With Vertex, NHS back at the pricing table, CF advocates ratchet up the pressure

Vertex Pharma
Vertex and British health officials haven't been able to reach a funding deal on Orkambi, and patient advocates are keeping the pressure on. (Vertex Pharma)

As Vertex Pharmaceuticals and British health officials try once again to make a deal on the cystic fibrosis drug Orkambi, patient advocates haven't stopped pushing the two sides to come to terms. 

A petition demanding Orkambi coverage passed the 100,000-signature mark that triggers parliamentary consideration for a debate. Patients “need Orkambi and other precision medicines as they are developed,” the petition says. “Sufferers in the EU, U.S. and Australia can access the drugs, but not the U.K."  

Hundreds of patients have died since Orkambi won European approval in 2015, the petition says. All the while, Vertex and British health officials haven’t been able to reach a deal to fund the treatment. Most recently, the government offered £500 million over 5 years and £1 billion over 10 years for access to Orkambi and other CF medications, but Vertex said the offer was too low.

The two sides started pricing negotiations after Orkambi’s approval but haven’t been able to come close to an agreement, according to testimony at a hearing last month. The U.K. Parliament’s Health and Social Care Committee took up the issue after years of standstill. 

At the hearing, Vertex CEO Jeffrey Leiden said British health officials “walked away” from negotiations last year. National Institute for Health and Care Excellence Director Andrew Dillon, however, said it was Vertex who wasn’t engaging. 

Leiden said at the hearing that he was set to meet with British health minister Matt Hancock the following week. Hancock recently told Britain’s House of Commons that the sides have been engaged in “constructive discussions,” The Guardian reported

During the hearing, Member of Parliament Sarah Wallaston asked whether the drugmaker has had to destroy any Orkambi stocks amid the standoff. A Vertex executive followed up later and said the company destroyed nearly 8,000 packs that expired last year. 

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