Fair for rare: Collette's editorial
We have been working hard to ensure the issue of equity for people with rare disorders is on the political radar.
Our Relationship Manager, Lisa Crawford and I attended the launch of the National Party Health caucus on 14 August, and spent time with nearly every member including Simon Bridges, Shane Reti, Michael Woodhouse and Maggie Barry. These politicians are very engaged and interested in rare disorder policy work, and next month I will be meeting with Maggie Barry to brief her more fully on the systemic challenges and barriers for people with rare disorders.
I also met with PHARMAC as part of our regular quarterly catch-ups to discuss their call for applications for rare disease medicines. I urged PHARMAC to carefully apply their policy to ensure that the funded medicines do not include antimicrobial medications for infectious diseases (however rare), or any rare disorders that are not currently able to be diagnosed in NZ – as happened in the 2016 rare disorders pilot funding. A new rare disorders subcommittee of PTAC has been convened and they will meet in November to assess the latest application for rare disorders medicines.
As always, NZORD will continue to represent the patient voice at a national level and bring you information as we receive it.
Dr Collette Bromhead