Mum's plea for NHS to fund her son's treatment

Louise Whytock’s son Ellis was diagnosed with the condition when he was three weeks old, and she and her husband Craig (45) are still struggling to come to terms with the news.

Louise (36), from Bearsden, says the first few months after Ellis was born were “a bleak time when they couldn’t see any way out”.

So when they discovered there’s a drug that could treat Ellis, but is not currently available on the NHS, they felt extremely disheartened.

The drug Ivacaftor-Iumacaftor (or Orkambi), which costs £104,000 per year and treats the underlying causes of the condition, was rejected by the Scottish Medicines Consortium due to a battle between the NHS and drug company Vertex over the price and long term impact of the medicine.

Louise said: “Ellis has the mutation which would make him suitable for Orkambi when he is older.

“Although he’s too young to benefit just now it would have been comforting to know that it was available.

“I understand the cost is huge but when when it’s your son, you can’t think about money.

“When they are doing all this research even if the drugs aren’t going to be available, it’s like holding a carrot up and then taking it away.”

The Cystic Fibrosis Trust has written to the Secretary for Health, Shona Robison, urging the NHS and the drug company to find a solution.