Tuesday 21 November 2017

HSE offered a 'significant discount' on life-saving cystic fibrosis drug, charity claims

Supporters of people with cystic fibrosis, their families and friends protest at Dáil Éireann over Orkambi. Photo: Shane O'Neill Photography.
Supporters of people with cystic fibrosis, their families and friends protest at Dáil Éireann over Orkambi. Photo: Shane O'Neill Photography.
Jillian McNulty Picture: Damien Eagers

Eilish O'Regan and John Downing

The HSE has been offered a revised price for the cystic fibrosis drug Orkambi which "is a significant discount” on the original cost of €159,000 per patient annually, it was claimed today.

Cystic Fibrosis Ireland said the new offer should be considered and asked that Health Minister Simon Harris to speed up deliberations on whether it will be made available to around 500 people with cystic fibrosis who want to see if it will improve their condition.

Mr Harris has appealed for a few more weeks to finalise discussions on a price which would allow access to the drug.

They were speaking as  cystic fibrosis campaigners  converged for a protest outside the Dail today.

The minister met with Jillian McNulty, who has seen her health dramatically improve on Orkambi  and Philip Watt  chief executive of the charity on Monday.They are also seeking wider access to the drug Kalydeco.

“The Taoiseach referred to this meeting in the Dáil, so we can now publicly acknowledge that meeting without breaking confidences.

“The meeting was courteous and constructive, but fell far short of a ‘yes’ decision on Orkambi and Kalydeco, as can be seen from the Minister’s subsequent statement.

“The Minister made it clear that while he was against the protest today, it would not jeopardise a possible final positive decision.

“Once again we welcome the support and efforts by Minister Harris and we will continue to engage with him and the Government to ensure we get a positive decision. “

Meanwhile, in the Dáil Taoiseach Enda Kenny said he hoped that the Health Minister was close to agreement with the drug companies. And he wanted to have all details worked out to avoid generating “false hopes.”

“Minister Harris is putting in place the future certainty for CF sufferers for the pipeline of drugs," Mr Kenny said. He added that he hoped that agreement could be achieved “inside a couple of weeks.”

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