Orkambi

Part of Petition - Closure of ST George’S Cross Branch of the Bank of Scotland – in the House of Commons at 10:02 pm on 4 February 2019.

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Photo of Bill Wiggin Bill Wiggin Chair, Committee of Selection, Chair, Committee of Selection, Chair, Committee of Selection 10:02, 4 February 2019

No, I do not agree. The purpose of this debate is to a show an alternative that allows NICE to spend taxpayers’ money on drugs for other conditions while still allowing cystic fibrosis sufferers to have access to this vital drug—and not just to Orkambi, but to the next generation of the same sort of drugs. Bear with me because we have not got to the good bit yet.

In July 2016, NICE recognised Orkambi as an important treatment, yet was unable to recommend the drug for use within the NHS on grounds of cost-effectiveness. The drug is estimated to cost around £104,000 per patient per year and must be taken for life. Orkambi is not provided by the NHS, except in rare cases on compassionate grounds. It remains patent to its manufacturer, Vertex Pharmaceuticals, under UK patent law. In July 2018, NHS England made what it said was its best and final offer to Vertex of £500 million over five years. This was described by the NHS as the “largest ever financial commitment” in its 70-year history. Tragically, Vertex rejected the offer.

We all know that it is essential that a solution is found as soon as possible to make the drug available, as every day counts in slowing the progress of the disease. In an email to me, Vertex states that it

“is committed to finding a sustainable solution for access to our medicines for Cystic Fibrosis patients, including Orkambi”.

That is not quite the impression I have received so far. I sincerely hope that that is indeed its highest priority.

The drugs that constitute Orkambi—Ivacaftor and Lumacaftor—can be synthetically developed at low cost, yet their price remains inaccessibly high.