NZORD Newsletter 2010 #4 - 9 November 2010

Hello everyone,

In this issue:
1 – National Health Board funds specialist nursing service.
2 – NZORD 10 year celebration at the Beehive.
3 – Ministry of Health considers controls on natural health products.
4 – Pharmac consulting soon on exceptional circumstances scheme for funding medicines.
5 – Tobacco control measures announced by government.
6 – Does your support group need a website, or an upgraded one?

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1 – National Health Board funds specialist nursing service.
NZORD is delighted with the recent announcement of a specialist nursing service for people affected by the rare skin-blistering disease Epidermolysis Bullosa, known as EB. We worked closely with the EB support group, DEBRA NZ, and the National Health Board, to address a funding crisis for this service and secure the continuation of these vital outreach services. For eight years DEBRA NZ has provided most of this nursing service through fundraising activities but the economic downturn and a severe decline in charitable funds available, meant the service was at risk of closure.

This decision is an important early achievement for the National Health Board. Its role in relation to services that need national planning and funding was a critical factor in rescuing this extremely vulnerable service. The NHB cut through the impenetrable silos of multiple District Health Boards to ensure an effective and sustainable national solution.

2 – NZORD 10 year celebration at the Beehive.
Yes, it is 10 years since our inaugural conference that saw the birth of NZORD as an umbrella network to work on rare disease information, policy issues, promotion of research, and service improvements. His Excellency The Rt Hon Sir Anand Satyanand, Governor General of New Zealand, officiated at our 10 year birthday celebration at a function held in the Beehive late last month. The celebration was jointly held with DEBRA NZ who were celebrating their 30th birthday. The announcement at the function of funding for their specialist EB nursing service was an exciting highlight of the evening.

3 – Ministry of Health considers controls on natural health products.
This is an area that needs specific attention. Regular reports of contaminated products, or some that have had chemicals illegally added to them, are a matter of great concern for consumer safety. As a result of a political agreement between the National party and the Green party, the Ministry of Health is considering draft legislation on the regulation of natural health products. Consultations were held earlier this year on the content of legislation and a report on the shape of the draft legislation is expected before the end of this year. Here is the link to NZORD’s submission to the Ministry.

4 – Pharmac consulting soon on exceptional circumstances scheme for funding medicines.
A review of the exceptional circumstances scheme looks the most likely way that access to highly specialised medicines will be delivered to New Zealand patients. The final report from the panel appointed to advise the Minister on how to improve access to high-cost and highly specialised medicines, was a considerable disappointment, taking a very wide view of the whole health sector but failing to provide the practical measures asked of the panel. However they did note that a revised exceptional circumstances scheme might be an appropriate avenue to consider funding these medicines.

The Minister of Health has recently made two announcements relevant to this issue. Tony Ryall noted the panel’s report and announced that decisions on improved access to high cost medicines are expected before the end of this year. He has also announced that Pharmac will conduct a review of the exceptional circumstances scheme. Formal consultation on this is expected soon.

NZORD is working closely with groups in the Access to Medicines coalition to ensure our views are made know. We are optimistic that continued controversy about New Zealanders’ limited access to innovative medicines, coupled with the election promise of improved access, might provide us with better decision criteria and a realistic budget for these specialised medicines.

5 – Tobacco control measures announced by government.
Recent decisions by government
will toughen up rules for tobacco sales, including prohibiting retail display of the products. The new rules have been endorsed by Cabinet but will require changes to legislation before they take effect. Government stopped short of additional steps that could have resulted in even greater reduction in the massive burden smoking puts on our health system, but the steps are very positive, and in the right direction.

In May this year NZORD made a submission to the select committee reviewing tobacco health effects, calling for tougher controls on the product that effectively blocks rare diseases from an equitable share of health services. We are pleased to see some policy changes in the direction we advocated.

6 – Does your support group need a website, or an upgraded one?
NZORD provides more than 30 websites for rare disease support groups and related networks in the health and disability sector. We are offering more website to groups who do not have one, or whose existing website needs a makeover or a more up-to-date content management system. Charitable grants enable us to offer quality sites at no cost to small groups. Contact us if your group is interested.

Regards, John.

John Forman
Executive Director