Posted by Michael Wonder on 11 Jul 2016
Uncertainty for Masterton mother after drug trial ditched
11 July 2016 - Masterton mother of three Allyson Lock is one of 11 Kiwis with Pompe disease, a rare and incurable degenerative disorder. The drug trial she has been on for the past five years has been abruptly cancelled.
In a few weeks' time, Allyson Lock's fate will be left "swinging in the wind".
The Masterton mother of three has Pompe disease, a rare inherited degenerative disorder which is almost always fatal.
For the past five years Mrs Lock, 51, has been on a drug trial run by pharmaceutical giant BioMarin.
"The drug was giving me my life back," she said.
But last week she found out the trial had been canned.
"It halted the progression of the fatal disease, so without it I will die.
"It's a proven treatment for Pompe. It's been on the market for 10 years and is available in nearly 60 countries. Australia started funding it last year."
However, New Zealand refused to fund the drug, Mrs Lock said.
