It's not straightforward
Last week I did an interview that lasted 5 hours, just me, talking. I had plenty more to say. My conversations with other campaigners rarely go on for less than an hour and some have gone on for 3 or 4 hours, when we get into detail. The reason for this is that it's just not straightforward. Valproate isn't just a drug, for me it's come to symbolise all that's wrong with the structures that surround our healthcare system. There's a lot to talk about.
Since I started campaigning in 2001, albeit on and off between court cases and private troubles, I've found my interests and research moving between the many issues that led us to be here. Big pharma, regulators, government, the justice system all played their part but the less obvious issues behind the failures were of most interest to me. Issues around disability, reproductive rights, medical paternalism, research bias and information gaps.
The names of my social media IDs have changed accordingly, as I found out more about what caused my daughter's disabilities. At first it was about resolving the problem for myself - trying to understand what was wrong and trying to get help, and after being referred by the hospital to the AVMA, then signposted to Contact-a-family, I found National Fetal Anticonvulsant Syndrome Association, now OACS Charity. We had a diagnosis of fetal anticonvulsant syndrome - but are all anticonvulsants involved or is it just valproate? Is it a syndrome or a spectrum disorder? The first Facebook group was called Justice for FACS Kids after we lost legal aid funding for our court battle against Sanofi, named the FAC Litigation. After the group action ended, other groups developed, INFACT, FACT, FACSA, FACSAWARE. But I wasn't happy with the term FACS because my problem was with valproate so I decided to be specific about Valproate and named my group Valproate Victims.
But what were we victims of? And who was the victim - us or our children? We discovered over time that valproate has, and always did have, a way-out-of-the-league risk ratio compared to other anticonvulsants so it became clearer that we were victims not just of the justice system but of the healthcare system as well. Now other drugs are emerging that have teratogenic effects that we didn't know about and the name might change again. All hail to OACS Charity who have steadfastly kept their name the same for 25 years. In the end it makes very little difference what you're called as long as you get the job done.
The word victims is associated with weakness and survivors signifies empowerment so I renamed my twitter account Valproate Survivors. But this is more than a description of personal character. The child exposed to valproate is in terms of their biology, a survivor. I found research showing that the newborn baby carries a higher level of valproate than the mother, a drug that can no longer be used for infants because of its high risk of causing liver failure. In lab studies, the resorption rate of the foetus is sky high, and it's very possible that our children are lucky to have been born at all. This excludes the numbers of foetuses affected by such deformities that they are terminated. The miscarriage rates are only just starting to be counted. These are some of the many darker facts that I've stumbled on, and that continue to emerge.
Which leads me into the more recent name change, pharmaconsent - the issue of consent to treatment has slowly presented itself over the years. The information presented to me, to all of us, before, during or after pregnancy have been at best a hint of the extreme harms and dangers involved, leaving us unable to give fully informed consent to treatment. Consent is an essential part of our human rights, if you do something to someone without their consent it's assault, or rape, or theft, or fraud, or murder depending on the circumstances. And that's why I'm still here - because you can't walk over someone's rights and turn around and say it was a mistake, or that it was someone else's fault that you took their right away. It was a systemic problem for sure, and many organisations played their part - or failed to play the part they should have.
So at present I have 28 themes on the go, that buffet around and between the issues that valproate throws at us, which I shall continue to unpick. I hope the details will be elaborated on by academics who can maybe at least get paid for doing it.