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NZORD Newsletter 2006 #3 -- 11 May 2006

NZORD - the New Zealand Organisation for Rare Disorders

In this issue:
1 - 2006 Genethics competition for secondary school students.
2 - Good news for rare disorders in Medicines Strategy announcement.
3 - NZORD submission on Direct-to-Consumer Advertising of prescription medicines.
4 - Amended link for International Genetic Alliance position statement on rare diseases.


1 - 2006 Genethics competition for secondary school students.
For the third year running NZORD, the Bioethics Council and the Royal Society are joining forces to bring the Genethics competition to NZ secondary schools. This year the focus is newborn metabolic screening. Part of the essay will require students to explain the science, genetics and decision-making processes involved in the screening programme, but they will also need to research and discuss age-old questions associated with screening of babies with the Guthrie Card test: Babies’best interests or mothers’ choice? Which should prevail?
The topic is very timely as there is new technology expanding the capability of newborn metabolic screening and important decisions will be made about the screening programme this year. As we gain greater capacity with such programmes it is wise to revisit the ethical and consent issues, which are crucial elements in all screening programmes. Read more at the Royal Society website for competition criteria and scenario. The scenario is also in the News and Issues section of the NZORD website.

2 - Good news for rare disorders in Medicines Strategy announcement.
The government’s announcement just before Easter of a timetable for the development of a Medicines Strategy for New Zealand is very good news indeed for rare disease patients and their support groups. This announcement fulfils a promise in the post-election confidence and supply agreement between United Future and Labour. We are very pleased to see specific mention in the announcement of a focus on “access to new/innovative/high cost medicines (especially those for niche groups e.g. rare diseases)”. A lot of hard work over many years has paid off with this specific inclusion in the review. Consultation on the strategy should be completed in early 2007 with decisions expected soon after that. Click here for the press release from the Associate Health Minister.

The best news is that the process will not focus all its attention on Pharmac. There is much more to the subject of medicine access than simply rationing the pharmaceutical budget, yet that has been the dominant issue for many years now. The new strategy process indicates a refreshingly open approach to a broader range of issues and NZORD will be working closely with the Access to Medicines Coalition to ensure ethical considerations, legal rights, public law obligations, standards of care and professional best practice, are all factored into the mix. We’ll also be urging government to maintain a high-level interest in the setting of standards and strategies for the benefit of society, and resist the temptation for them to be overly influenced by the conflicting interest in keeping expenditure as low as possible.

3 - NZORD submission on Direct-to-Consumer Advertising of prescription medicines.
The Ministry of Health’s consultation process on DTCA closed early this month. This was not such an easy topic to submit on. It is not clear whether this issue is a matter of concern for support groups, or what the consensus view might be, so a number of open-ended observations were made based on past discussions with various support group leaders. Click here to read the submission from NZORD.

4 - Amended link for International Genetic Alliance position statement on rare diseases.
Whoops, it just happens from time to time. Our last newsletter included an invalid link to this document. Click here to read the position statement of the International Genetic Alliance on rare diseases. NZORD played a key role in the development of this paper. We hope that support now given by similar organisations in over 30 countries will improve our chances of achieving some of these objectives here in New Zealand, as well as improve opportunities in other countries.


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