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MARION HAILS CYSTIC FIBROSIS DRUG BREAKTHROUGH

SCOTTISH GOVERNMENT SECURES DEAL FOR ACCESS TO LIFECHANGING TREATMENT

Motherwell and Wishaw MP, Marion Fellows, who’s three-year-old granddaughter has Cystic Fibrosis, has welcomed the new deal struck by the Scottish Government to allow access to lifechanging drugs Orkambi and Symkevi.

The deal was confirmed last week by the independent Scottish Medical Consortium which will see the drug be made available to 400 of the 900 people in Scotland with Cystic Fibrosis.

Two deals were previously rejected, but the Scottish Government persisted and secured a five-year deal and a “confidential discount” with producer, Vertex, on its third attempt.

Marion’s granddaughter, Saoirse, has Cystic Fibrosis and could benefit from the new drugs.

Commenting, Mrs Fellows said:

“As the Granny of three-year-old Saoirse, I know personally the impact CF can have on families. I’m so glad that so many families across Scotland will benefit from these new drugs. Hundreds will be able to lead longer and fuller lives.

“Saoirse and other people like her and their families have inspired and motivated me to join the fight for access to these lifechanging drugs.

“The Scottish Government never let up in discussions and is leading the way in CF treatment. But CF knows no borders. The UK Government must follow the Scottish Government’s lead and make it available to sufferers in England also.

“This is such a big moment for hundreds of families. They have been relentless and inspiring in their efforts to see these drugs become available in Scotland.”

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DAY OF ACTION FOR CYSTIC FIBROSIS DRUGS

For the people with Cystic Fibrosis who could benefit from life-changing drugs – Orkambi and Symkevi – Vertex must revise their offer to the Scottish Medical Consortium.

Cystic Fibrosis knows no borders, but there is a real opportunity for progress on treatment in Scotland. Vertex must make a more reasonable offer so that it can be accepted by the SMC.

I want to provide my support to those rallying outside Vertex’s HQ in London. The individuals and families affected have been fantastic advocates for the campaign and demonstrating just how much access would mean to them.

We are so close to a deal and I am hopeful that one is finally agreed.

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DISAPPOINTMENT OVER CYSTIC FIBROSIS DRUG DECISION

As most of you will know I have been championing access to Orkambi and Symkevi particularly since receiving the devastating news my granddaughter, Saoirse, has Cystic Fibrosis.

Yesterday’s decision made by the Scottish Medicines Consortium to deny access came as a disappointing blow to sufferers and their families. On The Nine last night I discussed my disappointment.

The good news is the Scottish Government remain in discussions with Vertex and I remain hopeful this will result in a positive outcome.

I will be writing to the Health Secretary Jeane Freeman and will continue in Westminster to work with others cross-party to open up access to these life changing drugs in the belief that this situation will be resolved. I’m sure at the end of the day the Scottish government and Vertex can come to some good agreement that will change this disappointing decision made by the Scottish Medicines Consortium.

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CALLS FOR ENGLAND TO MATCH SCOTLAND’S PROGRESS ON CYSTIC FIBROSIS SUPPORT

I’ve added my name to a cross-party letter to call for UK Health Secretary, Matt Hancock MP, and Vertex CEO, Jeff Leiden, to meet to agree a deal to secure life changing drugs for people with Cystic Fibrosis.

In August, the Scottish Medicines Consortium will make recommendations to NHS Scotland on the routine use of Orkambi and Symkevi. Progress is being made in Scotland and it must be matched in England.

Cystic Fibrosis knows no borders. For children like my granddaughter Saoirse, and the many people affected across Scotland and the rest of the UK, access must be widened.

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WEAR IT YELLOW FOR CYSTIC FIBROSIS

Today is Wear it Yellow Day to raise awareness of Cystic Fibrosis.

I spoke about my experience as a granny of my beautiful granddaughter, Saoirse, who has Cystic Fibrosis.

I hope that the Scottish Medical Consortium will increase access to drugs like Orkambi to help people with the condition. And I hope that people across the UK also get access. There is no border for Cystic Fibrosis.

Full story here.

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CYSTIC FIBROSIS AND ORKAMBI

As the grandmother of someone with Cystic Fibrosis – my beautiful granddaughter Saoirse – I know how it can affect people. In Scotland, interim access has been granted to life changing drugs. I hope that the rest of the UK will follow suit.