Maker of cystic fibrosis drug calls for meeting with minister in row over cost
The company which makes the cystic fibrosis drug Orkambi has called for a meeting with Health Minister Simon Harris and said it was surprised an agreement to make it available to patients has not been reached by now.
Vertex also claimed the quoted €392m price tag for prescribing the drug for Irish cystic fibrosis sufferers was "incorrect" and did not reflect recent discussions with the HSE.
Around 500 people with cystic fibrosis in Ireland are desperate to try Orkambi but a cost benefit analysis has so far deemed it too expensive.
Vertex vice-president and regional general manager in northern Europe Simon Lem said in a letter to Cystic Fibrosis Ireland chief executive Philip Watt that the pharmaceutical company had "continually engaged in good faith with the HSE since Orkambi was licensed over one year ago".
Vertex had hoped that an agreement was within reach and was surprised by the latest developments.
Mr Lem added: "Vertex met with HSE representatives six times in five months, presenting a range of specific workable proposals that could expedite access for all eligible patients.
"At no time during the process did we receive a counter-offer or guidance from the HSE on decision making criteria. Proposals from Vertex included, for example, guarantees of budget certainty for the HSE, novel access schemes and ways to reduce the timelines on future reimbursement decisions.
"Vertex therefore refutes allegations by the HSE of failing to meaningfully engage and the publically quoted budget impact figure of €392m is incorrect, unrealistic and does not reflect discussions to date with the HSE."
Mr Lem said Vertex was ready to meet Mr Harris at short notice in order to resolve this vitally important issue for the cystic fibrosis community of Ireland.
Mr Harris has indicated that he is writing to his counterparts in other countries to try to form a collective bid to make the medicine more available.