Minister proposes EU bulk buying of drugs to lower costs

Minister for Health Simon Harris says he intends to discuss with his European colleagues in the coming weeks the potential to jointly purchase new drugs in order to reduce costs.

He was reacting to controversy over news that the Cystic Fibrosis drug Orkambi had been judged uneconomic by the National Centre for Pharmaeconomics (NCPE), the Government body which evauluates the medical and economic case for new drugs.

The cost of Orkambi is an estimated €158,000 a year per patient.

Mr Harris said that contrary to reports, the drug had not been rejected by the HSE. “The factual position is that the National Centre for Pharmacoeconomics is not in a position to recommend at the current price.”

However, Mr Harris said, “The drug manufacturer has indicated a willingness to negotiate . . . This process is not over. It will continue as a priority.”

Professor Michael Barry, head of the NCPE said he was hopeful there would be a successful outcome from negotiations with drug manufacturers Vertex.

Speaking on RTÉ's Morning Ireland he said the NCPE had a good track record in negotiations with drugs companies.

“We don’t put a price on life, but we believe the manufacturers got the price wrong here. The price is too high, we need a five fold reduction,” he said.

Earlier, the chief executive of Cystic Fibrosis Ireland Philip Watt said he was very disappointed the "game-changing" drug had been rejected by the NCPE.

The centre had advised that the HSE should not cover the drug under State schemes and that the price would have be lower than € 30,000 a year, per patient, to be cost-effective.

Mr Watt said Orkambi had proven to be an innovative and very effective drug and was more important in Ireland than anywhere because more than 50 per cent of the cystic fibrosis population of 500 here would benefit from it.

He said that he did believe the drug company could significantly drop its price and he acknowledged that the drug does cost a lot but it he pointed out that it meant fewer hospital stays for cystic fibrosis patients.

The issue was raised on Thursday in the Dáil where Tánaiste Frances Fitzgerald has said the Government wished to ensure people had the medical drugs they needed.

She was replying to Fianna Fáil leader Micheál Martin who said the programme for government included the commitment of an independent patient advocacy service.

There was also a commitment to providing “appropriate patient care pathways,’’ he added.

Earlier, he said, Jillian McNulty, who has cystic fibrosis, had outlined on RTÉ Radio, in an articulate way, the impact the drug had on her life. She had five weeks' supply left, he added.

It seemed to him, he said, patient advocacy was not on the high end of the agenda.

Speaking on Morning Ireland, Ms McNulty said "Orkambi means people with cystic fibrosis using it can live a normal life, or as near a normal life, as possible".

She said the drug, which she had been taking for three years, was “without doubt” a life-saving medication and without it she may not be here.

Mr Harris said Vertex had said it would continue to make the drug available to people in Ireland who are on trials, some of whom are reaching the end of the trial period in the coming weeks.

This, he said, would allow the HSE and the drug manufacturer “space to negotiate”.

He further acknowledged that with a new generation of cancer drugs shortly to become available - many of which will be vastly expensive - the problem presented by Orkambi was likely to reoccur.

“We’re going to have to look at a new policy framework,” he said. He wanted the “voice of clinician at forefront” of decisions about drugs, saying he intended to bring proposals to government shortly

Fianna Fail’s Darragh O’Brien said he was, “bitterly disappointed” to learn the drug had been rejected.

“This drug was approved by the EU Medicines Agency some time ago and has proven to be of major benefit for cystic fibrosis suffererse,” he said.

Sinn Féin Spokesperson on Health Louise O’Reilly TD said that “deciding that a drug is too expensive to be funded, without addressing how costs can be reduced through negotiations with relevant companies and sectors is not a tough policy choice, it is a cop out”.

Mr Harris’s Fine Gael colleague Tony McLoughlin also expressed disappointment at the decision, saying price negotiations with the manufacturer “ must begin immediately”.