MERRIGAN FAMILY ‘DEVASTATED’ BY HSE’S CF DRUG REVELATION
MASON Merrigan’s family should have been celebrating his fifth birthday today, Tuesday. Instead, they are coming to terms with the news that the HSE is set to refuse to fund a new cystic fibrosis drug, Orkambi, that will prolong his life.
His mother Claire, from Riverchapel, said that the birthday celebrations began on Saturday with a trip to Kidzone in Gorey. ‘We came back on a high,’ she said. ‘ Then we learned through Twitter that the Sunday Business Post had a front page headline the next day to say the HSE would be refusing to fund Orkambi.’
‘It’s heartbreaking to say the least,’ she said, calling on the Minister for Health Simon Harris to overturn the decision.
Claire is part of a delegation of parents who will speak to elected representatives at the Houses of the Oireachtas this Thursday. They will also protest outside the Dáil at 1.30 p.m. on Wednesday, December 7, and are calling for public support.
She explained that the HSE says the drug will cost €159,000 per patient a year, but believes this price has been reduced in the six rounds of negotiations so far. She said that the drug will greatly cut down on hospital visits and lung transplants, resulting in savings to the health system.
‘We’re devastated, especially when we found out they are putting a price on our son’s life,’ she continued. ‘ The earlier they get the drug the better. Mason unfortunately has lung damage already. It’s just so upsetting when you see his daily routine and what he has to go through, and our government is failing him.’
‘When he was born, we were told about all the new drugs. We didn’t think we’d be fighting tooth and nail for them,’ she added.
The family is fundraising to build a home gym to help Mason stay healthy. They recently accepted a cheque in the Taravie, Courtown, for €1,668, proceeds from a Halloween fancy dress night. ‘ The support we get in the community is immense,’ said Claire. ‘ To be constantly fighting the government is just demoralising. We need our energy to keep Mason well. This is just sapping the life out of us.’ She said the donation will help put a roof on the extension. A big thank you was sent to all who supported.