Cystic fibrosis scandal: Fury as Labour MP says 'rare disease' debates a waste of time

This week’s list of Commons debates includes the NICE appraisal process for CF and other rare diseases and support for autism sufferers. But worried about a lack of time to discuss Brexit,

Labour whips dismissed the health debates as “fantasy business”. They tweeted: “The Government needs to provide parliamentary time for a different approach on Brexit, not waste time.” But

that sparked a furious outcry on social media.

Maybe you wrote this tweet in a moment of frustration, but it’s quite cold-hearted and should be revoked

Barrister David Turner QC, father to a CF sufferer, replied: “Please confirm you are not suggesting debates on autism and inherited rare diseases are a waste of time? Literally thousands of

patients are dying for life-saving drugs now.” 

Alison Dillon, 53, mother of TV actor and CF sufferer Oli Dillon, 20, demanded an apology. 

“Hundreds are dying from rare diseases because NICE’s appraisal system is not fit for purpose while Brexit drags on and gets in the way of proper business.” 

CF campaigner Ben Knowles, 29, posted: “I’m sorry, are you saying that a debate on the outdated NICE Appraisal System is a waste of time If so, you might have lost a long-time supporter.” 

CF sufferer Carlie Pleasant, 29, wrote: “Maybe you wrote this tweet in a moment of frustration, but it’s quite cold-hearted and should be revoked. 

“Thursday’s rare disease debate has already been rescheduled for Brexit once. Some of us don’t see this as time wasting as we simply don’t have time on our side to waste.”

And Nadeem Iqbal simply tweeted back: “Have you no shame @ labourwhips?” Yesterday the Labour Party apologised if “anyone took the comment to be in reference to backbench business, which it

was not. 

“It is only under pressure from Labour, and backbenchers, [that there are] important debates on issues such as cystic fibrosis and autism.” 

The Daily Express has been crusading for the NHS to strike a deal with US firm Vertex for its pipeline of vital CF wonder-drugs, including Orkambi. 

A petition demanding NHS England negotiates a deal with Vertex is just 17,500 names short of its 100,000 target. 

The petition – which can be found on the Daily Express website – had been signed by more than 82,700 people.

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A month ago, when the Daily Express launched its CF crusade, it only had 40,000 signatures. 

At 100,000 names, it forces a full debate in Parliament on the issue of CF drugs on the NHS. 

Meanwhile, Vertex has hit back at the Health Select Committee for suggesting its “monopoly” on life-saving cystic fibrosis drugs is “exploiting” sufferers. 

Earlier this month the committee held an inquiry into the stalemate between Vertex and NHS chiefs. 

Chair Sarah Wollaston MP urged Health Secretary Matt Hancock to agree an interim deal for immediate access. But she also suggested he refer Vertex to competition watchdogs “for what appears

to us to be the exploitation of a monopoly”. 

Yesterday, Vertex said it takes its “legal obligations seriously”. It said: “Case law recognises that on-patent medicines can be priced to allow innovators to earn back R&D expenditures and

reward them for the risks and costs of innovation.”

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