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