Academics, advocates, patients and politicians wrestled over the legal, ethical and scientific issues surrounding the funding of treatments for suffers of rare disorders at one-day seminar in Wellington this week,
The seminar, titled Abandoned? Rare disease, specialised medicines and the politics of access, was held by the New Zealand Organisation for Rare Disorders. The event featured patients, law and policy experts and a political panel deliberating on how government drug purchasing agency PHARMAC funds treatments for rare disorders, which are often expensive pharmaceuticals.
PHARMAC is currently undertaking a public consultation on the decision criteria it uses to choose which drugs to subsidise, with submissions closing at the end of August.
Coverage of the seminar included:
Radio New Zealand: Labour promises special fund for orphan drugs
3 News: No funding for ultra-rare blood disease
Radio New Zealand: Call to use international covenants in fight for medicines