Cystic fibrosis drugs deal expected in weeks
Keith McCabe from Greystones, Co Wicklow, said the Government had effectively put a price on his son’s life.
He said it broke his heart that, as Senan’s dad, he had to again protest outside the Dáil to get him “a drug of hope”.
Mr McCabe joined hundreds of protesters yesterday to highlight the urgency of approving CF drugs Orkambi and Kalydeco.
Before the protest began, Taoiseach Enda Kenny told the Dáil he expected a deal to be reached on the price of Orkambi in the coming weeks.
Mr McCabe shook with emotion when he said his son, 3, should not be treated as an item on a balance sheet. “My son is not a monetary figure. How dare you, as the Government, use him like that,” said Mr McCabe.
Aisling Golden, from Sligo, said her sister Gráinne, who died a year ago, had so much to live for.
The young CF activist used her final moments to take off her oxygen mask and appeal for a cure.
“Gráinne was 21 years old. She had so much to live for. She wanted to live. She had so many plans,” said Ms Golden.
“It is not fair that our Government have treated our young people so badly that we have had to campaign for almost nine months for a drug that clearly has been proven to benefit people.”
Ms Golden said she held two Orkambi tablets in her hand for the first time last week and thought about her sister. “Gráinne said those two tablets were like winning the lottery,” she said, wiping tears from her face.
It is understood the HSE and drugmaker Vertex Pharmaceuticals are examining a 10-year deal that would fund the cost of Orkambi and Kalydeco.
Vertex initially sought €159,000 per patient, and the HSE estimated the cost to the exchequer would be almost €400m over five years.
CF sufferer and protest organiser Jillian McNulty from Longford, and Cystic Fibrosis Ireland chief executive Philip Watt attended a private meeting with Health Minister Simon Harris at short notice on Monday night.
Mr Watt said there had been a “very substantive discount” made by the manufacturer over the last few weeks on its list price and both sides were close to a deal.
“The minister made it clear that, while he was against the protest today, it would not jeopardise a possible final decision,” said Mr Watt.
“We want a decision at this stage. The level of anxiety among the CF community is enormous. It is not fair to them.”
Ms McNulty had joined an Orkambi clinical trial in Ireland and continues to receive the therapy as part of a managed access scheme. There are about 550 people who could benefit from the drug.
A minute’s silence was held for those who lost their lives to CF, with protesters holding purple balloons and purple roses as an expression of solidarity.
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