Government thumbs down to groundbreaking cystic fibrosis therapy

Fianna Fail Deputy lashes decision as ‘deeply concerning.’

Sligo News File Online.

As TDs avail of multi-thousand euro salary top-ups and the Fianna Fail backed Coalition refuses to accept billions in back tax from the Apple corporation, patients with cystic fibrosis are being told the country cannot afford a drug which would alleviate their suffering.

Marc MacSharry, TD, Fianna Fail
Marc MacSharry, TD,
Fianna Fail

Orkambi is an oral treatment that helps in correcting the mutated genes in those with cystic fibrosis. It is described by the developers as “a novel therapeutic approach designed to treat the root cause of cystic fibrosis instead of just the severity of symptoms.”

But the government has seemingly turned down the groundbreaking medication, declaring that the cost per patient is too high.

Cystic Fibrosis Ireland has pointed out that Orkambi is expensive because of the huge costs of developing the drug. The price, they say, is also influenced by “the relatively few patients worldwide from whom the pharma company can seek to recoup their costs and to invest in further research.”

While supporting the government in getting the “fairest price” for the therapy, they have said its use would see “very significant CF Lungssavings to the government arising from the dramatic decrease in hospitalisations arising from those on this drug.”

Sligo-Leitrim TD Marc MacSharry has branded what he takes to be the government’s mindset on the treatment as “absurd.”

He said that “following a meeting of the HSE Drugs Committee, it is expected that the government will formally announce its decision to refuse to provide the Orkambi drug to suitable CF sufferers.”

The Fianna Fail Deputy said Ireland has the “highest prevalence of CF in the world and therefore every effort should have been made to have this drug put on shelves in pharmacies nationwide.

“To learn that the government has rejected adding this game-changing drug to the Long-Term Illness Scheme for CF sufferers when lives have been significantly improved and saved is deeply concerning.”

He said the Minister “must now answer critical questions such as why the government and the HSE have decided not to grant access to the Orkambi drug, and why the cost of this drug is being prioritised over the value of saving lives.

CF Ireland“The value of life and clear savings of treatment with this drug through the reduced need for acute care far out ways any monetary cost. “

“This drug was approved by the EU Medicines Agency some time ago and has been proven to be of major benefit for cystic fibrosis sufferers. Furthermore, it has been shown to extend life expectancy and significantly improve the quality of life for those who suffer from the disease.

“Ultimately, that should far outweigh any criteria for assessment, and the HSE should have kept that at the top of mind when it came to denying this medication.

Stating that he intends to raise the issue in the Dail during the coming week, he concluded that “there must simply be a reversal of this decision for CF sufferers in Ireland.”