In August our President Fiona Wardman and Board member Olivia Willard attended a seminar in Wellington organised by NZORD, the New Zealand Organisation for Rare Disorders. NZORD brings together a large number of New Zealand support groups for people affected by rare disorders.
The seminar was titled Abandoned? Rare Diseases, Specialised Medicines and the Politics of Access.
There were nine expert speakers as well as a panel discussion and political panel. It was a very informative day and covered perspectives from health professionals as well as human rights, legal angles and the ethics of funding medicines.
New Zealand is in a unique situation, where Pharmac takes a single view across the funding of all medications whether they are for the treatment of common illnesses and health problems, or a rare life saving drug. The majority of attendees on the day were in support of a separate fund being set aside for orphan drugs. HAE Australasia is very much in support of any policy modification that will improve access to therapies for New Zealand Patients.
It was great to see political representation from the Labour, National, Greens and NZ First parties. Labour, Greens and NZ First all supported the call for change in the way that orphan drugs are currently considered for funding.
This is a step in the right direction and we hope there will be continued discussion and progress on this important issue.