Laois councillors unite in call for Orkambi

Plea for Cystic Fibrosis drug

By Lynda Kiernan @laoisnews

All 19 Laois county councillors have unanimously backed a plea for the government to buy the potentially lifesaving Cystic Fibrosis drug Orkambi.

In a show of support for Cllr Seamus McDonald, whose son has CF, the Cathaoirleach Cllr Tom Mulhall got instant unanimous agreement for his suggestion that they all sign a letter to the Health Minister.

Cllr Catherine Fitzgerald tabled the motion, describing the situation as “heartbreaking”.

“Ireland has the largest number of Cystic Fibrosis sufferers per capita in the world. It is heartbreaking especially when you think that there is a drug out there that could help them. I am appealing to the Minister to listen to the Cystic Fibrosis Association, and to try and get Orkambi available,” she said.

The seconder was Cllr McDonald from Rosenallis, whose son Daniel is part of a nationwide campaign to fund Orkambi.

He thanked Cllr Fitzgerald for tabling the motion.

“I am asking the council to support myself and my son, and to put pressure on the Minister, to negotiate a deal and make Orkambi available. It would make a huge difference,” he said.

Cllr Noel Tuohy condemned the government’s refusal to pay for the expensive drug.

“I find it extraordinary that children are suffering, they know they can help, but it’s too expensive. It drives me mad to see people out collecting for things like Crumlin children’s hospital, it should all be funded by the government,” he said.

Cllr John King agreed.

“It is a shame to think people are making drugs not for the benefit of children, but themselves. Health should come before money,” he said.

Speaking to the Leinster Express last year, Daniel described CF as “soul destroying”.

“My inability to complete further education or hold down a full time job is soul destroying. CF takes no prisoners,” he said.

Ireland has 1200 Cystic Fibrosis sufferers. Orkambi is being offered to the government by US company Vertex for €400m over five years to treat 550 patients. The HSE offered €75m. A decision is due in late February.

Photo: Laois CF campaigner Daniel McDonald