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Members' Business: Orkambi

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Members' Business: Orkambi

June 12, 2018 17:00

 

That the Parliament understands that cystic fibrosis affects over 900 people in Scotland, including in the West Scotland parliamentary region, and that, in 2016, half of all people who died from the genetic condition were aged under 31; believes that Orkambi, which is manufactured by Vertex Pharmaceuticals and treats the homozygous delf508 mutation, which around 50% of people with in the UK with the condition have, is the second drug to be licensed for use in dealing with cystic fibrosis; notes that the main function of this treatment is to keep a healthy balance of salt and water in the organs, particularly the lungs; believes that, according to 2016 UK Cystic Fibrosis Registry Report, there are 336 people in Scotland who could benefit from having access to this, but that it is not currently available via the NHS, despite, it understands, the Scottish Medicines Consortium noting that it was a beneficial treatment and NICE recognising it as an important treatment; believes that clinical data has shown that the drug is able to slow decline in lung function, which is the main cause of death from the condition, by 42%, and notes the work of all the people and organisations, such as the Cystic Fibrosis Trust, which are campaigning to put pressure on the Scottish Government, the NHS and pharmaceutical companies to ensure that such drugs reach those who need them without delay.