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

 
Review: Howard Davis On Olivier Assayas' 'Personal Shopper'

Olivier Assayas’ Personal Shopper is stylish, mysterious, and very strange indeed. It manages to be both ghost story and suspense thriller, yet also a portrait of numbed loneliness and ennui , held together by an peculiarly inexpressive performance from ... More>>

Howard Davis: Never Too Old To Rock & Roll - Jethro Tull

As Greil Marcus recently observed in an NYRB review of Robbie Robertson's autobiographical Testimony, in rock and roll there is always an origin story. In the case of Jethro Tull founder Ian Anderson, he claims to have been influenced by his father's big band and jazz record collections and the emergence of rock music in the 1950s, but became disenchanted with the "show biz" style of early US stars like Elvis Presley... More>>

October: Alice Cooper Returns To NZ

It was March 1977 when Alice Cooper undertook his first ever concert tour of New Zealand – and broke attendance records. 40 years on and this revered entertainer continues to surprise and exude danger at every turn, thrilling audiences globally! More>>

ALSO:

Howard Davis Review: The Contemporary Relevance Of Denial

Denial has all the hallmarks of a riveting courtroom drama. Based on a 1996 British libel case that author David Irving brought against Lipstadt, the movie has been criticized as flat and stagey, but it nonetheless conveys a visceral clarity of vision and sense of overwhelming urgency. More>>

Obituary: John Clarke Dies Aged 68

Andrew Little: “I grew up with Fred Dagg and I am devastated by John Clarke’s death. He taught us to laugh at ourselves and more importantly laugh at our politicians.” More>>

ALSO:

Howard Davis: Colin McCahon's 'on Going Out With The Tide'

Curated by Wystan Curnow and Robert Leonard, On Going Out with the Tide features major works that have been assembled from public and private collections across New Zealand and Australia. It focusses on McCahon’s evolving engagement with Māori subjects and themes, ranging from early treatments of koru imagery to later history paintings which refer to Māori prophets and investigate land-rights issues. More>>

Howard Davis: Rodger Fox Gets Out The Funk

By now a living New Zealand legend, band leader and trombonist Rodger Fox has performed with some of the biggest names in the jazz business, including Louie Bellson, Bill Reichenbach, Chuck Findley, Randy Crawford, Bobby Shew, Lanny Morgan, Bruce Paulson, Diane Schuur, Arturo Sandoval, David Clayton-Thomas, and Joe Williams, to name only a few. More>>

Get More From Scoop

 
 

LATEST HEADLINES

 
 
 
 
Health
Search Scoop  
 
 
Powered by Vodafone
NZ independent news