NZORD Newsletter 2009 #3 - 24 December 2009

Hello everyone,

In this issue - Reflecting on 2009 - Some Good News and Some Bad:
1 - Good progress on medicine funding and access.
2 - A promising start on managed clinical networks.
3 - A disastrous outcome for fortification of bread to prevent Neural Tube Defects.
4 - The NZ Carers strategy - in limbo for now?
5 - Court action impedes important research on biological medicines.
6 - Meanwhile, in other parts of the world......

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1 - Good progress on medicine funding and access.
Given the tight economic circumstances during the year, there was great relief for NZORD and within the Access to Medicines Coalition when the government's budget provided the boost to medicine funding promised in the election campaign. Read the Minister's budget announcement [no longer available]. The increase of $40 million for the budget administered by Pharmac is the largest increase in dollar and percentage terms for over 5 years, but still very modest given the historic underfunding of medicines in New Zealand.

However this increase needs to be seen in the context of Pharmac successfully negotiating savings in excess of $150 million on medicines that recently come off patent. All that saving has been retained in the medicines budget, meaning that with the combined effect of new funds and savings, 9 new medicines were funded and access significantly expand to 55 more - the most significant boost to medicines access for a very long time.

The big question now is whether long-term funding for medicines will maintain this increase for the community pharmaceuticals budget, and continue the improved access to medicines that is so very much needed by New Zealand patients. We will watch future developments closely.

2 - A promising start on managed clinical networks.
More music to our ears was talk from the Minister of Health, and from the Ministerial Review Group that lead to the establishment of the National Health Board [no longer available], about managed clinical networks. NZORD has been pursuing similar concepts for some time, to improve clinical care for rare disorders. For so many years they have been consistently overlooked and neglected by all political and policy approaches within the health system.

Especially pleasing was a commitment made by the chair of the NHB, Murray Horn, to a special NZORD workshop about managed clinical networks held in November, that he would accept proposals for two pilot networks to be developed for rare diseases. We are thrilled that there is such ready acceptance to listen and act on issues presented to the NHB and we look forward to working on these in the New Year.

3 - A disastrous outcome for fortification of bread to prevent Neural Tube Defects.
One of the best researched and soundly based public health programmes ever devised, was derailed late in the year when the Food and Grocery Council and the Bakers Association ran a food safety scare campaign to avoid having to put folic acid into bread. Fortification of food with folic acid can prevent fatal or seriously disabling neural tube defects in newborn babies. This problem equates to about a classroom full of children each year. Folic acid fortification and associated work to improve dietary intake, could avoid a significant number of them.

NZORD and the patient and family groups we worked with on this issue, were distressed to observe the blatant manipulation of scientific data by the FGC and bakers, and a very poor standard of reporting by mainstream media on this topic, with TVNZ showing up prominently as the worst culprit. See details of our complaint to TVNZ on this topic.

Of equal concern to us was the government's response to this crisis. It provided an opportunity for the government and especially the Prime Minister to rise above the mis-information, criticise the bakers and media for their ill-informed campaign, and to reassure the public about the sound science and the safety of folic acid (vitamin B9) for the health of babies. Unfortunately raw politics prevailed, the easy exit of capitulation to ignorance was adopted, and the chance of statesman-like saving of a very important programme was lost.

NZORD will continue to pursue this issue, so watch for further developments in the New Year.

4 - The NZ Carers strategy - in limbo for now?
A lot of work by the New Zealand Carers Alliance produced a government strategy for carers in 2008, but it seems the change of government and the economic climate has resulted in the action plan for this slipping onto the back-burner. Although Minister Tariana Turia and the Prime Minister have provided messages of support for the strategy and for the role of carers, there have been few resources to back this up.

Despite this, the Carers Alliance will continue to work to achieve improved information and support for carers and through its secretariat, Carers New Zealand, is continuing its engagement with government and officials to improve policy and support systems.

5 - Court action impedes important research on biological medicines.
The complexities of approval processes and court action by a group of activists have frustrated AgResearch's plans to expand its Transgenic research programme [no longer available]. This has resulted in an appeal by AgResearch to a higher court and an application to ERMA to continue its existing transgenic programme beyond its last approval date.

NZORD is frustrated that ill-informed action can cause such delays to important scientific research. Many biological therapies need new methods to manufacture the complex biological compounds, if they are to be effective in treating human disease. Transgenics is one of the most promising production methods for producing the scale and complexity that is required, and already there are medicines developed in this way that have been approved for treating patients.

NZORD has submitted to ERMA in support of AgResearch's latest application and wishes them success in their court appeal.

6 - Meanwhile, in other parts of the world......
Both the United States and the European Union have provided examples of how to improve research and clinical care for rare disorders. The Council of the European Union endorsed recommendation from the EU's combined Health Ministers for an action plan [no longer avaialble] for rare diseases in all member states. It is such a delight to observe numerous European States working hard to produce such plans - apparently with none wishing to be left behind on these initiatives.

In the United States the National Institutes of Health launched a major support programme for rare and neglected disease research by launching the first integrated drug development pipeline within the NIH itself, in collaboration with academic researchers. This adds to a number of initiatives in the US to improve research and drug development for rare diseases.

Best wishes to all for the holiday season.

Regards, John

John Forman
Executive Director