Gordon Campbell | Parliament TV | Parliament Today | News Video | Crime | Employers | Housing | Immigration | Legal | Local Govt. | Maori | Welfare | Unions | Youth | Search

 


Hear the voice of those with rare disorders

Hear the voice of those with rare disorders


Rare disease patients and their support groups are calling on the government to put in place an orphan drugs access programme, similar to those in place or being developed in most other OECD countries.

They say that Pharmac is unable to manage access to specialised medicines under its current framework, and are calling for separate management of these medicines in the Ministry of Health, just like the separate process in place now for very specialised and high cost medical and surgical treatments.

The omission of fairness and equity from Pharmac’s policy and decisions relating to specialised medicines is regarded by the groups as a serious conflict with the rights of the patients and at variance with health legislation, health strategies, and Ministry of Health guidelines for decision making, which all place equity, fairness and community values into decision criteria.

NZORD and the support groups endorse Pharmac’s core role of getting a good deal on medicines for the bulk of the population, but say that Pharmac’s track record regarding medicines for orphan diseases is an appalling failure. “We think they should be left to get on doing what they can do well, and have their failure remedied by removing it from their responsibility,” the groups say.

Thursday 28 February is Rare Disease Day and draws attention to the needs of those with rare disorders. NZORD, the NZ Organisation for Rare Disorders, is hosting a seminar today at which several patients will be talking about their difficulties getting access to new treatments for rare “orphan” diseases. The groups’ concerns are reinforced by presentations from health researcher Greg Coyle who will discuss the findings of his PhD thesis which examined Pharmac’s exceptional circumstances scheme, and lawyer Lucy Elwood will be discussing legal aspects of the issues.

John Forman, executive director of NZORD says “These patients are being abandoned by the health system. There is a systems failure in this area, as the moral factors of fairness, equity and community values are not being included in Pharmac’s decisions on specialised medicines.”

“The 2011 review of the exceptional circumstances scheme and the introduction of the new NPPA scheme, actually made it more difficult for rare disease patients to get a fair hearing,” says Forman. “The criteria changed so rarity was no longer a prerequisite, but they also made it practically an exclusion criteria”, he said.

The criteria reflect Pharmac’s narrow health economics and budget management approach, and exclude the very important moral factors of equity, fairness, and community values. It appears to be a deliberate exclusion of moral considerations from decision making.

In trying to find solutions and answers to the way in which access to “orphan” medicines is managed, NZORD and a number of associated support groups have been sent around in circles. After a test case under the new system, which was rejected by Pharmac as not eligible for consideration, they approached Ministers for an examination of the policy framework, but were ‘fobbed off’. They then approached the Health Select Committee who directed them to the Health Minister. The Minister initiated a report from the Ministry of Health into the groups’ concerns, but before briefing with the Ministry were even completed the Minister wrote to say he could not interfere with funding decisions by Pharmac, despite the request being about policy accountability, not a specific funding decision. The Minister then referred the matter to Pharmac which resulted in a bland avoidance letter from Pharmac.

Unable to get any traction from these approaches, the groups submitted a case to the Ombudsman in October 2012, claiming unfair application of the policy to an individual case, and suggesting that the policy itself was not fairly formed. The case is still being investigated by the Ombudsman and a response is expected soon.

Groups participating in today’s seminar include:
The Muscular Dystrophy Association of New Zealand www.mda.org.nz
Lysosomal Diseases New Zealand www.ldnz.org.nz
The PNH Support Association of New Zealand www.pnhsanz.org.nz
Hereditary Angioedema Australasia www.haeaustralia.org.au


ends

© Scoop Media

 
 
 
 
 
Parliament Headlines | Politics Headlines | Regional Headlines

Anzac Issue Out Now: Werewolf 47

Hi and welcome to the 47th edition of Werewolf, published on the eve of Anzac Day. Its become a cliché to describe Gallipolli as the crucible of this country’s identity, yet hold on... Isn’t our national identity supposed to be bi-cultural... and wouldn’t that suggest that the New Zealand Wars of the 19th century is a more important crucible of national identity than those fought on foreign soil?

Yet as Alison McCulloch eloquently reveals in this month’s cover story, New Zealand devotes a mere fraction of its attention span and funding resources to commemorating the New Zealand Wars compared to what it devotes to the two world wars, Vietnam and Afghanistan... More>>

 

Parliament Today:

Crowdsourcing: Green Party Launches Internet Rights And Freedoms Bill

The Green Party has today launched the Internet Rights and Freedoms Bill, New Zealand’s first ever Bill crowdsourced by a political party. More>>

ALSO:

Gordon Campbell: On The Shane Jones Departure

Shane Jones has left Parliament in the manner to which we have become accustomed, with self interest coming in first and second, and with the interests of the Labour Party (under whose banner he served) way, way back down the track. More>>

COMMENT:

Multimedia: PM Post-Cabinet Press Conference - April 22 2014

The Prime Minister met with reporters to discuss: • The recent improvement in the economy with a growing job market • Income and wealth inequality • Easter trading laws • The New Zealander killed in a drone strike in Yemen... More>>

Easter Trading: Workers 'Can Kiss Goodbye To Easter Sunday Off'

The Government’s decision to “reprioritise” scarce labour inspector resources by abandoning the enforcement of Easter Sunday Shop Trading laws means workers can kiss goodbye to a guaranteed day off, says Labour’s Associate Labour Issues spokesperson Darien Fenton. More>>

ALSO:

ACT Don't Go For Maximum Penalty: Three Strikes For Burglary, Three Years Jail

Three strikes for burglary was introduced to England and Wales in 1999. As in New Zealand, burglary was out of control and given a low priority by the police and the courts. A Labour government passed a three strikes law whereby a third conviction for burglaries earned a mandatory three years in prison... More>>

ALSO:

Gordon Campbell: On Drone Strikes And Judith Collins‘ Last Stand

The news that a New Zealand citizen was killed last November in a US drone attack in Yemen brings the drones controversy closer to home. More>>

ALSO:

Elections: New Electorate Boundaries Finalised

New boundaries for the country’s 64 General and seven Māori electorates have been finalised – with an additional electorate created in Auckland. More>>

ALSO:

Policies: Labour’s Economic Upgrade For Manufacturing

Labour Leader David Cunliffe has today announced his Economic Upgrade for the manufacturing sector – a plan that will create better jobs and higher wages. More>>

ALSO:

Gordon Campbell: On The Life And ACC Work Of Sir Owen Woodhouse

With the death of Sir Owen Woodhouse, the founding father of the Accident Compensation Scheme, New Zealand has lost one of the titans of its post-war social policy. More>>

ALSO:

Bad Transnationals: Rio Tinto Wins 2013 Roger Award

It won the 2011 Roger Award and was runner up in 2012, 2009 and 08. One 2013 nomination said simply and in its entirety: “Blackmailing country”... More>>

ALSO:

Get More From Scoop

 

LATEST HEADLINES

 
 
 
 
 
 
Politics
Search Scoop  
 
 
Powered by Vodafone
NZ independent news