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

 
Scoop Review Of Books: No Pretence. No Bullshit. Fine Poem.

John Dickson doesn’t publish much; never has. Indeed, this new collection is his first such in 18 years. As he wryly and dryly states,

I’ve published two slim volumes, and spent all
My time working on the next.
(from Wasp p.67) More>>

Scoop Review of Books: Extraordinary Anywhere: Essays On Place From Aotearoa NZ

The New Zealand landscape undoubtedly is very beautiful, but so is the British one, and my attachment to this country is much more about some particular places, and the memories and emotions that in them combine, than it is about the landscape as a whole. More>>

Canonisation Fodder: Suzanne Aubert Declared ‘Venerable’

Suzanne Aubert, the founder of the Sisters of Compassion New Zealand’s home grown order of Sisters, has been declared ‘venerable’, a major milestone on the path to sainthood in the Catholic Church. More>>

“I Have Not Performed Well Enough”: Ernie Merrick Leaving Wellington Phoenix

Ernie Merrick has stepped down from his position as Wellington Phoenix FC Head Coach. The club would like to thank Ernie for his contribution to Wellington Phoenix and wish him all the best in his future endeavours. More>>

Ray Columbus: NZ Music Icon Passes Away

60s New Zealand music Icon Ray Columbus has passed away peacefully at his home north of Auckland... Ray Columbus enjoyed more than three decades at the top of NZ entertainment as a singer, songwriter, bandleader, music manager and TV star. More>>

Review: Bernard Herrmann's Scores For 'Vertigo' & 'Psycho'

Howard Davis: The NZSO's adventurousness was richly-rewarded, as the deeply appreciative Wellington audience was given the opportunity not only to see a couple of Alfred Hitchcock's greatest films, but also to hear fine renditions of two of Bernard Herrmann's most accomplished film scores. More>>

ALSO:

Gordon Campbell: On Leonard Cohen

If Bob Dylan owned the 1960s, Leonard Cohen was an inescapable presence during the early 1970s period, pre-disco and pre-punk. More>>

ALSO:

Scoop Review Of Books: Pick And Camera

Through the eyes of a miner – the photography of Joseph Divis: The occupations of miner and photographer are seldom combined. The conjunction must have been very rare indeed in the era before hand-held cameras, high-speed film and flashlights More>>

Get More From Scoop

 
 

LATEST HEADLINES

 
 
 
 
Health
Search Scoop  
 
 
Powered by Vodafone
NZ independent news