Smith calls for action on CF drug

The negotiations on the price of cystic fibrosis drug Orkambi could be completed in weeks the Taoiseach, Enda Kenny has said. Cystic fibrosis patients and their families held a protest outside the Dáil on Wednesday over access to the drug.

Minister for Health Simon Harris earlier said the discussion between the HSE and manufacturer Vertex Pharmaceuticals were entering a “critical phase”.

Fianna Fáil Deputy Brendan Smith met with some of the protesters on Wednesday and discussed the issue: “I have been constantly raising through Parliamentary Questions in Dáil Éireann the need for the Minister for Health to authorise, without further delay, the HSE to make the drug Orkambi available to patients with Cystic Fibrosis.”

Deputy Smith said that there is no reason to keep putting the decision off: 'People living with Cystic Fibrosis have been waiting more than long enough to have Orkambi made available to them. We have heard from people with Cystic Fibrosis in terms of how it affects their lives and in particular the impact of the latest and very effective medicine, Orkambi. It is accepted internationally that Orkambi can have a transformative effect for patients.'

He said that patients and their families have been more than reasonable and Cystic Fibrosis Ireland and their Chief Executive Officer have been extremely responsible in their demands: “The Government and in particular the Minister for Health to deal with this issue without further delay and make this drug available for patients,' Deputy Smith said.