New deal reached for life-changing Cystic Fibrosis drug

A new deal has been reached between NHS England and pharmaceutical company Vertex for a new life-changing Cystic Fibrosis drug.

After years of campaigning by those living with Cystic Fibrosis and their families, the new drug, called Orkambi, will now be available to patients within 30 days of being diagnosed.

Cystic Fibrosis is an inherited condition that causes mucus to build up in the lungs and digestive system, causing infections and breathing difficulties.  The condition usually gets worse over time and can often be fatal.

The new drug, however, will improve lung function and an estimated 10,000 patients in the UK will be able to benefit from the drug, according to campaigners.

Ali Dillon, from Sevenoaks, has been campaigning for the new drug to become available for her son who suffers from Cystic Fibrosis. She said she noticed her phone kept “pinging” before she realised what had happened:

“I spent most of yesterday crying and received phone calls from so many people crying down the phone to me. It has been a long time coming and there had been a lot of emotions coming and, yesterday, they all come flooding out.”

Ali’s son, Oli (21), was diagnosed at three months old. Ali explained that it came as quite a shock:

“He was in and out of hospital about three and four times between six months and seven years old. He was about ten years of no admissions and then, when he was 16, he caught a particularly nasty bug which took two years to clear. That kind of brought it all home to us.

“Then he caught the flu and within the space of a week he lost 49% of his lung function, which fortunately he did get back, but it was a very scary time for us.”

Oli figured out that the new deal had been reached when he heard his mum screaming. He said he knew instantly that it was good news.

“It still hasn’t quite sunk in, but it’s given me hope for the future and what I can do going forward… I was completely shocked, I didn’t think it was going to happen this year in the end, but they have just given me back my life.”

Oli Dillon

Ali said that, although a deal has been reached for Orkambi, her campaigning won’t end:

“There is still much more to do. Northern Ireland, Wales and the Channel Islands still don’t have access. We need them to get access too. Going forward there is still 10% of people who, for them, these drugs don’t work for.

“We will keep going until everybody with CF has the medicine that they need.”