NZORD Newsletter 2007 #1 - 9 May 2007

Hello everyone,

In this issue:
1 - 2007 Genethics essay competition on Guthrie card storage and use.
2 - Major submission from Access to Medicines Coalition on medicine strategy consultation.
3 - Significant challenge to Pharmac high cost medicines paper.
4 - Government confirms commitment to a Carer strategy and action plan.
5 - NZORD’s submission to the select committee on the Human Tissue Bill.
6 - NZORD network supports joint medicines agency with Australia.
7 - Minister approves steps to improve quality and safety of antenatal Down syndrome screening.
8 - Action at last on the National Health Committee’s Genetic Services report.
9 - National Health Committee reports on meeting needs of people with chronic conditions.
10 - UN Convention on the Rights of Persons with Disabilities is completed.
11 - Events calendar.

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1 - 2007 Genethics essay competition on Guthrie card storage and use.
NZORD is pleased to present the fourth annual Genethics competition for secondary school students, examining the issues of consent, storage and use of Guthrie cards for newborn metabolic screening. This competition coincides with a formal public consultation by the National Screening Unit on exactly the same topic, giving students a unique opportunity to contribute directly to the policy process. More details are available on the NZORD website.

2 - Major submission from Access to Medicines Coalition on medicine strategy consultation.
If you wondered about the absence of NZORD newsletters over the past few months the answer lies in the work required to produce a 210 page submission to the Health Ministry on the development of a medicine strategy for New Zealand. The Access to Medicines Coalition, comprising 26 support groups, put in hundreds of hours of work and obtained expert advice from a public law specialist, a philosopher with public policy experience, and a public health physician, to identify significant problems with structures, roles and priorities in the prescription medicines allocation system. Read the introduction to our submission presented to the Ministry on the Access to Medicines website or go directly to the full submission in word format or in pdf format.

3 - Significant challenge to Pharmac high cost medicines paper.
In March the Access to Medicines Coalition presented Pharmac with a response to their discussion papers on high cost medicines. We expressed our frustration at a very poor analysis by Pharmac of the issues under consideration and pointed out a number of ways in which their current policies and practices fail to comply with the purposes of the NZ Health and Disability Act, and with Pharmac’s own statutory functions. Click here to read our submission. ATM included these concerns in our submission to the Ministry of Health and to government as part of the wider consultation on the development of a medicines strategy.

4 - Government confirms commitment to a Carer strategy and action plan.
Forty national support groups make up the NZ Carers Alliance and over the past 30 months they have been working with Carers New Zealand, a small not-for-profit and secretariat for the Carers Alliance, to push for a Carer strategy from government. The goal is a strategy that recognises and supports the important unpaid caring that is performed on a daily basis by very large numbers of the population caring for sick, disabled, aged and injured family members and friends. The Alliance was delighted when Disability Minister Ruth Dyson recently announced government’s commitment to a Carer strategy and action plan. Read more on the website of Carers NZ.

5 - NZORD’s submission to the select committee on the Human Tissue Bill.
The Human Tissue Bill is an important piece of legislation updating old law developed in the 1960s. Considerable work has been done over a number of years to develop a robust framework to govern the use of human tissue in “non-therapeutic” situations - usually diagnostics and research. NZORD has taken a close interest in the development of this legislation because of our interest in protecting the rights and interests of patients and support groups, and an equally strong interest in ensuring there is progress in disease identification and development of therapies and cures. Here is the text of our submission to the Health Select Committee.

6 - NZORD network supports joint medicines agency with Australia.
Major impacts of the Therapeutic Products and Medicines Bill are proposals to set up a joint medicines regulation agency with Australia and to extend regulatory oversight to complementary medicines. These proposals have attracted some controversy but NZORD has worked over many years to discuss these issues in detail with a wide range of support group leaders in New Zealand. We believe both these major proposals are in the best interests of health consumers in New Zealand, and that there is widespread support for them among support groups representing the vast majority of patients. Here are the main points of the submission we made to the select committee.

7 - Minister approves steps to improve quality and safety of antenatal Down syndrome screening.
Health Minister Pete Hodgson has accepted a report from the National Screening Unit on suggested improvements to the quality and safety of antenatal Down syndrome screening, and asked for further work towards a nationally organised screening programme. NZORD was directly involved in the NSU’s advisory group on this topic and is very pleased to see progress being made. Click here for more information on the Ministry of Health website.

8 - Action at last on the National Health Committee’s Genetic Services report.
After languishing on the shelf for over 3 years this important report on Molecular Genetic Services, which in 2003 identified the need for urgent improvements to genetic services, is now the subject of a DHB New Zealand advisory group that is preparing advice to DHB Chief Executives on how this report can be best implemented. We are not there yet but we are pleased to note some progress.

9 - National Health Committee reports on meeting needs of people with chronic conditions.
Another important report has just been released on how the health and disability system provides for those with chronic conditions. The NHC identifies a range of initiatives that should be put in place to improve integration of services within the health sector and with other sectors, assist information flows, reduce silo provision of services, and improve care coordination at a DHB and primary care level. NZORD is pleased to have been a part of the process that influenced this report and its findings. We hope this report will not sit on a shelf but instead have some prompt action to commence its implementation. Click here to read the report from the National Health Committee.

10 - UN Convention on the Rights of Persons with Disabilities is completed.
This convention is the first UN convention in this century and a very significant step forward for disabled people. New Zealand officials and disability sector leaders played an important role in the development of this convention and steering it through the consultation and ratification process. Click here for commentary about the convention on the website of the Office for Disability issues, or here [link no longer active] for commentary from DPA.

11 - Events calendar.
Check out the latest additions to our events calendar. If you’d like your event listed, send us the details.

Regards, John

John Forman
Executive Director