UK politicians to grill Vertex CEO over CF price drug row

The CEO of Vertex Pharmaceuticals is to give evidence before influential UK politicians on Thursday, who are investigating the ongoing row over the price of cystic fibrosis drugs in England.

MPs from the Commons Health and Social Care Committee are to hear evidence from representatives from the National Health Service, NICE, and Vertex at the session investigating why the company’s powerful CF drugs are unavailable to patients in England.

To recap, the situation is as follows: NICE rejected Orkambi (ivacaftor+lumacaftor), which costs £104,000 per patient per year, for people with two copies of the F508del mutation almost three years ago in mid-2016.

Vertex said it was open to further negotiations with NHS England to try and get Orkambi funded on the NHS, and tried to strike a deal covering funding for all its approved drugs as well as those that are yet to be regulators in clinical development.

But these talks broke down acrimoniously with Vertex rejecting a deal worth £500 million over five years and more than £1 billion over ten years.

The terms were further improved in a letter to Dr Jeffrey Leiden in January this year, but Vertex has not accepted.

Vertex has also refused to submit any more of its drugs to be assessed by NICE, including its latest offering Symkevi which would cover more patients than Orkambi.

Vertex said that the cost-effectiveness body’s appraisals will not value the company’s drugs accordingly.

Leiden will give his side of the story, along with chief commercial officer Stuart Arbuckle, to answer MP’s questions in the Houses of Parliament.

Vertex is holding out for a better price because of the size of the CF community – with almost 10,000 patients the UK is the second largest market for CF drugs in the world.

Campaigner Christina Walker, whose eight year-old son Luis has CF, but is being denied treatment with Orkambi, said: “Vertex’s exclusive pricing strategy has effectively withheld life changing medicines from patients like my son for more than three years. It’s all about corporate profits.

“They blame the appraisal system as a distraction from excessive pricing, while not engaging with it in good faith.

“The last data for Orkambi was submitted in July 2016 and the company has never submitted data for Symkevi. Every country around the world that has assessed the cost-effectiveness of Orkambi has questioned its price.” 

Vertex's revenues have been rising thanks to the success of its CF drugs - for the full year 2018 CF drug revenues were $3.04 billion, up 40% compared with 2017.