Epilepsy drug group takes campaign to Sanofi headquarters
Sanofi, based in Onslow Street in Guildford, produces sodium valproate which can lead to fetal anti-convulsant syndrome when taken during pregnancy
Campaigners visited Guildford on Saturday (February 15), calling for a drug company to take responsibility for the side effects caused by an epilepsy drug.
The visit marked the end of a week-long campaign, raising awareness of fetal anti-convulsant syndrome, which can be caused by sodium valproate.
Children with the syndrome may have a delay in developing speech and language, as well as difficulties with social interaction, memory and attention. Some can have other conditions such as spina bifida.
Janet Williams and Emma Murphy run a parental support group, FACSA, as well as the Independent Fetal Anti-Convulsant Trust (INFACT) which lobbies the government and drug companies.
As well as handing out flyers around the town, they visited the headquarters of Sanofi which produces sodium valproate, marketed as Epilim.
Mrs Williams said: “It has always been thought that this is a rare condition, even though as a support group we have continuously tried to push the fact that many more children are affected by this than the government and medical community accepts.
“This is more of an awareness week than anything.”
Sanofi puts patient information leaflets in with the drugs, explaining the dangers.
However, the drug was used from the mid-1970s and it was not until the mid-1990s that the warnings were given and INFACT is calling for companies to take responsibility for harm caused before then.
“What we have got to remember is that my sons have both got a form of autism because of this,” said Mrs Williams.
“Our concern, obviously, is what’s going to happen to the children when we are not around to help them.”
The campaign has been holding meetings with Care Minister Norman Lamb and representatives from the National Medical Association.
“What we are after now mainly is to try to get parents to contact the support group,” said Mrs Williams.
“We have a database and hopefully when we have a achieved what we hope to achieve, we use that to contact them.”
A Sanofi spokesman said a decision to use valproate in women of “child-bearing potential” should only be taken after a very careful evaluation between the patient and her treating physician.
“The appropriate treatment of epilepsy before and during pregnancy is highly complex, and uncontrolled seizures during pregnancy may pose substantial risks for the mother and the unborn child,” he said.
“Because of the well-known risk of birth defects, for a number of years valproate has not been recommended as a first-choice agent for women with epilepsy who are of child-bearing potential.
“As recommended by the manufacturer, women of child-bearing potential should be informed of the risks and benefits of the use of valproate during pregnancy.
“It is important to stress that stopping any anti-epileptic medications suddenly can lead to a recurrence of seizures which may be fatal.
“Therefore, Sanofi, in accordance with expert advice and the established medical opinion, urges patients to not make sudden changes to their treatment without first discussing them with their treating physician.”