Rose Conway-Walsh (Mayo, Sinn Fein) | Oireachtas source

I am happy to have the opportunity to speak again about the families that have been impacted by valproate. As the Minister knows, Epilim continued to be prescribed to pregnant women, even though there was growing evidence that children of those mothers were being born with fatal valproate spectrum, FVS, disorder. This was a man-made rare disease. It was a preventable disease. Several international reports have noted the devastating birth defects relating to sodium valproate.

The guide to rare diseases in Ireland states that FVS is:

a range of devastating birth defects that can occur from the side effects of taking an anti-epilepsy or other drugs which contain valproic acid during pregnancy. Despite studies dating back to the 1980s ... governments ... were slow to act on overwhelming evidence of the side effects ... Progress on addressing this issue is thanks to the advocacy of [families led by] one Irish parent, Karen Keeley. Thanks to Karen and the patient advocacy group she founded, the Organisation for Anticonvulsant Syndrome, OACS, Ireland, ... there are now considerably heightened warnings about the dangers.

The long-awaited promised inquiry has been far too slow. I understand that a chair for this inquiry is now sought. It is imperative that there are no further delays and that the inquiry is comprehensive, with the families impacted being put front and centre. These families, some of whom have a number of children and adults with that condition, have suffered enough. These families deserve the truth regarding what people knew, when they knew it, and why, when there was mounting evidence, no one shouted “Stop”. These families have been harmed. They have had to endure a rare disease that was totally preventable.

I want to thank the Minister for at least agreeing to an inquiry. I know he understands how important it is that the inquiry gets up and running as quickly as possible, and that we find a suitable chair who will get to the truth and the bottom of this matter and who will be able to address the situation.

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