Rare Disorders NZ has today written to the new Minister for Pharmac, David Seymour, reiterating their call for the removal of Pharmac’s Chair, Steve Maharey.

Rare Disorders NZ is appalled no action has been taken against the CEO of Pharmac, Sarah Fitt, for the unacceptable language revealed in internal correspondence between Pharmac executives regarding journalist Rachel Smalley, and is calling for the Chair to be removed.

“We twice asked former Health Minister Verrall to take action, but we were ignored. We hope that the incoming Minister will show through decisive action and leadership that he expects the executive to conduct themselves at all times respectfully and with best intent towards the people they ultimately serve,” says Rare Disorders Chief Executive Chris Higgins.

The language in the revealed emails reflected a culture of arrogance and superiority over the patients dependent on their decisions regarding medicine access.

“Patients need to trust that Pharmac has their best interests at heart. When you are suffering from a debilitating disorder, you need to know that there is hope and that those at the helm of deciding whether you can access the medication you need are doing everything in their power to make that happen. Right now, there is a high level of mistrust towards Pharmac and that can only change with a change in leadership,” says Higgins.

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Rare Disorders NZ is the collective voice of all people living with a rare disorder and their whānau. Our rare collective is made up of more than 160 disorder-specific support groups.

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