Families affected by Epilim want inquiry to tell them when risks were first known
OACS Ireland co-founder Karen Keely and her sons Harry, Lorcan, and Lee, were among the families adversely affected by Epilim at the Department of Health yesterday for the announcement that Bríd O’Flaherty will chair the inquiry into the sodium valproate epilepsy drug. Picture: Colin Keegan
Families who gathered to mark the announcement of a chairwoman for the State’s inquiry into sodium valproate epilepsy medication say they want to learn when risks to children were first known.
The medication, sold in Ireland as Epilim, is an effective treatment for epilepsy. However, it is now known that, when taken during pregnancy it can cause birth defects, neurodevelopmental disorders, and autism in children exposed in the womb.
Barrister Bríd O’Flaherty was announced as chairwoman of the non-statutory inquiry by Health Minister Stephen Donnelly.
On Wednesday, children and parents who had been affected by the drug, together with supporters, walked together up the steps into the Department of Health, saying they were elated to have made it this far.
Long-time campaigner Theresa Byrne travelled from Wicklow with her daughter Ellie whose life was changed by this medication.
“We hope that at the very end of the inquiry the chairperson will find the answers and give us a good report and give us the answers,” Theresa said.
Ms Byrne is a member of the Organisation for Anti-Convulsant Syndrome, OACS Ireland. Founder Karen Keely’s three adult sons were affected by the drug.
“We’re here, we’ve done it,” she said, struggling to speak with emotion.
Use of the drug potentially harmed over 3,126 babies, based on previous HSE research into foetal valproate spectrum disorder (FVSD), she said.
She was involved in an inquiry in the UK which concluded in 2020.
“I’m elated,” she said. “I’m glad she’s picked, but if I’m thinking about the way the UK review went, it was a slow process.”
Ms Keely hopes “18 months at the most” could see this completed. She thanked Peter Murphy and Patrick McGeoghegan from Epilepsy Ireland who were “brilliant” in supporting them.
Health Minister Stephen Donnelly told the group he first learned about FVSD when Ms Keely addressed politicians in 2018.
“Today marks a significant step for those who have for years spoken out as a voice for their loved ones, for those who cannot use their own voices as a result of FVSD,” he said.
“I’m delighted to be able to honour the commitment I made to them when we first met, beginning with the appointment of the chair of the inquiry,” he said, adding that he expects work to begin “in a matter of weeks”.
Mr Donnelly told Senator Rose Conway-Walsh, who has long supported the families, that “more steps” can happen.
“If the report were to come back and find that there was negligence or carelessness, then we must absolutely be open to compensation — compensation can never turn back the clock,” he said.
The inquiry will develop a timeline around when scientific knowledge of the risks became known.
It will assess regulation of sodium valproate from first licensing to now.
Mr Donnelly expects a report to be published, with options for anonymity or confidentiality being provided.
Ms O’Flaherty will also assess the services provided to families affected.
