wahanui Reihana Te Huatare, oil on canvas, Auckland Art Gallery Toi o Tāmaki, gift of Mr H E Partridge, 1915 More>>

Art: Something Felt, Something Shared - Enjoy

Gabrielle Amodeo, Ruby Joy Eade, Clare McLean, Kalya Ward Curated by Emma Ng May 7 – 30, 2015 Opening: Wednesday May 6, 5.30pm Strange frequencies are channelled through personal narratives and poetic placeholders in Something felt, something ... More>>

Culture: Pukeahu Park ANZAC Day Commemoration 2015

Pukeahu Park ANZAC Day Commemoration 2015 Images from New Zealand Defence Force Click for big version A bugler plays The Last Post Click for big version A View from the top of the Carillion Click for big version Faces old and young Click for big ... More>>

Television: MediaWorks Announces Dancing With The Stars Hosts

MediaWorks and BBC Worldwide ANZ are delighted to announce host Dominic Bowden alongside co-host Sharyn Casey for the hit series Dancing with the Stars. More>>

Get More From Scoop

 
 

LATEST HEADLINES

 
 
 
 
Health
Search Scoop  
 
 
Powered by Vodafone
NZ independent news