Rare disease group calls on Govt to honour election pledge

27 March 2018

Speaking at the Network's annual Conference in Auckland at the weekend the President Allyson Lock said the backtracking by the Health Minister is shameful. 

According to Mrs Lock: “Before the election, Labour, New Zealand First, and the Greens all committed to setting up a $20million fund for medicines like Myozyme. Now, they say that any promise made by Labour is not valid because technically it is not a Labour Government it is a Coalition Government”.

“Technically, that might be true”, she said, “but that is just a cynical cop out. I mean each member of the Coalition said they were in favour of the fund before they got elected. Now they say that there is no official Coalition policy on the issue.”

Myozyme is the only treatment available for Pompe disease patients but Pharmac refuses to pay for the treatment claiming that the benefit to the patient is not worth the cost to the Government. When candidates for election were asked individually to state their position on funding for Myozyme the candidates for the three coalition parties all agreed that a special fund for rare disease medications was the answer.

Mrs. Lock said, “It's just plain wrong that they can simply change their minds now they've got the job.”

Pompe Disease is an extremely rare disease affecting about one in 40,000 people worldwide. Although there is no cure, there is a treatment called Myozyme and without it the disease is usually fatal. Myozyme is available in more than eighty countries but not New Zealand.

The New Zealand Pompe Network represents patients and their families in this country and the weekend's conference attracted more than 40 participants with speakers attending from the USA and Australia as well as New Zealand.