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Tag Archives: Vertex

Discrimination claim as Clare children denied CF ‘wonder drug’

TWO Clare children with Cystic Fibrosis who have a rare genotype are being “discriminated against” due to their exclusion from availing of a transformative “wonder drug”, a local councillor has claimed. The HSE has been in negotiations since May with Vertex about giving access for a therapy called Kaftrio for 35 young children with a specific genetic condition. This is already available to other Irish patients under an existing deal. Councillor Mary Howard described Kaftrio as a “wonder drug” that stops the progression of Cystic Fibrosis in the body. She warned that many of the 35 children are not well and have been regularly hospitalised, with more hospital visits expected to increase as the winter progressed. Speaking at a council meeting on Monday, the Fine Gael Councillor said adults and those 12 and older have been receiving Kaftrio. Last May, she recalled all children who were older than six were supposed to receive this drug. “There are 175 children with …

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Clare mum of girl with CF vows to fight for life-changing Kaftrio

AN Ennis mother of a child with Cystic Fibrosis has vowed to continue to fight so her child and others can access ground-breaking treatment at the centre of a dispute between the HSE and a pharmaceutical company. Barbara Buckley was among hundreds from across Ireland who last week gathered outside Leinster House for the “Support the Kaftrio 35” protest. Cystic Fibrosis Ireland estimate that around 140 children aged six-years-old to 11-years-old are already are on the drug Kaftrio, but 35 children with a particular genotype are not as they are outside the 10-year Portfolio Agreement that was signed by the HSE and Vertex in 2017. Barbara’s daughter is almost six years old and had expected to begin the treatment after Christmas, however without a resolution to the dispute she is set to join those who have been excluded. “Time is vital. Every day and every week ahead counts, CF won’t wait for the HSE and Vertex,” she told The Clare …

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Kilrush man seek access to new CF drug

THIRTY-two-year-old Robert Cook from Kilrush faces an every-day battle with cystic fibrosis. He lives in the West Clare town with his wife Sandra and their two children and, on the surface, everything appears normal. “We are an ordinary family that do the day-to-day things all families do. But the difference between my family and most is that I was born with an inherited life-threatening genetic disease. Cystic fibrosis affects the lungs, pancreas and most other organs in the body. The lungs are affected the most. Cystic fibrosis is a thick green mucus, which is produced in the lungs, making it harder to breath and also is a breeding ground for lung infections and inflammation,” Robert explained. Every morning, Robert has to use a nebuliser before trying to get on with his day. “My daily routine before I have breakfast or even a cup of tea involves having a number of nebulisers to work through, to help my lungs and the …

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