NZORD Newsletter 2009 #1 -- 23 March 2009

NZORD - the New Zealand Organisation for Rare Disorders

NZORD Newsletter 2009 #1 -- 23 March 2009

In this issue:

1 – Obama leads the way with massive boost to health research funding.

2 – Health Research Council struggles to divide the NZ health research cake equitably.

3 – Rare diseases getting high priority attention in many countries.

4 – Participants wanted for research on experience of genetic services.

5 – Medsafe warnings on unsafe and counterfeit medicines.

6 – The demise of the Bioethics Council.

7 – Wrong diagnosis emerging as a major cause of poor health outcomes.

8 – Major newspaper gets significantly confused about embryo research advice.

9 – Updated Ministry fact sheet on folate fortification of bread.

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1 – Obama leads the way with massive boost to health research funding.

President Obama has provided a hugely significant boost to science and health research by granting over US$10 Billion to the National Institutes of Health under the American Recovery and Reinvestment Act 2009. This is equivalent of about 30% of the NIH annual budget and it is all to be spent by September 2010. The majority of these funds are for health research projects with a limited portion for equipment and infrastructure for health research.

This boost will help restore US health research funding that had declined in relative terms over the previous eight years, and should lead to immediate approvals of many quality projects that were just below the line when available funds were last allocated, as well as a burst of new research initiatives. Read more about this funding on the National Institutes of Health website.

2 – Health Research Council struggles to divide the NZ health research cake equitably.

Meanwhile, the Health Research Council in New Zealand is seeking ways to redistribute health research dollars that have been close to static for several years now, despite increasing costs for research. The HRC has commendable plans to simplify the application process and their proposed new allocation system means that more rare disease projects might actually receive funding. But it is cold comfort to know that such projects are likely to be at the expense of other worthy research programmes. Certainly, the New Zealand government could make a significant improvement to research opportunities, and to job retention and growth, if it followed the example set by Obama’s boost to health research.

3 – Rare diseases getting high priority attention in many countries.

Recognition of rare diseases as a major public health priority has built considerable traction throughout Europe and North America in recent times. National policies and action plans for rare diseases are now becoming the norm in countries like Spain, Bulgaria and Portugal. Momentum is building too in Australia and New Zealand, though at a lower level. NZORD recently attended a meeting in Sydney where a number of medical professionals, researchers and health officials joined with patient advocacy groups to discuss the need for rare disease policy and legislation on both sides of the Tasman. Read the release about this meeting from the Australian Paediatric Surveillance Unit.

NZORD will continue to work closely with this trans-Tasman taskforce to improve policy, clinical care and research on rare diseases. We have achieved an initial goal of establishing a policy responsibility for rare disease in our Ministry of Health, and we will report in future newsletters about progress in our dealings with officials, and on other work to improve diagnosis and clinical care for affected patients and their families.

4 – Participants wanted for research on experience of NZ genetic services.

Have you had a consultation with genetic services in New Zealand? If so, you might like to participate in a research project about users’ perspectives on genetic information management issues. The project has been approved by University of Auckland Human Participants Ethics Committee and the researchers wish to interview a few more patients to complete their study of user experience and perspectives on NZ genetic services. The study involvement will be about a half an hour interview. If you are interested, please contact Helen Gu at University of Auckland ygu029@cs.auckland.ac.nz phone 09 373 7599 x 89232.

5 – Medsafe warnings on unsafe and counterfeit medicines.

In what has now become a regular series of messages about medicine safety from Medsafe, our Medicines Safety Authority, the issues of unlicensed and counterfeit medicines continue to surface. Internet purchases and “traditional” remedies seem to be the most common themes in these alerts, though recent advise also covered warnings about giving cough and cold remedies to under two-year-olds. These alerts should warn all New Zealanders of the importance of caution about any therapies offered by those who are not registered health professionals, and of carefully following advice on medicine administration. Follow this link for Medsafe’s alerts page.

6 – The demise of the Bioethics Council.

A recent casualty of the economic climate and public sector reviews was the Bioethics Council, set up following the Royal Commission on Genetic Modification, with the aim of enhancing New Zealand's understanding of the cultural, ethical and spiritual aspects of biotechnology, and ensuring that the use of biotechnology has regard for New Zealanders' values.

The Council contributed very usefully to public debate on these matters, particularly in its early reports on Human Genes in Other Organisms, and on Xenotransplantation. For five years up to 2008 it was the major sponsor of the Genethics essay competition for secondary school students, run by NZORD and the Royal Society of New Zealand. However in recent years the Council struggled to establish its agenda distinct from the work of other agencies or committees, or to find its role in current debates as public interest swung strongly to climate change and sustainability.

7 – Wrong diagnosis emerging as a major cause of poor health outcomes.

NZORD is concerned that wrong diagnosis and non-diagnosis are likely causes of significant disease burden and poor health outcomes in the population. While we are very pleased to see close attention to reviewing difficult areas such a perinatal and maternal mortality, and thorough review of medical practices and surgical errors in hospitals to reduce harms and improve health outcomes, we face a gathering stack of anecdotes and examples where failure to accurately diagnose rare diseases in a timely way has lead to inappropriate interventions, some near misses, and many significant negative outcomes for patients and their families.

NZORD believes that a timely and accurate diagnosis is a fundamental part of a quality health system. There are indications that medical school training needs to be reviewed as well as a number of systems and technology improvements made within health services, to avoid these all-too-common harms. An important part of any improvements to diagnosis also requires the upgrading of our genetic services, and we look forward to the results of current plans to breathe new life into these essential but much neglected clinical services. We will report more on this topic in future newsletters, including our collaborations with rare disease networks in other countries to define the problem and develop solutions.

8 – Major newspaper gets significantly confused about embryo research advice.

The NZ Herald did a good job of digging out the advice from ACART, the Advisory Committee on Assisted Reproductive Technology, given nearly two years ago to the Minister of Health about research on embryos. This advice sat before two previous Health Ministers and is now with the current Minister waiting for a decision. Unfortunately the Herald confused the story about the advice ACART gave, with a concurrent story about couples with stored embryos who could no longer be traced. The 23 December 2008 editorial and another feature article by Robyn Stent the following week both made erroneous assumptions that these “orphaned” embryos were recommended for research use.

In fact the advice from ACART is that informed consent from the couple would be a prerequisite to any research, if approval is given for this type of research to occur. Trying to understand this yourself would be tricky though, because the advice has not yet been published anywhere, and is available only to ACART, the Minister, and those who have made official information requests.

9 – Updated Ministry fact sheet on folate fortification of bread.

The Ministry of Health has published a new fact sheet on folate fortification of bread to prevent neural tube defects. This important public health measure will take effect from September this year and should lead to much better health outcomes for the approx 80 to 90 cases that are identified each year during pregnancy or at birth. NZORD has advocated for this step, along with groups such as CCS who lead the campaign for this over many years, and we are very pleased to see it is now close at hand.

ENDS

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