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

 


Rare Disease Patients to confront Pharmac

Rare Disease Patients to confront Pharmac

Two dozen rare disease patients and their advocates will front up to talk to Pharmac directly onTuesday 15 April in Wellington. The drug buying agency is hosting a half day consultation meeting to discuss proposed changes to their decision criteria, and the patients’ attendance is being coordinated by NZORD, the NZ Organisation for Rare Disorders, working with advocacy groups for Muscular Dystrophy, Cystic Fibrosis, Lysosomal diseases and the blood disorder PNH.

They accuse Pharmac of failing to listen to the patients’ and advocates’ concerns, and welcome the opportunity to address Pharmac in person about their issues with the proposed decision criteria.

NZORD Executive Director John Forman says that over the years patients have found it extremely difficult getting their voices heard. There have been many submissions put to Pharmac which have been ignored. One example is when 98% of the submissions for the drug Soliris advocated the drug should be funded, Pharmac went ahead and declined the funding anyway.

Forman says that the most fundamental disagreement these groups have with Pharmac, is the drug funder’s narrow view of best health outcome and budget management coupled with their refusal to incorporate the right to health, equity considerations, and community values into their decision making. “The result is a group of mostly health economists acting as technocrats without a sound moral framework to guide them.”

NZORD says that Pharmac need to soften their hard line of sticking primarily to economic factors as that approach contradicts so many important documents such as the guidance of International Covenants, NZ’s Public Health and Disability Act, the NZ Medicines Strategy, and the moral frameworks that are central to our health system.

“It is very concerning to see the way in which Pharmac has surreptitiously stripped reference to moral considerations, such as equity and ethics, out of its policy documents over the past 7 or 8 years, despite those phrases being strongly represented in the legislation and other guidance documents,” says Forman.

“The proposed new version of their decision criteria is the most extreme yet. It strips all consideration of these moral factors right out of Pharmac’s policy framework. The last thing we need in New Zealand is a repeat of the late 19th and early 20th century situations where decisions were made in health, social policy and research without sound moral and ethical guidance, resulting to serious and systemic abuse of patients’ rights. But that is where we are heading, with Pharmac’s current policy direction,” he says.

“Fortunately there is now strong and growing support from most political parties and a variety of academics in support of NZORD’s call for a systems change. We want the establishment of an Orphan Drugs Access programme to provide equitable access to treatments for those with rare disorders, with that programme managed away from Pharmac.” say Forman.

Responding to last Tuesday’s release from Pharmac of a discussion document on High Cost Treatment for Rare Disorders, Forman says the groups are pleased to see their advocacy potentially now influencing policy. “But we are highly suspicious that this is a diversionary measure to try and close down the debate in the lead up to the election, as happened in the 2008 campaign where a review of the exceptional circumstances scheme was offered as a possible solution for funding of these drugs, but did not result in any significant change for rare disease patients.”

“Close reading of Pharmac’s latest proposal shows it is most unlikely to be a workable scheme. Pharmac have suggested a hopelessly inadequate budget for the scheme, and also intend that it should operate within their current framework, but that is impossibly contradictory,” says Forman.

The groups insist Pharmac’s proposed system will not be workable, and this conclusion adds to the suspicion about why this is being proposed in its current form as a “think-piece” for comment, rather than as a serious policy proposal for consultation.

“We suspect,” says Forman, “that they also know it is completely unworkable but are doing this for political expediency in an election year”.

“The patient advocacy groups are convinced that the long term solution is a system change involving an orphan drugs access programme with a realistic budget, administered away from Pharmac, and we have support for our proposal from most political parties. But until it becomes possible for that policy to be implemented we have to continue to influence Pharmac as best we can.” says Forman.

www.nzord.org.nz

ENDS

© Scoop Media

 
 
 
 
 
Culture Headlines | Health Headlines | Education Headlines

 

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:

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:

Get More From Scoop

 
 

LATEST HEADLINES

 
 
 
 
Health
Search Scoop  
 
 
Powered by Vodafone
NZ independent news