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National stay silent on rare disease funding

National stay silent on rare disease funding

With less than a week before the elections, I still feel that one of the most important issues in this election is not being fully addressed; health!

We are told by the National Party that we have a world class health system, and yet when we speak to the doctors and nurses who are overworked, to the people on waiting lists, and to the very sick who are waiting for access to proven treatments to be approved and funded, we hear a completely different story.

I am one of those sick people. I suffer from a rare muscular condition called Pompe disease. A debilitating illness that without treatment will cause me to waste away prematurely. There is a medicine which halts the progression of this disease. This medicine is called Myozyme, and is funded in 80 countries. It is a proven enzyme replacement therapy that is not funded in New Zealand. The Government repeatedly says the cost outweighs the benefits and that there is not enough proof this medicine works.

Myozyme is a proven enzyme replacement therapy, with numerous clinical trials attesting to its effectiveness. It has shown to represent a 59% reduction in mortality. It slows down the devastating decline of muscles in the body and gives people more time with their families. Time to lead a life not restricted by mobility issues or mechanical breathing assistance.

I, and other members of the New Zealand Pompe Network, have written to the Prime Minister, and to the Health Minister asking them to look into the funding of Myozyme. I even presented a petition to Parliament, and went before a Health Select Committee in June this year, where I presented my case as to why this drug should be funded and why Pharmac needs better resources to fund rare disease treatments. In response, the Prime Minister referred us to the Health Minister and the Health Minister says that he cannot interfere in matters of Pharmac. The Health Select Committee have said they hope to have an answer to my petition by the end of the year. But this isn’t good enough. This is a fatal disease and people are dying while the government wastes time, precious time!

Labour, New Zealand First and other parties have responded positively to our communications. We have a commitment that they will help us. We have heard nothing from National, either positive or negative, just stone cold silence.

Why do we still hear nothing from National on funding of Myozyme or even on the funding of rare diseases in general? We are a minority population group in New Zealand, but we are New Zealanders and while we are small in number we deserve to be heard. People will DIE without intervention from our government!

Samantha Lenik
Vice President
New Zealand Pompe Network


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