Petition for rare disease funding delivered to Parliament
A rare disease petition campaigned by Pompe sufferer Samantha Lenik has been delivered to Parliament.
The Stanmore Bay mother of two flew to Wellington to hand over the petition, backed by nearly 3000 signatures.
Rodney MP Mark Mitchell received the petition on behalf of Parliament.
"We are very happy with all the support we have had. It is great to know that the petition is now being considered by Parliament and I look forward to hearing from Mark Mitchell as to its progression," Lenik says.
"It will be progressed to the Health Select Committee, and I hope to be able to speak to them so they can see people who are affected and need treatment."
Pompe disease is a rare Lysosomal disorder affecting 11 New Zealanders.
A progressive illness, Pompe leads to debilitating muscle weakness, respiratory failure, and a shortened life expectancy.
A proven treatment for the disease exists and is available in 76 countries, but not in New Zealand.
The aim of the petition is to ensure Pharmac has 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.
"We hope the petition will mean that the government will look into the funding for Pharmac and its resources," Lenik says.
- Rodney Times