CF patients turn fury on TDs over drug that is 'too costly'
A woman whose sister died fighting for access to an expensive drug has called for a mass march on the Dáil next week after the HSE deemed the medicine too costly.
The makers of Orkambi, the pharma company Vertex, and the HSE have failed to reach an agreement on the cost of the drug which could be used to treat around half of cystic fibrosis sufferers.
The HSE's drug committee, made up of doctors and experts, has unanimously voted not to approve the use of the drug, which costs €159,000 per patient per year.
Under the system of drug approvals, the Government cannot intervene on drugs which are rejected.
But campaigners say they won't let Enda Kenny's minority government off the hook.
"They (TDs) could start by giving up their pay rise. That would help five patients straight away," one campaigner said.
Aishling Golden, from Sligo, lost her 21-year-old sister Grainne to cystic fibrosis in February this year.
She has been supporting CF sufferer and campaigner Jillian McNulty.
"I spoke to Jillian on the phone when we heard the news at the weekend and it was just heartbreaking," Aishling said.
"Grainne's last words before she died were for us to fight on and prevent any other young person suffering the way she had.
"This is utterly devastating news. How could they?" she said.
Aisling said her mum Terri spent yesterday weeping after learning of the HSE decision.
"We are going to march on the Dáil on December 7 at lunchtime and we want as many people there as possible," Aisling said.
"The TDs can start by coughing up their pay rises. That will help five or six CF sufferers straight away.
"As a family we were left devastated when we lost our beautiful Grainne and learning that more young people like her are now going to die needlessly is devastating.
"But we are not going to lie down and take this. We promised Grainne we would fight and we will fight on."
Around 550 of the country's 1,200 CF sufferers could benefit from Orkambi.
Cystic Fibrosis Ireland CEO Philip Watt said the leaking of the HSE decision to a Sunday newspaper was cruel.
"We are angry at the cynical way the HSE has conveyed this information to our patients, some of whom are very ill," the charity boss said. "The decision was leaked to a Sunday newspaper even before the minister was informed, never mind patients.
"It's a disgraceful and heartless form of communication."
He said medical evidence proved Orkambi reduced the need for hospital treatment by 40pc, helped patients immensely and reduced reliance on other expensive medication.
In a statement, the HSE defended its decision and blamed the drug company.
"The HSE has undertaken considerable engagement and negotiation with the manufacturer Vertex over a protracted period in an effort to secure a significant price reduction for Orkambi," it said.
"The HSE is disappointed at the level of meaningful engagement by the manufacturer in lowering the exorbitant price of Orkambi for Irish patients."