NZORD Newsletter 2015 #2 – 10 April 2015

NZORD - the New Zealand Organisation for Rare Disorders

Hello everyone,

In this issue:
1 – Latest figures show family care payment policy is seriously flawed and needs urgent review.
2 – Is there room for optimism about progress with the orphan drugs fund?
3 – World Birth Defects Day highlights New Zealand’s lack of progress with prevention of neural tube defects.
4 – When is an action plan not an action plan? Carers strategy action plan falters.
5 – NZORD submission to the Productivity Commission on more effective social services.
6 – Recommended reading – Diagnosis Rare Disease, by Denise Crompton.


1 – Latest figures show family care payment policy is seriously flawed and needs urgent review.

Official figures released this week on the uptake of funding for families caring for disabled adult children, show the policy has been a massive failure. Only 187 families received funding in the first 12 months of the new scheme, way below the intended figure of 1600. In addition, only about 10% of the allocated $23 million was spent, and new approvals seem to have tricked almost to a halt.

The Carers Alliance strongly criticised the criteria and allocation rules when they were being developed over two years ago. Read our earlier commentary. Our advocacy resulted in a review being commenced immediately after the September 2014 election, but over 6 months later there is still no outcome from that. Worse still, the exclusion of family care representatives from the development of the original policy and access rules, and the lack of effective engagement in the current review, shows once again that families are marginalised and patronised. The Alliance has called for senior government Ministers to urgently intervene to fix this totally unsatisfactory situation.

2 – Is there room for optimism about progress with the orphan drugs fund?

NZORD has been very cautious of the orphan drugs fund set up by Pharmac. We had been suspicious of motives that produced this fund in the lead-up to an election, yet provided a seriously inadequate funding level to address the unmet need. Previous commentary can be found here. Recent feedback suggests that negotiations with some companies are proceeding, with an expectation of some orphan drugs being funded from 1 July this year. We remain sceptical but have a wee glimmer of optimism that for the first time in over 15 years we may get an orphan drug onto the pharmaceutical schedule in New Zealand. Watch this space.

3 – World Birth Defects Day highlights New Zealand’s lack of progress with prevention of neural tube defects.

In early March this year a network of 12 global health organisations launched the first World Birth Defects Day, to highlight the need for concerted action to prevent loss of life and serious health consequences, and provide the best care and support for affected babies and their families. Read more about this network here.

Meanwhile, many good efforts within New Zealand’s health system for prevention, treatment and care for birth defects are seriously undermined by government inaction to prevent neural tube defects which can be avoided by the addition of vitamin B9 to a staple food. Read our commentary on how government has abandoned its responsibility for this important public health policy. NZORD will soon have a meeting with the Minister of Food Safety to discuss this problem and will report on the outcome of that meeting in a future newsletter.

4 – When is an action plan not an action plan? Carers strategy action plan falters.

We have it on good authority that when the government changed in 2008, some officials expressed delight that they would no longer have to deal with the Carers Strategy. Does that explain the rather token action plan that has been in place in the last 6 years and the weak and half-hearted responses to it from officials across a number of government agencies, including Health, Education, ACC, MBIE and Social Development. Perhaps the new Minister with responsibility for the Carers Strategy, Maggie Barry, might be motivated to breathe some life into the current very modest action plan to ensure the strategy has at least some meaning and impact on the lives of carers. Prime Minister John Key once describe carers as “unsung heroes”. Let us hope they do not continue to be actively neglected as well as unsung.

5 – NZORD submission to the Productivity Commission on more effective social services.

Late last year the Productivity Commission launched a consultation on More Effective Social Services, with a strong emphasis on the process of commissioning and delivery of services that include essential health and disability support. NZORD submitted with a message that it is the underlying philosophy and ideology underpinning the services that needs close scrutiny and evaluation, not just the process of funding and contracts for delivery. We also emphasised the relative neglect yet huge burden and costs associated with rare diseases, and the need for an action plan to address them. Read our submission here. The Commission’s report is expected about July this year.

6 – Recommended reading – Diagnosis Rare Disease, by Denise Crompton.

Denise Crompton’s book of her family experience of a very rare disease, is certainly no ordinary story. It will have value to families with a variety of rare diseases, and to many health professionals as well. Denise had woven her experience as a nurse, a social worker, and a mother, into a very informative story of their journey with daughter Kelly’s life with Mucolipidosis type 3.

Branching out from her own family’s experience, Denise draws information from 12 other families around the world who have children diagnosed with Mucolipidosis, and brings their similar experiences together under useful and instructive heading that include the diagnostic odyssey, the journey through the health system, medical management, finding support, education challenges, and saying goodbye. Diagnosis Rare Disease is published by All Star Press and is available in paperback and electronically from Barnes and Noble.

Regards, john