HSE drug advisor says life-changing cystic fibrosis drug is “not value for money” It was reported yesterday that the HSE would not be financing the drug. 11,815 Views Monday 28 Nov 2016, 10:14 AM Short URL An excerpt from a campaign calling for Orkambi to be funded. 48 Comments By Cormac Fitzgerald http://jrnl.ie/3106228 Tweet thisShare on FacebookEmail this article Share356 Tweet Email THE HEAD OF the National Centre for Pharmacoeconomics (NCPE) has said that the cystic fibrosis drug Orkambi does not represent value for money and should not be funded by the Government at its current cost.Speaking today on RTÉ’s Morning Ireland, Professor Michael Barry of the NCPE said that Orkambi costs too much and wasn’t effective enough to be financed by the HSE.The NCPE advises the HSE’s drugs group on the economic viability of pharmaceutical medication.The news broke yesterday that the HSE was going to reject the use of Orkambi, a drug that has transformed the lives of some people with CF.The HSE has been in talks with the drug’s manufacturer, Vertex Pharmaceuticals, in a bid to reduce its cost, for several months.Yesterday the Sunday Business Post reported that the HSE’s drugs committee will recommend against funding the medication.In a letter to Philip Watt, CEO of CF Ireland, Health Minister Simon Harris yesterday said he has not yet received a decision from the HSE regarding Orkambi.Professor Michael Barry said today that that was also his understanding of the issue.“The HSE executive has to receive the recommendation from the drugs group and I know that the HSE executive hasn’t made a decision as to whether a drug will or will not be made available,” he said.However, Barry – who is also on the HSE’s drugs group – said that the group was sticking with its earlier recommendation that the drug “was not value for money”.He said Orkambi – which can greatly alleviate the symptoms of CF – was not value for money because of its “inherent efficacy”.He said the drug – which currently costs about €160,000 per patient per year – would only work for about 25% of patients.“You’re being asked to pay a really high price for a drug which won’t work in a lot of people,” he said. Nov 28th 2016, 10:14 AM We did say in our report that we felt the price would have to fall to about €30,000 per patient per year to render it value for money.Funding Barry said that ways around combatting the high price could include a “risk sharing” approach between the HSE and the drug manufacturer.This is where an agreement could be reached whereby every patient who needs the drug receives it and the HSE would pay in the cases where the drug is effective.Orkambi manufacturer Vertex said that it had engaged in a meaningful way with the HSE to try to reach a funding agreement, however Barry said this was not the case.“It’s true they’ve engaged. I think they could have engaged in a more meaningful way,” he said.I think to be honest we need to be very frank about this that Vertex needs to put patients first and the well-being of shareholders second.The expected HSE decision not to fund the drug has been met with strong criticism from CF support and advocacy groups.In a statement, CF Ireland said it “will fight this decision” and is “angry at the cynical way the HSE has conveyed this information to our patients, some of whom are very ill”.Barry said he believed the drug could be funded eventually but that Vertex “needed to come to the table” with a viable offer.Read: ‘Orkambi saved my life, other people should get access to it’Read: Cystic fibrosis patients ‘dismayed’ at decision to not fund life-changing drug An excerpt from a campaign calling for Orkambi to be funded.