NEWS COMMENT: Time to listen to Portsmouth mums' demands on cystic fibrosis drug Orkambi

Health chiefs making rulings on which drug is allowed on the NHS, or is not allowed in the case highlighted on our front page, no doubt know those decisions could have long-lasting repercussions.

But for mums Gemma Weir and Michelle Frank, not having Orkambi treatment for their two young daughters with cystic fibrosis is more than they can put up with.

They have said: ‘Enough is enough.’

And those strong words from Michelle have found favour with thousands in the wider community, with more than 110,000 backing a petition for the provision of the treatment to be debated by MPs.

The sticking point is, as ever, partly down to money.

It costs £104,000 per patient per year. There’s no shying away from it – that’s a lot for the cash-strapped NHS.

But it’s also down to the science. According to the Cystic Fibrosis Trust (CFT), the National Institute for Health and Care Excellence (Nice) did not have key data available when it assessed and did not accept the treatment.

The CFT says the drug can slow decline in lung function – the main killer of people with cystic fibrosis – by 42 per cent.

This is, as Michelle and Gemma sadly know, life and death with cystic fibrosis.

Clinical bosses at Nice are due to review their decision next year. MPs will debate the NHS provision soon, possibly as soon as next month.

But today we back Gemma and Michelle, two Paulsgrove mums who just want the best for their kids, and say it’s time to review the decision now.

They’ve said it, and now we will too: Enough is enough.