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

#SaveCampbellLive : Mediaworks Delivered 104,000 Petition Signatures At TV3's Newton HQ
#PonyTailGate #TailGate Full Coverage

Pukeahu Park : ANZAC 100th Anniversary Dawn Service In Pictures

Roughly 18,000 people gathered this morning at Pukeahu Memorial Park for the Anzac day centenary. Anticipating the large turnout, patrons arrived as early as 4.30. It was virtually impossible to get near the Memorial after 5am. By 6, the crowds on Taranaki Street had stretched as far back as the Z Petrol station.

The screens erected around the park displayed the live events to those who had turned up. The heat generated by the huge number of people caused many to take a turn. Medics and ambulances were on hand for the fainting crowd members. Only twenty minutes into the ceremony, one medic said they had already dealt with 15 to 20 spells. More>>

 

PARLIAMENT TODAY:

War: What’s To Commemorate?

Gordon Campbell in Werewolf: Is there anything that can be validly commemorated on this 100th anniversary of Gallipoli? Beyond, that is, a fleeting sense of empathy with the thousands of soldiers killed or wounded on April 25 1915 and in the months thereafter, until the whole thing was finally called off in December 1915. More>>

MORE IN WEREWOLF:

ALSO:

Peter Ellis Case: Minister Declines Request For Commission Of Inquiry

Justice Minister Amy Adams has declined a request from supporters of Peter Ellis for a Commission of Inquiry on the basis that an inquiry cannot be used to determine the liability of any person. More>>

Quakes: New Process For Red Zone Crown Offers

Canterbury Earthquake Recovery Minister Gerry Brownlee has announced a process to give everyone a say on the Crown offers to owners of vacant, commercial/industrial and uninsured properties in the Residential Red Zone. More>>

ALSO:

Gordon Campbell: On The Battle Obama Is Waging Over The TPP

For the past two and a half years, this column has been arguing that the fate of the Trans Pacific Partnership (TPP) deal will hinge on whether US President Barack Obama can win Trade Promotion Authority (TPA) from Congress... Last week, the White House finally, finally unveiled a draft TPA Bill. More>>

ALSO:

Greens: Govt Breaks Free Doctors Visit Promise To Kids

Documents obtained by the Green Party show that the Government decided to fund only 90 percent of doctors’ visits for children suffering from an injury in an attempt trim the cost of the so-called “free” visits. More>>

ALSO:

Other Wars: Extension Of NZDF Commitment In Afghanistan

The New Zealand Defence Force’s commitment of mentors and support staff to the Afghan National Army Officer Academy in Afghanistan has been extended out to December 2016, Defence Minister Gerry Brownlee says. More>>

PM's Press Conference: Auckland Property Prices Increasing "Too Rapidly"

John Key accepted that Auckland property prices 'are going up too rapidly” in a press conference held today in Wellington, however he said that this is not anything new. More>>

ALSO:

Press Conference: ANZAC PMs Concerned About ISIL Bringing The War Home

Prime Minister Key and Prime Minister Abbott spoke of the bond formed between Australia and New Zealand in the “baptism of fire” of Gallipoli. Abbott stated that New Zealand and Australia’s values and interests are linked, and this is reflected in the joint operation in Iraq which will begin shortly. More>>

ALSO:

Get More From Scoop

 

LATEST HEADLINES

 
 
 
 
 
 
More RSS  RSS News AlertsNews Alerts
 
 
 
Politics
Search Scoop  
 
 
Powered by Vodafone
NZ independent news