New Zealand Government Called on to Honour Rare Disease Funding Pledge

An advocacy group for people with Pompe disease in New Zealand has criticised the government for failing to uphold an election pledge, reports Scoop Independent News. Candidates from all major parties had committed to creating a special fund of $20 million to pay for rare disease medications in New Zealand. However, so far this fund has not been set up.

The fund would have paid for expensive rare disease medicines that are not currently subsidised by the New Zealand government. Myozyme, the treatment for Pompe disease, would have been one of the newly funded medicines. Pompe disease is a rare inherited metabolic disorder, present in approximately one out of 40,000 people worldwide, that interrupts the breakdown of glycogen in cells. Although there is not currently a known cure for Pompe disease, Myozyme is an enzyme replacement therapy that can help to alleviate symptoms. Myozyme is available in over eighty countries worldwide, but has been judged to be too expensive for the government in New Zealand to subsidise and so is not currently available. The proposed fund would therefore make the medicine newly accessible to New Zealanders.

At the New Zealand Pompe Network’s annual conference in Auckland this year, the president of the Network, Allyson Lock, condemned the Health Minister’s backtracking over the fund. Ms Lock described how before the election, candidates for all the parties now involved in the coalition government agreed that a special fund for rare disease treatments should be the government’s answer to the issue of Myozyme funding. However, since forming a coalition they have not fulfilled this pledge, instead claiming that there is not an official coalition policy about the issue.

Ms Lock condemned this stance as a “cynical cop-out,” stating “it’s just plain wrong that they can change their minds now they’ve got the job.”

The New Zealand Health Minister, Dr David Clark, has responded to criticism by saying that he has a “personal commitment” to funding rare disorder treatments. The government will also be making money available for rare disease patients through other routes, including pilot programs run by Pharmac.

With the promised fund being intended for the treatment of a range of other rare diseases, as well as Pompe, it is possible that more rare disease advocacy groups will speak up. NZORD (the New Zealand Organisation for Rare Disorders) is the largest rare disease charity in New Zealand. It has joined the New Zealand Pompe Network in publicly voicing their disappointment in the government’s decision. These advocacy groups are working to draw attention to the issue and pressure the government to honour their election pledge.

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Anna Hewitt

Anna Hewitt

Anna is from England and recently finished her undergraduate degree. She has an interest in medicine and enjoys writing. In her spare time she likes to cook, hike, and hang out with cats.

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