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Friday 20 September 2019

New round of Orkambi price talks lined up for next week

Protest outside Leinster House in support of people with cystic fibrosis and the campaign for Orkambi drug therapy approval in Ireland by supporters of people with cystic fibrosis, their families and friends Picture by Shane O'Neill Photography
Protest outside Leinster House in support of people with cystic fibrosis and the campaign for Orkambi drug therapy approval in Ireland by supporters of people with cystic fibrosis, their families and friends Picture by Shane O'Neill Photography
Eilish O'Regan

Eilish O'Regan

Hopes of a breakthrough in the campaign to secure the drug Orkambi for cystic fibrosis patients rose yesterday after it was confirmed talks on a new price agreement will resume on Wednesday.

The HSE told the Irish Independent that the meeting with its officials and the makers of the drug, Vertex, has been arranged.

However, other patients, who suffer from the most common genetic lung disorder in Ireland, were left devastated after being told a cost-benefit analysis has deemed a life-changing new drug to be too expensive.

The drug Repreeza (Zemaira), to treat the sufferers of Alpha-1, will cost €84,364 per patient annually. It was rejected by the National Centre for Pharmacoeconomics.

The Alpha One Foundation called on Health Minister Simon Harris to intervene.

Kitty O'Connor, CEO of Alpha One Foundation, said around 350 people have been diagnosed with the severe form of Alpha-1 in Ireland.

Patients on the drug on a trial basis fear it will be stopped at the end of January.

Irish Independent

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