Family stuck in middle of £500million wonder drug stand-off tell of hope for daughter’s future

A South Tyneside couple who are trapped in the middle of a £500million battle around a cystic fibrosis wonder drug, have welcomed fresh moves to break the deadlock over its use on the NHS.
By Gareth Crickmer
Published 12th Feb 2019, 05:00 BST
Updated 12th Feb 2019, 07:35 BST
Harriet Corr, 4, who suffers from cystic fibrosis with her mother Emma, sister Nancy, 6, and dad Chris.Harriet Corr, 4, who suffers from cystic fibrosis with her mother Emma, sister Nancy, 6, and dad Chris.
Harriet Corr, 4, who suffers from cystic fibrosis with her mother Emma, sister Nancy, 6, and dad Chris.

Emma and Chris Corr, of Wansbeck Road, Jarrow, have added their support to demands for the Government to invoke a special clause to free Orkambi from strict patent laws.

It has the power to do so under Crown Use – a little-known system that allows intervention for the benefit of the nation.

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The drug is licensed for use in England and Wales, but its prohibitive cost – about £104,000 a year per patient – means it is not available on the NHS.

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The health service has offered to pay manufacturer Vertex Pharmaceuticals £500million over the next five years, a sum rejected by the company.

Invoking Crown Use could lead other drug firms being asked to make a cheaper version.

The push to do so was tabled last week in a Parliamentary debate by Bill Wiggin, Conservative MP for Herefordshire.

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Although rejected by the Government, Mr and Mrs Corr, whose daughter Harriet, four, has the genetic disorder, say they back the move if further pricing negotiations fail.

Mrs Corr, 38, an English teacher, said: “Crown Use is a system that is not used often but when it has been, it has had positive effect and been successful.

“I’m hopeful this could be the turning point around this drug’s use, but we have been here before in terms of getting a breakthrough.

Harriet was just five days old when diagnosed with the life-shortening condition which causes lung damage and affects about 10,400 people in the UK.

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She requires a daily cocktail of drugs and vitamins, as well as intense physiotherapy, and has just spent a week in hospital as a safeguard after developing an infection.

Orkambi is the first of several treatments that have been developed, with newer ones expected to be even more effective.

The Department of Health and Social Care said: “Despite being offered in the region of £500million over five years – the largest ever commitment of its kind in the 70-year history of the NHS – Vertex has refused to accept, putting Orkambi out of reach of patients.

“We’re aware there may be other avenues open to resolve this issue, but our approach remains urging Vertex to accept NHS England’s generous offer.”