Orkambi has been heralded as a “wonder drug” for Cystic Fibrosis patients
The HSE will today enter the 'final stages' of talks to agree the price of a groundbreaking drug for treating Cystic Fibrosis.
Senior HSE managers are due to spend the rest of the week in negotiations on the cost of the drug.
Orkambi has been heralded as a “wonder drug” for Cystic Fibrosis (CF) patients – however it is currently unavailable in Ireland due to its price.
There are over 600 CF patients in Ireland – more than anywhere else in the world.
Before negotiations began the drug was expected to cost the exchequer €400m over five years.
Negotiations over the price have been ongoing for over nine months now and it has been reported that the HSE still has “significant challenges” with the deal on offer from the drug’s manufacturer – Vertex.
The Minister for Health, Simon Harris said he is hopeful that talks can wrap up this week, culminating in a good deal for the taxpayer.
“It is very important that Vertex step up to the plate as well,” he said. “If we go ahead and purchase this drug which I truly hope we will, it will be the most expensive drug we have ever purchased in the history of the state.”
“It is therefore absolutely important and right and proper that the Minister for Health and also the HSE would carry out all due diligence and would make sure that the arrangement in place is a really, really good arrangement for CF patients.”
Vertex has dropped its price since negotiations began – although the final deal will still impose significant costs on the exchequer.
The HSE is hopeful of securing a ten-year deal that will cover the cost of new CF medication as well as Orkambi and another drug Kalydeco.
Minister Harris will likely have to seek Cabinet approval for additional funding if agreement can be reached this week.
“What nobody wants to happen is have a situation where you would purchase a drug today to find out, in only a matter of months or a few short years, you would be back at the negotiating table again,” he said.
“CF patients have gone through too much anxiety and fear and I also have to make sure that we don’t have a pharma company extorting the taxpayer.
“We have got to get that balance right but I really do feel we are moving into the final stages.”
It has been reported that the HSE has not met with the company since early January with no contact between the two for 11 weeks as the State body considers the proposals currently on the table.
Vertex initially planned to charge the HSE €159,000 a year per patient for the ground-breaking drug.
The Taoiseach said the company was "ripping off" the Irish taxpayer with the HSE estimating approval would cost almost €400 million over five years.
Before the talks began, the HSE said it was willing to pay up to €75 million.
The company claimed it had already reduced the price as it attempted to recoup a significant portion of the €9bn spent developing the drug.
Following the negotiations the company is now believed to have dropped its asking price to approximately €100,000 per patient.