Wednesday 19 September 2018

CF wonder-drug activist Jillian set for 'emotional' trip to States

Jillian McNulty addresses a protest outside Leinster House last month, calling for the HSE to fund CF drug Orkambi
Jillian McNulty addresses a protest outside Leinster House last month, calling for the HSE to fund CF drug Orkambi

Cystic fibrosis (CF) campaigner Jillian McNulty is set to visit the headquarters of the US pharmaceutical giant that produces wonder-drug Orkambi.

The HSE is locked in a dispute with Boston-based company Vertex over the pricing of the drug for CF sufferers.

Jillian (40), from Co Longford, will visit Vertex next month to see the laboratory where the €160,000 drug Orkambi is produced.

"This is going to be a really emotional experience for me," she said. "I'll be standing in the lab where the drug that's saved my life is made.

"If I hadn't been able to get the drug, I probably wouldn't be standing here and I certainly wouldn't be able to get on a plane and go to Boston."

Jillian is one of the few in Ireland taking the drug because she was fortunate enough to gain a place on a clinical trial.

However, CF other sufferers are still waiting to hear if the drug that Jillian says turned her life round will ever be introduced here because of an impasse between the HSE and Vertex over cost.

Jillian became seriously ill in her 30s with CF, but was granted access to Orkambi via a medical trial and has been healthy for the past two-and-a-half years.

"Before the drug, I spent up to eight months a year in hospital," she said. "I was fighting to stay alive, but I know I might not have been here today but for that drug.

"It makes me feel guilty to know I've got Orkambi and it's turned my life round, but my friends are dying.

"I also know an 11-year-old girl who's been given a couple of months to live.

"Others are waiting for transplants and others are declining. Good people need this drug to survive."

Earlier this month, Longford County Council backed a move to call for state funds to be found to introduce the drug. On Monday, Westmeath County Council echoed the call.

Jillian has been instrumental in the campaign to see the drug introduced, and she will lead a protest at the Dail on March 1.

"The kids are the reason I'm out fighting," she said. "I won't stop until more than 500 patients have this drug.


"The HSE and Vertex need to immediately conclude a deal because there are patients that just can't wait any longer and will die soon."

A Vertex spokeswoman said: "As the HSE have indicated, we are in ongoing discussions with them.

"We presented a proposal to them that recognises the unique burden of CF in Ireland.

"It reflects our need for continued significant investment to develop new medicines for the two out of three CF patients who do not have access to a medicine to treat the underlying cause of their disease."

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