Home Sittingbourne News Article
Sittingbourne mum's delight as cystic fibrosis drug Orkambi made available on the NHS
16:36, 24 October 2019
updated: 17:23, 24 October 2019
A mum with cystic fibrosis who has been among those leading a campaign for a life-changing drug to be made available on the NHS says she is "elated" a deal has been reached.
Carlie Pleasant, of Sittingbourne, is among 5,000 patients who could now have access to the medicine after an agreement between the health service and the drug company.
Carlie Pleasant reacts to Orkambi becoming available on the NHS
Known as Orkambi, it is said to slow decline in lung function - the leading cause of death for those with the illness.
Mrs Pleasant said: "I found out this morning from Matt Hancock when he telephoned me to break the news, which was one of the most shocking phone calls I've received in my life.
"At the same time it was a moment of absolute elation for me.
"I can't express how much it means to me because it's a lifeline.
"It's going to change the way my body works. It's definitely going to give me years with my husband and my son which is something that I had come to accept that wasn't open to me.
"A huge thank you to everybody involved and I'd like to pass my thoughts onto the families who this has come too late for."
Mrs Pleasant met Health Secretary Matt Hancock earlier this year who says it will improve many lives.
The change in policy comes after a hard fought campaign urging the NHS and Vertex Pharmaceuticals to reach an agreement.
Mrs Pleasant was diagnosed with CF aged nine and told she might not live past 15.
"It was a moment of absolute elation for me..." - Carlie Pleasant
She is now 29 and has a son, Jude, but has to take numerous tablets to help her digest food and injects herself with antibiotics five times a day and takes about 75 tablets.
Orkambi is widely available in the United States but had been ruled out in the UK due to its cost.
A course of Orkambi would be about £104,000 a year.
Mrs Pleasant, who has been campaigning for four years, has always acknowledged it would be a lot of money but says it costs the NHS more now in hospital stays and ongoing treatment for CF.
