Wednesday November 25, 2020

Vertex set to resume negotiations with HSE over Orkambi

Health Minister says drug giant must now come up with better offer

7th December, 2016
Deal or no deal? Orkambi

Health Minister Simon Harris has said he is pleased that drug manufacturer Vertex has indicated it will resume talks on Orkambi.

Speaking from a meeting with EU Health Ministers in Lisbon on drug price negotiations, Harris said this evening: "I have always said that Vertex need to re-engage in a meaningful way with the HSE that addresses the core issue of price and affordability.

"In that context the company must return to the table with a significantly better offer. This has not happened to date and I again call on the company to re-engage in a meaningful way.

"However, I was pleased to learn that Vertex has responded to the HSE today with a view to re-engage in negotiations with them on Orkambi."

Harris said he has raised the issue of the "unacceptably high price" of Orkambi making the CF drug inaccessible- not just for Ireland's CF patients but for other patients around Europe.

"I intend to continue to intensify my engagement with colleagues in Europe and indeed other countries on this issue," he added.

"I want to see CF patients receive access to the best treatments possible. That remains my priority."

In a short statement the HSE said it wants the negotiations to recommence immediately and called on the company to set out a more realistic price for Irish patients.

The HSE also called on Vertex to make it clear to the public the price it intends to charge.

The HSE and Vertex Pharmaceuticals initially entered price negotiations earlier this year after the National Centre for Pharmacoeconomics found Orkambi was unjustifiably expensive at €159,000 per patient per year.

The announcement comes after hundreds of people took part in a protest at Leinster House demanding access to the drug.

Among them were many people who suffer from CF and their family members. There were also family members of CF patients who have died with the disease.

The crowd heard campaigner Jillian McNulty talk about how Orkambi has improved her life, and the need for the government to make it available.

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