NZORD Newsletter 2008 #3 - 9 September 2008

Hello everyone,

In this issue:
1 - Patients and support groups betrayed by DHBs and Pharmac actions on medicine strategy.
2 - Request for copies of incidence, risk, or economic impact studies on long-term (chronic) conditions in New Zealand.
3 - National Screening Unit to lead on quality improvements to antenatal screening.
4 - Mandatory fortification of bread with iodised salt - an important public health step for disease prevention.
5 - International Alliance of Patients' Organisations - a chance to be involved.
6 - 2008 Genethics competition - Entries not up to standard this year.
7 - Submission to National Health Committee on Living Cell Technologies clinical trial.
8 - Two important new vaccine initiatives, but worries about vaccine coverage rates for childhood vaccinations.
9 - NZORD supports AgResearch plans to continue Genetic Modification programme.

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1 - Patients and support groups betrayed by DHBs and Pharmac actions on medicine strategy.
The Access to Medicine Coalition has responded to this year's budget allocation for medicines, calling it the nail in the coffin of the government's medicines strategy. This has occurred only nine months since the strategy's launch and optimistic welcome by our coalition, yet in that brief time there has been significant and deliberate failure on the part of DHBs and Pharmac to comply with the principles set out in the strategy. Read more about this betrayal of support groups' investment in and commitment to the consultation process on the website of the Access to Medicines Coalition.

2 - Request for copies of incidence, risk, or economic impact studies on long-term (chronic) conditions in New Zealand.
The Ministry of Health is leading work on a Long-Term Conditions Framework for New Zealand. Does your group have any studies on incidence, economic impact, risk factors, and other matters relevant to this work? In particular, do you have any unpublished reports that may not be easily found via online database searches? If you'd like your material included in the summary of economic impacts of long-term conditions (whether rare or common) please send copies to Richard_Jaine@moh.govt.nz.

3 - National Screening Unit to lead on quality improvements to antenatal screening.
Over recent years there have been reports and reviews on antenatal screening practices and the need for improvements in how this screening is carried out. A 2007 report from an advisory group to the National Screening Unit recommended a national screening programme to improve the quality and safety of screening offered for Down syndrome. In late 2007 Cabinet decided to fund improvements to antenatal screening, including funding of a second trimester maternal serum test from August this year, but not as part of a formal screening programme. Instead the National Screening Unit will plan, coordinate and monitor a range of quality improvements to existing screening practices.

It seems we will have most of the features of an organised programme without it being called a programme, but improved potential for the screening work to look at wider issues such as neural tube defects, skeletal anomalies, and more. The 2007 report had a narrow focus on Down syndrome that was driven by the NSU's approach to screening criteria. This constrained the wish of many on the advisory group to include other foetal anomalies that may be identified in the antenatal period. Perhaps now we are, by a very circuitous route, back to where we should have been. The quality improvements can and should address a range of items relevant to the health of the mother and baby that the advisory group would have preferred to address, rather than a narrow and unfortunate emphasis on Down syndrome alone. Read more background detail from the website of the National Screening Unit.

4 - Mandatory fortification of bread with iodised salt - an important public health step for disease prevention.
New regulations will require bread manufacturers to ensure iodised salt is used in most bread making from September 2009. This step will help reduce the incidence of thyroid disease which occurs when iodine levels in the diet are inadequate. This is a growing problem in New Zealand because of generally reduced levels of salt intake and because vegetables, fruits and grains grown in NZ have lower iodine levels than in other parts of the world. More information about this is available from the website of the NZ Food Safety Authority.

5 - International Alliance of Patients' Organisations - a chance to be involved.
Is your group interested in direct involvement in IAPO? NZORD participates in this organisation and has provided feedback on a number of consultation documents they have produced as part of their global work on issues such as paediatric medications, intellectual property and medicines, revision of the Declaration of Helsinki, and collaborating with the World Health Organisation on the Patients for Patient Safety initiative. To date most of IAPO's work has been focussed in Europe and North America, but they are seeking to expand their support and contacts in the Asia-Pacific region. Find out more from the IAPO website or email their membership team at membership@patientsorganizations.org for details of membership criteria and subscriptions.

6 - 2008 Genethics competition - Entries not up to standard this year.
We though the topic would be a winner - "design a poster about designing a child" - especially after the Bioethics Council report raised the debate about determining the gender of a child, while entries were still open. But this year's entries in our Genethics competition were disappointing and none met the standard expected of the judging panel. Perhaps the poster format was a bit of a hurdle for the "tech" generation? We have decided, in conjunction with our sponsors the Royal Society and the Bioethics Council that no prizes will be awarded this year. Watch this space for details of next year's competition, probably back to essay format.

7 - Submission to National Health Committee on Living Cell Technologies clinical trial.
Earlier this year the Minister of Health asked the National Health Committee to report on the proposed clinical trial by Living Cell Technologies using transplantation of pig islet cells to human patients with diabetes. As part of its task the NHC called for submissions. NZORD has supported the scientific investigations into this technology over a long period of time, including through a Bioethics Council investigation of the issues involved, and a period of moratorium while specific safety concerns were investigated. You can read our latest submission to the National Health Committee in support of the clinical trial proceeding.

8 - Two important new vaccine initiatives, but worries about vaccine coverage rates for childhood vaccinations.
Vaccines continue to be one of the most effective preventions against death and serious health impacts from diseases, with the World Health Organisation estimating around two million lives saved worldwide each year. New Zealand's commitment to best use of vaccine opportunities has been maintained by recent decisions to fund pneumococcal vaccine, and HPV vaccine for prevention of cervical cancer. These add to the schedule of standard vaccines offered to help protect children and young people from serious infectious diseases.

However there is reason for concern at limited uptake of vaccines in New Zealand, and particularly in the standard childhood vaccinations. For many diseases it is important to achieve vaccination coverage of around 95% to minimise risks of an outbreak and to provide protection for those whose poor immune system indicates against vaccination. It may be complacency or lack of community experience of these diseases, but recent figures from the National Immunisation Register show as few as 76% of children fully vaccinated at 2 years of age. A recent outbreak of measles in Canterbury highlights how these diseases can unexpectedly occur and how important it is to keep up to date with all the recommended vaccinations.

9 - NZORD supports AgResearch plans to continue Genetic Modification programme.
AgResearch has been working on experimental transgenic work in cows for several years now, and is asking ERMA, the Environmental Risk Management Agency, for approval to continue its programme and expand into other animal species. NZORD has consistently supported this research as a potential for improved therapy options for complex metabolic diseases. If successful in producing the right recombinant enzymes, transgenic technology offers potential for improvements in the quality of enzymes produced and savings in the cost of production. Read NZORD's 2002 submission to ERMA on an earlier AgResearch application. Click here for the chapter written for the Bioethics Council's 2004 discussion document on transgenics.

Regards, John

John Forman
Executive Director