In a newly released video, shot at TEDxBrussels on October 28th, Lode Dewulf offers a rallying call for change in the area of pregnancy and medical treatment. Dewulf, who has 25 years of pharmaceutical medical experience, told the audience, “Throughout the world, pregnant women are denied their basic rights simply because they are pregnant.”
With recent statistics revealing that 90% of pregnant women do, in fact, take medicine during their pregnancy, Dewulf called for debate to open up, research to be instigated, existing data to be mined and attitudes to be checked. Dewulf concluded that we need to establish pregnancy health rights: the right to care; the right to make an informed decision; the right to benefit from scientific progress.
Read the full transcript of Dewulf’s TEDxBrussels talk below.
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“Have you ever wondered what the most impactful decision is that you can make about children?
The must impactful decision you can make about children is to have them. And, in this room, we are all proof of that because we wouldn’t be here if our parents didn’t make that decision some time ago. So, if you ever get stuck reading existential and philosophical literature and you don’t know a way out, blame your parents!
The medical answer to why we exist is simple: blame your parents. And it’s because this decision is so important, including its dimension as to when to have children, how many, and with whom, that it should really be a free decision. Many of us take this for granted but it isn’t yet granted all around the world.
Fortunately, very great work is being done to make this free decision to become pregnant or not a universal right, and medicine has been a great enabler and supporter of that quest. Because, of course, medicine has given us the tools to prevent or delay pregnancy with contraception, even to terminate it, but also to help couples conceive when there are natural obstacles. So medicine is really a true enabler but, today, I want to shift focus to a neglected area. I want to shift focus from the right to be and to become pregnant, to the rights of the pregnant. Because there, I am afraid to say, we are leaving millions and millions of women and families behind.
Let me give you a simple example. Earlier this year, a colleague of mine was six months pregnant when she developed an abscess on her tooth in her jaw. She went to see her dentist, and her dentist refused to treat her. He said “Because you are pregnant, I cannot give you an antibiotic to cure it. I cannot give you a pain killer to comfort you, and I cannot use a local anaesthetic to open it. Sorry I can’t help you”.
In agony, she went to see another dentist and got exactly the same refusal. And after two more days of pain and fear, she actually found herself in the emergency ward of the local hospital, because by now the abscess had grown so big it was about to break open into her bloodstream, thereby endangering the life of her unborn child and potentially her own.
This is just one of thousands of example of how, throughout the world, medicine is denying pregnant women their basic rights simply because they are pregnant. And the cause is quite simple. The cause is that most medicines are contra-indicated during pregnancy and so we like to not use them but here lays the biggest issue: medicine taken during pregnancy is not rare.
In fact, the most recent statistics coming from USA say that up to 90% (9 out of 10) of all women take medicine during their pregnancy. Not vitamins and supplements; medicines. And not just one, but an average of three to four medicines during pregnancy, not the whole time but enough to be registered. So we have this huge contradiction that we need to solve.
When I first heard this number, 90%, I was absolutely shocked because as a physician I had never thought of that, certainly not being that frequent, and I wanted to understand why. And actually, when you start looking at it, there are two main reasons: first of all, pregnant women get sick and secondly, and increasingly so, the sick become pregnant.
Let me explain. Pregnant women get sick for two reasons. First of all, of course they are pregnant, and the pregnancy can induce symptoms that can became so bothersome that you need some form of relief. Or there could be an unfortunate case of complication that is so dangerous for mother and child that something needs to be done.
But the number one reason pregnant women actually get sick is life. Because no matter how blissful the state of pregnancy – because it’s not a disease – it doesn’t protect you from the hazards of life, like, for example, the tooth abscess. As a pregnant woman, you can still get an infection, you can still have an accident, at home or in traffic, and you can still have something like cancer happen to you.
In fact, and this was another shocker: one in every thousand women is diagnosed with cancer during her pregnancy. Not before, not after, but during. One in every thousand and you know we doctors have been telling them, “Look, we can’t give you an oncological drug because you are pregnant so either you have to abort your baby or you hang on to it until we can do a very early elective caesarean and then we’ll treat your cancer.” Just imagine the horror of that.
Now, the second reason, as I said, and this is probably an even less known group, is the sick who increasingly become pregnant. And why is that? Well, we’re getting older, in general but also the time we conceive. In many countries around the world the average age of the first pregnancy is now thirty or more. I know for a fact that my wife and I were in our mid-thirties when we got our first child. And you see this everywhere.
And as you get older, you simply have, by nature, a bigger chance of having developed a disease or chronic condition. And meanwhile medicine has gotten better at earlier diagnoses of these conditions. And we also learned that for most of these chronic conditions the earlier you treat, the better the long-term outcome.
Think of diabetes, hypertension, all of that. So not only are you, because you are older, more likely to have a disease on board while you are pregnant, it’s more likely to have been diagnosed and treated. Today already one in four women enters pregnancy on top of a chronic condition. And this can only go up as we continue to get older.
2012 data, again from the US, shows almost 10% of pregnant women had a diagnosis of hypertension before they got pregnant, another 10% had the diagnosis of diabetes before they got pregnant and another 12% a diagnosis of depression. And that’s just three diseases.
A last group of sick to become pregnant is the ‘survivors’. What do I mean with that? When I was in secondary school I had a friend called Alex. And one Monday, Alex didn’t come to school. The teacher explained that Alex would be out for a while because doctors had found a spot on a bone in his leg. Unfortunately, my friend Alex never came back because he died of a bone cancer. And in that same year, another boy from another class died of leukemia. Those diseases used to be almost always lethal just a few decades ago and now most people survive. They survive often due to the use of very powerful drugs and sometimes they need to take those drugs for the rest of their lives, but they are surviving, they’re reaching adulthood and they’re reaching the time when they want to start a family. And we doctors know very little about what it means for their capacity to do so.
So with 90% of women taking drugs during their pregnancy we really need to change their current behavior, which is one of inconsistency and avoidance. There are many good initiatives but they don’t reach the women who are pregnant and I believe doing three things can solve this issue, which is one of global nature and which affects all of us.
The first is, we need to create awareness, starting today. I want you to go out and talk about this problem because it’s so big and it’s everywhere and it needs to be entered on the agenda of public discussion, public health and research. We are only going to do that by creating awareness and we also need to do much more with the data that is already out there, the knowledge, because there are good initiatives but somehow, like somebody already said, this insight gets stuck in medical journals and never gets to the women and their doctors who actually need to make those decisions.
And I’m really pleased to announce an initiative that’s been started this year. Earlier this year, some people here at TEDx Brussels, when they heard about this problem, decided they wouldn’t remain passive and they created a charity called PREGNANCY TABOOS. The primary purpose is to create global awareness and I am very happy with that.
Now, the second thing we need to do is to learn more from the data that is already out there, and that we are not currently tapping. If you just think about big hospitals and insurance companies, they started putting our data into their data banks about a decade, if not two decades ago. They are currently sitting on millions of records of people and many of those got pregnant so we could go in and check if there was a disease, if the medication was taken, what it meant for the pregnancy.
But we are not doing it, because it’s not a research priority right now. And it needs to be. And a special plea goes to the producers of mobile apps. They are coming by the hundreds. There are already more than 40.000 health apps and many of us already have them on our mobile phone. It’s estimated that everyday a quarter million pregnant women in the US alone self-track their pregnancy by entering data in their mobile app.
Unfortunately, these mobile apps are not set up to capture data, let alone to share and or analyse it. But just imagine, if we could only know about 10% of that quarter million, that would be the single biggest study ever done on the topic and we would know much more than we know today.
And the last thing we need to do is to really raise standards of research. We need to have the difficult discussion about ethics. Why do pregnant women have to be excluded from clinical research, systematically? What is the best way to measure and for how long should you measure something? And the baby, how long you should follow-up?
Again, a very good initiative has started this year. The Drug Information Agency, which is a neutral, global not for profit organization, has taken this issue to heart and has committed to be the neutral platform where all the stakeholders can come together and discuss.
I strongly believe that these actions will really do something that hasn’t happened for a half century. It will break the gridlock and address this taboo. If we can have awareness, if we can learn more from the data we have and if we can do better science – because there will always be new drugs, always be new questions – then we will finally be able to establish the rights of the pregnant.
And those rights are: number one, the right to care; number two, the right to informed decisions; and number 3, to benefit from the progress of science.
So please, stand up, join me in this quest. Thank you!”