A Wairarapa woman who suffers from a rare and incurable degenerative disease says she only found out her medical trial was ending when she turned up at the hospital for treatment.
Allyson Lock has Pompe disease. In adults without treatment, it leads to progressive muscle weakening and problems with breathing and swallowing. It is almost always fatal.
But she was selected to go on a trial, funded by pharmaceutical company BioMarin for a new form of treatment, Myozyme.
At first, she flew to Australia for her infusions, but recently she's being getting them in Auckland.
They work - her health is stable, and her breathing isn't getting worse.
Two weeks ago, she signed a contract with BioMarin extending the trial for a further 10 years, and was absolutely delighted.
"You find out there is a drug to treat you but Pharmac won't fund it, then I got on this treatment and it gives you a whole new lease on life.
"I've had five years of being extremely fortunate."
But without explanation, or warning, that's been cancelled. The company didn't even tell her - she found out from a friend in Canada, she said.
"The drug company's just cancelled it - I'm not really sure why."
Her next infusion, in a fortnight, will be her last.
"They didn't even give us time to source another option," Ms Lock said.
"There seems to be just a callous disregard to the people who have been on this trial, which is pretty difficult to believe actually."
Checkpoint contacted BioMarin both in Australia and in the United States to ask why Ms Lock's trial had been cancelled, but they hadn't responded.
Pharmac said it had no responsibility for clinical trials and in New Zealand such trials were subject to approval by a range of different ethics committees.