Ahead of Cystic Fibrosis Week in the UK, 37-year-old Marc Cotterill, who lives with the disease, has given a video presentation to the European Cystic Fibrosis Conference on the theme of ‘What do our patients need from us now?’
Marc health was stabilised – and he believes that his life was saved – when he gained ‘compassionate access’ to game-changing cystic fibrosis drug Kaftrio in March 2020. In June of that year the NHS announced that patients in England would be some of the first people in Europe to benefit from this new “truly life-transforming” treatment for cystic fibrosis in a landmark deal for the CFTR modulator therapy. Click here to learn more.
In his video presentation to the European CF Conference, Marc outlines the amazing treatment changes that have taken place during his life. But he also advocates for further research to take place for the 10% of patients who, because of their genetic mutation, are not eligible to take Kaftrio.
The cystic fibrosis (CF) community is adapting to huge physical and mental changes on Kaftrio and Marc addresses some of these issues. He has already had feedback from CF medical teams, thanking him for his insights and saying that the video will be shared among the medical community.
Marc also raises the subject of global access to Kaftrio (known as Trikafta in many countries). Only thirteen countries currently have access to this truly life-changing drug that works at the root cause of cystic fibrosis rather than just treating the symptoms.
An ongoing campaign using the hashtag #CFCantWait has seen people and families who live with CF from around the world posting photos with cystic fibrosis slogans written on their face, hands and bodies. The idea of the campaign is to make the ‘invisible’ illness of CF very visible to the rest of the world and raise the issue that cystic fibrosis is a progressive illness – patients do not have time to wait for years for access to the best available medicines. Marc included some of these photos in his video presentation.
As part of the campaign, Marc responded to a photo of a four-year-old, Janco Koorts, who is from South Africa where there is no road map for Trikafta (Kaftrio), by posting his own photo recreating Janco’s message.
Janco’s photo which shows him with a nebuliser mask on his face and the words #CFCantWait written on his chest, seems to capture the vulnerability of a child with a chronic, life-limiting disease and the sense of hopelessness that thousands living with cystic fibrosis around the world feel, knowing that the cost of Trikafta means they will probably never have access.
Marc knows what lies ahead for Janco and others like him if he doesn’t get access to Trikafta. Having lived a lifelong battle with infections, a constant cough, and many health complications, Marc hopes for better for young children being diagnosed with the illness today.
“Children like Janco don’t have to endure the same journey as my generation went through,” said Marc.
“The drugs are here now that can prevent lung damage and stabilise health. But because the drug company Vertex Pharmaceuticals charges exorbitant prices, many countries cannot afford to provide them to their CF community.”
Marc concluded his video talk by saying of the worldwide CF community
“Perhaps all of our prayers would be answered if we stood together as a community, as a family & a force to be reckoned with and insisted on a global access plan that will truly transform and protect the lives of everyone within this incredible community.”
The full video can be viewed here: