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

 

2015: Elton John Plans Wellington Show

After nine years, Elton John and his band will return to Westpac Stadium, Wellington for one spectacular concert! The November 21, 2015 concert will feature iconic hits and classic album tracks from throughout his incredible five-decade career... More>>

Book Awards: Jill Trevelyan's Story Of Peter McLeavey Is Book Of The Year

The story of Wellington art dealer Peter McLeavey and his gallery has won the prestigious New Zealand Post Book of the Year 2014 in a glittering ceremony in Wellington. More>>

ALSO:

Scoop Review Of Books: King Richard

Simon Nathan reviews 'Richard Seddon, King of God’s Own': My father grew up in Wellington during Seddon’s premiership... I can recall him standing under the Seddon statue in the grounds of parliament and telling me that Seddon had more backbone than Sid Holland and all his cabinet colleagues put together.. More>>

8 October: Miley Cyrus Bangerz Tour Coming To Auckland!

Dainty Group announced today that global superstar Miley Cyrus will bring her BANGERZ TOUR to New Zealand in October this year. This will be Miley’s first ever visit to New Zealand and there will only be one Auckland show before she takes her tour to Australia. More>>

ALSO:

Music: Lorde NZ Tour Confirmed In Four Major Cities!

In what will be her first ever New Zealand headline tour, Frontier Touring and Brent Eccles Entertainment are stoked to bring you four epic shows across the country! The all ages concerts take place late October/ early November in Christchurch, Dunedin, Wellington and Auckland. More>>

ALSO:

Scoop Review Of Books: Poor Economics

A review of and excerpt from Jonathan Boston and Simon Chapple’s Child Poverty in New Zealand. Review by Marlene Ware. More>>

Head Count: Highest Population Growth Since 2003

The country’s population grew by 67,800 people, or 1.5 percent, in the year to 30 June 2014. This came from natural increase (births minus deaths) of 29,500 and net migration (arrivals minus departures) of 38,300. New Zealand's estimated resident population was 4.51 million at 30 June 2014. More>>

Fun-Enhancement: Research To Ensure Even Game For Less Skilled Players

A University of Canterbury engineering PhD student is researching sports, such as table tennis, to ensure closer games for both better and less skilled players. More>>

Get More From Scoop

 
 

LATEST HEADLINES

 
 
 
 
Health
Search Scoop  
 
 
Powered by Vodafone
NZ independent news