About 10,500 people in the UK have Cystic Fibrosis. It is a genetic lung condition that affects roughly 1 in every 2,500 babies. For those affected, average life expectancy is a very low 37 years, although this is much greater than what it used to be. I have always been aware of it because tragically, my cousin was born with cystic fibrosis and died aged just 18. This was thirty years ago when treatments were not as good as today.
Advances in treatment are happening all the time which everybody welcomes, but new breakthroughs are hugely expensive although they do become more affordable over time. Last week saw some truly wonderful news as the NHS agreed a deal with the American manufacturer of the new drug Orkambi that can significantly extend the lifespan of about half of those with cystic fibrosis. This means that up to 5,000 children and young people in England will soon get access to this new treatment.
The families of children and young adults with the disease, which gradually clogs the lungs, have fought a long and admirable campaign for the first drugs that target the cause of the disease rather than just improving symptoms. The drugs were approved four years ago but the manufacturer set a huge price tag of more than £100,000 per patient per year, which the NHS said was unaffordable.
The treatment will be available within a month and has been incredibly well-received by the families of those affected. We’ve seen some very emotional video clips on the news and on social media of families receiving the news. It was hard not to be moved when viewing these.
The tireless campaigners deserve huge credit, rightly applying pressure to government and the manufacturers to get this sorted out. The government have listened and worked hard to get this deal that will improve thousands of lives. There is always plenty of bad news out there, but I cannot understate how wonderful this news is to those affected families. Our NHS is going to deliver for them and we can all be proud of that.
Councillor Duncan Crow, Leader of Crawley Borough Council Conservative Group
30th October 2019