Jarrow family debating move to Scotland as daughter misses out on wonder drug by a hundred miles

Harriet Corr, 4, who suffers from Cystic Fibrosis with her mother Emma Corr big sister Nancy, 6, and dad Chris.

Emma and Chris Corr have been battling for more than three years - along with other campaigners - to have the anti-cystic fibrosis drug Orkambi made available on the NHS for their four-year-old daughter Harriet.

The family, from Wansbeck Road, Jarrow, are considering moving to Scotland after hearing the drug could be made available there on the NHS.

Mrs Corr says it is an option they are looking at and is disappointed that Harriet is missing out on the treatment which could soon be available less than 100 miles to the north.

She said: “After all the campaigning, we’re still no further forward. But, in Scotland they are going to have access to the drug on the NHS.

“We’re really pleased for those who have CF in Scotland, of course we are, but we are devastated.

“They have the Christmas present we hoped we would have for our daughter - access to the drug which would prolong her life.”

She added: “It’s just so heartbreaking to know only a few miles up the road from where we are, they can access the drug.

“My husband works in Scotland and it’s making a move there even more tempting.

“It’s not something we want to do, move from a place we love and where all our family are, but what are you supposed to do?

“The NHS here need to hang their head in shame. We have been told the Government has called for an inquiry and more transparancy over the costs but that doesn’t help us.

“We are losing so much hope.”

Each day Harriett depends on a variety of drugs to help keep her alive and regular physiotherapy.

Cystic Fibrosis affects the lungs, digestive system and other organs.

The build-up of mucus clogs lungs, impeding breathing and leaving them prone to chronic infections.

Ludovic Fenaux, senior vice president of Vertex International which producesd the drug said: “Our recent conversations with the Scottish Government, and the SMC’s orphan medicines process have provided important flexibility for evaluating precision medicines, such as cystic fibrosis transmembrane conductance regulator (CFTR) modulators.

“Their methods reflect the innovative nature of medicines that have the potential to extend life for patients with rare diseases, like CF.

“We are hopeful that, through this process, all eligible patients in Scotland will have access to our medicines soon.”