NZORD - the New Zealand Organisation for Rare Disorders

Newsletter

 In this issue:

1 - Genetic testing report falls into a black hole, again.
2 - Pharmac stakeholder forum.
3 - Use of Gametes and Embryos in Human Reproductive Research: Summary of Submissions.
4 - Good news on PGD undermined by bureaucratic problems.
5 - Digital Strategy funds obtained for support group videoconferencing facilities.

6 - Exciting new opportunities in newborn screening.

7 - Health Information Privacy Code changes.

8 - Events Calendar.

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1 - Genetic testing report falls into a black hole, again.

We are now at the fourth anniversary of the publication of the National Health Committee’s report on Molecular Genetic Testing in New Zealand, in which the committee described as “urgent” the need to bring our clinical and laboratory genetic services up to an acceptable baseline, but still there has been no action by officials to carry out the report’s recommendation. In May 2006 NZORD met Health Minister Pete Hodgson about this. He shared our frustration about lack of progress and referred the matter to DHBNZ, the coordinating body for District Health Boards, but just last month we learnt that DHBNZ has dropped the ball and seemed to lack interest in the topic. We are approaching the new Health Minister, David Cunliffe, to see if he can get action under way to improve genetic services. The long delay in official response to this report is unacceptable. Genetic services are an important part of a comprehensive health system and play an increasingly important role in modern medicine.

 

2 - Pharmac stakeholder forum.
A number of support groups have received invitations to Pharmac’s stakeholder forum in Wellington on Wednesday 3 December 2007. There is no charge for attendance and Pharmac is offering travel assistance for some groups to attend. Have you registered? This is an excellent opportunity to learn how Pharmac goes about its objectives and to make your views known about impacts on the patients your group represents. For enquiries, contact Natalie Corkery ncorkery@dazzleevents.co.nz

 

3 - Use of Gametes and Embryos in Human Reproductive Research: Summary of Submissions
ACART, the Advisory Committee on Assisted Reproductive Technology, has released a summary of submissions received in response to its discussion paper on the Use of Gametes and Embryos in Human Reproductive Research. The document can be downloaded from this link on the ACART website. ACART has submitted its advice to the Minister. The governemnt’s response is yet to be decided by Cabinet and it now seems this may not occur until next year. Other advice has been forwarded to the Minister following this year’s consultation on various aspects of assisted reproductive technologies, and further announcements on those may be expected in coming weeks.

 

 4 - Good news on PGD undermined by bureaucratic problems.
Good news in the reports of more than a dozen pregnancies and some healthy live births after pre-implantation genetic diagnosis, is tempered with disappointment at the poor administration of the funding by District Health Boards. Failure of DHBs to coordinate their activities led to long delays in getting PGD procedures under way to start with, and failure of DHBs to sensibly manage the funding pool has led to under-spending nationally while waiting lists for procedures are developing in some places. The inevitable conclusion is that some funding tagged for PGD has been spent on other things. Just like the genetic services issue mentioned above, it seems that DHBs have been failing to manage specialist services that require national provision and coordination.

 

5 - Digital Strategy funds obtained for support group videoconferencing facilities.

NZORD has won funds from the government’s Digital Strategy Fund to set up videoconferencing facilities for a cluster of not-for-profit support groups. This builds on our success one year ago in getting funds to set up a community outreach of the TelePaediatrics service, and which resulted in videoconferencing facilities being set up in five Parent to Parent offices. Continued expansion of this work will see more videoconferencing facilities established in the community and enhance opportunities for support groups to keep up with the latest communications technology.

We are grateful for the support received from the Digital Strategy Fund and the successful partnership established with Starship Foundation and the NZ TelePaediatric Network, to win the funds for this venture. Click here for information about the facilities set up in Parent to Parent offices earlier this year, as a result of NZORD’s initiative.

 

6 - Exciting new opportunities in newborn screening.

Presentations at NZORD’s recent conference identified significant improvements in capacity to accurately screen for more childhood conditions through the Guthrie Card test. Disorders such as Fragile X, Lysosomal diseases and some Immune Deficiencies, seem good candidates for expansion of newborn screening in the not-too-distant future. There are issues to be resolved beyond the science and technical, of course. It will be important for work to start as soon as possible soon on the social, ethical and service issues that these new possibilities bring to the fore. Support groups in our network are already well prepared for these discussions.

New Zealand’s Newborn Metabolic Screening Programme was a world leader when first established in the late 1960s but in recent years has been in catch-up mode compared to services provided in comparable countries. With the right sort of commitment we can once again be leaders in this technology that saves lives and significantly improves outcomes for many patients and families each year. Click here for details of the newborn metabolic screening programme.

 

7 - Health Information Privacy Code changes.

Recent changes to this code by the Privacy Commissioner did not include expected changes to the rule about disclosing genetic information to relatives. A planned change to reflect similar provisions in the Australian code was the subject of consultation by the Commissioner earlier this year. Click here to see what NZORD submitted on this topic. It seems the Privacy Commissioner will delay a decision on this topic until a wider review is undertaken on matters relating to genetic information. The recent changes to the Code seem to be more routine in nature. More details can be found on the website of the Privacy Commissioner.

 

8 - Events Calendar

Check out this link for seminars and conferences, and send us details of your event for inclusion in the list.

 

John Forman

Executive Director, NZORD

New Zealand Organisation for Rare Disorders

PO Box 38-538, Petone

125 Cuba St, Petone

New Zealand

Ph +64 4 566 7707

Fax +64 4 566 7717

Mob +64 27 240 3377

Email: john.forman@xtra.co.nz

Website: www.nzord.org.nz