Cystic fibrosis drug costs are two-thirds of children's hospital build
The cystic fibrosis drug which has been rejected as "too expensive" should cost around €30,000 per patient annually - not the €160,000 demanded by its manufacturer, it has been claimed.
Dr Michael Barry, head of the centre which acts as watchdog for the cost-effectiveness of new medicines, believes it will be possible to negotiate down the price of the drug Orkambi.
He insisted that the drug - which around 500 people with cystic fibrosis are pleading with the HSE to fund - was currently too expensive.
It would cost roughly €400m over the course of five years - two thirds of the cost of building the new national children's hospital.
Health Minister Simon Harris yesterday pledged that price talks would continue with the drug's makers, Vertex.
He said people with cystic fibrosis who are on the drug and responding to it will continue to receive the medication.
"For patients on the drugs today - and I heard some patients are very concerned about the future provision of it - they will continue to receive that drug while the assessment goes on," he said.
Jillian McNulty, who has cystic fibrosis, said the drug, which she has been taking for three years, had transformed her life and reduced her hospital admissions.
Dr Barry said the evidence is that it gives modest improvement in breathing tests and cuts hospital admissions, along with the need for antibiotics.
Mr Harris said he hopes to set up a new system to drive down the costs of our national drugs bill.
"We spent €1.7bn last year providing drugs. When you take out the cost of staffing, it's one of the single biggest costs in our health service," he said.
"I want to talk to European health ministers later this month on this. I want to look at what we can do on a European-wide basis.
"I want to talk to them about what other countries do. We need to learn from each other on this."
The State is also facing huge bills for new cancer drugs - including Pembrolizumab, which costs around €70,000 annually per patient and has been recommended for approval by the HSE drugs group.
Meanwhile, the minister said he noted developments in Northern Ireland in relation to the lifting of the ban on gay men giving blood.
He said the board of the Irish Blood Transfusion Service will consider a report from its medical advisory committee at its June board meeting.
It will submit its recommendation on this issue to the Department following this meeting, he added.