A woman whose son was born with a form of autism as a result of taking an anti-epilepsy drug has given evidence to a European-wide safety review in London.
Joanne Cozens, from Caerphilly, is the chairwoman of the Organisation for Anti-Convulsant Syndromes, and spoke at the European Medicines Agency hearing on Tuesday, September 26.
The agency is investigating whether warnings about the potential risks and side effects of taking sodium valproate are strong enough.
Joanne, whose son Thomas has Asperger’s syndrome, claims she was not properly informed about the risks of taking the medication while pregnant.
Speaking to the BBC, she said: “I was told when I went to see my consultant neurologist that I had a 1-2% chance of having a baby with spina bifida.
“If I’d have had informed choice, I would have stopped taking my medication because my epilepsy is fairly controlled.”
Babies have a 10% risk of physical abnormalities and a 40% risk of developing autism, low IQ and learning disabilities if exposed to sodium valproate in the womb, according to the Medicines and Healthcare Products Regulatory Agency (MHRA).
The latest advice from the MHRA, dated February 2016, states it should not be prescribed to “women of childbearing potential or pregnant women unless other treatments are ineffective or not tolerated.”
Sodium valproate is usually prescribed for epilepsy, migraine and bipolar disorder, and warnings were added to the outside of packets last year.
However, campaigners estimate around 20,000 children in the UK have been harmed by sodium valproate medicines since 1970.
Joanne added: “We all feel guilty because of the medication we took when pregnant.
“We all live day-to-day, we all feel guilty because of the medication that we took while we were pregnant.
“It’s vital the message gets across to the government, we need a public inquiry to get to the bottom of it and stop more families being affected.”
Clare Pelham, chief executive at Epilepsy Society, said: “This is a very simple and straightforward ask of the government.
“No additional funding is required for the NHS. All we are asking is that doctors and nurses have a yearly conversation with women and girls who are taking sodium valproate, to make absolutely certain they are aware of the risks associated with the drug during pregnancy.
“We know that for some women, sodium valproate will be the only drug that controls their seizures and they must carefully weigh the benefits against the risks.
“But what is unforgiveable is for women not to be informed of those risks.
“They must be able to make an informed choice about their treatment in conjunction with their doctor.”