Cystic Fibrosis Ireland group dismay after drug deemed not ‘cost-effective’

Cystic Fibrosis Ireland has expressed dismay at a recommendation to the HSE that a drug to treat the condition is not “cost-effective”.

The National Centre for Pharmacoeconomics evaluates the benefit and costs of medical technologies and provides advice to the HSE. It was asked to assess the drug Orkambi, a treatment which Cystic Fibrosis Ireland said is “groundbreaking” and could benefit 500 CF sufferers.

The centre said “lumacaftor/ ivacaftor (Orkambi) is not considered cost-effective for the treatment of cystic fibrosis in the cohort of patients 12 years and older who are homozygous for the F508del mutation in the CFTR gene”.

It said, therefore, it was not “recommended for reimbursement” at the submitted price. It said the annual cost per patient would be €159,050 including the patient care fee. “The manufacturer estimates the five-year gross budget impact of lumacaftor + ivacaftor at €352,281,736. The centre estimate of the five-year budget impact is €391,892,681.”

Cystic Fibrosis Ireland said the centre recommended Orkambi not be funded ‘at submitted cost’. It said this opened the door to further price negotiations and called on the pharmaceutical company Vertex to significantly reduce the price as part of those talks.


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