NZORD press release

27 February 2015

Pharmac’s announcement today that it’s in active negotiation with 8 companies for supply of medicines for rare disorders, is welcome news for patients currently denied access to approved “orphan” medicines. But the NZ Organisation for Rare Disorders says there is still a significant problem with the small amount of money available in this fund, meaning that a sizeable number of the patients are certain to miss out on treatment again this year.

Executive director of NZORD, John Forman, says that the $5 million fund announced last year was never going to provide a fair slice of the pie for close to 100 patients with very rare conditions needing expensive therapies. He says that estimates based on best practice elsewhere in the world suggest that around $25 million would be needed, with some price discounting already allowed for in this estimate.

“We want this process to produce a breakthrough in treating New Zealanders with rare “orphan” diseases. They have been denied fair access for too many years now. But we do not want to see an artificial winners and losers situation arise because the money Pharmac has been able to set aside is far from adequate,” says Forman.

NZORD surveyed all political parties in the election campaign period last year and found widespread support for a more generous Orphan Drugs Access fund to be established and for the funding decisions to be made in the Ministry of Health rather than with Pharmac.

We still think that’s the best way to do it and lots of others agree with us. We’re also pleased to note Pharmac’s acknowledgement of Rare Disease Day, 28 February, in the timing of its announcement,” says Forman, “but a better and more sustainable solution to our needs would come from a more realistic budget, managed in a way that recognised many variables for rare diseases that are not allowed for in Pharmac’s decision model.”

NZORD says that while the task sits with Pharmac, it is essential they have a realistic budget capable of delivering the treatments needed. NZORD calls on the DHBs and Minister of Health to ensure there is enough funding available to achieve this, rather than secretly stripping close to $100 million out of community medicine funding managed by Pharmac as has been done over the past few years.

Regards, john