O’Brien disappointed by HSE refusal of CF drug Orkambi

​                 - Govt must negotiate with other countries to bulk-buy drug -

Fianna Fáil TD for Dublin Fingal, Darragh O’Brien has said that the decision by the HSE to reject the use of Orkambi due to cost implications is extremely both disheartening to people living with Cystic Fibrosis and short sighted from a health point of view.


Responding to recent media reports on the decision, Deputy O’Brien said, “Over the last year, CF sufferers have been waiting on this decision, and the news over the weekend will prove to be extremely painful for those who hoped to begin using Orkambi if approved.

“The facts are quite clear. Orkambi works. This drug has been approved by the EU Medicines Agency and proven to be of major benefit for cystic fibrosis sufferers. The clinical trials have shown that it can increase a person’s lifespan and also improve their quality of life.


“To learn that the government has rejected adding this game changing drug to the Long-Term Illness scheme for CF sufferers when lives have been significantly improved and saved, is deeply concerning.

“I have been campaigning for the drug to be approved since October 2015  and last month my party leader, Micheál Martin raised this issue in the Dáil. At the time, he provided an appropriate solution," he added.

“The HSE should look to immediately begin negotiations with health services in other countries in the EU, and elsewhere, to potentially club together and bulk-buy Orkambi at a lower price.

“The value of life and clear savings of treatment with this drug through the reduced need for acute care far out ways any monetary cost and therefore every effort should have been made to have this drug put on shelves in pharmacies nationwide.”