Heidi Allen, MP for South Cambridgeshire turned her attention to the fight for Orkambi once again this week by hosting a meeting with Vertex, Orkambi’s manufacturer on Tuesday at which she asked some hard hitting questions about Vertex’s aspirations for cystic fibrosis sufferers accessing their drug, Orkambi. Heidi acknowledged that pharmaceutical companies need to recoup research and development through profit but highlighted that three years on from the start of negotiations, Vertex had received the largest ever offer made by NHS England and needed to provide some transparency about why this was deemed insufficient.
Following a disappointing response to this issue, Heidi raised the matter at Prime Minster’s Question Time. Heidi engaged the Rt Hon Theresa May and pointed to Vertex’s huge forward profit forecasts for the next three years, highlighting that whilst companies are entitled to make reasonable and fair profits for their research and development, a balance must be struck which is fair to CF sufferers, drug manufacturers and tax payers alike. Heidi 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 30th November to share their documentation about the deal proposed by NHS England for Orkambi (and other related drugs) which is equivalent to £500m over the next 5 years. You can see Heidi’s question by clicking on the play button above.
Heidi has long championed the cause of cystic fibrosis sufferers in seeking access to this medicine and was delighted to join the Cystic Fibrosis Trust and Ian Austin, MP at a parliamentary reception intended to raise awareness of the need to get #Orkambinow for cystic fibrosis sufferers in her constituency and across the country.
Heidi pledged to work with the Cystic Fibrosis Trust and colleagues across the House to support all efforts to break the impasse and get #Orkambinow for CF sufferers. She is urging all cystic fibrosis patients to submit their evidence about Orkambi to the Health and Social Care Select Committee by emailing - firstname.lastname@example.org.