The news that dozens of parents have been refused legal aid to fight for compensation over the damage a drug did to their unborn children brought back memories of the greatest scandal I ever reported on.
Almost 30 years ago I spent three months investigating epilim, which is also known as sodium valproate.
It had been hailed as a new wonder drug for epileptic sufferers and there was no doubt that it brought terrific benefits to many. Unfortunately, it had a side effect. It killed children.
When this allegation was brought to us (I was mainly working on the Paul Foot column on the Daily Mirror at the time) we found it hard to believe. But as I interviewed a number of parents whose children had been prescribed this drug and who then went into a state of collapse ending in their deaths, it became clear that - short of the most remarkable coincidence in medical history - epilim was not being properly monitored.
In this country, there were virtually no warnings given to GPs about it yet in America, the official encyclopaedia of drugs had more warnings about sodium valproate than almost anything.
When my story appeared in the Mirror, we were genuinely swamped with calls. I spent more than a month doing nothing but dealing with panicked readers. I had to explain that epilim was usually fine but there were certain symptoms they had to watch out for. I think we saved the life of at least one child.
Now epilim - produced and sold by a different drugs firm - is back in the headlines, this time for the effects it has - and which are admitted - on the unborn children of pregnant women.
Like the thalidomide scandal, the epilim saga is not only a series of catastrophic personal stories but an indication of the dangers in the relatonship between the drugs industry and doctors.
The advent of NICE should have gone some way to making new drugs safer for patients. But that doesn't help the victims of epilim.
I live and was born in Australia. My son Michael had a disease called Tuberous Sclerosis. It caused him severe epilepsy for which, among other drugs, he was prescribed Epilim. He died in 1994. How does it "kill children"?
ReplyDeleteI was NOT given epilim when pregnant.
Michael died of asphyxiation during a seizure. Can you substantiate your claims in our case as it is causing my son grave concern, right now.
Sincerely,
Anne