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

 


NZORD Newsletter 2013 #3 -- 12 April 2013

NZORD - the New Zealand Organisation for Rare Disorders

In this issue:
1 – Rare Disease Day seminar focussed on medicine access for orphan diseases.
2 – Scottish government gets the message and sets up an orphan drugs access fund.
3 – Ombudsman’s report on exceptional circumstances complaint is delayed.
4 – Carer payments decision from government is also delayed.
5 – Recommended reading: Bad Science, by Ben Goldacre – and hear him speak in NZ next month.
6 – Access to Medicines coalition has been revived.
***********************************************************************************************

1 – Rare Disease Day seminar focussed on medicine access for orphan diseases.
Video clips from our seminar on problems of access to orphan drugs, are now available in NZORD’s YouTube channel. We have 11 clips there, including Greg Coyle’s academic analysis of Pharmac’s exceptional circumstances scheme, and their failings regarding their obligations to those on the margins.

2 – Scottish government gets the message and sets up an orphan drugs access fund.
As we struggle to be heard with the problems here in NZ, the Scottish government has responded to a report on this very same issue and set aside a special fund of £21 Million, to ensure equitable access for rare disease patients in that country. Read the news item from the Scottish government.

3 – Ombudsman’s report on exceptional circumstances complaint is delayed.
The much awaited opinion from the Ombudsman on Pharmac’s management of the new exceptional circumstances scheme, has been delayed as a result of more questions being raised during the course of the investigation. We expect the decision to be available mid to late April. It is very keenly awaited.

4 – Carer payments decision from government is also delayed.
An expected February announcement from government regarding payments to family carers has been delayed until May. This appears to coincide with budget announcements and perhaps may be cause for optimism that this long outstanding issue will be resolved at last. But we will not hold our breath.

5 – Recommended reading: Bad Science, by Ben Goldacre – and hear him speak in NZ next month.
This book is an absolute gem, and a must-read for patient advocates and health professionals alike. Thoroughly readable and hard to put down, it explains so much about health science and evidence, in a very accessible way. Above all, it should be mandatory reading for all journalists, none of whom should be permitted to write another story on health science until they have studied this book in detail. Buy it on Amazon.com, or at least read the summary of chapters in Wikipedia.

Also, hear Ben Goldacre at talks he will give in Auckland, Wellington and Christchurch from 18 to 21 May 2013. Details are on the website of the Royal Society of New Zealand.

6 – Access to Medicines coalition has been revived.
This coalition, which contributed significantly from 2005 to the development of the NZ medicine strategy and to subsequent policy work, has awoken from a recent hiatus and held its first working party meeting of 2013 to review the mission and objectives. Its work will focus on the role of consumer involvement in medicines decisions, full implementation of the medicine strategy, increased allocation of funds for medicines, and an orphan drugs access programme.

© Scoop Media

 
 
 
 
 
Culture Headlines | Health Headlines | Education Headlines

 

August 4: Centenary Of New Zealand Entering The First World War

PM John Key: I move, that this House recognise that on the 4th of August 2014, we will mark the centenary of New Zealand entering the First World War... More>>

ALSO:

Cyclists Net First NZ Gold

New Zealand won a gold meal and two bronzes on the first day of the Commonwealth Games. There was joy and heartbreak in an incredibly full day of sport. Here's how the New Zealanders fared. More>>

Cap Bocage: Anti-Mining Campaign Doco Debuts At NZ Film Festival

Playing at this year’s New Zealand International Film Festival, Cap Bocage is a close-up exploration of the forces that came into play when environmental issues and indigenous rights became intertwined in New Caledonia ... More>>

Film Fest:

More Film:

Sharon Ellis Review: A View From The Bridge

Arthur Miller’s A View From the Bridge is Circa’s latest big production, it opened on Saturday 19 July and it is a stunning triumph. More>>

Māori Language Week: He Karanga Kia Kaha Ake Te Tīhau Ki Te Reo Māori

The Māori Language Commission wishes to see social media swamped with Māori language tweets and messages for Te Wiki o te Reo Māori using the hashtag #tekupu. More>>

ALSO:

Book Vote: Kiwis Prefer Young Adult & Classics

To compile their Top 100 List for 2014, Whitcoulls again asked New Zealanders to vote for their favourite books and authors. And while classic novels continue to appeal to Kiwi readers, 2014 marks a significant new trend – the increasing popularity of novels for young adults. More>>

ALSO:

Five NZ Cities: Bill Bailey Back To The Southern Hemisphere

The gap between how we imagine our lives to be and how they really are is the subject of Bill’s new show Limboland. With his trademark intelligence and sharp wit, he tells tales of finding himself in this halfway place. More>>

Scoop Review Of Books: Book Television Is Coming

Carole Beu of The Women’s Bookshop in Auckland, Graham Beattie of The Book Blog and producer Deb Faith of FaceTV have raised enough money via crowd funding at Boosted – just under $7,000 so far – for 12 episodes, which begin production in September, and will be on screen later that month. More>>

Get More From Scoop

 
 

LATEST HEADLINES

 
 
 
 
Health
Search Scoop  
 
 
Powered by Vodafone
NZ independent news