NZORD Newsletter 2010 #3 - 4 June 2010

Hello everyone,

In this issue:
1 – National Health Board hits the ground running with several important initiatives.
2 – Submission to Maori Affairs select committee on tobacco use.
3 – Panel report on high-cost medicines very disappointing.
4 – Submission to health select committee inquiry into innovation and clinical trials.
5 – Victory at last for AgResearch Transgenic research.
6 – Missed a newsletter?

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1 – National Health Board hits the ground running with several important initiatives.
After decades of frustration with bureaucratic delays in the health sector, and frequent postponement of plans to improve services for rare diseases, we seem to have at last found common sense and prompt decision making in the new National Health Board.

Though only formed for about 5 months, the NHB has already ticked off plans for national planning and funding of genetic services, and major service improvement initiatives for neurosurgery and paediatric oncology. The NHB has also authorised a much needed rejig of how funding of pre-implantation genetic diagnosis is managed, and set in place a plan to secure a number of vulnerable paediatric specialty services. An official announcement of these initiatives is expected soon from the NHB.

2 – Submission to Maori Affairs select committee on tobacco use.
NZORD pulled no punches on this topic. Tobacco use produces huge negative health impacts, puts a huge burden on our health system, and is one of the prime reasons that rare diseases are so often languishing on priority lists in terms of diagnosis, clinical care, disability support, and medicine access. Smokers are not just killing themselves, they are killing us and our kids too, by denying fair health care to many with rare disorders.

Our submission calls on the select committee to consider a change to the “legal product” status of tobacco, as an essential step in controlling the harmful effects of tobacco. Read more here.

3 – Panel report on high-cost medicines very disappointing.
The Ministerial panel set up to report on access to high-cost medicines, and provide advice on practical and affordable ways to improve this access, has provided its final report to the Minister of Health. The report did offer useful suggestions about some aspects of the medicine system in New Zealand. But the high hopes of many support groups for helpful guidance on the core issue of access to high-cost, highly specialised medicines, were dashed when the panel took an unusually wide perspective, to canvass many other aspects of the health system.

This divergence from the core questions they were asked to report on, did no go quite as far as producing a formula for world peace, but does mean they did not answer the core questions adequately. Their analysis of the ethical issues was poorly prepared and inadequately concluded. NZORD will convey our disappointment directly to the Minister, along with our own suggestions for practical solutions to this long-standing problem.

4 – Submission to health select committee inquiry into innovation and clinical trials.
NZORD is pleased to see this initiative by the health select committee to inquire into the promotion of innovation through clinical trials. Our submission to the committee addresses a number of issues that may help or impede this objective, and asks that there is a concerted effort to improve research opportunities through clinical trials. Read more at this link. Our oral presentation to the committee emphasised innovation is needed across the whole of the health sector and focusing heavily on clinical trials would be too narrow an approach to health sector innovation.

5 – Victory at last for AgResearch Transgenic research.
Two recent decisions allow AgResearch to make progress with important research on Transgenic animals. In March the Court of Appeal allowed ERMA, the Environmental Risk Management Authority, to consider a broad-ranging application from AgResearch to do Transgenic research on a range of animals. Read commentary and the Court ruling in “Griffins Gadgets” on the Sciblogs website. In April, ERMA gave approval for a further 20 years of AgResearch’s existing Transgenics programme to genetically modify goats, sheep and cows [link no longer active] to produce human therapeutic proteins. Read more about NZORD’s submission supporting AgResearch’s plans.

There is likely to be more legal action from opponents to try and impede this research, but the indications are positive from the cumulative effect of these and other decisions, plus guidance from bodies such as the Royal Commission on Genetic Modification and the former Bioethics Council, that this important research will be able to continue.

6 – Missed a newsletter?
Check out the newsletters index page on our website to find back issues from 2004.

Regards, John

John Forman
Executive Director