Women should be informed of the risk of sodium valproate to unborn babies | Letters

As a doctor trained in obstetrics and gynecology, I read with interest and then dismay your article about the families affected by sodium valproate (The mothers fight a scandal bigger than thalidomide: ‘We were told the drug was safe’, February 22). While it is clearly tragic that these women were not effectively counseled about the potential dangers of their medication regimen to their unborn children, it cannot be ignored that valproate can provide a life-saving or life-enhancing treatment option for some patients with epilepsy.

Media reporting that fails to recognize this risks causing further damage by presenting only one side of the story. Current guidelines state that valproate should never be the first-line treatment for women of childbearing age, but it remains a highly effective antiepileptic drug, and in difficult cases it may provide a safer alternative to polypharmacy (itself associated with a more even risk). greater risk of birth defects – 16.8 per 100, compared to 10.7 per 100 for valproate or 2.3 per 100 for the background population), or poor seizure control.

Women with epilepsy have a tenfold increased risk of mortality during pregnancy, and suddenly stopping or changing medications carries the risk of escalating symptoms, with potentially fatal or disabling consequences. Women need to get all the information available and see how it relates to their own case, but this will only be possible with adequate access to epilepsy services, good communication between primary and secondary care providers and – ideally – pre-pregnancy and family counselling. schedule.
Dr. Ellis Rea
Edinburgh

In 2009 I stopped working in a fertility clinic. Years before, it was our standard practice to ask the primary care physicians of all our patients with epilepsy to change their medications from sodium valproate to something else because of the risk of teratogenesis. Why are babies still being born affected by the drug when the information has been common knowledge for over 25 years?

Drug company Sanofi says it cannot change the information it provides to patients without permission from health authorities in the country where the drug is prescribed. Why is it that the Committee on the Safety of Medicines decided not to alert patients because the “risk was low” and did not want to alert patients without regular assessments to determine what the risks were?

Presented with irrefutable evidence of the harm caused by the government agency, the refusal to admit liability and provide compensation is yet another example of this shameful government dodging responsibility for its actions.
Dr. Barbara Skew
Clevedon, Somerset

My heart goes out to these women and all those affected by such a colossal miscarriage of justice.

When I was 12, I was diagnosed with epilepsy. After being prescribed a variety of medications to control my seizures (I was having 40-50 a day at the time), I was prescribed sodium valproate (Epilim) in combination with clobazam (a drug). medication of the benzodiazepine class).

In 1996 I became pregnant while studying. It wasn’t planned. I visited my doctor at the time, who told me that there was a good chance that any child I had while on the medication would be born with a severe disability. I have made the difficult decision to quit.

In the early 2000s, against the advice of my then GP, ​​I decided to stop taking the medication. I no longer suffered from seizures and, armed with the information I received from my doctor in the mid-1990s, I wanted to reduce the potential risks for future pregnancies.

I was lucky. At a crucial point, I had had a doctor who was aware of the health risks associated with children being exposed to Epilim in the womb. This knowledge enabled me to make informed decisions. I now have a healthy 11 year old daughter.

I wish I could remember the name of the GP at Gayton Road Health Center in 1996. I am forever indebted to her.
Name and address provided

Our son was diagnosed with epilepsy at the age of seven and took valproate for several years before (hopefully) switching to a safer alternative. But I now worry about the effects of valproate during those years of intense growth and development. Like any parent with a child on long-term medication, you hope that the benefits outweigh the possible disadvantages.

What I would really like to discuss here is the general lack of investment and understanding of epilepsy. It is one of the most common childhood diseases, approximately 0.6% of children were diagnosed compared to 0.3% for diabetes or 0.03% for cancer. Throughout their lives, people with epilepsy are more likely to suffer from depression, suicide, disability, discrimination and sudden unexpected deaths.

Yet new medications and treatments for epilepsy are slow to emerge. Funding for epilepsy treatment has been at the bottom of the barrel for years. This lack of interest from both the pharmaceutical industry and government policies around funding has allowed valproate’s current situation to emerge. There is more support for funding for rare diseases than for epilepsy, for which funding has been declining for years.

It is such a shame that it has taken so long for valproate victims to be recognized. Hopefully a good thing will emerge: more funding for safer epilepsy treatments.
Willemien Schürer
London