HEALTH chiefs have told the manufacturers of an expensive cystic fibrosis drug to reduce the price – or enter a "risk-sharing scheme" where the full price would only be paid if the drug benefits a patient.
Negotiations are already under way to reach a deal with the maker of Ivacaftor (Kalydeco), which would cost €234,000 a year per patient at current prices and has been deemed too expensive by the health authorities.
The Health Service Executive (HSE) confirmed that it is talking to Vertex Pharmaceuticals, the UK firm that makes the new medicine which can significantly improve the lives of sufferers of the genetic disease.
The statement follows an assessment of the cost-effectiveness of the drug by the watchdog, the National Centre for Pharmacoeconomics in St James's Hospital, Dublin.
A new drug must first be deemed cost-effective by this centre before it can be added to HSE schemes and made available to patients.
The assessment concluded that making the drug available at its current cost would be too expensive for the HSE.
Director Prof Michael Barry recommended a cut in price or a system of risk sharing – where the maker would only be reimbursed if it works.
Prof Barry, in his assessment, also pointed out that it would take some years to find out if the drug's benefits could be sustained over time.
The drug could potentially improve the condition of between 113 to 120 of the 1,200 people with cystic fibrosis. It is suitable for people with the cystic fibrosis gene, G551D.
It would cost the HSE around €26m-€28m, which is an estimated 40pc of its budget for new treatments covering all diseases this year.
A spokeswoman for the HSE said it was currently in negotiations with the manufacturer of the drug and "therefore it would not be appropriate to comment further while these negotiations are ongoing".
The Cystic Fibrosis Association of Ireland said people treated with the drug had seen their lung function improve and it helped them gain weight.