NZ Behind Rest of Modern World in Medicines Funding

Press Release – New Zealand Pompe Network

New Zealand is lagging behind the rest of the modern world when it comes to funding medicines for rare diseases according to the Secretary of the New Zealand Pompe Network Mr. Vaughan Thomas.NZ Behind Rest of Modern World in Medicines Funding

New Zealand is lagging behind the rest of the modern world when it comes to funding medicines for rare diseases according to the Secretary of the New Zealand Pompe Network Mr. Vaughan Thomas.

Mr. Thomas, an expat Kiwi living in Australia, has a daughter with Pompe Disease. “My daughter was diagnosed with Pompe Disease in 2010 after several years of uncertainty about her condition”, he said. “We were traumatised because we were told there was no cure and the only treatment, an enzyme replacement therapy called MYOZYME, was too expensive for the average person to pay for.”

Mr. Thomas said that at that time Australia had been refusing to pay for the treatment for the then approximately 35 known patients just as New Zealand is doing now.

“Fortunately for us” said Mr. Thomas, “Genzyme who makes Myozyme organised for my daughter to go on their compassionate access program so they provided her treatment free of charge”. He said that the treatment was never guaranteed, certainly not for the rest of her life. “The problem was they had applied on numerous occasions to the Pharmaceutical Benefits Advisory Committee for Government funding but they kept saying there was insufficient evidence of its benefit. Genzyme has a responsibility to shareholders as well and I couldn’t see them continuing to give away expensive drugs without any prospect of the Government assisting.”

Mr. Thomas said that the Australian Government finally agreed with the rest of the civilised world and began paying for Myozyme for all patients in 2015. “Although I am happy that my daughter is getting the treatment she needs it means we can’t live in New Zealand because Pharmac still refuses treatment”, he said. “I have friends in New Zealand who are dying with Pompe Disease because Pharmac is being obstinate and arrogant. This treatment is available in more than eighty other countries but Pharmac thinks it knows best.”

According to Mr. Thomas this puts New Zealand alongside China and India who also do not pay for the treatment yet all leading OECD countries including all of the European Union, the United Kingdom and the United States of America as well as Canada and South Africa provide funded access.

Mr. Thomas concluded “I am always so proud of how New Zealand punches above its weight on social reforms. New Zealand has been a world leader in equal human rights. But in this”, he said, “I am ashamed, disgusted, and saddened by how New Zealand treats its sick and dying.”
ENDS

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