Gazette column - 20/6/19

Little Harriet Corr at just four years old has already gone through far more than most of us could ever comprehend.

 

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 were 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 to raise awareness.

 

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

 

Because a new drug, Orkambi, could be a lifesaver for this lovely Jarrow girl 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 receive it in Scotland next year but not England, Wales or Northern Ireland in this Disunited Kingdom.

 

It is available in the Republic of Ireland, Austria, Denmark, France, Germany, Luxembourg, Holland, Italy, Greece and the USA.

 

Orkambi attacks the causes of cystic fibrosis instead of treating only the symptoms which is a great advance.

 

So why can’t we have it in Jarrow, the North East, England 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 along with other families, who shouldn’t be forced to battle for something that should be theirs by right.

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Meet your MP

 Stephen-Hepburn-MP

Stephen Hepburn has served the Jarrow Constituency as MP since 1997.

He was last elected to serve in June 2017 and won the seat with a conclusive 17,263 majority.

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