NZORD Newsletter 2006 #6 - 20 December 2006

Hello everyone,

In this issue:
1 - Newborn Metabolic Screening expanded from 1 December 2006.
2 - The Human Tissue Bill reaches Select Committee.
3 - Draft Guidelines for Autism Spectrum Disorder released.
4 - Disability Allowance now available to people in community residential services.
5 - New genetic test available for long QT syndrome.
6 - Consultation by ACART on use of embryos in research.
7 - Medicine Strategy discussion document released by Ministry of Health.
8 - 2006 edition of “Blue Book” now available for caregivers of children with Cleft.
9 - Therapeutic Products and Medicines Bill introduced into Parliament.
10 - Pharmac adds to Medicine Strategy debate with a paper on high cost pharmaceuticals.
11 - Happy holidays from NZORD.
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1 - Newborn Metabolic Screening expanded from 1 December 2006.
A major milestone was reached on 1 December when the Newborn Metabolic Screening programme added over twenty new tests to the seven previously performed on the Guthrie card blood spot taken from most newborn babies. This is a significant advance in improving the health of babies, with the new tests predicted to save the lives of about 3 to 5 babies each year, and significantly improve the outcomes for a similar number of others. The full programme will now produce life-saving interventions, deliver significant improvements to health and wellbeing, and avoid major disabilities, for around 40 to 45 babies every year. Read more about the new tests at this link on the Ministry of Health website [link now to National Screening Unit website].

2 - The Human Tissue Bill reaches Select Committee.
On November 7th the Government introduced the Human Tissue Bill and a Select Committee will now call for public submissions. The bill is aimed to address concerns raised during the 2004 Human Tissue Review, which found a lack of clarity around informed consent for the collection and retention of tissue, and that contrary to public perception, the current National Register of Driver Licenses does not give full consent to organ donation and is not routinely accessed by health professionals involved in organ donation.

The Bill provides a framework for regulating the collection, storage and use of tissue and organs, primarily from the deceased. It also regulates trading in tissue, export and import of tissue, and the use of tissue for non-therapeutic purposes (e.g. audit, anatomical examination, research and post mortem). A national organ and tissue donor register will be established to improve public awareness of organ donation and improve current donation procedure and co-ordination between health agencies involved in organ donation. To view the bill online and for more information, go to this link at the Ministry of Health website.

3 – Draft guidelines for autism spectrum disorder released.
The Ministry of Health has released Draft Autism Spectrum Disorder Guidelines for public consultation, which will include meetings around the country over a six month period. The Guidelines are written in a way that is accessible to families and professionals and provides evidenced based information on everything from medication to best educational practice. Click here for a media release [link no longer active] on the draft ASD Guideline and the consultation process. The draft guidelines, which promise to be a significant and welcome resource for families and professionals, can be found at this link.

4 - Disability Allowance now available to people in community residential services.
Disability allowance is now available to individuals with physical, sensory, intellectual and psychiatric disabilities and living in a community residential service. A long standing anomaly that arose at the time of the health reforms in the early 1990s has finally been corrected with a change to the Social Security Act. Since that time those living in supported accommodation had frequently been denied access to disability allowance or special benefit for health and disability related costs. The disability allowance is now available to cover the additional costs related to an individual’s disability that are currently not funded by their service providers' contracts with the Ministry of Health or a District Health Board. On-going disability related costs covered by the allowance include medical and dental fees, ambulance fees and subscriptions, authorized consumables’ e.g. hearing aid batteries, transport costs and clothing.

There has been a lot of advocacy effort over many years to correct this anomaly. Relief at its correction is still tempered with frustration that so many impediments were put in the way of correcting this deliberate denial of benefit entitlement to some of society’s most vulnerable, by officials and providers who engaged in cost shifting in order to protect the budgets they administered. That final correction of this occurred only when Social Security Appeal Authority rulings forced officials to act, is a matter for shame on those who knew about this financial abuse for many years but did nothing to correct it. Details of the changes can be found on the disability pages of the Ministry’s website.

5 - New genetic test available for long QT syndrome.
Genetic testing for long QT syndrome is now available through Lab plus in Auckland following successful research carried out by the Cardiac Inherited Disease Group. Long-QT syndrome, an inherited arrhythmia disorder causes sudden collapse and death in 1 in 2000 young people. Treatment for the condition involves taking Beta blockers daily and avoiding certain other medications. Previous testing procedures were unreliable in detecting those who carry the defective gene. Cardiologists and Clinical geneticists from around New Zealand will be able to order the tests through Lab plus, Auckland.

6 - Consultation by ACART on use of embryos in research.
A long-awaited consultation document on the use of gametes and embryos in research has been released by ACART, the Advisory Committee on Assisted Reproductive Technology. This important document will consider the technology, the potential uses, and the spiritual, cultural and ethical issues associated with such research. ACART will consider submissions from the public at a series of public meeting and written submissions up to the closing date of 2 March 2007, before deciding what advice to give to the Minister on whether such research should be permitted, and if so, on what terms. There are significant implications in this debate for those affected by rare disorders and support groups are encouraged to make their views known to the committee. Details of the consultation document, a press release on the process, and submission forms, can all be accessed through the website of ACART.

7 - Medicine Strategy discussion document released by Ministry of Health.
The Ministry of Health has released a consultation document on the development of a Medicines Strategy [link no longer active] for New Zealand. NZORD worked hard with many other support groups through the Access to Medicines Coalition to win agreement from government to develop this strategy, and now is the opportunity for us to make our voices heard in the formal consultation process. Though a generally “soft” document in terms of actions and specifics, there are some items included that were specifically sought by the ATM Coalition, including having access as an objective in the strategy, having a principles-based framework, and including equity in the principles to be considered. These are significant in being the first time anything other than budget management and cost utility have been at the centre of medicine policy in New Zealand for many years. NZORD and the ATM Coalition will be working hard in preparation of a substantial submission by the March 2007 deadline. Ideas and suggestions for the submission are most welcome. Click here for commentary to date from the ATM Coalition.

8 - 2006 edition of “Blue Book” now available for caregivers of children with Cleft.
The Cleft Lip and Palate Support Group has launched the 2006 edition of the "Blue Book" - a practical handbook produced for caregivers of children with a cleft covering all aspects of cleft care from birth through to final discharge. This edition is updated to give a national focus and designed to be more interactive. Copies can be ordered through the support group website.

9 - Therapeutic Products and Medicines Bill introduced into Parliament.
It has been a very long time coming but the Bill to set up a joint trans-Tasman agency to regulate medicines has finally made it into Parliament. The new agency is likely to provide quicker and more efficient registration of medicines in New Zealand. NZORD regards this as a significant benefit for patient groups here, and an important step towards improved access to medicines through the pharmaceutical schedule. We also look forward to long overdue steps to ensure the safety of a wider range of medicines and medical devices. Further information is available at the website of the Australia New Zealand Therapeutic Products Authority.

10 - Pharmac adds to Medicine Strategy debate with a paper on high cost pharmaceuticals.
Surprise and disappointment were the initial reactions of the Access to Medicines Coalition at the news that the Ministry’s consultation document on a new Medicines Strategy for New Zealand (see item 7 above) was to be paralleled by a Pharmac discussion document on high cost therapies. Our fears of a narrow focus on cost utility matters in the Pharmac papers were realised with the recent release of Pharmac’s papers. Pharmac’s approach is largely limited to the implementation process to be followed once a budget is set and the rationing decisions need to be made. Their paper leaves out some important social and ethical considerations, as well as important objectives set out in the Public Health and Disability Act.

Pharmac’s very narrow perspective is not an appropriate contribution to the development of a Medicine Strategy. A strategy should be covering high level principles about population health gains through medicine use, addressing disparities and equity issues for disadvantaged groups, and setting broad parameters and guidance for the establishment of the medicines budget in the first place. We think the decision to have Pharmac lead on this part of the consultation was a bad one. The results of their work to date demonstrate they do not take a strategic overview of the whole medicines issue. The leadership on all the current medicines consultation should have rested with the Ministry of Health. Click here for commentary from the Access to Medicines Coalition. Pharmac’s consultation paper is available at this link.

11 - Happy holidays from NZORD.
When you get to this item you will realise that a very busy 2006 will lead to a very busy 2007 ahead of us, and no shortage of reading and work to do once you have had your summer break. Additional consultation documents will be coming out in February and March too, so have a relaxing and refreshing break and come back in the New Year ready to make further improvements to the services our families depend on, and the policies that guide their operation.

Regards, john

John Forman
Executive Director, NZORD