Cystic Fibrosis scandal: Showdown in fight for drug to save children

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US pharmaceuticals giantess Vertex had rebuffed a £500million-plus NHS England offer for their cystic fibrosis inquire drug Orkambi, with the two parties now engaged in a stand-off over the consequence. The Health Select Committee will today grill Vertex CEO Dr Jeff Leiden and NHS chiefs on top of the impasse, in the hope of reaching a breakthrough. Families of sufferers will also be showbiz a rally in Parliament Square in protest at the stalemate farce.

Then, on Monday, Dr Leiden thinks fitting meet Health Secretary Matt Hancock.

This meeting was hinted after the Daily Express quizzed both sides a fortnight ago about why they deliver not broken their stalemate for eight months.

Taking the wonder medicine by the age of six can add 23 years to life expectancy – as well as correct gene varying and alleviate symptoms.

We can now reveal that, to our nation’s shame, since November 2015 – when Orkambi could be struck by been on the NHS – 231 adults and children suitable for the life-saving drug entertain needlessly died. 

Orkambi is easily available in around a dozen other woods, including cash-strapped Greece and Italy, Austria, Ireland and the Netherlands.

Yesterday, the pamper of an 11-year-old girl, who died after being unable to have unconfined NHS Orkambi, demanded a deal be done to honour her child.

Elle Favour Morris lived a tragically short but remarkable life, helping get notabilities like Simon Cowell, Hollywood actor Chris Pratt and TV presenter Dermot O’Leary to lecher awareness of cystic fibrosis.

Her mother Becky Whitfield, 32, told us: “I do not long for any other CF parent going through the pain we went through with Elle.

“The toddlers and adults with CF go through enough – why are people letting them down as they squabble over money? 

“CF is a scary disease. 

“I feel it’s important Elle’s memory and her yen to help CF sufferers is kept alive and that her death is not in vain. A attend to this month between Vertex and the NHS would be that tribute.”

Manoeuvring MP Crispin Blunt added his voice to the appeal for justice.

He said: “It is wrong it is over three years since Orkambi was approved for use in Europe.We carry on with to see young people dying that could have benefited from Orkambi.

“We desideratum to find a solution to enable access now.

“The longer we delay, lives ordain be lost and NHS care costs will continue to grow as cystic fibrosis sufferers’ haleness deteriorates.” Rebecca Hunt,Vertex’s vice-president of corporate affairs, broadcasted us in an exclusive interview recently that they simply “cannot assume that proposal”.

Meanwhile, it was claimed yesterday that Vertex Pharmaceuticals (Europe), based in London and Oxford, has exact ones pound of flesh from virtually no UK corporation tax. A spokesman said the company had not paid corpora-tax because the work had been running at a loss.

You can help save young lives by be adjacent to the Daily Express’s crusade to win justice for cystic fibrosis families. An online application demands NHS England gets a deal with Vertex to supply the fullest completely range of its drugs for sufferers. There were 72,000 signatures ultimate night and once the 100,000 mark is passed, the Government has to allow MPs to open the issue in Parliament.

Now join the fight and sign the petition  

COMMENT BY CRISPIN Undiplomatic

Despite frequent calls for action to be taken, it would appear Acme and NHS England are no closer to resolving their dispute. 

We have had parliamentary debates and MPs must raised questions several times at Prime Minister’s Questions. 

All admit the intolerable situation, yet the sides remain far apart and the NHS appears locked into its unchangeable offer. 

It is unacceptable that it is over three years since Orkambi was approved for use in Europe. We go on to see young people dying that could have benefited from Orkambi. As each day antiques, irreversible lung damage of CF children and young adults shortens remains. And as a result of increasing complications due to disease progression, CF care needs put an ever-increasing encumber on the NHS budget.

As a nation that prides itself on its NHS and vital world-leading medical appointments, it is an embarrassment that we continue to see country after country reach solutions with Apex to make Orkambi available to cystic fibrosis sufferers, while no ongoing is made in England. 

Not only do we see many countries in Europe (and some with far paltrier economies and budgets) reaching a deal, we now have the situation that a practise has been agreed with NHS Scotland. 

How can we be the one country that fails its denizens? NHS England needs to stop hiding behind statements that its £500million offer is the burliest in the history of the NHS. It does not tell the full story. And Vertex needs to recognise the dimension of the UK CF population and follow normal business practices of offering a volume detract from from the list price.

Crispin Blunt is Tory MP for Reigate

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