A well-known Donegal health campaigner says anyone needing the breakthrough Cystic Fibrosis drug “Orkambi” should receive it.
Brendan McLaughlin, from Ballybofey, who is Ireland’s longest-surviving lung transplant patient, says the drug should be made available despite recent reports that that it was likely the drug will not be funded by the HSE due to its cost.
“It should be got. It is the same with any disease. It is hard enough to fight disease but it is worse when you have to fight for your drugs as well. That is not a good situation,” he told the Donegal Democrat.
“The people that need it should get it because in the long run the are saving money. People will need less hospitalisation. Anyone that has worked with it has seen a vast improvement in their condition,” he said.
“It does not work for everyone. That is understandable as it is designed for a certain genetic code
Reports at the weekend stated that the Government had “considered unjustifiably expensive and not sufficiently cost effective” by both the National Centre for Pharmacoeconomics (NCPE) and the HSE drugs committee.
The Sunday Business Post reported that a formal announcement by the HSE was imminent after its drugs committee recommended against funding Orkambi at a recent meeting after concluded that the drug did not deliver sufficient benefits to patients to justify its annual price tag of €159,000.
On Tuesday Health Minister Simon Harris TD said on Tuesday that he had written to the Health Ministers in England, Scotland, Canada and Australia asking them to collaborate to try and make progress on accessing Orkambi at a cost effective price for cystic fibrosis patients in each of their countries.
No decision has been taken to reimburse the treatment in any of these countries to date.