Make ‘miracle’ CF drug freely available

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A Galway TD has called for a drug which can transform the lives of people with cystic fibrosis to be made available under the drugs repayment scheme and to people with medical cards.
Independent Deputy Noel Grealish raised the issue of the availability of the drug Orkambi in a Parliamentary Question he tabled for the Minister for Health, “given its life-changing impact on sufferers”.
He said this week that the HSE and the current government could give no better start to the new year for people with cystic fibrosis than making freely available such a drug.
“You only have to spend two minutes with some of the 79 children and adults who attend the cystic fibrosis unit at University Hospital Galway, or their parents, to realise how challenging their days can be.
“But at least half of them could have their lives completely changed by what has been described as this ‘miracle drug’.
“I know it is expensive but we have to give priority in our spending to where it can make a big difference and this is certainly one example,” added Deputy Grealish.
And at least some of the cost — estimated at €160,000 a year per patient — would be recouped in the reduction in hospital admissions the use of Orkambi would bring about, the Galway West TD said.
Replying to Deputy Grealish’s Parliamentary Question, Kathleen Lynch, Minister of State at the Department of Health, said that the decisions on which medicines are reimbursed by the taxpayer are made on objective, scientific and economic grounds by the HSE on the advice of the National Centre for Pharmacoeconomics. They were not political or ministerial decisions.
She said that Vertex Pharmaceuticals, the manufacturer of Orkambi, submitted a Rapid Review application for the drug to the NCPE on November 26. The company was expected to submit a full pricing and reimbursement application to the HSE/Primary Care Reimbursement Service in the immediate future.
“Once this application is received, it will be considered by the HSE in line with criteria set out in the Health (Pricing and Supply of Medical Goods) Act 2013 and using the processes outlined in national pricing framework agreements,” addd Minister Lynch.