Thursday 30 March 2017

'This is a death sentence' - woman whose life saved by miracle drug

Jillian McNulty Picture: Damien Eagers
Jillian McNulty Picture: Damien Eagers

Greg Harkin

A woman whose life has been saved by a 'miracle' drug says she has been given a Christmas death sentence by a decision not to continue funding it.

Jillian McNulty (40), from Longford, is one of eight cystic fibrosis (CF) sufferers given the medicine Orkambi for free as part of trials by the drug company which makes it.

She says her supplies of the drug are due to run out on Christmas week and she won't get any more from drug company Vertex.

Her evidence to the US Food and Drug Administration in Washington led to Orkambi being approved for general use to treat CF.

"I have just been sentenced to death," said a tearful Jillian.

"I have been taking Orkambi since July 2013. I would be dead by now if it wasn't for this drug."

Read More: CF patients turn fury on TDs over drug that is 'too costly'

"I have four weeks' supply left," she said.

"When I was in Washington, I met its creator, Fred Vangoor. We hugged and cried together. It is so unfair."

Irish Independent

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