According to a story from dailypost.co.uk, Richard Mason, the millionaire founder of moneysupermarket.com, and and baker Alison Faire’s daughters Annabelle (aged 4 years) and Imogen (aged 7 years) don’t have a whole lot in common. However, they so share one thing: a diagnosis of the rare lung disorder cystic fibrosis. They can also celebrate the recent coverage of the drugs symkevi and orkambi on the Welsh NHS.
About Cystic Fibrosis
Cystic fibrosis is a type of genetic disorder which can have impacts throughout the body, but it is most characterized by the build up of abnormally thick, sticky mucus in the lungs. This mucus becomes a fertile breeding ground and habitat for potentially infectious bacteria. Many patients must take antibiotics for much of their lives. This disorder is caused by mutations of the CFTR gene. Symptoms of cystic fibrosis include progressive decline in lung function, lung and sinus infections, coughing up mucus, fatty stool, poor growth, infertility in males, clubbed digits, and digestive problems. Treatment includes antibiotics and medications or procedures intended to maintain lung function. Lung transplant is an option when lung function declines severely. Life expectancy ranges into the 40s and 50s with good care. To learn more about cystic fibrosis, click here.
A New Cause for Hope
Richard has already seen benefit from using the treatments. Since his diagnosis, his lung function had dropped to 69 percent, but after starting the treatment, his lung function has already gone back up to 78 percent.
Meanwhile, the diagnosis of both of Alison’s young daughters with the disorder was a devastating blow and she had long since given up that the NHS would be able to negotiate a deal with the manufacturer of the drugs. Needless to say, she was amazed when she heard that they were getting covered. Alison now lives with the hope that Annabelle and Imogen will now be able to life longer and more satisfying lives. In addition, a new drug that was recently approved in the US promises to be even more effective. Hopefully, it will be only a matter of time before it gets coverage on the Welsh NHS. Alison projects that the new drug will be covered in the next few years.
