UK Government to provide funding for Orkambi to be available on NHS for Cystic Fibrosis
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Cystic Fibrosis currently gets no government funding, those not in full time education have to pay for prescriptions & everyday is a struggle. There is light at the end of a long dark tunnel for mutation F508del in the form of Orkambi. This drug drastically improves quality of life & lung function.
I suffer from Cystic Fibrosis. I was given until I was 15 to live, I’m now 28 & have a baby. It saddens me that Orkambi is ready for us but although told a new treatment for people with Cystic Fibrosis is highly important, for the benefits it offers, the cost of Orkambi is too high. The benefits are less hospital admissions, the ability to breathe with ease & being around our families for longer. This drug is available in Ireland & I ask for our UK Gov to speak with Vertex & come to an agreement
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