The UK House of Commons' Health and Social Care Committee has requested documents and evidence from Vertex Pharmaceuticals, NHS England and the National Institute for Health and Care Excellence (NICE) regarding ongoing and lengthy negotiations about NHS funding for the firm’s cystic fibrosis treatments.
The parties have been in talks over provision of Vertex’ cystic fibrosis medicines since NICE first rejected Orkambi (lumacaftor/ivacaftor) back in 2016, deeming it too expensive.
Negotiations remain confidential, but earlier this year Cystic Fibrosis Trust chief executive David Ramsden said the latest offer would see NHS England pay Vertex around £500 million over the next five years and over £1 billion over the next 10 years for its existing and future CF therapies.
However, at the time, spokesperson for Vertex told BioCentury that NHS England's offer equates to about £14,000 per patient per year, which represents a near 90 percent discount on what Germany reimburses for Orkambi alone, and the firm voiced concern that the offer did not reflect the true value of its cystic fibrosis medicines.
Now, as part of an inquiry into the situation, MPs have requested Vertex' final submission to NICE for Orkambi, including details of the proposed price and evidence on clinical benefit; any further formal offers to NICE either to reduce the price or to provide further evidence of greater clinical benefit beyond that in the initial submission; full details of all formal offers made to NHS England; and evidence in support of the firm’s public statement that it has offered the NHS in England the lowest price for its cystic fibrosis drugs of any country in the world.
The Committee said it has also requested any relevant evidence from NICE and NHS England, and that expects to receive all documents by November 30, at which point they will be made publically available, unless the parties can reach a deal beforehand.
Vertex said in a statement that it “welcomes the Committee's interest in access to cystic fibrosis medicines in England and we look forward to supporting its inquiry into this important issue.”
Back in April, ministers from the Department of Health wrote a letter asking that Vertex bring negotiations with NHS England over access to cystic fibrosis drug Orkambi “to an urgent resolution”.
The move followed a debate in parliament sparked by a public petition asking that the drug be made available on the NHS - which gathered more than 116,000 signatures - during which MPs sought government help in securing further negotiations between the two sides.