Former health minister warns Harris over Orkambi dispute

Dr James Reilly said the ability to overrule a recommendation to not pay for the drug could leave Minster Harris in a “dangerous place”

Former health minister warns Harris over Orkambi dispute

Children's Minister James Reilly | Image:

Former Health Minister James Reilly has said intervening in a dispute over the price of a ground-breaking Cystic Fibroses drug could the current minister in a "dangerous" position.

The state's medicines watchdog - the National Centre for Pharmacoeconomics (NCPE) - believes 'Orkambi' is too expensive.

The drug costs the HSE €159,000 per patient annually - a price the watchdog has deemed too high when compared to the benefits the drug provides to patients.

Cystic Fibrosis Ireland has expressed its “dismay and opposition” at a decision it said will affect 550 patients in Ireland.

The Minister for Health, Simon Harris said he fully supports HSE attempts to lower the “exorbitant price” pharmaceutical company Vertex is demanding for the drug.

He has written to his colleagues in other countries, calling for a joint approach to try and get the drug at a more affordable price.

Speaking as part of a Newstalk’s Talking Point panel on the issue, Senator Reilly said the ability to overrule the NCPE recommendation to not pay for the drug could leave Minster Harris in a “dangerous place.”

"I think it’s a dangerous place to be, because you’re going to be accused of playing God basically,” he said.

“You’re going to be making decisions around drugs that can be the difference between longevity and a very short life in certain instances,” he said.

While Minister for Health, Senator Reilly overruled a similar recommendation from the NCPE in relation to another drug from the same company, Vertex.

However, he said the circumstances were different as Orkambi only works in a percentage of those treated - while the previous drug, Kalydeco worked in an “absolute fashion.”

He said the company eventually dropped the price of the drug from €234,000 per patient to €80,000 and insisted the decision to purchase was taken based on efficient public spending practices rather than as a result of emotional pressure from patients.

“I believed that it was the right decision to make and I still believe that and I believe that it has improved the lives of many, many patients,” he said.

“I think it’s most unfortunate that we find ourselves with Vertex, in the situation we’re in.

“They’ve developed this wonder drug; they say it’s a wonder drug, and it is for some people, and yet we’re now in a very adversarial sort of situation with them because they seek to have a price that’s frankly just not feasible.”

He said the current price being quoted for Orkambi equates to half the cost of a new paediatric hospital over five years and buying the drug would mean cutting resources in other parts of the health service. 

Michael Barry, head professor of the National Centre for Pharmacoeconomics criticised Vertex for the price of the drug

“I think it’s time that they put patients first and that they put profits and shareholders second,” he said.