NZORD Newsletter 2014 #5 - 29 August 2014

Hello everyone, 
 
In this issue:
1 – Political parties respond to NZORD’s election manifesto – Some cause for optimism.
2 – NZORD begins receipt of Pharma industry funding.
3 – Super Power Baby Project.
4 – What I’m reading, and highly recommend for all with an interest in health research. 
5 – This month’s good news item.
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1 – Political parties respond to NZORD’s election manifesto – Some cause for optimism.
There is now strong political support for our call for a government policy and action plan for rare disorders. In response to our survey of the seven political parties in Parliament, the Greens, Labour, Mana and NZ First parties all offer positive support for the development of a government policy and action plan for rare disorders. Support is also indicated by United Future and the Maori party, but in less clear terms. National says this issue will be addressed in its health policy release in the next few weeks, but does not indicate what their stance will be.

Click here for the detailed responses from all the political parties to our manifesto questions. This is a significant advance for the interests of tens of thousands of New Zealanders affected by a rare disorder.

2 – NZORD begins receipt of Pharma industry funding.
In the nearly 14 years of NZORD’s formal existence we have not received grants from any Pharmaceutical companies that market their products in New Zealand. Our income has been limited to a contract with the Ministry of Health, income from gaming trust grants, donations and fundraising events, and support from a variety of community and private charitable trusts and foundations. But the tough financial years since 2008 have led us to review the range of income sources available to us.

After careful assessment of risks and benefits, a review of practice by other major rare disease organisations worldwide, and a survey of 30 support group leaders in New Zealand, the board of NZORD has determined a policy that will allow receipt of Pharma funding in certain circumstances. The policy specifies activities for which Pharma funds may be received, while providing an over-riding exclusion of the use of any Pharma funding in relation to medicine funding policy or any specific medicine funding decisions. All Pharma funding will be disclosed, along with the constraints on funding that affirm NZORD’s autonomy.

Read the policy adopted by the board of NZORD in July 2014, setting out the principles, policy decision and procedures relating to funds from Pharma. The first grant from a Pharma company was received in August 2014. 

3 – Super Power Baby Project.

We are lucky enough to have in our office a copy of the newly released Super Power Baby Project book.  Rachel and Sam Callander of Timaru have dedicated the project to their gorgeous daughter Evie Amore Callander who was born with a rare chromosomal disorder and died in October 2010 aged two and a half.  Evie was hypersensitive to electromagnetic fields, which led her parents to joke that she had super powers.  Hence the Super Power Baby Project was born. Rachel and Sam travelled the country meeting and photographing over 70 incredible children.  Rachel hopes the book will teach people just how valuable children with special needs are.  To order one of these beautiful books, visit www.superpowerbabyproject.org

4 – What I’m reading, and highly recommend for all with an interest in health research.
Rare Diseases and Orphan Drugs: Keys to Understanding and Treating the Common Diseases by Jules J Berman. Dr Berman is highly qualified in cancer biology, informatics and computer programming. He is co-author of hundreds of scientific publications and this is his sixth book. He presents the counter-intuitive but correct analysis which shows that much of what we now know about common diseases has been achieved by studying rare diseases. It proposes that future advances in the prevention, diagnosis, and treatment of common diseases will come as a consequence of our accelerating progress in the field of rare diseases.

It is a remarkable work, and one that should be carefully read by everyone with responsibility for key decisions in health research, or in planning our health system. Every rare disease advocate needs to read this too. Fortunately he has a writing style and structure in the book that assists ease of understanding of the topic. This highly recommended book is available online at the Elsevier store

5 – This month’s good news item.
Young Charlie McLaren is in St Louis, Missouri in the USA for life changing surgery. He has a form of Cerebral Palsy called Spastic Diplegia which results in difficulty walking and balancing due to extremely tight leg muscles. His operation, called Selective Dorsal Rhizotomy (SDR), should enable Charlie to improve walking ability and retain mobility as he gets older. The procedure involves identifying and severing some sensory nerve roots within the spine, resulting in smoother, freer movements.

Charlie’s operation was performed by neurosurgeon Dr T.S. Park who is acclaimed for refining the procedure and over the past 25 years has changed the lives of over 2,700 children from around the world affected by cerebral palsy. This procedure is not currently available in New Zealand. After some more follow-up procedures and intensive physiotherapy, Charlie will head home to Christchurch in the middle of September. This operation is expected to greatly improve Charlie’s quality of life and provide him with the opportunity to realise his dreams and potential. Perhaps he may become a tennis player after all. Check out Charlie’s facebook page.

Edited by Lyndal Bremer and John Forman