NZORD Newsletter 2007 #2 -- 16 July 2007

NZORD - the New Zealand Organisation for Rare Disorders

Hello everyone,

In this issue:

1 - Victory in long campaign for folate fortification of food to prevent neural tube defects.
2 - Guthrie cards - NZORD’s submission on consent, storage and use.
3 - New consultation on policy aspects of assisted reproductive technology.
4 - New guidelines on use of human tissue in future unspecified research.
5 - Pneumococcal vaccine to be funded by government.
6 - NZORD’s submission on proposed changes to the Health Information Privacy Code.
7 - Congratulations on Queen’s birthday honour for Dr Dianne Webster.
8 - Newborn hearing screening programme gets rolling.

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1 - Victory in long campaign for folate fortification of food to prevent neural tube defects.

The Australian New Zealand Food Safety Authority recently decided to bring in rules for the mandatory fortification of food with the vitamin folic acid (folate) to reduce neural tube defects in babies. This is a long awaited and much welcome announcement. The evidence for this important public health initiative has been well established for many years and we now have action at last. There is a two year implementation phase, though bakers can start sooner. We hope they will act as soon as possible to give proven positive gains to the health of NZ babies. Click here for the Minister’s announcement.

2 - Guthrie cards - NZORD’s submission on consent, storage and use.

The public consultation on this topic by the National Screening Unit closed in June. NZORD’s submission was based on discussions and feedback within our network over the years but also informed by ideas contained in the essays from secondary students entering the 2007 genethics competition on this very topic. You can read the submission from NZORD at this link.

3 - New consultation on policy aspects of assisted reproductive technology.

ACART, the Advisory Committee on Assisted Reproductive Technology, is required by its governing Act to consult on a number of policy issues relating to assisted reproductive technologies. Submissions are sought on various aspects of ART, including surrogacy, embryo and gamete donation, import or export of gametes and embryos, and the sort of guidelines it should give to the Ethics Committee on decisions about individual application that come to it. A discussion document is available at this link on the ACART website. Submissions close on 17 August 2007. NZORD encourages groups to contribute to the consultation process by making a submission.

4 - New guidelines on use of human tissue in future unspecified research.

After several years of consultation the Ministry of Health has released guidelines for the use of human tissue for future unspecified research. Click this link for details of the original discussion document and the NZORD submission in August last year. The guidelines from the Ministry are important for NZORD to progress its rare disease biobank. Our intention is to improve research opportunities in New Zealand by the collection of material from a range of rare disease patients and their families and from healthy controls. We expect to complete our donation forms and seek ethical approval for this later this year. More detail about our biobank can be found at this link.

5 - Pneumococcal vaccine to be funded by government.

The government has announced that Prevenar vaccine for Pneumococcal disease will be available for all babies born from 1 January 2008. Based on experience in other countries, this vaccine will avoid significant mortality and morbidity in children in particular, and give indirect protection to adults through reduced transmission of the disease. NZORD is delighted to note this programme has finally been approved. The cost of this programme is high at $68 million over four years, or approximately $140,000 per case avoided each year, but we welcome the announcement and the investment in the health of our children. The government’s decision shows there are times when decisions must be made primarily on the basis of what is the right and ethical thing to do, rather than the narrow cost utility approach most often taken in other medicine funding decisions. We should perhaps be very grateful this decision came from government and was not one that sat with Pharmac to decide on. Experience shows us they would have been most unlikely to give a favourable decision. Click here for the Minister’s announcement. You can also read a Q&A sheet on the website of the Ministry of Health.

6 - NZORD’s submission on proposed changes to the Health Information Privacy Code.

Earlier this year the Privacy Commissioner released for public comment a proposed amendment to the Health Information Privacy Code. The amendment proposed a number of changes including circumstances where genetic information might be shared by health professionals with other relatives of an individual. The submission from NZORD was solely in respect of the “genetic relative” amendments to Clause 3(1), and the “genetic information” clause to be added to Rule 11(2). Read a copy of the draft amendment and explanatory papers on the publications page of the Privacy Commissioner’s website. Click here to read what NZORD submitted.

7 - Congratulations on Queen’s birthday honour for Dr Dianne Webster.

Dr Dianne Webster, Clinical Director of the Newborn Metabolic Screening Programme, has been awarded a Queen’s Service Order for services to public health, in particular paediatrics. Dianne has made an outstanding contribution to newborn metabolic screening and is highly regarded internationally for her work on the quality of newborn metabolic screening. NZORD extends its congratulations. This programme is of very great interest to NZORD for its beneficial impact on the health of babies. We know full well the dedication and energy Dianne has brought to the programme. In addition, NZORD has gained great support and mentoring from Dianne over the past seven years or more. Congratulations Dianne. You thoroughly deserve this honour.

8 - Newborn hearing screening programme gets rolling.

The first important steps occurred this month in getting newborn hearing screening set up for all New Zealand babies. Three District Health Boards with existing screening programmes are being brought into a single programme which will be rolled out across all DHBs over the next three years, with a complete national screening programme in place by July 2010. Congratulations to all the families and professionals who lobbied for this, and the officials who worked with them to win funding for the programme. Significant involvement from the Ministry of Education in the follow-up of this programme is another reason for celebration of good work done by all those involved in the programme. Read more about newborn hearing screening on the website of the National Screening Unit.

Regards, john

John Forman

Executive Director, NZORD

New Zealand Organisation for Rare Disorders

ENDS

Website: www.nzord.org.nz

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