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NZORD Newsletter 2012 #3 -- 7 August 2012

NZORD - the New Zealand Organisation for Rare Disorders

In this issue:
1 – Health select committee agrees to investigate anomalies in medicine funding policies.
2 – Detailed work starts on carer payment issues and a new carers strategy action plan is signalled.
3 – An action plan for rare disorders in NZ – progress report.
4 – New dimension to discussions at the UN and the World Health Assembly.
5 – Vacancy for Lay Advisory Committee member, Royal College of Pathologists of Australasia.
6 – Medical Council consultation on Good Medical Practice.

1 – Health select committee agrees to investigate anomalies in medicine funding policies.
Following direct submissions to the health select committee about anomalies in medicine funding policies, NZORD was invited by select committee Chair, Dr Paul Hutchison, to write to the committee with our concerns. This was done in May this year. Read our letter to the committee.

We have now received a response from the committee inviting us to provide more specific information to assist the committee when it questions Pharmac about these issues. These details will be provided soon, and progress will be reported in a later newsletter.

2 – Detailed work starts on carer payment issues and a new carers strategy action plan is signalled.
Government’s decision not to appeal the Court decision on payments to family carers who support their adult disabled children, is a great boost for the interests of family carers. The detailed settlement for the appellants is yet to be resolved by the Human Rights Review Tribunal, and with major policy work needed for government to develop a fair, non-discriminatory and sustainable policy for carer payments in the future, there is a lot of activity behind the scenes to work these matters out.

Coinciding with this is the end of the current action plan that accompanies the carers strategy, and welcome signals from Minister for Carer Issues, Jo Goodhew, that a new action plan could be put in place next year. The future for carer issues in New Zealand currently looks more promising than it has for some time. May the momentum continue.

3 – An action plan for rare disorders in NZ – progress report.
Our December 2011 submission to the National Health Committee did not result in this proposal getting on to the committee’s work programme. But we are pleased to report progress with the NHC agreeing to work with NZORD in investigating prevalence and costs for a variety of rare disorders. Such work would be an essential part of developing a rare diseases plan. We are pleased with the steps being taken and expect the results will further reinforce the need for such a plan.

4 – New dimension to discussions at the World Health Assembly and United Nations.
In the past decade there has been much useful discussion at the World Health Assembly and at the United Nations about non-communicable diseases and the need for concerted action to minimise these serious drains on health and development worldwide. But the emphasis in the communiqués has tended to be mostly on the big four – heart disease, cancer, lung disease and diabetes – leaving a lot unsaid about many other significant diseases needing attention to mitigate their effects.

At recent UN and WHA meetings, a new dimension is emerging in discussions, following interventions by some of NZORD’s international connections, the International Alliance of Patients’ Organisations and the Non-Communicable Diseases Alliance. The representations by our connections, with our input and support, have pushed for a broader recognition of the need for action on all non-communicable diseases. The recent WHA meeting included a call for action by states to reduce preventable premature mortality from non-communicable diseases by 25% by 2025, and the UN General Assembly late last year issued a declaration about the challenge of epidemic non-communicable diseases.

5 – Vacancy for Lay Advisory Committee member, Royal College of Pathologists of Australasia.
This Royal College is seeking a lay representative – ideally someone who is involved in consumer or disease specific organisations and is not a medical practitioner. The role is a voluntary one with the committee meeting approximately 3 to 4 times a year. Expressions of interest and enquiries can be sent to Sue Butterworth

6 – Medical Council consultation on Good Medical Practice.
Under section 118 of the Health Practitioners Competence Assurance Act 2003 the Medical Council of New Zealand is responsible for setting “standards of clinical competence, cultural competence and ethical conduct” for doctors. In 1998 they developed Good Medical Practice to be the foundation document for the standards they set. Good Medical Practice was last reviewed in 2006. The Council is seeking feedback from doctors, patients and other agencies on changes they are proposing to make to this resource Read more at this link. Submissions close 12 October 2012.

Regards, john

John Forman
Executive Director, NZORD
New Zealand Organisation for Rare Disorders


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