Saturday 25 May 2019

Cystic fibrosis drug Orkambi rejected despite patients' pleas for access

Photo: Getty Images/iStockphoto
Photo: Getty Images/iStockphoto

Meadhbh McGrath

The state’s medicine costs watchdog has rejected funding for the cystic fibrosis drug Orkambi.

The drug had been hailed as a “game changer" by cystic fibrosis campaigners, but was denied on cost effectiveness grounds.

Following an assessment, the National Centre for Pharmacoeconomics (NCPE) estimated the cost to the HSE over five years would be €391m.

Vertex Pharmaceuticals, manufacturer of the drug, is seeking to charge €160,000 per patient.

Cystic Fibrosis Ireland have expressed dismay at the ruling, which will affect approximately 500 people.

The NCPE’s report recognises the health benefits provided by Orkambi, but recommends that the drug should not be funded “at submitted cost”.

CF Ireland said the recommendation opens the door to further price negotiations, and called on Vertex to “significantly reduce” the price of Orkambi.

“We support a fairer deal for this drug but it will be a travesty if this drug is not provided to our patients or if there is a significant delay in providing this drug,” said Philip Watt, chief executive of CF Ireland.

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