Posted by Michael Wonder on 14 Dec 2016
Patients call for funding of drugs for rare disorders
13 December 2016 - People with rare health disorders are urging MPs to consider whether extra funding is needed for potentially costly medicines.
Whangaparaoa woman Samantha Lenik yesterday presented a petition at Parliament urging MPs to look at the funding and resources for those with rare diseases.
She's one of 11 adults in New Zealand with Pompe disease, which she found out she had three years ago.
"I'm 42, I'm a mum with two young kids. I want to be able to live a long and full life to be there for them as long as possible, and currently Pharmac will not fund the treatment, Myozyme, that I need.
"This treatment is funded in 76 countries around the world but not currently in New Zealand."
