NZORD Newsletter 2005 #10 - 20 December 2005

Hello everyone,

In this issue, several reasons to celebrate:
1 - Funding for PGD is confirmed.
2 - Minister confirms commitment to Universal Newborn Hearing Screening.
3 - Access to Medicines Coalition wins its key objective.
4 - NZ Carers Alliance wins Ministerial support for a Carer Strategy.
5 - Bioethics Council gives positive report on Xenotransplantation.
6 - Cochrane Library available free online to all New Zealanders.
7 - Events Calendar for 2006.
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1 - Funding for PGD is confirmed.
In what will certainly be the best Christmas present for many New Zealand couples at risk of inherited disease in their children, the new Health Minister Pete Hodgson last week announced government funding of pre-implantation genetic diagnosis. This procedure will help couples avoid a repeat of the serious and often fatal condition that already exists in their family. Click here to see the Minister’s press release detailing the funding package. This decision caps off a very good year in relation to PGD procedures. In May this year the guidelines for PGD were approved and the funding decision just released will see New Zealand take a lead in comparison to many other countries, in efforts to control some very severe inherited diseases. Click here to read more.

2 - Minister confirms commitment to Universal Newborn Hearing Screening.
In a Christchurch Press article on 22 November (no link available) Health Minister Pete Hodgson confirmed the government’s pre-election promise to follow through with a Universal Newborn Hearing Screening programme. Early identification of hearing loss allows interventions that are important for brain development, communication and learning. Currently the average age of diagnosis in New Zealand is 45 months. The screening programme is currently being piloted in the Waikato and will be implemented nationwide over the next few years. It is expected that up to 170 babies will be identified with hearing loss each year and their early childhood development will be greatly enhanced by the early interventions the programme will allow. Click here for an October 2005 Ministry of Health update on Newborn Hearing Screening. [Original link no longer available. Current link is to a February 2006 publication "Universal Newborn Hearing Screening for New Zealand 2005".]

3 - Access to Medicines Coalition wins its key objective.
A Coalition of more than 25 support groups, closely supported by NZORD, has been working behind the scenes for over a year for improved access to medicines for New Zealand patients. Success came sooner than expected when the agreement between the Labour Party and United Future on forming the government, contained a commitment to a review of medicine policy for New Zealand. This was the prime objective of the ATM Coalition, achieved even before we formally launched in late November, and is a very pleasing result that reflects the work we did in the lead-up to our launch. Now we need to ensure the process for the policy review is open and transparent, so all our voices can be clearly heard. Click here to read more.

4 - NZ Carers Alliance wins Ministerial support for a Carer Strategy.
Another of NZORD’s key networks is the NZ Carers Alliance, with over 35 groups working to improve the recognition and support for those caring for sick, injured and disabled family members and friends. The prime objective of the Carers Alliance is the development of a Carer Strategy that sets out government objectives for recognition of and support for carers in their, invariably, unpaid roles. We were delighted to receive a commitment in November from Disability Issues Minister Ruth Dyson, for the development of a Carer Strategy and this is a piece of work we will eagerly engage in over the next year.

5 - Bioethics Council gives positive report on Xenotransplantation.
After a lengthy period of public dialogue the Bioethics Council released its report on Xenotransplantation on 13 December 2005. Click here for the Bioethics Council’s press release (from the National Library of New Zealand's National Digital Heritage Archive). NZORD is pleased to note the sensible findings in the report that Xenotransplantation is generally acceptable to New Zealanders and that procedures should be allowed to develop with appropriate regulation. These findings are consistent with the submissions made by NZORD on the consultation document and we hope the Council’s report will lead to policy changes that enable clinical trials of treatment options to proceed.

6 - Cochrane Library available free online to all New Zealanders.
One of the world’s most respected libraries of evidence based reviews of medical interventions is now available online to all New Zealanders. Though written by health professionals, the publications should be generally understandable by the lay reader with an interest in particular treatments, and the many thousands of articles in the library offer a good chance that most topics of interest will be found. Click here for a Ministry of Health announcement about the Cochrane Library or use this link to go directly to the Cochrane Library

7 - Events Calendar for 2006.
If you’d like your conference or annual meeting listed in NZORD’s events calendar, send us details and we will post them early in the New Year.

With best wishes for a pleasant Christmas and New Year period for all of you. Regards, john

John Forman
Executive Director