New Zealand Organisation for Rare Disorders - May Newsletter

NZORD - the New Zealand Organisation for Rare Disorders
Hello everyone,

In this issue:
1 – Government’s carer payment decision stuns the carer community.
2 – PNH Support Association campaigns for funded access to novel medicine.
3 – Exciting developments at international rare disease research consortium.
4 – Big steps forward on non-communicable diseases at the World Health Assembly.
5 – Draft National Health Index Standard open for consultation.
6 – Save hundreds, perhaps thousands, per annum for your group on phone conference calls.
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1 – Government’s carer payment decision stuns the carer community.
The government’s decision in the May 2013 budget to provide payments to families caring for disabled adult children, has stunned many commentators and interest groups. The decision is a mix of progressive social policy, even though forced on government by a long running human rights court case which the government repeatedly lost, coupled with a mean-spirited response and tight eligibility criteria that will provide for only a small segment of family care situations, pay them at the absolute minimum wage, and prohibit future reviews through the courts by excluded families. A wide range of individuals and interest groups are up in arms about this. Read more here.

2 – PNH Support Association campaigns for funded access to novel medicine.
The PNH Support Association of NZ is waging a campaign to obtain funded access to a new treatment for this disease. In an unprecedented move last week, Pharmac staff issued a public consultation document about a proposal that funding of this treatment should be declined by the Board of Pharmac. They are calling for public submissions, apparently in an attempt to reinforce their position, hoping that the community will support their stance.

This is a serious situation for all rare diseases for which new therapies might soon be available. The essence of Pharmac’s argument is that they could produce wider benefits for many more patients with common disease and thus cheaper medicines. Their analysis gets no more sophisticated than that. It proposes to abandon those patients to die, without consideration of equity and fairness arguments so crucial to so many decisions in our health system. Read more here.

3 – Exciting developments at international rare disease research consortium.
Just what many of us in the rare disease community have waited so long to see, an international collaborative effort of science, medicine, patient advocacy, governments and industry, all working together with about NZ$200 million, to rapidly progress diagnosis and treatments for rare diseases. The goal is diagnostics for most of the 7000+ rare diseases, and new therapies for 200 more of them, by 2020. See the website of IRDiRC for an update.

It seems the fruits of the human genome project, new generation sequencing, and rapid sharing of cloud sourced data, are being harnessed through the commitment and energy of dedicated individuals and institutions to produce a game-changing situation for rare diseases. At last!!

4 – Big steps forward on non-communicable diseases at the World Health Assembly.
The World Health Assembly is the decision-making body of World Health Organisation. It is attended by delegations from all WHO Member States and focuses on a specific health agenda prepared by the Executive Board. The 66th WHA Assembly held this week in Geneva adopted important and ambitious goals of prevention and control of non-communicable diseases world-wide.

Though focussed on diseases with big impacts from large numbers, including cardiac, respiratory, cancer and diabetes, these initiatives are very relevant to rare disease because any reduction in disease burden and health service demand by the major diseases, offers better chances that our rare disease will get some priority for attention. The WHA resolutions at this session also addressed health care for disabled people, support for informal carers, and mental health systems. Read more on the WHO website.

5 – Draft National Health Index Standard open for consultation.
The National Health Index (NHI) system has operated in the New Zealand health and disability sector since the late 1970s. It contains a unique identifier assigned to each person at their first use of health and disability support services. This is used to link patients to their health information throughout the health sector. The NHI suite of standards has been developed by the Ministry of Health's Health Identity Programme (HIP) which is migrating the NHI system to a new up-to-date platform. Comments on the draft NHI suite of standards close on 12 July 2013. Dry stuff, but very important, and we hope those with an eye for systems and detail will give these draft standards close scrutiny.

6 – Save hundreds, perhaps thousands, per annum for your group on phone conference calls.
No, this is not a commercial promotion, but it is a tip on a very efficient phone conference system that will allow you to get the average cost of six to ten people on a phone conference for a hour or so, from different parts of NZ, down from hundreds of dollars to about $50 or less for each call. Check out http://www.allconferencecalls.co.nz NZORD has used this system for over a year now and the costs are almost invisible, compared to figures getting into the thousands of dollars per year previously.

Regards, john

John Forman
Executive Director, NZORD
New Zealand Organisation for Rare Disorders

ENDS

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