Jenny Noble
Jenny Noble with 11,270 supporters

Petitioning The House of Representatives of New Zealand and Minister of Health Dr Jonathan Coleman

New Zealand patients with rare diseases need treatment too

My name is Samantha Lenik. I am a mother to two young kids and a wife to a husband who is in the Royal New Zealand Navy. I have a rare and debilitating disease called Pompe. I share this same disease with 10 other Kiwis, of which Freda Evans and Yakuta Moiyadi appear in the photo with me.This is a rare genetic neuromuscular disease that causes progressive muscle weakness throughout the body and also the diaphragm, and can result in premature death. Right now I can walk and breathe without assistance, and I want to be able to stay like this for as long as possible.To prolong my life I need an Enzyme Replacement Therapy called Myozyme. Myozyme is clinically proven to slow down the progression of my disease and is funded in 76 countries worldwide, but not in New Zealand.Here in New Zealand, patients with rare disorders like Pompe, have been fighting for 10 years or more to gain access to treatments which are provided in most developed countries worldwide. Two and a half years ago PHARMAC finally established a policy for funding treatments for rare diseases and set aside a special rare disease drugs fund. Unfortunately in that period very little progress has been made in improving funded access to the eight treatments signaled when the special fund was set up. It is clear PHARMAC are not sufficiently funded to deliver on the treatments for rare diseases that are so desperately needed.Freda, Yakuta and I, along with other patients with Pompe disease, and also those with Fabry disease, Morquio disease, Hurler disease, Hunter disease, PNH, aHUS and Cystic Fibrosis, want to get the treatments we need in a fair and equitable way. Most of these diseases have no other treatment options available.In November, this petition will be presented to the House of Representatives in New Zealand, and to Dr Jonathan Coleman, Minister of Health, asking that the House consider, under urgency, the need for PHARMAC to have sufficient funding to implement its rare disease policy. We want to be given access to these treatments that will enable Kiwis to live a better quality of life with their families, for longer. Please sign our petition today, so we can get treated and get on with living our lives.We want no patient left behind – no family forgotten.