South Cambs MP continues fight for cystic fibrosis drug at PMQs

PUBLISHED: 17:30 26 November 2018 | UPDATED: 08:05 27 November 2018

South Cambs MP Heidi Allen.

South Cambs MP Heidi Allen.


The MP for South Cambridgeshire is continuing the fight for a cystic fibrosis drug to be made avilable on the NHS by raising the issue with Theresa May during Prime Minster’s Question Time.

Heidi Allen also met with Orkami manufacturer Vertex on Tuesday last week to discuss why the drug was stil not available on the NHS except in rare cases on compassionate grounds three years after the start of negotiations – even though the firm had received the largest ever offer made by NHS England.

Mrs Allen acknowledged that pharmaceutical companies need to recoup research and development through profit, but said the firm needed to provide some transparency about why the offer was deemed insufficient.

On Wednesday, the Conservative MP engaged Prime Minster Theresa May and pointed to Vertex’s huge forward profit forecasts for the next three years highlighting that, while companies are entitled to make reasonable and fair profits for their research and development, “a balance must be struck which is fair to cystic sufferers, drug manufacturers and tax payers alike”.

Mrs Allen asked the Prime Minister to personally intervene, following the news that the Health and Social Care Select Committee have made a call for evidence from Vertex, NHS England and NICE about negotiations thus far in a bid to seek transparency about Vertex’s demands for NHS funds. 
Vertex and all parties have until Friday to share their documentation about the deal proposed by NHS England for Orkambi – and other related drugs – which is equivalent to £500 million over the next five years.

Mrs Allen has long championed the cause of cystic fibrosis sufferers in seeking access to this medicine and has pledged to work with the Cystic Fibrosis Trust and parliamentary colleagues to support all efforts to break the impasse and get Orkambi for those with CF.

She is urging all patients with CF to submit their evidence about Orkambi to the Health and Social Care Select Committee by emailing

To watch a clip of the MP putting her question to the Prime Minsiter see


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