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  1. ITV Report

Six-year-old's plea for 'life-changing' cystic fibrosis drug to be made available on the NHS

Six-year-old Elliott Raynor from Leicestershire is a cystic fibrosis sufferer. Credit: ITV Central

Thousands of people with cystic fibrosis who have been denied the 'life-changing' drug Orkambi have seen their petition gain more than 100,000 signatures ahead of today's debate in the House of Commons.

People with cystic fibrosis have a life expectancy of between 30 to 40 years and Orkambi is said to slow the decline of lung function, which is the most common cause of death for people with the condition.

Six-year-old Elliott Raynor from Leicestershire is a cystic fibrosis sufferer.

Elliott and his mum will join campaigners from across the country today at a Westminster protest for the life-changing Orkambi to be made available on the NHS.

The drug is licensed for use in the UK but isn't provided by the NHS because of the cost.

The NHS can only offer treatments which are both effective for patients and offer good value for taxpayers, so it's crucial that drugs companies work with the NHS to get a positive outcome. The NHS has asked this particular drug company to review its proposed pricing, and unless this happens further progress at this time is frankly unlikely.

– NHS England Spokesperson