Ronnie Campbell has met the schoolboy he mentioned in Parliament as the Orkambi campaign continues across the country.
Trials have found that the combination drug can halt or even reverse lung damage in children under 12 years.
Seven-year-old Charlie Foster suffers from cystic fibrosis (CF), which affects the lungs and digestive system.
He spoke with the Blyth Valley MP when they met up at Mr Campbell’s constituency office in Blyth about how CF affects him and his family.
His mum Michelle Foster, who has been organising events and activities over the last few years in aid of the Cystic Fibrosis Trust, explained that bugs grow on his lungs and this results in the Newsham Primary School pupil having to go to hospital for IV medication.
Mr Campbell also did the Strawfie Challenge, which involves holding your nose and breathing through a paper straw for 60 seconds. The aim of it is to show people first-hand how CF sufferers struggle to breathe.
He said: “It wasn’t that easy to breathe towards the end of the challenge, so it was useful to give it a go and I recommend others do the same.
“It was lovely to meet Charlie. I told him he is a hero.
“I hope things can be sorted out to enable the drug to be available on the NHS.
“These kids have to be rushed to hospital in emergency situations and so when you take the costs involved with that into consideration, I think Orkambi would save the health service money in the long run.”
Orkambi has been approved for use in other countries, but is not yet available on the NHS. The reasons given by the National Institute for Health and Care Excellence (NICE) were cost-effectiveness and a lack of long-term data.
Another debate about it is set to take place in Parliament in June after more than 100,000 people signed an online petition, triggering an automatic right to be heard.
Mr Campbell brought up the issue last month during Prime Minister’s Questions. His question included the following: “Will the Prime Minister try to get that drug across the line, and give kids like Charlie Foster a better quality of life?”
Prime Minister Theresa May said talks are continuing between US-based pharmaceutical firm Vertex, NHS England and NICE to discuss how best to reach a deal so that people with CF and their families could benefit as soon as possible.
Michelle said that Charlie has written another letter to Mrs May, he did so last year, and the new letters – along with 65 yellow roses – have now been handed over to a Government official at 10 Downing Street by campaigners and Dudley North MP Ian Austin.
She added: “The reason for the roses is because there’s an old saying that if you can’t pronounce cystic fibrosis properly then say 65 roses as it sounds the same, also yellow is the CF colour.
“Charlie’s CF fight is my fight and I’ll fight for him until my last breath as he deserves to live a life unlimited.”