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News of new CF drug funding welcomed


‘GAME CHANGER’Padraig Burns

Edwin McGreal

News of a HSE deal for the rollout of a revolutionary drug to treat cystic fibrosis has been hailed as a ‘potential game changer’.
Last week saw Minister for Health Simon Harris announce that Orkambi will be available through the HSE from next month, after a long campaign by the cystic fibrosis community in Ireland.
Cystic fibrosis campaigner Pádraig Burns, from Westport, who has two daughters with the condition, said the announcement was ‘great news’.
However, he did strike a note of caution, that ‘there is no certainty it will work for everyone’ but hailed the news of funding for the drug as ‘a big breakthrough’.
“If it works this could be a game changer for people with CF,” Mr Burns told The Mayo News. “It is something we’ve been waiting for, for years as a family, and I hope it is a game changer. It is great news. We are lucky that our kids are pretty well. For CF patients who are not well it is fantastic news altogether,” he added.
Mr Burns said the ‘really exciting’ part of the deal is that ‘spectacular’ drugs currently being trialed are also included in this funding deal.
“The great thing about the Orkambi deal is that pipeline drugs are also included. Drugs at clinical trial stage in the US are spectacular and could be the real deal. We’re now at the stage with CF care that we are tackling the cause and not the symptoms and that is really, really exciting.
“Hopefully in another two years we could be looking at huge advances and the normalisation of life for people with CF which would be amazing,” he said.

Hospital admission
The roll-out of the drug will involve hospital admission for the first administration of the drug to monitor side effects which Mr Burns points out can be so severe in some cases as to make the drug redundant for a minority of patients.
If the first administration goes well, it will involve daily administration of Orkambi at home for those with cystic fibrosis. The drug is proven to reduce infections, increase lung function and energy levels for people with cystic fibrosis.
Another drug, Kalydeco, which treats a smaller percentage of people with a different mutation of cystic fibrosis, is also available as a result of the new deal.
However, Pádraig Burns said that while the news is very welcome, it was a difficult week for families of people with cystic fibrosis who lost their lives.
“I’m acutely aware of people for whom this news is too late and their families are in our thoughts,” he said.

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