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.
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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
ENDS