Newsletter: Anxious wait for Folate decision

NZORD - the New Zealand Organisation for Rare Disorders

Hello everyone,

In this issue:
1 – Anxious wait for lifesaving decision about Folate in bread.
2 – Approval at last for pig-cell diabetes trial.
3 – Health Research Council 2009 funding grants.
4 – Health Ministry launches consultation on maternity action plan.
5 – Review panel for access to specialised medicines.
6 – Antenatal screening quality improvements.
7 – Managed clinical networks hold promise for rare disorders.

1 – Anxious wait for lifesaving decision about Folate in bread.
The plan to require addition of a B vitamin, folate, to bread to help prevent serious neural tube defects in babies, was put in jeopardy in May this year. The Bakers industry group lobbied hard for the new government to cancel the rule that would require this important public health measure from 1 September 2009. A decision is expected soon from Cabinet, and the Prime Minister John Key has taken a personal interest in this issue.

NZORD has written to Mr Key, and to a number of other politicians, seeking support for folate addition to bread. Estimates of the number of New Zealand babies who die or are seriously disabled each year by neural tube defects like spina bifida, range from 80 to 130. Most of these deaths or serious disabilities would be preventable by simply adding a trace of vitamin to replace what is stripped out of the wheat in the milling process. We have urged the government to stand by sound science and public health interests in their decision on this important issue. The Bakers’ selfish arguments lack moral or economic justification and should be rejected.

2 – Approval at last for pig-cell diabetes trial.
Health Minister Tony Ryall has finally given the go-ahead for Living Cell Technologies to proceed with their clinical trial of encapsulated pig-cell implants to help reduce insulin dependence in patients with Type 1 diabetes. Trials of this novel technology began in the late 1990s but were halted because of safety concerns.

Extensive research has found no good reason to further delay these trials and the company will be starting clinical trials in New Zealand within the next few months, adding to trials already under way in Russia. Early indications from both sets of trials show very promising results and NZORD is very pleased that this important research, which we have consistently supported, will soon be under way again in New Zealand. Further details are available at the website of Living Cell Technologies Ltd.

3 – Health Research Council 2009 funding grants.
The Health Research Council has announced grants totalling over $83 million for 70 contracts in its 2009 funding round. This is a very significant increase in health research funding, with levels over the past several years hovering around the $60 million mark, for fewer than 60 contracts.

Our cautious note in our previous newsletter about government investment in health research, called for government to give a boost to health research funding. In fact it has allocated an extra $8 million per year for four years, and the HRC’s recent allocation has anticipated some of that extra funding in its 2 and 3 year contracts, as well as releasing previously unspent funds.

Increases in other research areas such as Crown Research Institutes and the Marsden Fund provide evidence that government has recognised there are considerable individual, societal and economic benefits of continued investment in science and research. We are very pleased to note the funding commitment shown by government.

4 – Health Ministry launches consultation on maternity action plan.
The Ministry of Health has called for submissions on its maternity action plan. NZORD’s reading of this plan suggests that different interests in maternity care are being strongly encouraged, if not directed, to work in more co-operative ways to improve outcomes for mothers and babies. For too long the rivalries and tensions in the maternity sector have resulted in difficulties for some mothers and babies, with some avoidable but serious outcomes.

The risk of putting too much medical emphasis on the natural process of pregnancy and childbirth, has been a significant driver in maternity policy and practice in past decades. By contrast, the risk of not putting enough emphasis on medical needs and interventions, especially when things do not go so well, means too many women and their babies are exposed to avoidable harm. NZORD hopes this maternity action plan will ensure the balance is right. Submissions close 31 July 2009.

5 – Review panel for access to specialised medicines.
The government has appointed a review panel to report on access to high cost, highly specialised medicines. This results from a National Party promise which identified access to these medicines as a priority. The panel will consult with stakeholders and report to government by 31 March 2010 on practical and affordable means to improve this access.

The terms of reference for this panel include a review of Pharmac’s exceptional circumstances scheme and consider New Zealand’s access to these medicines in comparison to other OECD countries, as well as disadvantage that might affect certain patient groups. This gives some relief that important policy questions about access to innovative new medicines are finally being seriously addressed at a government level. Groups wishing to make a submission should contact Megan Simmons at the Ministry of Health.

6 – Antenatal screening quality improvements.
After many years of debate, reports and consultation, action is now under way to implement a range of quality improvement measures for antenatal screening. The National Screening Unit has responsibility for this initiative and has issued a request for proposals for laboratory services to report results of the various tests.

NZORD participated in the 2007 advisory committee and has closely monitored these developments. As recently as last month we continued submissions to the National Screening Unit to ensure the quality improvements implemented do actually provide the best information to expectant mothers, and comply with best practice for screening. We called for clear protocols to be in place to ensure laboratories report on all information relevant to risks to the mother or the baby, and that an advisory committee is established to guide the reporting process. We look forward to these quality improvements being implemented as soon as possible, for the health and wellbeing of mothers and babies.

7 – Managed clinical networks hold promise for rare disorders.
A continuing problem for many rare disorders is how to ensure the right clinical care in the face of some rigid boundary issues between District Health Boards, and between paediatric and adult services. For some disorders, the right “medical home” might be in specialist services rather than primary care, but our system struggles to cope with these differences. We do not always live in the area where the clinical expertise is, and many people affected by rare disorders may need ongoing coordinated specialist care in paediatric services, even when they become adults.

NZORD is heartened by recent discussion of managed clinical networks being developed to cut through the red tape and ensure the right expertise is provided to the right patients, in the right place. We have worked with a number of rare disease groups over the years to address these issues and develop models that would improve care delivery. We’ve also taken representations to the Health Minister and the Health and Disability Commissioner, proposing to them similar approaches to clinical care improvements. We understand the Ministry of Health is soon to let a contract for development work on these networks and we look forward to active participation in their development, and to reporting on progress.

ENDS

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