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

Still In The Red:
NZ Govt Shunts Out Surplus To 2016

The New Zealand government has pushed out its targeted return to surplus for a year as falling dairy prices and a low inflation environment has kept a lid on its rising tax take, but is still dangling a possible tax cut in 2017, the next election year and promising to try and achieve the surplus pledge on which it campaigned for election in September.

The Treasury expects the Crown's operating balance before gains and losses to be a deficit of $572 million in the year ending June 30, 2015 before turning to a surplus of $565 million the following year, according to the half-year economic and fiscal update. The government's financial adviser had previously been forecasting the books to be back in the black in the current financial year ... More>>

 

Parliament Adjourns:

Police: Phillip Smith Investigation Passport Charge

A 25 year-old man will appear in the Whanganui District Court today charged with the Passports Act offence of False Representations. The charges were laid on December 9 by the Auckland-based Phillip Smith investigation... More>>

Intelligence: Inspector-General Accepts Apology For Leak Of Report

The Inspector-General of Intelligence and Security, Cheryl Gwyn, has accepted an unreserved apology from Hon Phil Goff MP for disclosing some of the contents of her recent Report into the Release of Information by the NZSIS in July and August 2011 to media prior to its publication. The Inspector-General will not take the matter any further. More>>

ALSO:

Drink: Alcohol Advertising Report Released

The report of the Ministerial Forum on Alcohol Advertising and Sponsorship has been released today, with Ministers noting that further work will be required on the feasibility and impact of the proposals. More>>

ALSO:

Other Report:

Leaked Cabinet Papers: Treasury Calls For Health Cuts

Leaked Cabinet papers that show that Government has been advised to cut the health budget by around $200 million is ringing alarm bells throughout the nursing and midwifery community. More>>

ALSO:

Maori Party: Tribunal Report Confirms Iwi Ownership Of Lake Waikaremoana

“We are pleased for the claimants that eight years after the hearing began on Lake Waikaremoana they have some closure,” says Māori Party Co-leader Te Ururoa Flavell. “Most importantly, the report confirms freshwater is a taonga and identifies the ownership rights of Tūhoe, Ngāti Ruapani, Ngāti Kahungunu, and Ngāi Tamaterangi to the lake bed.” More>>

ALSO:

Climate Performance Report - Not Achieved: NZ Government Part Of Global Climate Problem

The New Zealand Government’s position on climate change is part of the global problem that we need to overcome if we are to avoid catastrophic climate change, the Green Party said. More>>

ALSO:

NSW Police Statement: Three Dead Following Martin Place Siege

About 2.10am (Tuesday 16 December), a confrontation occurred between police and a man who had taken a number of people hostage inside a café on Martin Place. Shots were fired during the confrontation. As a result, the 50-year-old man was pronounced dead after being taken to hospital. Another man, aged 34, and a woman, aged 38, were pronounced dead after being taken to hospital. More>>

ALSO:

Gordon Campbell: On The Sydney Siege (And DHB Budget Cuts)
Whenever the authorities bring a siege situation to an end, there will be criticism if – as has happened in Sydney – any hostages are seriously hurt, or killed... In the Sydney Morning Herald this morning, columnist Peter Hartcher raises a different point – that the initial public response had been noticeably different to the agitated reactions of politicians and the media. More>>

ALSO:

Gordon Campbell: On Income Inequality, And Yo Ho Ho Christmas Songs

As 2014 grinds to a close, we probably didn’t need one more reminder of this government’s ability to stare reality in the face and declare black to be a very fine shade of white... Yet on Wednesday, there was Finance Minister Bill English trying to tell RNZ that the OECD was (a) wrong (b) using old data and (c) somehow anti-growth and in any case (d) New Zealand allegedly already had a strongly re-distributive tax system... More>>

Werewolf: Public Health - The Silent Crisis

Gordon Campbell: New Zealand’s public health system has been in crisis for so long that its failings – and deteriorating performance vis a vis other developed countries – now tend to be treated as its normal mode of being. More>>

ALSO:

Parliament Today: House Adjourns For Summer

Parliament has risen for the summer break with the Adjournment Motion agreed just after 5pm on Wednesday. More>>

ALSO:

Get More From Scoop

 

LATEST HEADLINES

 
 
 
 
 
 
 
 
Politics
Search Scoop  
 
 
Powered by Vodafone
NZ independent news