Cystic fibrosis patients reveal hopes for Orkambi

Cystic fibrosis campaigner Jillian McNulty is hopeful, for the first time, that her parents will not have to bury another child — they have already buried two.

Cystic fibrosis patients reveal hopes for Orkambi

Jillian, 41, from Longford, campaigned tirelessly for free access to Orkambi and Kalydeco for those living with CF.

On Tuesday evening it was announced that a deal had been struck between the State and the manufacturer of the drugs.

Speaking on the eve of Cystic Fibrosis Ireland’s fundraising appeal today — 65 Roses Day — Jillian said she had defied the odds despite her condition.

“When I was born my parents were told that I would not live beyond four or five years and yet I am still here annoying them. They have buried two kids. Orkambi means that, hopefully, they won’t have to bury me,” she said.

Jillian had planned to lead a third protest outside the Dáil yesterday. Instead, she joined a small group at the gates to remember people with CF who had died and their families. “Obviously, the agreement is a reason to celebrate for people like me who are alive. But I also want to remember those who are gone. That’s why we are having a moment of silence outside Leinster House.”

Jillian said the deal meant her friends and their children now have a chance at life. She said she hopes they get the opportunity that she had been given. She had lost too many friends and does not want to lose any more.

“A cure is needed for CF and Orkambi is the closest thing we have to a cure. Orkambi has given the CF community hope, and I am hopeful that Orkambi will work for others and transform their lives, so they don’t need to suffer anymore.”

Jillian began taking Orkambi almost three-and-a-half years ago as part of a drug trial when her health started to deteriorate. She would have to take a nap for two to three hours during the day “just to function” and was admitted to hospital every four to five weeks.

Priscilla Crombie and her children, Dermot, 9, and Hannah, 5, from Rhode, Co Offaly, will be urging people to buy a Purple Rose to raise €100,000 for vital cystic fibrosis services.

Dermot has been taking Kalydeco for the past year. Because he has the uncommon gene G551D, he automatically qualified for Kalydeco. Since taking the drug he has gained weight, grown taller, and no longer coughs.

“I am finally spending a fortune on clothes for him, and I never thought that day would actually come,” said Priscilla. “Just like his sister, Hannah, who does not have CF, we intend to make sure he lives a normal life like anyone else and is not excluded from any opportunities because of CF.”

Cystic Fibrosis Ireland chief executive Philip Watt said they had got assurances the drugs would become available within the next couple of months.

The agreement between the HSE and Vertex includes access to “pipeline drug therapies” that are showing promise in the advanced stages of clinical trials.

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