Taoiseach wants cystic fibrosis treatment to be ‘best in world’
Ireland has the highest per capita rate of CF in the world due to particular gene pool
Alex O’Herlihy who has cystic fibrosis. Photograph: Alan Betson
Taoiseach Leo Varadkar says he wants treatment for cystic fibrosis (CF) here to be “among the best in the world”.
Speaking in advance of the national fund-raising appeal for Cystic Fibrosis Ireland (CFI), which campaigns for improved services for CF patients, he said the quality and length of people’s lives was improving.
“Given the high prevalence of the condition in Ireland and the vast number of families affected, it is our ambition to make sure the CF treatment in Ireland is among the best in the world.”
Ireland has the highest per capita rate of CF in the world, due to the particular gene pool here.
Known as “65 Roses Day” – as children find it easier to say “65 roses” than “cystic fibrosis” – the day this year falls on Friday, April 13th.
People can support in a number of ways, including by buying a purple rose for €2 in participating shops or by texting 65ROSES to 50300 to donate €2 – of which CFI will get at least €1.80.
Among those optimistically looking to the future is CF sufferer Alex O’Herlihy (6). His parents, Julie and Ian O’Herlihy, have campaigned since his birth for better treatment, particularly for the provision by the HSE of the drug Orkambi. It costs about €159,000 per year per patient.
Alex will get the drug, they hope, in coming weeks.
In January, Minister for Health, Simon Harris, announced eligibility for the drug would be extended to children aged 6 to 11. In April 2017, Government agreed a deal with Vertex, the maker of Orkambi, to allow State-funded access to the treatment for people who have CF, aged 12 and over.
“I was inside in the kitchen with Alex watching the news the day Minister Harris said the Government was going to pay for Orkambi. The tears were just rolling down my face. I had to explain to Alex they were happy tears and the new magic medicine would help to keep him well. He’s very excited to get it.”
Though Orkambi will not cure Alex’s CF, it will address some of its key causes, including his body’s inability to properly break down fat, absorb fat-soluble vitamins A, D, E and K, or to clear mucus from his lungs.
His current treatment involves using a nebuliser and PEP (positive expiratory pressure) machine to help clear his lungs, taking enzyme tablets to break down fat, and, exercise. Orkambi works at a cellular level in the body to help balance the salt and water in organs such as the lungs.
“Nothing will change about Alex’s routine,” says Julie. “But we hope there will be less infections, less need for antibiotics, that he will be stronger.
“He’s a very happy, self-sufficient six-year-old. He has never known any different. But we do worry, we look at him and worry about whether he’ll decline. It’s never far from your thoughts. There has been a dark cloud over us but that cloud has got a little brighter.”