'I don’t want to bury another child' - Mum’s plea on Orkambi controversy

Protest outside Leinster House yesterday. Pictures: Stephen Collins/Collins Photos

A mother has made an emotional plea outside Leinster House for her teenage son to be given a groundbreaking drug to treat cystic fibrosis.

“I do not want to bury another child,” said Phil Dunphy, from Rathangan, Co Kildare.

Ms Dunphy’s daughter, Sarah, a law graduate, was just 23 when she died in March 2014. She was considered a suitable candidate for Orkambi but did not get it.

“Sarah has a younger brother, Shane, aged 19, who needs Orkambi. I want that opportunity for him. I do not want to bury another child,” said Ms Dunphy.

She had joined hundreds of protesters outside Dáil Éireann to express their frustration and upset about the delay in securing approval for the drug.

Around 550 people with CF would be eligible for the therapy if reimbursement was approved in Ireland.

The drug manufacturer, Vertex Pharmaceuticals, initially sought €159,000 per patient per year but claims it has substantially reduced its asking price in talks.

Health Minister Simon Harris, issued a statement last night saying he was pleased that Vertex had told the HSE it wanted to restart drug price negotiations.

Mr Harris said Vertex must return to the table with a “significantly” better offer. However, he was pleased that negotiations would start again.

The minister attended a meeting of EU health ministers in Lisbon yesterday on drug price negotiations.

During the meeting he raised the “unacceptably high price” Vertex had put on Orkambi, making it inaccessible, not just for Ireland’s CF patients but for other patients around Europe.

“I want to see CF patients receive access to the best treatments possible. That remains my priority,” he said.

The cystic fibrosis drug Orkambi.
The cystic fibrosis drug Orkambi.

The protest outside Leinster House was organised by Jillian McNulty from Longford, who has CF and is receiving Orkambi as part of a clinical trial.

About 40 people with CF in Ireland are receiving the treatment as part of a trial or compassionate use programme.

Ms McNulty’s brother, Derek, also had CF. He was just five years old when he died in 1975.

Ms Dunphy said her daughter, Sarah, should have been given the same opportunity as Ms McNulty to have the treatment.

“She wasn’t, and she’s gone,” she said.

Ms McNulty said she had campaigned for the past two years for people like her to be able to get Orkambi. It had transformed her life.

“If we do not have word by January we will stage another protest then. We will get Orkambi and our tears then will be tears of joy.”

Protesters left purple roses outside the Dáil.

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