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Monday 5 December 2016

'Government refusal to pay for drug has sentenced me to death', says CF sufferer

Jillian McNulty says she will run out of Orkambi at Christmas and fears 2017 will be her last new year
Jillian McNulty says she will run out of Orkambi at Christmas and fears 2017 will be her last new year

A woman whose life has been saved by a 'miracle' drug said she has been given a Christmas death sentence by a decision not to fund 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.

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

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.

Voted

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.

Jillian's 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 last night. "I have been taking Orkambi since July 2013 and it's very simple, I would be dead by now if it wasn't for this drug.

"There are 1,200 CF sufferers in Ireland and it can have huge benefits for around 550 of them and I am one of that number.

"I had lost 20pc of my lung function before I started the drug and I was going downhill fast. I wouldn't be here today without it.

"I have four weeks' supply left. I will begin to die at Christmas. My New Year will most likely be my last thanks to this decision and it is heart-breaking."

She said drug-maker Vertex had agreed to continue to supply the €159,000-a-year medicine until the HSE and the company reached the end of their negotiations.

"My lifeline is about to be pulled away from me," she said.

"We thought we'd get a positive decision for everyone in time for Christmas but instead this is what we're getting.

"I'm devastated. I can't believe they have come to this after six months of negotiation. It is very frightening."

Jillian said she had hoped there would have been some sort of compromise between the company and the drug manufacturer. She said she understands the company's need to charge for the medicine.

"It took them (Vertex) more than 20 years of research to come up with Orkambi and it has cost billions of euro so I understand they have to get some of their money back," said Jillian.

"When I was in Washington I met its creator Fred Van Goor. We hugged and cried together.

"I was crying because he had changed my life and he was crying because he knew that all his work was helping to keep me alive.

"I think the price of the drug is too high but I also think our Government have just put a price on my life and that is very hard to take.

"It is very unfair. I know of so many people who have already died because they didn't get this drug and now so many more will die."

Under the system of drug approvals, the Government cannot intervene on drugs which are rejected.

Campaigners say they won't let the Government off the hook. Aisling Golden from Sligo has been supporting CF sufferer and campaigner Jillian after losing her own sister Grainne (21) to CF in February.

"I spoke to Jillian on the phone when we heard the news at the weekend and it was just heartbreaking," said Aisling.

"Grainne's last words before she died were for us to fight on and prevent any other young person suffering like she had.

Devastating

"This is utterly devastating news. We are going to march on the Dail on December 7. The TDs can start by coughing up their pay rises. That will help straight away."

Around 550 of the country's 1,200 CF sufferers could benefit from Orkambi.

Cystic Fibrosis Ireland CEO Philip Watt criticised the way the announcement of the decision was made.

"We are angry at the cynical way the HSE has conveyed this information to our patients, some of whom are very ill," said the charity boss.

"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."

The HSE defended its decision and blamed the drug company for its 'exorbitant' pricing.

Vertex said it wants to continue discussions in a bid to reach an agreement, but this is viewed as unlikely.

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