The parents of a youngster living with Cystic Fibrosis say sufferers are now in a race against time to have a much-needed wonder drug licensed on the NHS.
Emma and Chris Corr travelled from their Jarrow home to London to sit in on a debate at the House of Commons over the future use of the highly effective but ultra-expensive Orkambi.
Their daughter Harriett was diagnosed with Cystic Fibrosis at just five days old.
Every day the youngster from Wansbeck Road, Jarrow, depends on a variety of drugs to help keep her alive and regular physiotherapy.
Orkambi, which has passed tests and is on the market, is currently unavailable on the NHS.
However, through price-cutting with other governments, drug company Vertex has been able to make Orkambi widely available in some countries.
It is thought to cost the NHS £104,000 per person for treatment a year, making it currently prohibitive.
Vertex is understood to have approached the UK government with a proposal around pricing with campaigners calling for the support of MPs to push for the deadlock over the issue between the drug company, NICE and the NHS.
The drug is claimed to attacks the root cause of CF. At the moment, medication can only treat the symptoms.
Around 60 MPs attended the debate on Monday, with 25 speaking on behalf of constituents - including Jarrow and Hebburn MP Stephen Hepburn, who helped Emma and Chris to sit in on the debate.
The 37-year-old said: “It was really, really positive. There wasn’t any major decisions made at the end of it, which we knew about. It was all about getting MPs on board.
“We were told on average there are about five to 12 MPs who attend these debates. We had 60, which was a massive achievement for the CF community.
“MPs were standing up and talking about their constituents and how the illness has affected their lives, and it was a cross-party agreement.
“It really was quite emotional. The minister at the end said they were looking at this as a matter of urgency to end the deadlock between NICE, the NHS and the drug company.
“CF is such a complex issue, but every MP that spoke knew exactly what they were talking about - they’d really done their homework.
“We understand this isn’t going to happen overnight, but it is a real positive step forward.
“It’s not the end and we have to still keep fighting and need people to keep supporting us to continue to put on the pressure.
“Every day this decision is being delayed, is another day a person with CF is suffering.
“We don’t have time to wait on this, and every day waiting is a day more of irreversible damage to their lungs.”