NZORD Newsletter 2007 #5 - 19 December 2007

Hello everyone,

In this issue:
1 - Medicine Strategy holds significant promise for the future, despite no immediate actions.
2 - Good progress on Carer Strategy too.
3 - NZORD 2007 conference report available.
4 - Guidelines from ACART on surrogacy and gamete donation.
5 - NZORD participates in international meeting on medicine access.
6 - H5N1 Pre-Pandemic Vaccine Consultation Document.
7 - Events Calendar for 2008.

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1 - Medicine Strategy holds significant promise for the future, despite no immediate actions.
Several years of lobbying by NZORD and many other support groups through the Access to Medicines Coalition has produced a positive result with the launch last week of Medicines New Zealand, the government's medicine strategy. There has been considerable disappointment with the lack of action to fix some of the immediate problems, especially the chronic underfunding of medicine access in New Zealand, but the strategy and accompanying action plan offer significant opportunities for improvements in the medium term. Phrases like equity, equitable access, special consideration of medicines for small groups of people, greater transparency, are used for the first time in a document that will guide decisions about medicines budgets and allocation decisions. That is a significant shift from the "do the best you can with the money you have got" approach that was the focus of the previous regime and which led to little more than narrow cost-effectiveness evaluations.

The action plan accompanying the strategy signals significant reviews that will be undertaken, in response to the many concerns highlighted to the Ministry during the consultation. Issues like reviewing the budget setting process, retention of existing medicine access for patients when brand subsidies change, ensuring the independence of the Pharmacology and Therapeutics Advisory Committee (PTAC) from Pharmac, and a review of the exceptional circumstances funding and criteria, are all positive moves that promote transparency in the system and the opportunity for greater stakeholder input into decision making.

NZORD always took the view that the focus should not primarily be on Pharmac and their role, despite the significance of that role. We believed the most important objective was a good overarching strategy that guides the whole process of regulation, budget setting, access, use, and subsidy decisions for medicines. The strategy seems a very good starting point and we are very pleased to have that finally available. Getting quality implementation of it is the big challenge now. More analysis of this important strategy will occur in the New Year. The strategy and action plan can be found on the Ministry of Health website.

2 - Good progress on Carer Strategy too.
It is far too early to draw any conclusions, but it is very comforting to know that work on a Carer Strategy is progressing well in discussion between the Carers Alliance team and the officials involved in producing recommendations to the Minister, Ruth Dyson. This is a major initiative to recognise, value and support the work of family carers who, invariably unpaid, care for sick, frail, injured, chronically ill and disabled friends and family. Developing this strategy has been promoted by more than 45 not-for-profits that support and advocate for carers, and consulted on in detail over this past year with the public and officials. Responses indicate the ground is well laid for a positive response from government and we look forward to policy announcements in March or April next year. Special thanks must go to Laurie Hilsgen and the team at Carers New Zealand for their leadership and energy in pursuing this important initiative. It truly has been a privilege to chair the Carers Alliance and engage in such positive work that is helping achieve the vision of a carer strategy. More information about carers is available at www.carers.net.nz.

3 - NZORD 2007 conference report available.
A report on the 2007 NZORD conference is now available on our website at this link.

4 - Guidelines from ACART on surrogacy and gamete donation.
Following the passing of the Human Assisted Reproductive Technology Act, the advisory committee set up under that Act (ACART) was charged with producing guidelines for a variety of procedure to treat infertility and to prevent serious diseases. These guidelines will be used by the ethics committee (ECART) to decide on applications for procedures that are not able to be routinely offered by fertility clinics. In November ACART issued guidelines on surrogacy arrangements and donation of sperm and eggs between family members. A key aspect of these guidelines is a greater degree of flexibility to allow the ethics committee to consider the individual circumstances of the parties involved, while ensuring the health and well-being of any resulting child remains an important consideration. The new guidelines are a significant shift from the rules-based approach that previously applied. See www.acart.health.govt.nz for more information.

5 - NZORD participates in international meeting on medicine access.
NZORD is a member of IAPO, the International Alliance of Patient Organisations, and recently participated in a meeting they convened about medicine access, in conjunction with a World Health Organisation Intergovernmental working group considering the topic. NZORD was represented at the Geneva meeting by Dr Marie Bismark. Her report on the meeting is posted on the NZORD website.

6 - H5N1 Pre-Pandemic Vaccine Consultation Document.
The Ministry of Health is consulting on plans for use of a vaccine for front-line health and emergency services staff in the event of a human H5N1 flu pandemic occurring. Details of the plan can be found at this link [link no longer active] on the Ministry website. Submissions close 15 February 2008.

7 - Events Calendar for 2008.
We are accepting notices of events for 2008 and beyond. Please send us details in a similar format to entries on our Events Calendar page.

NZORD wishes you all a safe and relaxing holiday break. Regards, John

John Forman
Executive Director, NZORD