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Pompe Patients Plea for Funding

Pompe Patients Plea for Funding

Pompe Disease patients are being ignored by National Party candidates and the Prime Minister in the lead up to this weekend’s general election.

The New Zealand Pompe Network has canvassed all political parties on whether or not they will support the group’s call for funding of Myozyme to treat the rare and fatal disease. Labour and NZ First have pledged their support, but National remains determined to withhold the medication. A stance they have held since they have been in office.

The letter to all party leaders and candidates asked these 3 questions:

1. If elected in this upcoming General Election, will you support Pompe Disease patients by pressing for PHARMAC to fund the treatment?

2. Will you apply your voice and vote in Parliament to ensure sufficient funds are available for PHARMAC to approve the funding of Myozyme?

3. Do you think, in a first world country like New Zealand, medicines for fatal diseases should be withheld from sufferers?

The Minister of Health, Jonathon Coleman, sent this reply:

Dear Ms Lock,

On behalf of Hon Dr Jonathan Coleman, Minister of Health, thank you for your email of 6 August 2017 with a letter from the New Zealand Pompe Network.

The Minister has noted your comments and advises that there is no further update on this matter since his last correspondence of 30 May 2017.

Thank you for writing.

Mrs Lock, President of the New Zealand Pompe Network, said “Pharmac refuses to fund the only treatment available - an enzyme replacement (ERT) called Myozyme. They say there is not enough money in the budget. The government refuses to ensure that PHARMAC have the funds to provide Myozyme. This medication has been around since 2006 when it was first approved. Since then it has been made available to patients in over 80 countries worldwide”.

Pharmac also claims the benefit to the patient is not worth the cost to the Government, despite being given a massive discount on the price by the drug maker. Jonathan Coleman says “we have a world class health system in New Zealand”, yet people like us are dying here because we can’t access life saving medication.

Mrs Lock also said patients are sent around in circles between the Health Minister and PHARMAC. “The Health Minister claims he can't interfere with the decisions PHARMAC makes and PHARMAC say they are acting on behalf of the Government. We need a Government that will stand by its people and not hide behind its bureaucrats “.

“The government decides on priorities for the health budget and directs PHARMAC to fund medicines which are in line with those priorities. Recently this has included anti smoking programs and diabetes. Rare diseases like Pompe disease have never been a priority, yet there are around 7000 rare diseases affecting 8 percent of the population. If evenly spread, 1 in 12 households would be affected by a rare disease. Isn’t that enough to make us a priority too”?

For more information on Pompe disease, please go to our web page:


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