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

 


Serious flaws in rare disorders medicine fund proposal


Serious flaws in rare disorders medicine fund proposal

Patient advocates are rallying support for submissions to Pharmac about the U-turn they have made on medicine funding for ultra-rare disorders. After repeated refusal to fund novel and expensive treatments for disorders that affect mostly just a handful of cases in New Zealand, Pharmac have announced a special $5 Million fund so they do get a chance of being funded here.

“That’s one great step forward”, says executive director of the NZ Organisation for Rare Disorders, John Forman, “but it is a long way from a serious solution to lack of access to these vital medicines”.

NZORD says the initial proposal from Pharmac suggested that the woefully inadequate budget was the major problem that would make it extremely difficult to get fair access across 7 diseases and estimated 85 patients needing treatment. “There needs to be $20 to $25 million per year invested in this area, rather than just $5 million, but we were still keen to work with Pharmac to try and ensure the most equitable distribution of the limited funds across these patient groups,” says Forman.

“However the formal consultation document shows serious flaws in the detail of the fund, which makes it even more unlikely that any of the patients will get a fair shot at treatment. These patients face triple-jeopardy in the way Pharmac has structured the criteria for the fund.”

“The first problem is the restrictive rules proposed by Pharmac, setting a higher efficacy threshold for these treatments for ultra-rare diseases, than is expected for medicines for common diseases. Secondly, Pharmac’s special committee for rare disorders has already signalled it will resist any acceptance of weaker evidence for them, even though this is invariably the case for such rare conditions. The third problem is how the paper makes it clear there will still be comparison of costs with medicines for common diseases, despite the obvious higher unit cost of development, and widespread acceptance in other jurisdictions that such treatments will not meet standard cost-effectiveness comparisons.” says Forman.

NZORD now suspects strongly that this system has been set up to fail, as reflected in the earlier assessment that the proposal was more likely a device to dampen debate over the election period, than a serious attempt to bring in an orphan drugs access programme.

NZORD is working with support groups for Muscular Dystrophy, Cystic Fibrosis, Lysosomal diseases, and Paroxysmal Nocturnal Haemoglobinuria, in an attempt to obtain subsidy of 8 new medicines for about 85 NZ patients who are currently left untreated.

Submissions on Pharmac’s consultation document close on Friday 25th July.


© Scoop Media

 
 
 
 
 
Culture Headlines | Health Headlines | Education Headlines

 

Caracals: Small Cats With Big Ears Arrive At Wellington Zoo

Visitors to Wellington Zoo will be able to see New Zealand’s first Caracals in the Zoo’s new Grassland Cats habitat, with a special visitor opening day on Saturday 27 September. More>>

Gordon Campbell: Classics - Tales From Moominvalley
Can’t speak for the reading end of it but the Moomins ( or maybe the story about Margaret Wise Brown) were the most enjoyable subject to think about and write about during these whole first 50 issues of Werewolf. For that reason – and because the Moomins always reward re-reading – I’ve decided to reprint it. The only added element is a link to an interesting hour long documentary about Tove Jansson. More>>

ALSO:

Repping In The Pacific: All Blacks And Manu Samoa To Play Historic Apia Test

The All Blacks will play Manu Samoa in Apia on Wednesday 8 July next year as part of both teams’ preparations for Rugby World Cup 2015. More>>

ALSO:

Monarchy: Duke And Duchess Of Cambridge Are Expecting Second Child

Their Royal Highnesses The Duke and Duchess of Cambridge are very pleased to announce that The Duchess of Cambridge is expecting their second child. More>>

ALSO:

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:

Get More From Scoop

 
 

LATEST HEADLINES

 
 
 
 
Health
Search Scoop  
 
 
Powered by Vodafone
NZ independent news