Cystic Fibrosis Drugs: Orkambi
Debate between Seema Kennedy and Sarah Wollaston(4 years, 10 months ago)
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Seema Kennedy
I shall turn later in my speech to that specific avenue that some sufferers have gone down.
Dr Wollaston
The Minister referred to the importance of Vertex engaging with NICE. Does she share my concern that when I wrote to Vertex and NICE about the failure to make progress, Vertex assured me that it had contributed “substantial new evidence” on the three products in question, yet I subsequently heard from NICE that it had received only
“an overview of the clinical evidence”,
rather than genuine engagement? Will she join me in calling on Vertex to properly engage with the process, so that we can get the full evidence base on which to make these decisions?
Seema Kennedy
I agree with the Chair of the Health and Social Care Committee and urge Vertex to re-engage with the NICE process. To date, unfortunately, it has continued to refuse to accept the process or has suggested unacceptable conditions on the NICE value assessment of its product, which would render the outcome meaningless. That comes despite NHS England’s latest proposals offering to reimburse Vertex ahead of a positive NICE recommendation, which for a deal of this size is unprecedented; agreeing to implement real-world data collection, as the Committee has called for, to help Vertex to demonstrate the value of its medicines; and offering significantly increased prices in comparison with their offer last July.
NICE has a 20-year history and is internationally renowned and independent. Its methods and processes for the development of its guidance have been in place for 20 years, but it recognises that it needs to evolve. It continues to review its procedures to ensure that they remain fit for purpose; it is now undertaking a review of its technology appraisal methods in line with the commitment in the 2019 voluntary scheme, and it encourages all stakeholders to engage. NICE has recommended 75% of the drugs for rare diseases—some of which I will touch on later—that have been assessed through its technology appraisal programme for the eligible patient population.
Last week, the Association of the British Pharmaceutical Industry made it clear that
“NICE is the cornerstone of NHS efforts to ensure the price being charged by a company represents the value being delivered.”
Commenting on the current situation, it said that
“the APBI would always encourage companies to fully engage with NICE at all stages of the process.”
Furthermore, it commented on the current structure of NHS England’s proposed deal with Vertex, saying that
“the structure of the offer represents exactly the sort of flexibility the industry has been calling for, for some time.”
However, Vertex is willing to accept only its own valuation of Orkambi; I draw your attention, Mr Hanson, to comments directed at Vertex by Members from across the House, including those made by the shadow Minister, the hon. Member for Washington and Sunderland West (Mrs Hodgson).