NZORD Newsletter 2004 #8 - 9 September 2004

Hello everyone,

In this issue:
1 - Reducing Neural Tube Defects - Submission.
2 - Outstanding response to Meningococcal B Immunisation Programme.
3 - New Zealand's commitment to Health Research funding inadequate - expert report.
4 - GenETHICS competition winner.
5 - Special Education services review.
6 - Coming events.
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1 - Reducing Neural Tube defects - Submission.
NZORD has written to the Ministry of Health and the Food Safety Authority urging mandatory fortification of flour with a vitamin supplement, folate. This additive can significantly reduce the incidence of spina bifida and other serious neural tube defects in newborn babies. We have supported the call of CCS New Zealand for prompt implementation of folate fortification and questioned the delay in following the lead set by other countries. Click here to read our submission. We hope the Ministry and the Food Safety Authority will act quickly to implement this important public health measure to save lives and reduce disability.

2 - Outstanding response to Meningococcal B Immunisation Programme.
The Ministry of Health is delighted with the response to the Meningococcal B Immunisation Programme with more than 50,000 children and young people vaccinated in the first month. Click here for the Ministry's press release of 25 August. NZORD shares the Ministry's concern at misinformation distributed by the anti-vaccine lobby. Attempts such as this to undermine the programme, because of narrowly focused and obsessive anti-vaccine views, could potentially lead to avoidable death and disability if these erroneous views influenced some people to avoid the vaccine. It is heartening that these scare tactics have had no apparent impact, and people are very keen to take advantage of this important health protection measure.

3 - New Zealand's commitment to Health Research funding inadequate - expert report.
An Australian expert group, commissioned by the Ministry of Research, Science and Technology to review New Zealand's system of health research funding, has found we have a high quality system but it is funded far below that of most other comparable countries and is at serious risk of falling below a sustainable level of investment. Click here to read the Ministry's page on this review, including links to the expert group's report (in PDF format). NZORD shares the expert group's concerns. Rare diseases affect up to 8% of the whole population, and progress in understanding and treating these diseases is dependent on biomedical research. Without a realistic level of investment in health research, our important health interests will remain un-researched and neglected. Other recent reports have identified New Zealand as "punching above its weight" in the quality of its health research, but this is an area where in terms of investment, we are certainly not pulling our weight.

4 - GenETHICS competition winner.
Congratulations to Catrina Huang, a student at Epsom Girls’ Grammar School, for winning the New Zealand final of the Australasian genETHICS competition. Over 70 students from around New Zealand entered the inaugural New Zealand round of this competition, looking at the social and ethical aspects of emerging genetic knowledge. In the scenario, students had to discuss the science, the risks and the benefits of screening for the Factor V Leiden mutation that is associated with susceptibility to deep vein thrombosis. On the strength of her essay, Catrina was selected to join four other finalists to present before a panel of judges. Catrina impressed with her grasp of the science, a clear and confident presentation of her arguments and an appreciation of competing health priorities, to win first place and the $200 prize. Her presentation will soon be assessed against finalists from Australian states to determine an overall Australasian winner. NZORD notes with thanks the considerable assistance of the Royal Society of New Zealand in bringing this competition to New Zealand schools.

5 - Special Education services review.
The Special Education service is conducting a series of meeting nationwide to foster collaboration in service planning and provision. For details of local meetings check the Ministry of Education website.

6 - Coming events.
Check our Events Calendar for upcoming conferences on post-polio, dyspraxia, dwarfism, neuromuscular conditions, and futures for young disabled people. We also list workshops for family carers and a seminar on teaching strategies for those with learning and behaviour challenges.

Regards, John

John Forman
Executive Director