A LONG-awaited parliamentary debate about the availability of a vital cystic fibrosis drug on the NHS will add pressure to on-going negotiations.

That’s the view of Dave Louden, whose four year old daughter suffers from the life-limiting condition.

Mr Louden was thrilled that after more than three years of campaigning a date has finally been set for the issue to be debated in Parliament on June 10.

But he feels in the dark about the progression of negotiations between drugs manufacturer Vertex pharmaceuticals and the NHS.

Vertex has a portfolio of precision medicines which could drastically improve the lives of thousands of cystic fibrosis suffers across the UK but they are currently unavailable as the company and UK health chiefs are yet to reach an agreement on costs.

“There has been no update and everything has gone quiet,” said Mr Louden.

“It does make you wonder how much progress is being made. I understand the need for a degree of confidentiality but at the same time I think it’s pretty brutal on the CF community.

“It’s your children’s lives or loved ones’ lives that are depending on this drug and they can’t even give an update.

“You don’t even know if these meetings are happening and how much progress is being made if any.

“It’s keeping you massively in the dark when it means so much to so many people. The debate is so important as it puts pressure on both sides.”

Mr Louden hopes the debate will also highlight issues with the appraisal system used by NICE when it comes to assessing the viability of drugs.

“These medicines didn’t exist when NICE was made,” Mr Louden continued.

“They are not appreciating them for what they are - not just for people with CF but there are other diseases that precision medicines are available for but again, they can’t get their medicines.

“There is a massive problem and hopefully this debate will get that looked into and hopefully they can resolve it.”

Mr Louden is writing to Cumbria’s MPs urging them to attend the debate.

He’s already been in touch with Carlisle’s MP John Stevenson and has gained support from the politician.

Mr Stevenson says he will try to attend the debate in parliament and hopes to meet Mr Louden ahead of it to hear about Ayda’s situation first hand and how the drug could benefit her.

“I am aware of the issue and the parliamentary debate, which will be an opportunity for ministers to hear first hand about the potential benefits to individuals like Mr Louden’s daughter Ayda of the drug,” Mr Stevenson added.

“I am also conscious of the decision that NICE will have to make but bringing the matter to the Governments attention can only help bring the possibility of the drug being licensed much closer.”