Fresh bid by Harris to lower cystic fibrosis drug price

Health Minister wants international collaboration amid reports Orkambi will be rejected by HSE

Harris says Orkambi process not over yet. Picture: Fergal Phillips

Health Minister Simon Harris has written to health ministers in England, Scotland, Canada and Australia as part of efforts to make a new cystic fibrosis treatment available in Ireland.

It came after The Sunday Business Post revealed that the drug, called Orkambi, would be rejected for use by the HSE after its drugs committee decided it did not deliver enough benefits to justify a €159,000 per patient a year price tag.

Cystic Fibrosis Ireland has dubbed the drug a “game-changer” for sufferers. It is estimated that just over 500 people in Ireland are eligible for the treatment.

The four countries have been considering making the treatment, Orkambi, available, and have been talking to its producer, pharmaceutical company Vertex.

Now Harris has asked them to collaborate to try to make the drug available at an “affordable and cost effective” price. None of the countries has yet made a final decision on making Orkambi available.

In a statement, Harris said securing access to new treatments for patients at an affordable price remained a priority. “However, we cannot have a situation whereby exorbitant prices make it effectively impossible to access a new treatment like Orkambi,” he added.

He said the four countries, along with Ireland, should adopt a common approach to engaging with Vertex and should learn from each other's engagements so far in order to try to achieve a fairer price.

Harris said the manufacturer must “significantly” reduce the price it is seeking for Orkambi. The minister also said he had assured cystic fibrosis patients that the process for accessing Orkambi was not over.

The National Centre for Pharmacoeconomics (NCPE), assessed Orkambi some months ago and concluded that the five-year budget impact to the HSE would be €391m.

Earlier this year, The Sunday Business Post reported that the Vertex chief executive Jeffrey Leiden was paid €68m over the past three years.

Earlier this month, it was reported that Ireland is examining the option ofteaming up with a European bloc that has started to negotiate collectively to lower prices with drug firms.