NZORD - the New Zealand Organisation for Rare Disorders
Hello everyone,
Should I cover the good news or the bad, forRare Disease Day on Friday 28 February?
There’s lots of good things going on with awareness activities and fundraisers for various support groups, and good news
stories about small but dedicated teams of researchers in New Zealand making steady progress in understanding some very
difficult rare diseases.
Likewise, various clinical groups are working to improve care by networking to ensure more joined-up services for rare
disease patients across the country, with improvements to paediatric palliative care probably the stand-out example
within these new networks. Specialist labs and genetic technology are rapidly improving the chances that those with rare
diseases will get an accurate diagnosis much sooner than has happened in the past, and screening programmes and advanced
IVF technologies have significantly increased the number of couples who can avoid fatal or seriously disabling
conditions in their next pregnancy.
So why the pessimism? Why even anger? Well, just one week before rare disease day, Pharmac produced itsProposal for Change in its decision criteria following a lengthy consultation process last year. NZORD had intended taking time to
carefully analyse this document to see if any real and positive change was indicated. Our initial read said NO, but we
didn’t want to rush our conclusions, and we have an offer we are still keen to take up to meet Pharmac and discuss the
detail of this andother recent correspondence about their decision making responsibilities.
Our patience and careful steps forward were dealt a cruel blow when Pharmac’s chief executive provided his own brief but
clear analysis in aStuff press article, emphasising that no substantive change was intended. There would be no shift in their approach to evaluation and
decisions regarding treatments for rare (or orphan) diseases, despite clear indication from their consultation of
widespread community and stakeholder support for such a change.
Pharmac are arrogantly fixed on the idea that they are right and we all simply need help to understand their decisions.
Yet a range of commentators including the Ombudsman, academic and litigating lawyers, health economists, moral
philosophers and clinicians, are saying they need to adjust their thinking and their decisions. In addition, these
arguments which support NZORD’s and other patient advocates’ views, are now mainstream political thinking. All major NZ
political parties other than the National party, now support an Orphan Drugs Access programme, such as that recently
introduced in Scotland and reflecting such programmes in place in other parts of the world. Even Peter Dunne, who has
been associate Health Minister for much of the past 14 years and a strong defender of Pharmac, is on record (Medicines
NZ seminar, Auckland 9 October 2013) as supporting a separate fund so drugs for orphan diseases can be considered
separately from drugs for common diseases.
Today’s announcement by Health Minister Tony Ryall of his retirement at the next election, naturally sought to claim
kudos for many improvements in health care delivery. But he was noticeably silent on the 2008 pledge in the National
Party’s election manifesto to improve access to highly specialised medicines. That promise has crumbled to dust as
endless reviews and consultations have changed nothing in any substantial way for those with orphan diseases.
So it seems clear that Pharmac will continue ignoring the now overwhelming views of informed stakeholders on these
matters, and bunker down in a decision process devoid of community values and without sound ethical justification, while
ignoring the human rights and other responsibilities they have to address equity issues and reduce health disparities.
We conclude that the greatest threat right now to the health and well-being of New Zealanders with rare diseases is the
health economist who lacks a moral compass, and especially those who regularly use double-speak and half-truths to
defend and justify their position.
Regards, john
John Forman
Executive Director
NZ Organisation for Rare Disorders
ENDS