Political parties back calls for a rare diseases policy   22 Aug 2014

Political parties back calls for a rare diseases policy

It is time for some optimism. There is now strong political support for our call for a government policy and action plan for rare disorders.

In response to our survey of the seven political parties in Parliament, the Greens, Labour, Mana and NZ First parties all offer positive support for the development of a government policy and action plan for rare disorders. Support is also indicated by United Future and the Maori party, but in less clear terms. National says this issue will be addressed in its health policy release in the next few weeks, but does not indicate what their stance will be.

Click here for the detailed responses from all the political parties to our manifesto questions.

This is a significant advance for the interests of tens of thousands of New Zealanders affected by a rare disorder.

When NZORD was being formed 15 years ago, we were like voices in the wilderness, with many people suggesting we were unlikely ever to get the attention to rare disorders that we were seeking. Now our issues and concerns are mainstream political issues for most parties, as well as being supported by most major stakeholders in the health and disability sector.

Our questions to the parties outlined six issues for priority action under the action plan. We are pleased to note we have positive responses from all parties to our call for improved investment in diagnostic capacity to ensure no undue delays in diagnosing rare diseases, and strong support for improved clinical care access and coordination across District Health Board boundaries to reduce the disadvantages often faced by rare disease patients and their families. All parties have also supported a review of respite care provision to remove barriers to its uptake and improve options for family carers to have some time for themselves.

Disappointingly, the questions about folic acid fortification to prevent neural tube defects, the need for an orphan drugs access policy, and problems with the carer payments policy, did not receive a positive response from the National party. NZORD has identified significant policy failures in those three areas and this was an opportunity for them to address these issues constructively.

The responses from United Future to the action point on folic acid fortification shows a surprisingly poor understanding of the issues and a disappointingly weak response.

But we are very pleased that our advocacy has resulted in widespread political support from most parties on most of the issues we presented to them. The Greens, Labour, Mana, Maori and NZ First parties have all provided strong support for most of our agenda items, while National and United Future have kicked for touch on some of these important issues.

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