NZORD Newsletter 2006 #4 - 21 June 2006

Hello everyone,

In this issue:
1 - Concerns about Down Syndrome screening practices.
2 - Debate on Medicines Strategy off to a good start.
3 - NZORD meets Health Minister to discuss rare disease policy and Genetic Services report.
4 - National Screening Unit tightens control on blood spot cards.
5 - Positive results emerging from MeNZB vaccination campaign.
6 - Whatever happened to the report on preventing neural tube defects?
7 - Ministry of Health calls for South Island Ethics Committee nominations.
8 - Revised food and nutrition guidelines for pregnancy and breastfeeding.
9 - Organ Donor Bill - an important piece of legislation.
*****************************************************************************************

1 - Concerns about Down Syndrome screening practices.
The National Screening Unit has reported to the Health Minister about growing concerns that current practice of antenatal screening for Down Syndrome in New Zealand is not in accordance with best practice. The Ministry has commissioned an expert report on the topic, issued interim advice to health professionals, and set up an advisory group to consider options for antenatal Down syndrome screening. Click here for more information on the Ministry of Health website. [Now hosted at the National Screening Unit site.  A copy of the report can be downloaded from this link] NZORD has advocated for some time for a review and improvement of antenatal screening practices and is pleased to see action is under way on this. NZORD is represented on the advisory group.

2 - Debate on Medicines Strategy off to a good start.
Progress towards the development of a national Medicines Strategy took a step forward in the past two months with a couple of useful discussion forums involving stakeholders from industry, government, support groups and the medical profession, all giving their perspectives on the topic. Despite some expected differences, a valuable outcome of both events was the opportunity to emphasise that Pharmaceutical policy is (and must always be) about more than just budget management and rationing decisions. A Medicine Strategy needs to incorporate “big picture” issues like ethics, the duty of the state to its citizens, patients’ rights to best medical care and treatment, medicine quality and consistency of supply, standards of care, reducing inequalities, and the reasonable expectations held by the community as a whole. NZORD hopes the continuing debate will help establish a sound set of principles to be incorporated into a Medicines Strategy, giving leadership and direction that will improve medicine access for all of us.

3 - NZORD meets Health Minister to discuss rare disease policy and Genetic Services report.
A very positive meeting was held with Health Minister Pete Hodgson on 11 May to brief him on NZORD’s priorities. We were particularly please with the interest he took in the action point calling for the prompt implementation of the Genetic Services report, and his commitment to follow through on that point. Click here to read a summary of the points we put to him, plus the full text of our written briefing. We will keep in touch with his office on these points and report again on progress made.

4 - National Screening Unit tightens control on blood spot cards.
Recent publicity about access to the Guthrie cards holding blood spots from newborn metabolic screening tests, plus comments from the Privacy Commissioner about control of the cards, has prompted the National Screening Unit to complete a Memorandum of Understanding with the New Zealand Police to govern the steps they must go through when access to cards is sought. Click here for details of the Memorandum and the background issues. Despite some public comments raising concern about access to these cards, their use is very rare and has only ever been to help identify victims. This Memorandum helps give reassurance that the blood spots and the information on the cards are all well protected by the Screening Unit.

5 - Positive results emerging from MeNZB vaccination campaign.
Just on one year from the start of the MeNZB vaccination campaign, preliminary data is showing a significant drop in the number of cases of the “B” strain of meningococcal disease in the populations first vaccinated. At the beginning of June over 3 million doses had been administered and nearly 1 million children and young people had received three doses. NZORD congratulates all those involved in this campaign and looks forward to the publication of follow-up data on coverage and disease incidence. Latest data on doses administered and cases notified can be found at this page on the Ministry of Health website.

6 - Whatever happened to the report on preventing neural tube defects?
It is nearly 2 years since the consultation document on options for folate fortification of food, to help prevent fatal or seriously disabling neural tube defects in babies. We may all be forgiven for thinking it had been lost in the system. Fortunately the results of this consultation are due to emerge quite soon and NZORD understands that within a month there will be a final recommendation for mandatory fortification, and a quick decision soon after that. We welcome this. There are approximately 20 cases each year in New Zealand that are preventable in this way and any further delay in this important public health measure would be completely unacceptable. Details of progress on this initiative can be found on the website of the NZ Food Safety Authority.

7 - Ministry of Health calls for South Island Ethics Committee nominations.
The two South Island Ethics committees have vacancies for candidates with consumer, legal, health professional and other experience. Nominations should be forwarded by closing date 5 July 2006 to Gavin_Koroi@moh.govt.nz or fill in the online application at http://www.moh.govt.nz/apps/statcommittees.nsf/application?open

8 - Revised food and nutrition guidelines for pregnancy and breastfeeding.
The Ministry of Health has issue new guidelines which feature a “No Alcohol” advisory for all pregnant women. This advice is welcomed by ALAC and the Fetal Alcohol Support Trust. It clears up sometimes conflicting advice on alcohol consumption during pregnancy. Heavy alcohol use is associated with significant impairments to the baby, but now there is increasing recognition of attention deficit and hyperactivity in babies where smaller amounts of alcohol are involved. Click here for the Ministry’s press release on the topic. [Link no longer active.]

9 - Organ Donor Bill - an important piece of legislation.
An ongoing controversy in New Zealand has been the low rate of organ donation and the difficulties that arise for doctors if families contradict the donor’s wishes once the donor has died. What should the law say? What is the legal situation now? Should the doctors follow the donor’s wishes or the wishes of their next-of-kin? The Health Select Committee is calling for submissions on a Member’s Bill [link no longer active] that intends to clarify the situation by setting up a register of donor intentions and prohibiting others from interfering with that wish being carried out. This Bill has great potential to improve the number of donations made each year in New Zealand and to avoid some of the difficult issues faced by medical staff and families at the time of death. Congratulations to Andy Tookey from the Give Life support group for the work done to progress the Bill to this stage. An online copy of this surprisingly brief but significant Bill can be found at this link. Closing date for submissions is 14 July 2006. NZORD encourages groups to speak in support of the principles contained in this Bill.

Regards, John

John Forman
Executive Director