Long struggle for survival
November 26, 2012: The Daily Record tells of the struggle to get Maisie Black, seven, access to the lifechanging drug Kalydeco. December 31, 2012: Kalydeco becomes available in NHS England. January 14, 2013: The Scottish Medicines Consortium rejects Kalydeco for NHS Scotland, but SNP Health Secretary Alex Neil announces a £21million “orphan drugs” fund to allow Maisie and others access to expensive treatments for rare illnesses. February 9, 2013: Maisie is already showing signs of improvement after starting on Kalydeco. May 9, 2016: The SMC rejects Kalydeco for children over the age of two, and also rejects a new precision medicine, Orkambi. May 27, 2018: CF consultant Gordon MacGregor reveals that a young man is dying while the drug which can save him lies untouched along the corridor because he is not allowed to prescribe it – on cost grounds. Dr MacGregor says he is losing one young adult every month to CF because of the drug ban. May 30, 2018: Stewart Kelly, 30, dies after bureaucracy delays him being prescribed Symkevi on compassionate grounds until it is too late to save his life. June 7, 2018: Stewart’s family urge friends at his funeral to share the Daily Record’s story about him to help the campaign for the drugs to be made available. June 12, 2018: Kelli Gallacher, left, begs Nicola Sturgeon: “Please don’t let us die.” August 15, 2018: The Record marks the passing of 1000 days since Orkambi was given regulatory approval in Europe. After trials in Glasgow, Dr Gordon MacGregor tells of the “Holy Grail” – Drug 659 – which he says will be “the end of the disease as we know it”. It is later renamed Kaftrio. November 1, 2018: Orkambi is rejected as an “orphan drug” because it would be suitable for 900 Scots – too many for the strict criteria. December 19, 2018: The Scottish Government announces Orkambi and Symkevi will be available to all who need them on an interim basis before a new application to the SMC is considered, after striking a deal with Vertex. August 11, 2019: SMC rejects Symkevi and Orkambi for NHS use. September 12, 2019: Scottish Government hammers out a deal with Vertex for the drugs, making them available for anyone who needs them for five years to allow evidence on their efficacy to be gathered. October 2019: Following the success of the Daily Record campaign in Scotland, NHS England agrees a similar deal with Vertex. January 2020: The Record tells how Ayden Cochrane, 13, is begging Vertex to give him Kaftrio ahead of its regulatory licence to save his life. He dies on January 20, prompting calls for all UK governments to ensure that the drug is made available on the NHS as soon as possible. June 2020: Kaftrio is approved by NHS England. It will be made available as soon as the European licence is granted, within weeks. August 4, 2020: Record reports Hailey Mann’s plea for access to Kaftrio, as her lung function falls to 14 per cent. August 4, 2020: Scottish Government announces deal with Vertex to provide the drug on the NHS.