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NZORD Newsletter 2004 #6 - 16 July 2004

Hello everyone,

In this issue:
1 - Meningococcal vaccine available at last.
2 - District Health Board nominations open soon.
3 - Further delays to PGD guidelines.
4 - A bouquet to Pharmac for listening.
5 - Free workshops for family carers.
6 - genETHICS competition attracted 65 entries.
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1 - Meningococcal vaccine available at last.
A thirteen year epidemic of this disease may soon be in its final stages as the long awaited vaccine is approved and given first to young people at high risk of the disease. Over 400 cases and 16 deaths per year since 1991 led to one of New Zealand’s biggest public health initiatives in recent times. $200 million has been spent to get control of this dreaded disease. It is predictable and sad that some lobbyists have argued against the use of the vaccine. Their arguments however, narrowly based on a particular ideological view of health and vaccines, are overwhelmed by the evidence base for the meningococcal vaccine programme, and the urgent need to address this serious epidemic. Our health leaders and administrators deserve praise for their commitment to tackle this serious health problem. Extensive information on meningococcal disease is available at the Ministry of Health website.

2 - District Health Board nominations open soon.
Direct involvement in the administration of our health system is possible through election to the country’s 22 District Health Boards, and nominations for these positions open on Friday 23 July, closing at noon on 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.

3 - Further delays to PGD guidelines.
The long awaited guidelines on pre-implantation genetic diagnosis, a technique to avoid serious inherited diseases when used in conjunction with in-vitro fertilisation, are further delayed while a review is done of the evidence of how the technique has operated in other countries. These delays generate a real tension between the Ministry’s responsibility for caution and thorough evaluation, against the wish of families for speedy implementation of a technique that can greatly improve outcomes for them. Release of draft guidelines by the Minister is not now expected till August or September, with the end of this year now being the likely decision time after consultation is completed. NZORD reiterates it support for speedy introduction of this technique as there is plenty of evidence of a safe technique that delivers great benefit to families. It is to be hoped that there will be some compensatory balance against these long delays, by having a concurrent decision for government funding of the procedure for at-risk families.

4 - A bouquet to Pharmac for listening.
They are not often praised, so we should do so when they get it right. In March 2003 Pharmac proposed to delist gluten-free foods from the pharmaceutical schedule. Patients with coeliac disease would then be forced to pay for their own special medicinal foods. NZORD and a number of support groups made submissions challenging the proposal. Click here to read our submission. Last month Pharmac decided to reject the delisting proposal, noting in their letter to us that it was driven, as we suspected, by budget considerations. The review obviously done by Pharmac has left the subsidy level unchanged and also drawn out an added advantage to Coeliac disease patients in that special authorities will now be accepted life-long, rather than requiring regular specialist review. It is satisfying to note that our submissions are taken seriously, and that Pharmac does listen.

5 - Free workshops for family carers.
SAMS, the Standards and Monitoring Services Trust, is funded by the Ministry of Health to provide a series of 1 and 2 day workshops for family members providing unpaid care for a person with and intellectual and/or physical disability. These workshops are an opportunity for carers to refresh their energy levels, share with others in similar situations, and gain new information and strategies to assist their skills. Check out the events calendar on NZORD’s site for details of dates and locations, or go to www.sams.org.nz for information.

6 - GenETHICS competition attracted 65 entries.
The GenETHICS competition to consider the merits of genetic testing for susceptibility to DVT (economy class syndrome) attracted 65 entries from secondary school students around New Zealand and is a very pleasing result for the competition’s first year in NZ. Evaluation of entries is under way at present and finalists will be judged late August at a gathering in Wellington. Click here for detail of this year’s scenario.

Regards, John

John Forman
Executive Director