Video report by ITV News Meridian's Mary Stanley
It took years of campaigning, but now a drug for Cystic Fibrosis is changing the lives of those who have the illness.
Orkambi was hailed as a breakthrough treatment for the condition which affects the lungs and digestive system, but it took protests and petitions before it became available on the NHS.
Among those to benefit is a 10-year-old boy from Sussex. Luis Walker's mother says in the few months since he began taking the drug his condition has improved dramatically.
Christina says: "Everything is different. Luis' chest is so much clearer, he can breathe and run around. He can eat, he can enjoy food. It's like we've gone living every day battling his Cystic Fibrosis to just getting on with everyday life, it's almost in the background."
16-year-old Hollie Cranmer from Berkshire has spent weeks in hospital with cystic fibrosis. A similar drug, Kaftrio, became available during lockdown for people over 12 years old. Like Orkambi, it treats the underlying cause of cystic fibrosis and not just the symptoms. For the first time in her life Hollie says she feels able to plan her future.
Hollie says: "I didn't think I was going to be able to get to university, and I had a long career that I wanted to do, but realistically I didn't think I was going to be able to do it. But now I can, and I probably do want to have kids, but that was never an option before."