NZORD Newsletter 2010 #1 - 23 January 2010

Hello Everyone,

In this issue:
1 – Delight at Human Rights Tribunal decision on carer payments crushed by government appeal.
2 – International rare diseases day is coming to New Zealand.
3 – NZORD continues its support for AgResearch’s transgenic animals program.
4 – High cost medicines review panel’s interim report.

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1 – Delight at Human Rights Tribunal decision on carer payments crushed by government appeal.
NZORD joined many support groups in the health and disability sector in welcoming the 8 January decision of the Human Rights Review Tribunal. This confirmed that Ministry of Health refusal to pay family carers of seriously disabled adult children when other carers would be paid for that same care, was a breach of the Bill of Rights Act. We immediately urged government to accept the ruling and not appeal, but within weeks the appeal was announced. Here is the response from NZORD and the NZ Carers Alliance, to the government’s decision to appeal.

2 – International rare diseases day is coming to New Zealand.
At the end of February there will be a celebration of international rare diseases day. This event started in Europe a few years ago and has spread rapidly around the world as an annual event. Watch for more details in coming weeks.

3 – NZORD continues its support for AgResearch’s transgenic animals program.
In our December 2009 newsletter we discussed our frustration at how this research program is being impeded by court action and ill-informed opposition. Here is our submission to ERMA on the application AgResearch has made to continue the approval for its existing transgenic program.

4 – High cost medicines review panel’s interim report.
Shortly after the 2009 budget Tony Ryall, Minister of Health, announced the establishment of a review panel to recommend how to improve access to high-cost, highly specialised medicines in New Zealand. The panel will be reporting direct to the Minister in March 2010. In December 2009, after several months of discussion with a range of stakeholder groups in the health sector, the panel produced a 61 page interim report for discussion and they welcome submissions on this. NZORD has worked with the Access to Medicines coalition to ensure our interests are represented to this panel by the consultation closing date of 28 February 2010. The panel will be holding a discussion forum on 17 February and all groups with an interest in this meeting are invited to register for this event.

Regards, John

John Forman
Executive Director