NCPE chief under fire for his 'cost-effectiveness' comment on life-saving drugs 

Michael Barry made his comments after a review into the approval of new medicines was announced — in the wake of Craig Coady's plea for Friedreich’s ataxia drug

Prof Michael Barry, the clinical director for the National Centre for Pharmacoeconomics (NCPE), made his 'value for money' comment on RTÉ on Sunday. File picture: Shane O'Neill/Coalesce

Comments by the head of the committee that recommends to the HSE whether new drugs should be approved or not, about survival rates versus cost effectiveness, were "inappropriate" and caused "disgust" among campaigners, an Oireachtas committee has heard.

Director of the National Centre for Pharmacoeconomics (NCPE) Professor Michael Barry told RTÉ Radio 1's This Week on Sunday that he is opposed to early access to a new drug on a cost-effectiveness basis.

Health minister Jennifer Carroll MacNeill earlier this month announced a review into how new medicines are approved here. 

It came after the 'Irish Examiner' reported the case of Craig Coady, whose son Paudie lives with the devastating disease Friedreich’s ataxia and has campaigned publicly for access to a drug called Skyclarys Mr Coady also spoke to Deirdre O’Shaughnessy for her Irish Examiner podcast.

He has already lost one son, Rory, to the disease, aged just 13.

The 'Irish Examiner' reported the case of Craig Coady who has lost his younger son, Rory, left, and who now fears for the health of Paudie, right. Picture courtesy of the Coady family

Families of children with Duchenne muscular dystrophy also protested for access to a medicine called Givinostat. This was only recommended for reimbursement two weeks ago.

Prof Barry had told Paul Cunningham in his RTÉ interview that an early access scheme for drugs would add €1bn to the drugs budget in approximately five years. He said: 

I would argue that because these drugs are very high cost, because they come with a very significant budget impact, they should be assessed for value for money. 

"These drugs are very expensive," he said.

"None of them improved overall survival. And we got an improvement in the quality of life of 16%. When it comes to cancer drugs...less than 50% will improve overall survival. Early access to drugs that don't work very well is not a very good way of spending taxpayers' money in my view," he said.

Speaking at the Oireachtas Health Committee, Cork North Central TD Pádraig O'Sullivan questioned whether it was appropriate for Prof Barry to have given an interview which appeared to depart from the aims of the Government.

"The program for government commitment is to have an early access scheme; it's quite clear that the minister is pushing in that direction, and she has repeatedly said so in the chamber, but for some reason, a member of the NCPE thought it was okay to go on the national radio and basically comment about how he himself is against an early access scheme.

Craig Coady speaking with Deirdre O’Shaughnessy for her 'Irish Examiner' podcast about Craig's campaign for access to treatment for those living with the rare disease Friedrich's ataxia. Picture: Chani Anderson

"How do we marry those two things when a minister clearly is pushing one way and a civil servant is going on the airways, saying something contradictory?

"Is it appropriate that a civil servant will be going on the airwaves, contradicting what the minister has clearly stated as her objective?"

Mr O'Sullivan said that patient groups had felt "disgust" at Prof Barry's intervention.

Niall Redmond, Assistant Secretary at the Department of Health, said that Prof Barry was "giving his independent view, independent of the Department" as part of a "wide-ranging" interview, while Dr Colm Henry, the HSE's chief clinical officer, said that the NCPE takes submissions from advocacy groups "seriously".

• Paul Hosford, Deputy Political Editor