21 September 2017 - 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.

Read Scoop Business article