Tuesday, September 4, 2012

Spina Bifida NZ Disappointed by Folate Decision

Spina Bifida NZ Disappointed by Folate Decision

Spina Bifida New ZealandFriday 31 August 2012, 11:08AM Media release from Spina Bifida New Zealand

The Minister of Food Safety, Kate Wilkinson today announced her decision not to introduce mandatory folate fortification into New Zealand, despite this being international best practice in 75 other developed and developing countries.

Submissions to the Ministry of Primary Industries that favoured mandatory fortification were received from professional medical associations, doctors and families affected by a neural tube defect (NTD) pregnancy. Submissions favouring voluntary fortification were received from individual consumers, industry associations and individual bakery firms.

In the Ministers briefing paper to Cabinet1 New Zealand had an average rate for Neural Tube Defect (NTD) affected pregnancies of 12.9 per 10,000 births from 2005-2009. This equates to 80 NTD affected pregnancies per year based on 19 live births, 14 stillbirths and an estimated 47 pregnancy terminations.

  http://www.foodsafety.govt.nz/elibrary/industry/fortification-bread-folic-acid/2012-cabinet-paper-folic-acid.pdf

The decision taken today must mean that the Minister and the New Zealand Association of Bakers place no value on the lives of 61 babies lost and the impact that this has on their immediate and extended families. If two buses crashed and 61 children's lives were tragically cut short, as a country we would honour their lives with a national day of mourning. The real tragedy is that these little lives are being lost quietly, out of public (but not private) view, and are seen as disposable.

As a society, we are unable to demean disabled people by parading physically deformed babies before the public or film the pain the parents feel as they watch their baby being terminated to demonstrate the trauma and conflict that a NTD diagnosis causes. It is the unborn babies and those yet to be conceived who will pay the price for this decision when their lives are cut short and terminated because they are diagnosed with having a Neural Tube Defect (including Spina Bifida).

The New Zealand Government needs to acknowledge that the termination of an NTD affected pregnancy following prenatal diagnosis is not part of their preventative strategy. Folate plays a key role in preventing NTDs for women planning a pregnancy, but in New Zealand 50% of pregnancies are unplanned. Folate also plays a key role in other key areas of health, improving cognitive function in the elderly, development of speech language and prevention of cleft lip and palate and is required for cell division and repair. Folate fortification has health benefits for all of society. These benefits not only have an impact on the health budget but on the lives of everyday New Zealanders.

An eminent Canadian doctor, Dr AGW Hunter said that "we need to feel a sense of responsibility and failure every time a baby is aborted because of an NTD, or a child is born with this preventable disability". The decision announced today contravenes the United Nations Convention on the Rights of the Child (UNCRC Discussion 6 October 1997). The NZ Government has a legal responsibility to protect children from disability before birth and all circumstances which might result in disability at the time of birth.

SBNZ only hopes that the Minister and the New Zealand Association of Bakers will now bear that responsibility on their shoulders and that parents of babies diagnosed with Spina Bifida are given access to the MOH High Cost Treatment Pool to access prenatal surgery internationally.

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