Anne Rabbitte (Galway East, Fianna Fail) | Oireachtas source

I thank the Deputy for raising this important issue. I certainly will bring this back to the Minister. It is unfortunate that Vertex reneged on its commitment and agreement. It is highly frustrating for the Government and for the HSE to be in this particular position. There are 35 families possibly looking in here this morning and looking for hope. I hope that when the Minister meets with the CEO, with the clinical experts and with the patient representatives, there will be a positive outcome from the meeting. It is unfortunate that when one hears of a drug company reneging on their ten-year agreement, it puts other rare diseases at risk. It is important also to ensure that Mazars' report is published, which was our report. This review into how we do business on the licensing and funding of rare drugs is such an important piece in protecting and ensuring that people have access to rare drugs. This is why that relationship cannot be undermined and cannot break down. There must be a positive relationship between the HSE, the Government, and the drug companies to ensure that people and children who get rare diseases have access to drugs in a timely fashion. I will bring this issue back to the Minister.

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