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NZORD Newsletter 2006 #5 -- 18 September 2006

NZORD - the New Zealand Organisation for Rare Disorders

Hello everyone,

In this issue:

1 - Folate fortification of food is close to a decision.
2 - Proposal to increase iodised salt in commercially baked foods.
3 - Action at last on the Genetic Services report.
4 - Welcome arrival of first PGD babies.
5 - Progress from Pharmac on Growth Hormone Treatment for Prader-Willi Syndrome.
6 - Recent NZORD submissions on guidelines for imported stem cell lines and human tissue research.
7 - Another successful Genethics competition for secondary school students.


1 - Folate fortification of food is close to a decision.

Congratulations to Lyall Thurston, past President of CCS New Zealand, for his many years of leadership and persistent lobbying on this topic. We are now close to the final decision on fortification of food with the vitamin supplement folic acid (folate). Food Standards Australia New Zealand has completed its consultation and prepared a report for the Australian and New Zealand Ministers’ Council recommending folate supplementation of bread products across both countries. Implementation of this important public health measure is expected to significantly reduce neural tube defects in newborn babies in both countries, with perhaps as many as 60 cases avoided each year. The recommendation will be considered by the Ministers in October. Click here for the FSANZ report. You can click here to read NZORD’s submission.

2 - Proposal to increase iodised salt in commercially baked foods.

Hot on the heels of the folate recommendations, FSANZ is seeking feedback on a proposal to ensure an increased level of the trace element iodine is included in baked food. Iodine deficiency can lead to serious health problems. The well established method of supplementation, iodised salt, is having less impact because of changes in dairy industry practices and changing dietary patterns in the community. You can read a New Zealand Herald article about iodine, or see the detailed proposal from Food Standards Australia New Zealand at this link.

This is an important public health measure to avoid serious preventable diseases in people of all ages but particularly in vulnerable infants and children. NZORD is pleased to note the thorough assessment of all possible benefits and risks by FSANZ, and the careful manner in which it proposes to implement this policy, including ongoing monitoring.

3 - Action at last on the Genetic Services report.

It is three years this month since the National Health Committee produced its report identifying the urgent need to upgrade the genetic services in our health system and increase their capacity. In our last newsletter we reported on our meeting with Health Minister Pete Hodgson and his positive response to our call for prompt action to implement this report. DHB New Zealand, the coordinating agency for the District Health Boards, has now set up an expert group to prepare for the improvement to genetic services. We are delighted to see this progress, despite the huge delay, and despite the lack of consumer representation indicated by the Minister at our meeting in May. Let us hope that progress from now on is significantly faster than it was in the past.

Some serious commitment is needed to overcome inadequacies in present services, and to deliver modern, accessible and safe laboratory and clinical genetics services to the New Zealand population.

4 - Welcome arrival of first PGD babies.

Just one month ago the first “New Zealand made” pre-implantation genetic diagnosis babies, twins, were delivered to a North Island mother. Some New Zealand families do have PGD babies from procedures carried out in other countries, but this is a very special milestone for all those who have worked hard over the years to get in place the necessary law, expertise and guidelines to enable the procedure to take place here in New Zealand. This New Zealand Herald article gives details of the announcement, including news that at least four more PGD pregnancies are in the pipeline.

5 - Progress from Pharmac on Growth Hormone Treatment for Prader-Willi Syndrome.

Congratulations to Linda Thornton of the Prader-Willi Syndrome Association for showing such tenacity and endurance for so many years in advocating for access to Growth Hormone Treatment for patients with PWS. This month Pharmac has consulted on criteria for access to GHT by this patient group and a positive decision is expected from the Pharmac Board in the near future. Linda has been pushing for at least 4 years, probably more, to get fair access to this treatment which is so important in improving the health and quality of life of PWS patients. Now that the decision is imminent it is worth questioning why it took Pharmac so many years to respond adequately to the needs of this very small patient group. And why did it require mediation by the Human Rights Commission before they dropped a discriminatory clause about intellectual disability from their earlier access criteria for GHT?

Another long standing case - where Pharmac caused extreme delays in responding to expert recommendations for dose increases for three Gaucher patients - was finally resolved late in 2005 after more than three years on their agenda. It seems some historical anomalies are finally being addressed. That is very good news for now, but highlights a particular issue that will need to be addressed in the government’s new Medicine Strategy, that is, respecting the dignity of patient groups (even the smallest and rarest) by ensuring timely responses to submissions and providing well reasoned decisions within a reasonable timeframe.

6 - Recent NZORD submissions on guidelines for imported stem cell lines and human tissue research.

NZORD continues to monitor all calls for submissions on health and disability issues and aims to ensure the interests of those affected by rare disorders are put forward for consideration. In recent months we have submitted on two important topics. You can follow these links to read our submission on guidelines for using cells from established human embryonic stem cell lines for research, submitted to the Ministry of Health in March 2006, or our August 2006 submission on guidelines for use of human tissue for future unspecified research.

7 - Another successful Genethics competition for secondary school students.

The third annual Genethics competition attracted in excess of 70 essays from around New Zealand. Sponsored by NZORD, The Royal Society and the Bioethics Council, this year’s topic was newborn metabolic screening. The scenario students had to comment on was: Babies’ best interests or mothers’choice? Which should prevail? The quality of essays and presentations at the final judging were all of a very high standard. This year’s winner is Sasha Srivastava from Otago Girls’ High School. You can read her essay at this link. NZORD is pleased to be part of a competition which gets students actively thinking about the ethical issues involved with genetic information and technologies.

Regards, John

John Forman
Executive Director, NZORD
New Zealand Organisation for Rare Disorders


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