Fianna Fáil TD for Sligo – Leitrim Marc MacSharry says Minister for Health Simon Harris needs to step up his effort to provide Orkambi under the Long Term Illness Scheme.

Deputy MacSharry said, “Minister Harris recently spoke of the need to allow for more space and time for his Department to negotiate a deal with the manufacturers of Orkambi. This is despite the fact that the Minister has had months to negotiate such a deal with no end in sight. People rightly suspect that Minister Harris is merely trying to deflect from tomorrows national protest by the families of children who urgently require Orkambi to improve their quality of life.

“Reports indicate that Vertex made a renewed proposal for the long term supply of Orkambi at a much lower price tag than is being acknowledged by the Government. This offer is reportedly includes the future provision of ground breaking medicines which are still in development. The proposal was submitted on January 15th and clarifications on the proposals were sought and replied to by Vertex over the following fortnight. However since February 3rd there has been no engagement by the HSE or other authorised State personnel with vertex regarding the provision of Orkambi. This is inexcusable.

“It’s simply unacceptable that these negotiations have stalled over the last month. Minister Harris has called for more time and space but there is little evidence that he has actually progressed the negotiations in recent weeks. This makes a mockery of his claims that this is a top priority for his department. The livelihood of children is on the line as the Minister procrastinates on what he should do next.

“The cynical pronouncements by Minister Harris regarding the need for additional space and time are disingenuous and false. It is wrong of him to claim that negotiations are entering a critical phase. These negotiations have been ongoing for months and months at this stage.

“Minister Harris needs to urgently outline whether or not the HSE Directorate has made a recommendation regarding these negotiations and if this is being considered by the cabinet. He also needs to set out a precise timeline for the next stage of these negotiations considering his request for space and time. A month has passed since a reasonable proposal has been made. It’s now decision time – the Minister needs to act.”