NZORD Newsletter 2005 #2 - 4 March 2005

Hello everyone,

In this issue:
1 - Good news (in part) from the Ministry of Health.
2 - Lobby group on access to therapies.
3 - Recall of three more herbal products.
4 - Every Child Counts - a campaign for improved outcomes for children.
5 - Xenotransplantation dialogue commenced by Bioethics Council.
6 - Extension of MeNZB vaccine to babies, and total doses exceed 500,000.
7 - Events Calendar.

1 - Good news (in part) from the Ministry of Health.
Our letter to the Director-General of Health urging a concerted effort to implement “do-able” policy and service gaps for rare disorders (see Same Issue, Different Year - 31 January 2005), has received a quick response with some positive news on at least some of the topics raised. Decisions have been made about new technology to enhance Newborn Screening and steps planned for widening the conditions tested for, by the end of this year. Work to put structures in place to implement the Genetic Services review will be completed by June of this year. Adding these two items to the imminent announcement by the Minister of Health on guidelines for pre-implantation genetic diagnosis, suggests that 2005 might be a year of significant progress for those who struggle to get attention to their needs. However not all the news is good. Click here to read more on this topic…..

2 - Lobby group on access to therapies.
There are many NGOs working with communities that have difficulties accessing adequate and appropriate drugs. The New Zealand AIDS Foundation is co-ordinating a group of NGOs to advocate for a better system for accessing drug treatments in New Zealand. The first meeting was held on Feb 17 2005 and the next one is scheduled for April 5 2005, in Wellington. The plan so far is to look at the whole drug funding system in NZ and identify exactly where the system is breaking down, and then to work as a group to plan and implement a strategy to bring about change. For more information contact Emily White Ph 09 300 6964 Email emily.white@nzaf.org.nz

3 - Recall of three more herbal products.
The Ministry of Health has recalled three products from the “Herb’s Health” product range as they illegally contain prescription medicines. People with supplies of Joint Plus capsules, S.E.N. Capsules, or Multistress capsules should check the advisory information on the Medsafe website. Careful note should be taken of this advice as two of them should be stopped immediately, but the other requires a controlled withdrawal for the safety of the patient.
NZORD notes this is the tenth warning about the content, labelling or manufacturing standards of complementary and alternative medicines since 2000. This should serve as a warning to the public not to blindly assume that “natural” is best, and to have a healthy skepticism of such products, and the claims made about them.

4 - Every Child Counts - a campaign for improved outcomes for children.
A realisation that New Zealand could do better for its children has led 180 individuals and organisations to start a joint campaign to promote the interests of children and families in the lead up to the 2005 election. Every Child Counts is a non-party political campaign with a simple message:- children and families must be central to policy if New Zealand is to thrive socially and economically. Placing children and families as the centre of policy will lead to fewer children growing up in poverty, fewer children growing up experiencing violence, more children getting a good start to life, and public policy being more child and family centred.
Organisations leading the project are Barnardos, UNICEF New Zealand, Save the Children, Royal New Zealand Plunket Society and the Institute of Public Policy, Auckland University of Technology. This campaign fits well with NZORD's aims to improve the health of children (and others) affected by rare disorders, and we encourage groups to take an interest in it. Further information will soon be available at http://www.everychildcounts.org.nz

5 - Xenotransplantation dialogue commenced by Bioethics Council.
Should animal transplants be used in humans? This is the question the government-appointed Bioethics Council is asking the public of New Zealand to consider. The Council has launched a discussion document and public dialogue process on the subject entitled "The Cultural, Spiritual and Ethical Aspects of Xenotransplantation: Animal-to-Human Transplantation".
New methods of treating disease need thorough exploration to test their efficacy and safety, and if Xenotransplantation meets these standards, how should ethical issues influence the decision to approve or not approve the treatment? NZORD will make a submission on this important topic and wants to hear the views of your group, before we make ours in May. More information about the issues and how to join in the public dialogue process, can be found at the Bioethics Council website [link no longer active].

6 - Extension of MeNZB vaccine to babies and youth 17 to 20, and total doses now exceed 500,000.
The meningococcal vaccine programme is continuing its successful roll-out across the country with over half a million doses now administered, and nearly 150,000 young people now having all three doses. An excellent safety profile for the vaccine has also led to the vaccine being approved for babies as young as six weeks old and this offers important protection to more in the at-risk group under one year old. Addition groups now eligible for the vaccination are young people aged 17 to 20. It is very pleasing to see the continuing success of this vaccination campaign. More information is available at http://www.immunise.moh.govt.nz (This link is 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.)

7 - Events Calendar.
We have added several events covering: managing chronic illness; suicide prevention; and education workshops for autism spectrum disorders and specific learning disabilities. Check out the full list on our Events Calendar.

Regards, John

John Forman
Executive Director