Rare Disease Mum Abandoned by her local MP
Lysosomal Diseases New Zealand
Rare Disease Mum Abandoned by her local MP.
For Samantha Lenik’s potential life-changing Petition to make it to Parliament, Samantha needs an MP to personally present the Petition to the House of Representatives. Unfortunately, Samantha’s local MP Mark Mitchell (National MP for Rodney) declined to receive the Petition, and with one week to go she is scrambling to find an MP who is willing to help her and other rare disease patients.
Samantha, along with other rare disease groups, plans to present the Petition to Parliament on Tuesday 15 November. The Petitions aim is to ensure Pharmac have enough funding to implement its new policy on medicines for rare diseases, which was announced back in April 2014, and to give urgency to doing so.
Samantha says she is aware that MPs are not obliged to receive a Petition, presumably to avoid situations where they are faced with topics they personally cannot agree with. “But how could Mark Mitchell possibly have any resistance to my petition asking for a fair go for patients with very rare diseases, who have been seriously neglected over access to medicines,” asks Samantha. She is now waiting on a request to Maurice Williamson that he fill the void to receive her petition and present it to parliament.
Samantha is affected by Pompe disease, a rare Lysosomal disease that affects just ten other New Zealanders. It is a fatal disease which leads to progressive muscle weakness, wheelchair dependence and breathing assistance, and ultimately less time with their families. This frightening outlook can be prevented with treatment. An enzyme replacement therapy called Myozyme can stabilise the disease and prevent deterioration. This treatment was first approved ten years ago by the FDA, the US medicine regulator, and is funded for patients in 76 countries around the world, but not in New Zealand.
The formal paper petition is also gathering signatures, and Samantha will hand this to a sponsoring MP on Tuesday 15th November.
“We need to get treated so we can get on with living our lives,” she says. “We want no patient left behind – no family forgotten.”