Pharmac’s early call for applications for rare disorder medicines welcomed

Rare Disorders NZ welcomes Pharmac’s early call for applications for rare disorder medicines to be considered at the next Rare Disorders Advisory Committee meeting.

“We are pleased Pharmac heeded our request for more advanced notice to make an application. We have raised concerns about the short timeframe given in previous years. It is the first part of an important process in the drug approval process and submitters need time to get their applications right,” says Rare Disorders NZ Chief Executive Chris Higgins.

Pharmac put out an invitation for applications for medicines for rare disorders on Monday for the next Rare Disorders Advisory Committee meeting, to be held in June 2025.

“Getting a rare disorder medicine approved and funded is an extremely slow and difficult process as it is, submitters need to at least be afforded enough time to put in the best application they can,” says Higgins.

“We would like to see much more thought and future proofing of a pathway for new and innovative modern medicine for those with a rare disorder, for example gene therapy.”

“We need to start changing the way that we think about medicines in this country. Rather than seeing these life-saving and life-changing medicines as a cost to the health system, we need to look at the whole of government cost of not treating the disorder across the disability, education, health and welfare systems, as well as the wider societal impact of not funding the medicine. Medicines are an investment,” says Higgins.