Fianna Fáil TD for Sligo-Leitrim Marc Mac Sharry says the Health Minister needs to stop stalling and ensure that Orkambi is made available to CF sufferers in Ireland. Deputy Mac Sharry says he’s appalled by Minister Simon Harris’s laid back approach to securing a deal with the company Vertex and has called on him to act without delay.
“CF sufferers and their families are extremely frustrated by the lack of progress on Orkambi. It’s more than 17 months since I first raised this issue and Orkambi has still not been made available. At the beginning of March Minister Harris claimed that a deal would be struck within weeks. It’s almost a month later and the Minister’s stony silence says it all”, said Deputy Mac Sharry.
“I have been in constant contact with Vertex, the makers of Orkambi, who say they are “perplexed” by the lack of correspondence or feedback from the Minister. In fact, they haven’t heard anything from Minister Harris, the HSE or the Department of Health since the 3rd February. I find it difficult to understand how the Minister plans to secure a deal “within weeks” when he hasn’t been in contact with the company in months.
“The deal that is currently on the table includes Orkambi, Kalidyco and a new breakthrough drug Tezacaftor/Ivacaftor, which have all proven effective in people suffering from CF. This was proposed by Vertex in early February but Minister Harris has still not signed up to it. Why is he delaying?
“With every week that passes, CF sufferers are becoming sicker. This is completely unnecessary when there is a clinically proven life-changing drug available. I am calling on Minister Harris to stop delaying on this important decision, to contact the company and secure a deal on Orkambi”.