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Family's plea for access to cystic fibrosis drug Orkambi

Eight-year-old Sofia Bow has cystic fibrosis Credit: ITV Cymru Wales

A couple from Merthyr Tydfil whose 8-year-old daughter has cystic fibrosis say a row over money is depriving her of the treatment she needs.

Sofia Bow, aged 8, takes a variety of drugs for her cystic fibrosis every day. Her condition means she is prone to infection, and over time her lungs could become seriously damaged.

Her parents say access to a drug called Orkambi could allow her to live a more normal life.

But the medicine is not currently available on the NHS in Wales or England, because the price of the drug - £104,000 per patient per year - has been deemed too expensive.

The manufacturer says it is committed to making the medicine available to patients on the NHS, adding that it has been in discussion with officials to find a solution.

But some MPs are now calling for the manufacturer to lose its monopoly, after it turned down a £500 million offer from the NHS in England.