NZORD Newsletter 2015 #3 – 12 June 2015

Hello everyone,

In this issue:

1 – National Health Committee must try harder to understand issues in diagnosis and screening.
2 – Hidden cuts to medicine funding. Where did the $180 million go?
3 – Likely funding of orphan drugs in New Zealand.
4 – Support NZORD fundraiser with purchase of Entertainment Memberships.
5 – Interim management arrangements at NZORD.
6 – And it’s au revoir from me J


1 – National Health Committee must try harder to understand issues in diagnosis and screening.

It was good to see the National Health Committee consulting recently on prospects for improving diagnosis and screening in our health system, including some discussion about responding to opportunities and challenges of genomic technologies. It was also disappointing to see such a tentative approach from them, versus the determined efforts in many similar health systems to swiftly assess and implement the benefits of genome knowledge.

Click here to find the link to the NHC discussion paper within our submission to them. We address the significant omissions in their overview document, the weaknesses in their analysis, and we call more decisive action from them.

2 – Hidden cuts to medicine funding. Where did the $180 million go?

Much was made of the 2008 promise by the incoming government to put an extra $180 million into the medicines budget. To their credit they did deliver on this promise, though you have to work your way through the smoke and mirrors to see the double counting and triple counting that makes the raw promise seem much larger than what was actually delivered.

Much quieter the government has been about the clever way they manipulated the medicine budgets since 2011 to strip much more than $180 million out of the community pharmaceutical budget since that time, compared to the amount added from 2008. The overall effect of this has been to significantly reduce the effective purchasing power of Pharmac for community pharmaceuticals. Pharmac has now assumed responsibility for hospital medicines previously funded by separate DHB budgets, and for vaccines and blood products previously funded from the Ministry, but they have the unenviable task of funding most of these additional medicine costs out of a static budget. They have had to rely on savings made to cover these additional responsibilities, because the budgets for their new responsibilities were not transferred from District Health Boards nor the Ministry, to Pharmac.

In the light of current debates about Pharmac and its overall cost-saving role – a role that is supported by NZORD – spare some sympathy for an organisation that has had its ability to obtain new medicines severely constrained by government and District Health Boards knee-capping its purchasing role by starving it of funds. No wonder we still have a significant waiting list for medicines in New Zealand.

3 – Likely funding of orphan drugs in New Zealand?

It’s a risky thing to predict the future, but based on recent informal discussions with Pharmac and with some pharmaceutical suppliers, it seems likely that in the next month or so, there will be arrangements made for a small number of orphan drugs to be added to the NZ pharmaceutical schedule and publicly funded. It has been a very long campaign to get this need addressed. Thanks to those who have worked with me, and not given up over many long and difficult years, to get this progress.

It will be a significant step forward to get new orphan drugs listed on the schedule for the first time in this century, in New Zealand. Pharmac and the politicians involved should be acknowledged for finally listening and responding to our case, especially in light of unreasonably restricted budgets they have been forced to manage with. The challenge that will flow from this will be the need to then allocate sufficient funds to do the whole job properly for the rest of the rare disease population who are waiting for their treatment to be funded.

4 – Support NZORD fundraiser with purchase of Entertainment Memberships.

If you haven't already purchased a new 2015 | 2016 Entertainment™ Membership now is the time to do so. 20% of every Membership we sell contributes towards our fundraising! For just $60, you'll receive numerous valuable offers. Click here to order.

5 – Interim management arrangements at NZORD.

We have begun our search for a Chief Executive who will continue to lead and build NZORD, with the role currently advertised on Seek and TradeMe. Applications close on the 20th of June. Please forward information about this role to anyone in your networks who you think would be a great leader in our mission to inform and support rare disease families, improve their journey through the health and disability system and promote research into rare disorders.

In the interim, we are pleased to announce that Olivia Baddeley will be picking up the helm as the Acting Chief Executive. Olivia was previously an employee of NZORD and left us to complete further studies. She will be well known to many of you and we're thrilled that she is re-joining our team from Monday 22 June.

6 – And it’s au revoir from me J

This is my last newsletter as executive director of NZORD, on my last day in the role. Thanks so much to my many allies in the battle to improve information, diagnosis, care, support and research for rare disorders. It has been an honour and a privilege to work with you all. Best wishes for your continuing efforts. I expect my path will cross with many of yours as I move on to other health, disability and rare disease advocacy roles.

Regards, john

John Forman
Executive Director