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NZORD - December Newsletter

NZORD - the New Zealand Organisation for Rare Disorders

In this issue:
1 – National Health Board confirms national services and service improvement programmes.
2 – Good news in High Court decision on payments to carers, but government signals another appeal.
3 – Is there hope for real improvement to the Ministry’s disability support services?
4 – Telemedicine boost for Genetic Services and West Coast practitioners.
5 – NZORD charitable company wins ethics approval for rare disease biobank collection.
6 – Pharmac review of exceptional circumstances scheme is delayed.
7 – High Court confirms approval of AgResearch Transgenic animals project.
8 – Missed a newsletter?

1 – National Health Board confirms national services and service improvement programmes.
In a November 2010 letter to District Health Board CEOs, the National Health Board has confirmed five services to be designated as National Services from 1 July 2011. These are clinical genetics, paediatric pathology, paediatric metabolics, paediatric cardiology, and paediatric cardiac surgery. The NHB also confirmed National Service Improvement Programmes will be put in place for cardiac surgery, paediatric oncology, paediatric gastroenterology, neurosurgery and major trauma. Read more on the NHB website.

NZORD is very pleased to see such decisive moves to overcome barriers to service improvement, protect vulnerable services, and ensure equitable access for patients in all parts of the country. Recent changes to the NZ Public Health & Disability Act are another important factor in these decisions. The changes will reinforce co-operation by DHBs and help avoid the unacceptable regional variations in services and access that have been such problems in the past.

2 – Good news in High Court decision on payments to carers, but government signals another appeal.
Early this year we reported on a decision from the Human Rights Review Tribunal finding in favour of families seeking payment for caring for their severely disabled adult children, and the government’s intention to appeal to the High Court. Just last week the court issued its decision which confirms the HRRT ruling that families had been unlawfully discriminated against. This is another major victory for the families and for the principle of non-discrimination because of family status, but the government has signalled a further appeal.

NZORD and the NZ Carers Alliance have supported the families’ case, and also called for the government to provide more systematic support to the many families with significant caring responsibilities for sick, disabled or elderly family members. Early in 2011 the Carers Alliance will launch an information campaign about the reality of caring in our society, and call for the specific implementation of the action plan set out in the 2008 NZ Carers Strategy. We had hoped that government acceptance and implementation of the latest court ruling might be the first major step they take to recognise and value the role of carers.

3 – Is there hope for real improvement to the Ministry’s disability support services?
For nearly two decades, disability support services provided in New Zealand via the Ministry of Health have been characterised by overly-bureaucratic administration and a culture of suspicion that has resulted in complex processes, frustration for families, and disempowerment. A select committee inquiry three years ago found significant problems and called for improvements to the way disability supports are provided. This topic was specifically discussed in the Chair’s report to the Carers Summit in 2009. There are now encouraging signs that government and the Ministry are becoming more responsive to the needs of disabled people and their families.

Government has appointed a Ministerial Committee on Disability Issues to guide changes across government. This is the first indication for many years of any serious intent to fix the systemic problems inherent in how government agencies relate to disabled people and their families. Within the Ministry, moves are being made by Disability Services Directorate to significantly increase the number of individual funding packages that will give the person and the family much more control over the type of support obtained. They are also implementing pilots of a new model of disability support that is specifically aimed at improving choice and flexibility in disability support services. These are significant steps by government and the Ministry. There is a lot more for to be done in reducing the complexity and bureaucracy we all face, but these recent decisions give some cause for hope that real change may be on the way.

4 – Telemedicine boost for Genetic Services and West Coast practitioners.
A feature of health care in New Zealand is increasing use of video-conferencing for education sessions and specialist consultations. NZORD recently assisted with the provision of VC units to genetic services in Auckland and Wellington, and with the provision of more units to provide desktop VC facilities for remote areas in the West Coast of the South Island. See this link for a recent Dominion Post article on the VC use on the West Coast.

The units were obtained by NZORD in a 2007-08 experiment with the use of VC equipment for not-for-profits, funded by grants via the government’s digital strategy. However ongoing costs and a small number of organisations connected to the network, meant the pilot could not practically be continued. We are very pleased to pass on the units so they can be put to such good use.

5 – NZORD charitable company wins ethics approval for rare disease biobank collection.
NZORD has a subsidiary charitable company set up to promote rare disease research. See For the past few years we have concentrated on promoting NZ’s natural animal models of rare disease, while preparing our application for ethics approval for collecting tissue from rare disease patients and their families. We are pleased to announce that ethics approval has now been granted for the collection of human tissue.

During 2011 we will purse plans for developing the human tissue collection in a systematic way, while always being receptive to opportunistic collection that may become possible because of planned surgery or other events. Contact us if you have an interest in discussion collection possibilities.

6 – Pharmac review of exceptional circumstances scheme is delayed.
The vexed question of access to new medicines in New Zealand continues to drag on and on. The special panel set up by the Minister in 2009 recommended a review of the exceptional circumstances scheme as a suitable mechanism for considering access to high-cost, highly specialised medicines. In accepting that report early this year the Minister indicated decisions would be made by the end of this year, but now it seems Pharmac’s review of the EC scheme may not be completed till mid 2011.

Crucial to the current situation is whether Pharmac’s task is to develop an implementation system for access to these new medicines, or whether they are starting from the basic question of whether such medicines should be made available at all. If the policy decision has been made by government that access to these medicines will be improved through the EC scheme, then Pharmac’s review and consultation is mostly about process, and the time delay, while frustrating, is perhaps tolerable. But if Pharmac’s review is about the more basic question, then we have a major dilemma on our hands

Pharmac has proved incapable in the past of adequately looking beyond the narrow aspects of cost-effectiveness and budget management. They appear to have no suitable framework for incorporating fairness and equitable access into their decision-making, despite the Medicine Strategy requiring this of them. They are most unlikely to do a good job of the EC scheme review unless they are given clear policy direction from government. So far we have been unable to clarify the policy context in which this review will occur. Our year ends with considerable anxiety about how this issue will progress into 2011.

7 – High Court confirms approval of AgResearch Transgenic animals project.
More good news this month with the High Court rejecting an appeal against the approval for AgResearch to proceed with its Transgenic animals project. NZORD has consistently supported this research towards the production of therapeutic proteins in the milk of genetically modified cows. Follow this link for the most recent submission from NZORD.

Opponents of this technology have caused many delays to this project, but during this time the first medicine derived from transgenic animals have been approved by the US Food and Drug Administration for medicine use in humans. It is noticeable that opposition to this technology has declined significantly over recent years, and we look forward now to unimpeded progress by AgResearch in this important work.

8 – Missed a newsletter?
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