Cystic fibrosis patients WILL get life-saving drugs on the NHS
Treatment victory after Record-backed campaign
A DEAL has been struck to offer life-saving cystic fibrosis drugs on the NHS after a campaign backed by the Record and patients including Kelli Gallacher.
CYSTIC fibrosis patients have been given the “fantastic” news that life-saving drugs are to be made available on the NHS.
It comes after the Scottish Government hammered out a deal with a pharmaceutical company over the price of Orkambi and Symkevi.
It means about 400 Scottish patients who need the drugs will get them for at least five years.
Kelli Gallacher, whose life has been transformed by Symkevi, was overjoyed that other patients will now benefit.
She said: “I am so happy everyone is getting the same chance as me for a better and healthier future.”
Last month, the Scottish Medicines Consortium (SMC) threw out an application to make Orkambi and Symkevi available on the NHS.
The rejection was made on the grounds of cost and the lack of data proving the efficacy of the drugs.
But behind the scenes, the Government was working on a deal with pharmaceutical firm Vertex.
A discounted price for the drugs has been agreed for five years and data will be gathered during that time which should provide evidence of the medicines’ worth.
It’s hoped that will lead to the SMC approving the drugs in the future.
Since last summer, the Daily Record has been campaigning alongside a cross-party group of MSPs and patients for the drugs to be made available. Kelli, of Dunbartonshire, took her fight to Holyrood, where she pleaded with Nicola Sturgeon to be allowed the medication.
In December, Health Secretary Jeane Freeman said patients would be able to access the drugs via an individual request system while awaiting the decision of the SMC.
And in April, Kelli was told she would get Symkevi on an interim basis.
But when the SMC decision went against the campaigners last month, there were no guarantees patients would be accepted under the individual request scheme.
The deal that will be announced by the Government today will end that worry.
The new drugs can halt the deadly deterioration of lung function in CF patients.
The average life expectancy of CF patients is just 31. But with Orkambi and Symkevi, patients can look forward to a future beyond that.
The deal secured by the Scottish Government is the first such agreement involving Orkambi and Symkevi in the UK.
Kelli’s mum Maggie said: “Thanks go to the Scottish Government, especially Jeane Freeman, her officials and Vertex for putting politics aside to help those affected.
“These drugs are life-changing. I have seen my daughter’s health improve and she now has a future.
“I hope the rest of the UK will follow Scotland’s lead and everyone will soon be able to benefit from these drugs.
“I also want to take time to remember those who have lost their battle with CF and didn’t access these drugs in time.”
Labour’s Jackie Baillie, who helped the campaign, said: “Kelli has been a star in spearheading this campaign but I would also like to thank Jeane Freeman for her work to make this happen.
“You don’t often get the chance in politics to make a difference to someone’s life. This is one of those rare occasions.”
Freeman said: “This is fantastic news for those with cystic fibrosis and their families.
“This new pricing agreement with Vertex will allow more people with cystic fibrosis to benefit from Orkambi and Symkevi and live fuller lives for longer.”
Ludovic Fenaux, of Vertex, added: “We would like to thank the Scottish authorities for their partnership and the collaborative and flexible way we have worked together to find this access solution.”