South Shields parents still hopeful after cystic fibrosis drug setback for poorly daughter

A South Shields couple remain hopeful of getting cystic fibrosis treatment for their daughter despite another setback.

Tuesday, 20th August 2019, 06:00 am
Updated Tuesday, 20th August 2019, 06:05 am
From left: mam Emma Corr, daughter and cystic fibrosis sufferer Harriet, four, Nancy, seven and dad Chris.

Emma and Chris Corr’s four year-old daughter Harriet suffers from the condition, but oral medicine Orkambi, which is used to treat it, isn’t available on the NHS in England.

The drug is manufactured by American pharmaceutical giant Vertex and has been available in Scotland.

The family considered moving there, but after a meeting between Vertex and the Scottish Medicines Consortium (SMC), Orkambi will not be issued in Scotland either due to its high cost.

Harriet Corr, four, with big sister Nancy, seven.

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The National Institute of Health and Care Excellence (NICE) in England have already said the same, although Vertex dispute the reported figure of £104,000 per year, per patient.

Vertex turned down an offer from the NHS of £500 million over five years for access to Orkambi and other cystic fibrosis drugs. The company claimed that if the offer was replicated globally, it would go out of business.

But a Canadian academic has claimed the firm stands to make £17 billion from Orkambi and a sister drug, Symkevi. Vertex said it was “disappointed by the (SMC’s) decision”.

However, Emma, 37, remains optimistic after it emerged that the company is now in discussions with the Scottish government and hopes for positive implications for the rest of the UK.

Four year-old cystic fibrosis sufferer Harriet Corr.

Emma said: “We’re really disappointed and we’re gutted for Scotland.

“But irrespective of SMC, we’re quite positive about it. The politicians aren’t going to let this go. We’re trying to cling on to any little glimmer of hope.

“We’ve also just had a meeting with a solicitor to discuss various legal possibilities. We’re just doing anything we can for our little girl. We’ll just have to wait and see if there’s any development in the coming weeks.”

Emma, an English teacher and husband Chris, a 38 year-old site technician, are also considering the possibility a £23,000 generic copy of Orkambi from Argentina via a buyers club set up with fellow parents.

Emma added: “It’s still another option. We’re looking into fundraising for that.”