'What price do you put on your children's life expectancy?'

A Cavan parent of a Cystic Fibrosis sufferer says that the decision by the Health Service Executive (HSE) to reject the 'game-changing’ drug Orkambi is deflating, but not the end, writes Thomas Lyons.
Linda and Ronan Whitmarsh’s son Finn (aged two) has CF and they are watching with interest to see how the negotiations between the manufacturer of the drug and the Irish health authority play out.
A leaked report from the HSE on Saturday night suggested that they are to declare the drug is “unjustifiably expensive”. They Irish health authority say they are disappointed with the level of meaningful engagement with the manufacturer of the drug Orkambi in lowering its price for Cystic Fibrosis patients.
The HSE and Vertex Pharmaceuticals entered price negotiations after the National Centre for Pharmacoeconomics found Orkambi was not value for money in the treatment of the condition. The HSE say that the price would have to fall from €160,000 to approximately €30,000 per patient per year to ensure value for money.
Nurses by profession, the Whitmarshes are aware that their own son won’t be able to go on the drug until he’s a little older but want to ensure that it is immediately available to Finn when the time comes.
Ronan is the chairperson of the Parents of Children with Cystic Fibrosis and tomorrow (Thursday), December 1, the group will give a presentation in the Dáil on this issue.

No more hiding
Speaking to The Anglo-Celt Linda said: “In a way it was a relief. Minister Harris has been hiding behind the negotiations to avoid making a decision. He is no longer in a place where he can do that.”
This is not the first time CF medication has been the subject of such discussions. Kalydeco is a drug used to treat Cystic Fibrosis in people with certain mutations. The mutation account for 10% cases of CF sufferers. It went through a similar negotiations process before the then Health Minister, James Reilly, approved it.
Linda says that, as a mother, the unknown is the most difficult thing. “We don’t know what is taking place in the negotiations. We are hoping that they are using the 96-week study to inform their decision, as the previous 26-week study is not as comprehensive. This drug adds longevity to those it treats. What price do you put on our children’s life expectancy? Every CF sufferer has an expiration date on their head that can only be removed by drugs like Orkambi. We have to hope that Minister Harris will do what Minister Reilly did in the past.”
In a correspondence with the Minister, the head of Cystic Fibrosis Ireland, Philip Watt, said that many families are devastated by the news to refuse funding of Orkambi. “The HSE have been very disrespectful in the way that this has been conveyed to our patients through an apparently cynical leak to a Sunday newspaper.”
He called on the Minister to expedite the reimbursement of Orkambi asap. In a reply, Minister Harris said that he was “annoyed and upset that details seemed to leak regarding these discussions”. He said that he had not yet received a decision from the HSE Directorate regarding Orkambi.
He said that the HSE has not concluded its assessment but that he supports its attempts to lower “the exorbitant price” the company is seeking.