Why can't we have new drug to help Jarrow girl Harriet? - Stephen Hepburn MP

Within a week of the Jarrow girl’s birth, her wonderful parents, Emma and Chris, were told their daughter needed an operation to unblock her bowel, then cystic fibrosis was diagnosed.

The genetic condition affects more than 10,400 people in Britain and it is something you are born with and don’t develop in adult life.

About one in 25 of us carries the faulty gene which affects the lungs, Harriet’s digestive system and other organs.

Thankfully most of us never develop cystic fibrosis. Harriet wasn’t so lucky.

We’re in the middle of Cystic Fibrosis Week to raise awareness about this condition so I’m wearing something yellow on “Wear Yellow Day” this Friday to show solidarity with Harriet and everyone else with cystic fibrosis, and will be posting a #yelfie yellow selfie on social media.

I’ve repeatedly raised her case in Parliament, including directly with the Prime Minister, and Harriet’s mam and dad came to Westminster as my guests for the latest debate.

A new drug, orkambi, could be a lifesaver yet a protracted row over cost between US pharmaceutical giant Vertex Pharmaceuticals, the National Institute for Health and Care Excellence (NICE) and the NHS means it isn’t available.

No cure for cystic fibrosis exists but medical advances are fighting back and appropriate treatment enables sufferers to live longer, healthier lives.

Emma and Chris spend hours every day ensuring Harriet receives the exercise and regular physiotherapy required to combat this debilitating, life-changing disease.

Orkambi could be the gamechanger and it infuriates me that patients could be receiving it in Scotland next year but not England, Wales or Northern Ireland - in this disunited Kingdom.

So why can’t we have it in Jarrow and the whole of the UK?

The NHS in England and NICE do not deem the drug cost-effective and have spent more than two years negotiating a price, without success.

That’s why I will continue to put the pressure on the government to resolve this long-running issue and ensure that the NHS and the firm do a deal, because we can’t put a price on Harriet’s life and the lives of other sufferers.

It is scandalous that in the three-and-a-half years since orkambi came onto the market, more than 240 young sufferers have tragically died.

We’ve had five Parliamentary debates and Tory Health Ministers have failed to step in and cut a deal, gambling with lives and treating frustrated families with contempt.

The Conservatives needlessly imposing the cruellest financial straitjacket in the history of the NHS is undoubtedly part of the problem. I want this sorted, and sorted now, to help Harriet and ease the stress on Emma and Chris.