Posted by Michael Wonder on 05 Jul 2019
Government breaks promises to Pompe disease sufferers
5 July 2019 - The New Zealand Pompe Network recently presented a petition at Parliament asking that the House of Representatives urge PHARMAC to fund Myozyme for late-onset Pompe disease, and also urge the Minister of Health to provide additional funding to Pharmac to enable the drug to be subsidised.
Mrs Allyson Lock, President of New Zealand Pompe Network said, “A submission to provide the Health Select Committee with background information about the matters outlined in our petition has also been provided. We will also present an oral submission in front of the Health Select Committee at Parliament on the 7th of August.
Our petition asks that the drug Myozyme be funded by PHARMAC and that the Minister of Health and the Prime Minister, increase the PHARMAC budget so that this drug can be purchased. More people will die without it.
