NZORD Newsletter 2006 #2 - 13 April 2006

Hello everyone,

In this issue:
1 - Universal Newborn Hearing Screening one step closer.
2 - NZ Carers Alliance makes progress towards a Carer Strategy for New Zealand.
3 - Consultation on Direct-to-Consumer Advertising of prescription medicines.
4 - NZORD gives a lead in International Genetic Alliance position statement on rare diseases.
5 - Major milestone for MeNZB vaccination campaign.
6 - The proposed Australia New Zealand Therapeutic Products Authority.
7 - Events Calendar update.
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1 - Universal Newborn Hearing Screening one step closer.
Last year’s commitment by the government to implement a newborn hearing screening programme came one step closer with the February 2006 publication of a detailed report on policy and implementation issues for the programme. Read the report from this link to the Ministry of Health’s website. This is good news indeed as up to 170 New Zealand children each year are born with significant hearing loss that is usually pick up late - at an average age of nearly four years. Early detection and intervention can significantly improve language development and learning opportunities. We look forward to speedy action to implement this programme.

2 - NZ Carers Alliance makes progress towards a Carer Strategy for New Zealand.
Good news on this front as the Carers Alliance of 40 support groups has won key support from the Minister for Disability Issues, Ruth Dyson, for the establishment of a Carer Strategy for New Zealand. The Alliance is seeking a strategy with clear recognition of and support for those who care (usually unpaid) for their sick, disabled or frail family members and friends. Legislation is also sought to back the strategy up. Work is continuing with officials from several government agencies in a steering group to make progress on the Strategy. Congratulations to Carers NZ and all the other groups who have contributed to this rapid progress. Read more about progress towards the Carer Strategy on the website of Carers NZ. NZORD is an active participant in the NZ Carers Alliance.

3 - Consultation on Direct-to-Consumer Advertising of prescription medicines.
The Ministry of Health is calling for submissions on this contentious topic. Submissions close on 28 April 2006 and groups are encouraged to give this careful consideration. Changes are being driven by public debate and by planned changes in medicine legislation and regulation, including the proposal for a joint Trans-Tasman Therapeutic Products Authority. Click here for the Ministry’s introduction to the consultation document, and to questions and answers on what is happening and why.

4 - NZORD gives a lead in International Genetic Alliance position statement on rare diseases.
Over the past year a position statement has been developed in the International Genetic Alliance about how governments and industry should respond to the need for improved information, clinical care and treatment for rare diseases. NZORD played a lead role in drafting and promoting the document and ensuring its acceptance by the IGA last month. Key principles include recognition of rare diseases as a significant public health issue, that care and treatment of them is a human rights issue, the need for a comprehensive approach to information, diagnosis, prevention and care, and the importance of quality information, informed consent and autonomous decision making in all aspects of research, prevention and treatment. Click here for the full text of the position statement on the NZORD website. We expect this statement will help New Zealand groups and those in other countries as we seek to spread the benefits of such policies already adopted in the USA and European Union, to other parts of the world.

5 - Major milestone for MeNZB vaccination campaign.
The vaccination campaign against meningococcal B disease reached a major milestone this week with the 3 millionth dose administered. Nearly a million children and young people have had all the planned doses of the vaccine. Disease incidence data is beginning to show a significant decrease in the B strain of the disease - 82 cases in under-20yr-olds in 2005 compared to 189 in 2003, the year before the vaccination campaign began since. Click here for a press release from the Minister of Health announcing an extension of funding for the campaign. (Link no longer active - The MeNZB vaccination programme ended in June 2008 as cases of meningococcal disease declined, though the vaccine is still available for people considered to be at heightened risk.  See the Ministry of Health website for more information.) Weekly updates on vaccine administration and disease incidence are available on the Ministry of Health website.

6 - The proposed Australia New Zealand Therapeutic Products Authority.
The Authority will replace Australia’s Therapeutic Goods Administration (TGA) and the New Zealand Medicines and Medical Devices Safety Authority (Medsafe). Its role will be to regulate therapeutic products such as prescription and over-the-counter medicines, complementary medicines, medical devices and blood products in both countries. Legislation is expected to be passed in 2007 to set this up and an extended consultation process has begun. Click here for a link to the website of the joint agency establishment group.

7 - Events Calendar update.
Check the Events Calendar for a list of 21 workshops, conferences and annual meetings. Send us a note to have yours added to the list.

Regards, John

John Forman
Executive Director