Patients’ group wants quick action on new CF drug
Philip Watt, chief executive of Cystic Fibrosis Ireland, called on the HSE and drugs company Vertex to agree a fair price on the drug, Kayldeco, as soon as possible.
“While we accept the right of the HSE to get as good a deal on the price of this drug as possible, what our members will not accept are significant delays in making this drug available,” he said.
“If the HSE turns around and says it will not pay for the drug, we will be responding in the strongest possible terms.”
A national value for money assessment system for new drugs could not recommend that the State pay €234,804 per patient per year for the drug — the price submitted by the manufacturer.
Michael Barry, director of the National Centre for Pharmacoeconomics, said they accepted that the drug worked, but, at €28m — about 40% of the cost of all new drugs this year — it came at a very high price.
Speaking on RTÉ radio yesterday, Dr Barry said that while short-term data on the drug was encouraging, the centre had not seen any information to show it reduced mortality.
The NCPE said a change of mind would depend on the company agreeing to a performance-based, risk-sharing scheme and/or a significant reduction in price.
“We have to think of all patient groups and if we spend money in one area it may not be available to spend in another area,” he said.
Around 120 people with CF in Ireland have a G551D mutation — about 11% of the CF population in Ireland.
Mr Watt said 20 people with the mutation had been taking the drug on a trial basis and it made a “fantastic” difference to their lives.
“It helps them breathe more easily, gain weight, and resulted in a significant improvement in the qualify of their lives.”
However, Kalydeco is expensive because of the high research and development costs and because there are comparatively few people who could benefit from it.
The drug is available to people with CF in England.
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