Drug firms seeking ‘over the top’ prices, committee hears

The asking prices for some new drugs are "completely over the top", according to the director of the National Centre for Pharmacoeconomics Michael Barry.

If the HSE had accepted the initial asking price of pharmaceutical companies for every drug included in its schemes last year it would have cost an extra €1 billion over five years, Prof Barry said.

The centre for pharmacoeconomics assess pharmaceutical medicines for reimbursement on behalf of the HSE.

“The prices that are being asked by the pharmaceutical industry are in many cases completely over the top” Prof Barry tolf the Oireachtas joint health committee during a discussion on “orphan drugs” – medicines designed for rare conditions.

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Several members of the committee questioned the HSE’s decision not to reimburse Translarna, a new treatment for children with Duchenne muscular dystrophy.

Prof Barry said the European Medical Agency had only granted the treatment "conditional authorisation" on the basis that further trials be carried out, and said several countries had decided not to reimburse the drug. He said the clinical data on the treatment to date "is not good enough".

The treatment is currently available in Northern Ireland and 22 European countries.

PTC Therapeutics, the manufacturer of Translarna said Ireland was "lagging behind other European countries in facilitating access to new and innovative medicines for small patient populations with rare and ultra-rare conditions."

A spokeswoman for the company said Minister for Health Simon Harris should reform Ireand's assessment process for the reimbursement of orphan drugs.

Respreeza

Sinn Féin spokeswoman for health Louise O'Reilly said the HSE's decision not to reimburse another drug, Respreeza, that treats lung disease was disappointing.

A compassionate-use programme with the manufacturer where several patients had been receiving the treatment is set to conclude shortly. Ms O’Reilly said “the families involved here and the patients have been treated disgracefully, because they’ve been left in limbo in a way that I think is actually quite cruel.”

John Hennessy, national director of primary care and member of the HSE leadership team, said HSE representatives would be meeting the drug manufacturer next week to discuss the issue.

“I don’t accept that it is a cost issue, this is a very substantial multinational company. There has been arrangements in place for the provision of treatment for those compassionate-access patients for many years and I would be calling on them to continue that” he said.

Shaun Flanagan, chief pharmacist in the HSE Corporate Pharmaceutical Unit told the committee the health service is “doing our best to stretch the resources as far as we can to provide access to as many medicines”.

“These are really, really difficult policy-level ethical issues … we want to be able to say yes to everything. Can we say yes to everything with the resources we have? No. That’s the simple truth.”