NZORD Newsletter 2004 #7 - 7 August 2004

Hello everyone,

In this issue:
1 - Reducing Neural Tube Defects - consultation.
2 - Report on Complementary and Alternative Health practices.
3 - Nominations sought for Ethics committees.
4 - Submission to Health Research Council on disability research priorities.
5 - Another Social Entrepreneur grant.
6 - HINZ Information Management Award for NZORD.
7 - Significant British decision on PGD ethics.
8 - Office of Rare Diseases Annual Report.
9 - Reminder: DHB nominations.
******************************************************************************

1 - Reducing Neural Tube defects - consultation.
An important discussion document has been released by the Ministry of Health and the NZ Food Safety Authority, seeking comment on options for reducing Neural Tube Defects in newborn babies. NTDs occur when the parts of the brain and spinal cord are not properly formed, resulting in spina bifida, anencephaly and other disorders. Fortification of selected food with a dietary supplement, folic acid, is one method of reducing the number of cases, and the consultation seeks opinion on moving to mandatory fortification of certain foods, or retaining the current voluntary system. Click here to read the consultation document. Make your own submission or send your comments to NZORD for inclusion in our submission. NZORD plans to submit that the voluntary system is failing, and avoidable harm to babies can best be achieved by a mandatory regime. Closing date is 20 August 2004.

2 - Report on Complementary and Alternative Health practices.
Questions of evidence, regulation and possible government funding of Complementary and Alternative Health services, are the subject of a Ministerial Advisory Committee report just released. NZORD submitted on this topic in June 2003. Click here to read our comments. The committee’s report seems, at first glance, a well balanced approach to the questions considered. Click here for the Health Ministry’s notice about the report and links to the full text of the report. The Ministry will now examine the recommendations in details and report to the Minister on their implementation.

3 - Nominations sought for Ethics committees.
Do you have the experience to fill a place on an Ethics Committee? Do you know someone who would fit the role? The Minister of Health will soon appoint members to seven new committees that guard the rights, health and wellbeing of patients and participants in health research and innovative practice. Particular concern is to be shown for those with diminished autonomy. People with legal and health experience are sought, as well as Maori and those with a community and consumer perspective. Click here [link no longer active] for more detail and application forms for these positions. Appointed members are paid a daily fee for committee work. Applications close 27 August 2004.

4 - Submission to Health Research Council on disability research priorities.
Last year NZORD expressed concern to the HRC about proposed priorities for disability research. This year the HRC’s advisory committee has recommended giving extra “brownie points” to research proposals focusing on social aspects of disability. NZORD has submitted a detailed critique of this approach and emphasised that for the vast majority of disabled people and their families, the top priority is to get control of the incidence and severity, to manage pain and symptoms, and allow more independent functioning. We expressed concern that social barriers and community acceptance have taken centre stage in policy when they represent the priority of the minority of disabled people with the most stable and managed impairments. Click here to read the full text of our submission. We await with interest the final decision on research priorities for disability, from the HRC.

5 - Another Social Entrepreneur grant.
Some of these caused such a furore, I though it best to explain in full exactly what I did with my $14,000 grant from the Social Entrepreneur fund, and publish the report as widely as possible. Click here to read it and you will find out why it involved a third trip to Washington for the same main purpose, why it paid to advertise a garage sale, why it involved visiting a guinea pig named Elton, and why the total expenditure does not tally with the grant received. Decide for yourself if it was money well spent, after all, it was your tax dollars.

6 - HINZ Information Management Award for NZORD.
On Tuesday 27th July, the Hon Jim Anderton, as Associate Minister of Health, presented NZORD and our web development partners absolutely.co.nz Ltd, with an award for Excellence in Health and Disability Information Management, for the quality of our website, and innovative use of associated email and communications technology. A writeup of the project is contained in the Health Ministry’s publication of the four winning projects. NZORD is very grateful to the Todd Foundation for a grant to develop our web resources.

7 - Significant British decision on PGD ethics.
With just a month to go before New Zealand’s guidelines for use of PGD (pre-implantation genetic diagnosis) are due for release and public comment, the British regulating panel has agreed to the use of this technology by couples wishing to get a matching child for an existing seriously ill child. This decision on “saviour siblings” follows a British High Court ruling in 2003 that such a procedure was effectively a human right for the couple. Another earlier case saw a family refused permission for the procedure, travel to the US and had the procedure there. Click here for a BBC report and links to other material on the topic.

The step to create a matching child is a major step beyond the initial use of PGD technology to avoid serious inherited diseases in babies. Hundreds of healthy babies have been born worldwide using this technology, over 100 of them in Australia alone. New Zealand has many couple at risk of serious disorders in future pregnancies and keen to make use of PGD technology. Given the rapid developments and demonstrated safety in other parts of the world, there can be little reason for New Zealand to delay the implementation of PGD and we should proceed promptly to issue the guidelines and begin licensing fertility clinics to do PGD.

8 - Office of Rare Diseases Annual Report.
The US Office of Rare Diseases has just published the first in a new reporting series, on progress in rare disease research and treatment developments. Click here to read this substantial report. [No longer available] It is heartening to see such a large amount of activity in so many rare diseases. The US is certainly the biggest investor in biomedical research but significant funding also occurs in many other countries, particularly in the European Union. Though New Zealand cannot compete with the scale of this investment, science here is able to contribute significantly to health research, and recent reports show we can “punch above our weight” in the quality of what we produce. Many groups will be able to find comment in this report on the cutting-edge of research in their disorders, and I’m sure most will readily support NZORD’s view that New Zealand should invest at least a proportionate amount in understanding the rare disorders that, added together, affect around 8 to 10% of our population.

9 - Reminder: DHB nominations.
Nominations for elected positions on District Health Boards close Friday 20 August. An important new feature of these elections will be the use of the Single Transferable Vote system that will give every voter the chance to choose all 7 of the elected positions on the DHB, by ranking their preferences 1 to 7 on the ballot paper. Read more about the elections and voting system on the Ministry’s 2004 District Health Board Elections page.

Regards, John

John Forman
Executive Director