Rare disease petition presented to Parliament – December 2016

Samantha Lenik’s petition seeking adequate funding for Pharmac so it can implement its rare disease policy, and urging that urgency is given to the task, was presented at Parliament on 13 December 2016. The formal petition with 747 signatures was backed up by an online petition containing more than 2,650 signatures. This caps off mixed success in a year when 4 enzyme replacement therapies were added to the Pharmaceutical schedule, guaranteeing treatment for patients who meet treatment criteria.

But with Pharmac’s spending power being severely cut by government, we estimate only about 5 patients will get access to treatments not previously funded via Pharmac, leaving about 100 or so patients still untreated, from those diseases indicated as likely candidates for funding when the new policy was announced. Read more here.