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HSE conference to discuss pregnant women's use of epilepsy drug that is being compared to thalidomide

Epilim’s use by pregnant women has been restricted in recent years.

Image: Shutterstock/Have a nice day Photo

ISSUES SURROUNDING A medicine used to treat epilepsy and bipolar disorder by pregnant women will be heard at a conference in Dublin today.

The National Conference on the Consequences of Epilim will address a number of issues facing families, healthcare professionals and policy makers in relation to use of the drug sodium valporoate, also known as Epilim.

The drug first came into medical use in 1962, but its use by pregnant women has been restricted by the European Medicines Agency in recent years.

The agency became concerned after evidence emerged that there is an increased risk of disabilities to children exposed to the drug in the womb, a condition known as Foetal Valproate Syndrome.

Children who have the condition may develop physical problems, such as spina bifida, as well as developmental issues such as autism, ADHD, and autism spectrum disorder.

Although there is no reliable data for how many people in Ireland have the condition, the Health Service Executive has suggested that up to 1,200 people have been affected by it over the past 40 years.

“It’s a serious issue,” Peter Murphy, head of Epilepsy Ireland, tells TheJournal.ie.

“It has been compared to thalidomide back in the 1960s, and it’s currently part of review that’s ongoing in the UK regarding Valproate and three other products.

“They’re taking it very seriously there, and we’re looking for something similar here.”

Among the issues set to be discussed at today’s conference are the pharmaceutical makeup of the drug, how to reduce the risks associated with it, how to diagnose and manage foetal valproate syndrome, and how those with it live with the syndrome.

The conference will also look at who knew about the side effects of the drug on children exposed to it in the womb, and whether the problems with it were communicated to pregnant women effectively.

Murphy explains that in some cases, women were taking the drug before becoming pregnant and continued to take it during their pregnancy.

Murphy also says that individuals with Foetal Valproate Syndrome, many of whom are adults, often require a wide range of support systems, and that groups such as OACS Ireland have called for more services to become available.

Groups have also called upon Minister for Health Simon Harris to establish an inquiry to find out what happened that led to pregnant women being prescribed sodium valporoate and if there were risks involved in doing so.

However, today’s conference will just look to build on initiatives to do with risk reduction and the establishment of support services for those affected.

“It’s really about a conversation, about acknowledging the problem, and informing and educating people,” Murphy adds.

“Hopefully it’s something that leads to the next step, which is a need to look at this.

“There’s a lot of families involved, and they’re just looking for an explanation for what happened.”

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