NZORD Newsletter 2005 #7 - 6 July 2005

Hello everyone,

In this issue:
1 - New Zealand Carers Alliance gets organised on policy issues.
2 - Job vacancy with Fertility NZ.
3 - A change of tack for Pharmac?
4 - ODI Disability Advisory Council established.
5 - Transgenic cows programme back on track.
6 - Events Calendar update.
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1 - New Zealand Carers Alliance gets organised on policy issues.
A group of over 30 non-government organisation have joined together under the banner of the New Zealand Carers Alliance, in an effort to get better recognition and support for those who care for ill, disabled or aged family members and friends. A substantial number of New Zealanders carry out these important tasks, usually unpaid, and the NZ Carers Alliance has been set up to ensure there is better recognition of the work carers do, and better attention to their own needs, in government policies and services. Significant improvements to government policies and support for family carers in the UK and in Australia, have spurred the New Zealand groups to get better organised and promote similar initiatives here.
NZORD is an active participant, and John Forman has been elected as the Chairperson of the NZ Carers Alliance. The executive committee is currently working on principles for a government strategy to recognise and support carers, and legislation to support that strategy, and will soon present these to government Ministers for discussion.

2 - Job vacancy with Fertility NZ.
The departure of their Executive Officer has created a vacancy for a communications and administration role with Fertility NZ. If you are interested in making a difference for New Zealanders faced with fertility problems check out the details on the Fertility NZ website.

3 - A change of tack for Pharmac?
A couple of recent decisions from Pharmac suggest they have been quick to respond to recent criticism about supply problems and other matters of concern. It is refreshing indeed to see a decision on haemophilia treatment supply being welcomed by the support group (click here for details) and another decision on asthma inhalers (see this link) that seems to have taken on board concerns expressed by patients and professionals.
In the difficult task of making rationing decisions on pharmaceutical expenditure, Pharmac will inevitably be exposed to criticism - sometimes very sharply. There can be no doubt the criticism will be less frequent and the upset less marked, if Pharmac builds a stronger working relationship with all the key stakeholders, in setting the things it has control over. We hope these two decisions signal something of a change of tack by Pharmac towards a more inclusive approach that puts more weight on the concerns of patients, their support groups and the relevant professionals.

4 - ODI Disability Advisory Council established.
The Office for Disability Issues is the prime policy advisor to the Minister for Disability Issues. To assist them to keep in touch with the disability sector they have established a Disability Advisory Council, consisting of 11 disabled people and two carer representatives. This is the first formal recognition of the NZ Carers Alliance which is the appointing agency for the carer positions on the Council, and is very satisfying “early points on the board” for the Carers Alliance. It offers an effective channel to take agenda items direct to the Minister’s key advisers.
More information is available about the Disability Advisory Council and the ODI itself, on the website of the Office for Disability Issues

5 - Transgenic cows programme back on track.
The transgenic programme of AgResearch, approved by the Environmental Risk Management Agency over two years ago, was delayed by court action, changes in industry licence authorities, and some internal changes within AgResearch. Now it is back on track with a plan to produce recombinant human lactoferrin in the milk of a new transgenic herd. NZORD is delighted to see this progress. Production of therapeutic human proteins is a complex and difficult scientific challenge, and one of the few viable ways to produce such proteins with the right biological activity and in a cost effective way, is through the use of transgenics. Click here to read more [link no longer active] on the AgResearch website.
It is interesting to note that after considerable controversy at the time of the Royal Commission and the ERMA hearings, the August 2004 report of the Bioethics Council [link no longer active] found wide support among the public of New Zealand for the use of this technology for medical applications.

6 - Events Calendar update.
Recent additions of the Young Carers Forum, the NZ Huntington’s Conference and the Consumer Voices conference, bring up a total of 25 conferences and meeting specific to the interests of health and disability support groups, that are listed in the 2005 Events Calendar. Click here for more details.

Regards, John

John Forman
Executive Director