Press Release – New Zealand Organisation for Rare Disorders
Theres 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 …NZORD – the New Zealand Organisation for Rare Disorders
Should I cover the good news or the bad, for Rare 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 its Proposal 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 and other 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.
NZ Organisation for Rare Disorders