PARENTS of children in Fermanagh with cystic fibrosis (CF) are to take their fight for a life-saving drug to the streets of Belfast.
Arney woman Geraldine Murphy, mother of nine-year-old Daire who is living with CF, will be among the local contingent making their way to Belfast City Hall on June 22nd, as part of a demonstration calling for the wonder drug Orkambi to be made available on the NHS.
Currently the drug is too expensive for the NHS, however health chiefs have been in discussions with Vertex, the company who manufacture it. Geraldine explained while the drug wasn’t a cure for CF, it was both life-changing and life-saving for children.
“It would mean a much better quality of life. Daire is doing very well, but to prevent long-term lung damage we need him on Orkambi now. He’s nine-years-old, who know he’ll not get ill in the next year,” asked Geraldine, adding there were other children in the local area who were in even more desperate need of the drug.
She added: “Basically, they are putting a price on a child’s life. This drug has proven to be fantastic, and cause a 40 percent increase in lung function. It would ensure he [D’aire] wouldn’t have irreversible lung damage. It’s a precision drug and licensed and ready to go, it’s just all about the money. They shouldn’t be putting a price on a child’s life.”
Geraldine and other parents across the North, and across the UK, have been lobbying their local political representatives to keep the pressure on the Government in the fight to make Orkambi available. Massive support for a parliamentary petition prompted a Westminster debate in March.
For the protest on June 22nd, which happens to be “Wear Yellow Day” for CF awareness, Geraldine have said Fermanagh Sinn Fein have said they will have a representative present, however she said they have yet to hear back from other parties, all of which have been contacted.
“I would like a representative from every party in Fermanagh there to support me and all of the other families with CF kids,” she said, explaining the current Stormont impasse was also not helping their fight.
Geraldine concluded: “We’re looking for friends and family and whoever is off on that Friday to come along to the protest between 12-2pm. There are so many Fermanagh children needing Orkambi.”
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