Hope for Chichester teen after ‘life-prolonging’ cystic fibrosis drug made available on the NHS
News that a life-prolonging drug will be made available on the NHS has given a Chichester mother hope, for the first time in years, that her son might be able to live his life to the full.
Charlotte Munn’s 15-year-old son Jack Shorter, who was diagnosed with cystic fibrosis when he was two and a half years old, has had to have numerous surgeries over the years and spend long stretches in hospital every six to eight weeks.
But Charlotte hopes he might be able to live a more normal life once he starts taking Symkevi, one of the drugs that will now be available after the Government announced that the NHS had agreed a deal with the drugs manufacturer Vertex.
Charlotte said the news, which comes after years of hard work by campaigners, was ‘amazing’.
She said: “I was driving at the time and I had a message come up on my car phone system.
“I wasn’t expecting it, it came from nowhere for me, and I just cried and cried.
“I just couldn’t believe that finally after all these years there might be something that could give him a bit of hope.”
She said the previous year had been particularly difficult and ‘really bad news, one thing after another’.
Last year, Jack spent a total of 28 weeks in hospital and was told the antibiotics he was taking were starting to damage his liver.
Charlotte, who works with people with dementia in the community, said: “We were starting to panic, thinking there was nothing left to try for him.
“We had started to run out of all other options.”
Jack, who attends Bourne Community College, was missing so much school that it was ‘really taking a toll’ on his social life, Charlotte said.
She hopes Jack will be able to start the new treatment by the end of the year.
“If he tolerates it well and doesn’t have any adverse side effects, I’m hoping it will just stretch out that time between hospital stays, which will allow him to start living a bit more of a normal life.”
She hopes Jack, who loves cooking and dreams of being a chef, will be able to go on to study at college without having to miss lots of lessons.
A huge fan of WWWE wrestling, she also hopes to take him to watch a match.
Charlotte said it would have a impact on the whole family – including Jack’s three siblings who are aged 13, seven and four.
“Before I felt like I couldn’t make plans, we were hanging in the balance,” she said. “Now I can plan a future.”
Charlotte also praised the support she has had from MP Gillian Keegan over the years.
She said: “I was always pretty sceptical of MPs and how much they would help.
“But Gillian has been brilliant. Every single time we’ve reached out for help, she’s got straight back to us and always done all she could to help.
“It’s quite comforting to know that your local MP actually cares.”
Mrs Keegan said: “This has been a long-fought campaign to make this drug available to those who need it.
“The NHS has, after years of effort, managed to negotiate with Vertex to ensure patients get the medication they need at a fair price for the taxpayer.
“The best bit of my job is being able to make my constituents lives better in whatever way I can, and I know that this announcement will be transformative to the lives of so many families up and down the country.”