NZORD - Newsletter June 5

NZORD - the New Zealand Organisation for Rare Disorders

In this issue:
1 – Folic acid fortification of bread is on the agenda again.
2 – Submission on proposed changes to the Health Information Privacy code.
3 – NZORD asks Health select committee to investigate anomalies in medicine funding policies.
4 – Submission to Pharmac on funding access criteria for special foods.
5 – Improvements to paediatric palliative care services under way.
6 – A national clinical genetics service, at last.
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1 – Folic acid fortification of bread is on the agenda again.
The Food Safety division of the Ministry for Primary Industries has released a consultation document about fortification of bread with folic acid to prevent neural tube defects. It is estimated that an effective fortification plan could avoid 30 to 33 cases of anencephaly and spina bifida in New Zealand each year, but in 2009 the addition of folic acid to bread was derailed when a campaign of deliberate misinformation led to a postponement of the fortification plan.

Since 2009 a voluntary fortification policy has been in place, but estimates of its impact indicate it has not been very effective in reducing incidence of these conditions, achieving at best a reduction of 9 or 10 cases per year, leaving a lost opportunity of about 20 to 24 more preventable cases that still occur

NZORD is participating in a working party that includes professionals, family health interests, and baking industry working with Food Safety, with all parties committing to a consultation process that focuses on sound science as the guiding factor. Submissions close on 16 July 2012. Read the consultation document, technical papers and media briefings at this link on the Ministry’s website.

This is an important chance to improve the health of babies and prevent another death or serious disability from neural tube defects every 2 to 3 weeks. Send NZORD your comments to include in our submission, or make your own submission direct to Food Safety at the Ministry.

2 – Submission on proposed changes to the Health Information Privacy code.
The Privacy Commissioner has consulted on proposed changes intended to coincide with pending privacy legislation. NZORD submitted in respect of particular points in this paper relating to disclosure of health information in situations of risk, and relating to information regarding blood spots stored on Guthrie Cards from newborn metabolic screening. Read our submission providing support for the changes but raising some procedural matters for consideration.

3 – NZORD asks Health select committee to investigate anomalies in medicine funding policies.
The current Medicines Amendment Bill is mostly about technical matters relating to registration of medicines and prescribing rights, but we took the opportunity to address the committee about serious anomalies in medicine funding policy. Click here for our submission. We managed to keep this issue alive when the committee Chair, Dr Paul Hutchison, invited us to write to the committee with further information for their consideration, about inbuilt disadvantage for rare disorders, and the failure of Pharmac’s new exceptional circumstances scheme to deal with these issues.

4 – Submission to Pharmac on funding access criteria for special foods.
Changes made by Pharmac last year to subsidies for prepared liquid food for those with special dietary requirements, led to particular disadvantage for patients with Epidermolysis Bullosa and Cystic Fibrosis. Pharmac’s recent consultation on subsidies for the powdered form of special foods provided the opportunity for us to provide additional information to support the reinstatement of subsidised access to liquid special foods for these patients, and by implication to any other patient groups with similar problems and risks associated with the powdered form. Click here for NZORD’s submission.

5 – Improvements to paediatric palliative care services under way.
Another positive step forward in improving services for children and young people with life limiting and life threatening diseases, has occurred as a result of recent initiatives in the Ministry of Health and the Paediatric Society. Late last year the Ministry completed a review of paediatric palliative care services. Click here for NZORD’s submission to the Ministry review. Now the Paediatric Society is supporting the development of a clinical network across New Zealand to improve the availability of such services in every region, along with improved links to specialist advice. NZORD is very pleased to have contributed information to the consultation process, and provide support to the development of the clinical network.

6 – A national clinical genetics service, at last.
It is nearly 30 years since the first report was written about the need for a single national service for clinical genetics in New Zealand. Other reports followed at regular intervals and NZORD has participated in at least 3 reviews over the past 12 years. Now it has happened, at last. Genetic Health Service NZ is the branding for the new national service. It will operate out of 3 hubs: Northern, Central and South Island, with outreach clinics across the country and consultancy services.

NZORD is delighted this new service has finally been established after such a long hard slog. We are certain that the intervention of the National Health Board and the removal of the decision from the District Health Boards’ brief, was the critical factor in getting this new national service in place.

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