EXCLUSIVE. Government commits to reviewing new evidence in Primodos scandal for first time.
Families who believe miscarriages and devastating birth defects were caused by the NHS-prescribed pregnancy test Primados say it's a fantastic positive that the British government has told this programme it is "committed to reviewing all new evidence on hormone pregnancy tests and adverse effects in pregnancy."
The Government and pharmaceutical company Bayer have been accused of bullying the campaigners into silence, by threatening that, unless they commit to never making another claim, they will have to pay the legal bills of the lawyers used to block their joint action.
Marie Lyons took the oral hormone pregnancy test in 1970. Her daughter was born with a badly deformed arm. But the potential risks of the damage to unborn babies had been raised by medical professionals years earlier.
In our enlightening talk with Marie, an advocate from the Association for Children Damaged by Oral Hormone Pregnancy Tests, we trace the timeline of events that began with the introduction of Primados in 1958. We hear Marie's poignant recollections of her daughter Sarah's struggles during her schooling years and in relationships due to her disability.
Marie discusses the Association's High Court battle and how the Government and Bayer filled the court with teams of legal experts, dwarfing their representation. Fifty years since she started her campaign for justice, Marie remains determined to uncover new evidence to prove her case. We hear statements from the Department of Health and Social Care and Bayer who maintain their denial of any link between HPTS and foetal harm. They were invited to take part in the discussion but declined.
In the final segment of our talk with Marie, we expose the devastating consequences of the drug company's decision to unlawfully distribute the drug in nations where abortion is illegal. Hear Marie's fears for her daughter's future health, the distressing tales of other association members, and the complexities of estimating the number of people affected. As we ponder the heated debate in Parliament and Theresa May's actions post-reading the expert working group's report, Marie stresses the need for an independent review of the MHRA and funding for an independent review of synthetic hormones. Her message is clear and uncompromising: the quest for justice and safety in healthcare is a fight that's far from over.
EXCLUSIVE. Government commits to reviewing new evidence in Primodos scandal for first time.
Families who believe miscarriages and devastating birth defects were caused by the NHS-prescribed pregnancy test Primados say it's a fantastic positive that the British government has told this programme it is "committed to reviewing all new evidence on hormone pregnancy tests and adverse effects in pregnancy."
The Government and pharmaceutical company Bayer have been accused of bullying the campaigners into silence, by threatening that, unless they commit to never making another claim, they will have to pay the legal bills of the lawyers used to block their joint action.
Marie Lyons took the oral hormone pregnancy test in 1970. Her daughter was born with a badly deformed arm. But the potential risks of the damage to unborn babies had been raised by medical professionals years earlier.
In our enlightening talk with Marie, an advocate from the Association for Children Damaged by Oral Hormone Pregnancy Tests, we trace the timeline of events that began with the introduction of Primados in 1958. We hear Marie's poignant recollections of her daughter Sarah's struggles during her schooling years and in relationships due to her disability.
Marie discusses the Association's High Court battle and how the Government and Bayer filled the court with teams of legal experts, dwarfing their representation. Fifty years since she started her campaign for justice, Marie remains determined to uncover new evidence to prove her case. We hear statements from the Department of Health and Social Care and Bayer who maintain their denial of any link between HPTS and foetal harm. They were invited to take part in the discussion but declined.
In the final segment of our talk with Marie, we expose the devastating consequences of the drug company's decision to unlawfully distribute the drug in nations where abortion is illegal. Hear Marie's fears for her daughter's future health, the distressing tales of other association members, and the complexities of estimating the number of people affected. As we ponder the heated debate in Parliament and Theresa May's actions post-reading the expert working group's report, Marie stresses the need for an independent review of the MHRA and funding for an independent review of synthetic hormones. Her message is clear and uncompromising: the quest for justice and safety in healthcare is a fight that's far from over.
Families who believe miscarriages and devastating birth defects were caused by the pregnancy test Primados say it's a fantastic positive that the government has told this programme it's committed to reviewing all new evidence regarding oral hormone pregnancy tests and adverse effects in pregnancy. I'm journalist, angela Walker, and in this programme I talk to inspirational people and discuss under reported issues. Today I'm in conversation with Marie Lyons. She's from the Association for Children Damaged by Oral Hormone Pregnancy Tests. Marie, thank you for talking to us today. Thank you for sharing your story as well about your daughter, sarah. But before we chat about Sarah and what happened to you, let's just look back at the timeline of events, because this is something that started some 50 years ago. It was in 1958 that primadose was prescribed as a new pregnancy test. What can you tell us about it? How did it work?
Marie Lyon:
The way it worked was it introduced a period if you were not pregnant. That was the premise anyway, and if you were pregnant, obviously within 48 hours if you hadn't bled, you could take it for granted that you were actually pregnant. The problem was that it was composed of synthetic hormones that were 40 times the strength of an oral concept, which, of course, we didn't know that at the time. But it was also supposed to be used for amenorrhea. Amenorrhea is an absence of periods.
Marie Lyon:
Now, as GPs will tell you, usually an absence of a period means that you're pregnant. So many women possibly would have taken that, assuming that it was a misperiod, and that would have induced a miscarriage or a bleed, and this, of course, as I say, something that we didn't know at the time. But in 1958, even as early as 1958, we had the first warning, and that was from a GP called Dr Edwards, and his warning to the committee of safety of medicine and safety of drugs was that this is a type of insult to the foetus that could actually cause congenital abnormalities in the not well-established pregnancy. And, of course, when you're taking that, when you literally just missed a period, it is not a well-established pregnancy and sadly, his warnings were just not listened to.
Angela Walker:
And so when we're talking about abnormalities, what kind of problems are we talking about? Marie, A lot of limb problems.
Marie Lyon:
So it was either shortened limbs, missing limbs, toes and fingers that were fused, very, very often. Severe brain damage, heart problems where the heart just didn't develop, transposition of the vessel so that you know that they're all on the wrong side. Really, really dreadful injuries. That the something was that it wasn't a pattern. With Thalidomide there was always a pattern of the limbs and with our families it was a lot of internal damage as well. It was only later on that we found out that Thalidomide victims also had similar injuries to us that were not visible. But it was easy to kind of quantify what happened with phyllidomide because it was such a pattern of injuries.
Angela Walker:
And so you had a baby. You had a little girl called Sarah. What year was that, and what happened when you had Sarah?
Marie Lyon:
Sarah was born in 1970. Now you've got to bear in mind that we'd had many, many warnings before then about the danger of these hormone pregnancy tests and in 1967, there was a definitive study produced by Dr Isobel Gal which gave a severe warning that these drugs were causing the damage. However, they were still on the market in 1969 when I took the tablets and Sarah was born. Sorry, in 1970, when I took the tablets and Sarah was born in the October of that year, her left arm had not formed below the elbow but there was a tiny little pad at the end of her elbow and that had five tiny digits. So obviously the hand and the arm were there initially but just didn't develop. She had to have those amputated when she was 13 months old, which again was another trial. She was only a little baby and that was quite a severe operation. But when I look now at some of the other damages that occurred with other families, we were quite lucky.
Angela Walker:
What was it like when you had your baby and there she was and she is perfect, as she was beautiful, yes, but she had a problem. She did. Her arm hadn't developed properly. How did you feel, Marie?
Marie Lyon:
It was very difficult at first, because you always feel more when your child is hurt than you do when you're hurt. My problem was that I mean she was beautiful and very feisty. Certainly didn't let it hold her back at all. Even in hospital, when she had the amputation of the fingers, she was up in the cot and taking the bandage off for about an hour.
Marie Lyon:
But it was difficult because once she started school in those days it wasn't actually something that was as common to see a child with an artificial arm and it was a horrible heavy that had to go with straps across her shoulder and children were frightened of her because if she turned quite quickly of course the arm could just knock into one of them. She did suffer quite severely when she first went to school and it was only thanks to the wonderful teachers that actually said to the children Sarah's just different, you're different with your hair colour, with your height, with your whatever, and she's just different. Then the second wave came, when she became a teenager. That then is when you're into relationships and going out and getting joy. She was beautiful, really, five foot eight, absolutely gorgeous, but nevertheless not everybody would accept that she had an artificial arm.
Angela Walker:
So you took these tablets in 1970, and the warnings within the medical community were being given out long before 1970.
Marie Lyon:
Of course.
Marie Lyon:
Well, I said the first one was in 1958.
Marie Lyon:
From 1964, we had another one for another doctor that said and this is actually from the GP research group and they found that 8.2 percent of 60 pregnancies had found congenital malformations, and that was after taking an oral HBT. Another again medical professional actually wrote to say this actually looks like it could be another salad of mine. So these are all 64, 65, they were just relentless and they were always telling the health authority, the current regulator, and the regulator just dismissed it and eventually Dr Gal produced her and it was an extensive review of the pregnancies and she was actually a doctor at Carshalton Hospital, so she was dealing with pregnant women all the time and she was the first one to actually see that there was a link because of so many of her patients who were either miscarrying or having babies with congenital abnormalities, and that made her actually research it really thoroughly. She presented this as well to the Commission, the Committee on Safety of Medicines, which they absolutely ignored and ultimately had to say we have no defence in the 8-year delay in taking these tablets off the market.
Angela Walker:
Yeah, because it was not till 1975, there was a warning from government health regulators. In 1977 there was a second warning and it was 1978, eight years after you had Sarah that it was taken off the market. It was.
Marie Lyon:
I think that the frustrating part is the 1975 warning, which was an official warning to GPs, said that we have found a link between taking these tablets and other effects. The 1977 notification went out said quite definitely the link has been confirmed. So I don't quite understand why it's still today is denied that there's any kind of association between taking these tablets and the dreadful adverse effects our members have suffered with. It just does not. It defies logic really. That's all I can tell you, even in that day and age, that so many specific warnings have been sent to the UK regulator, who would actually dismiss them, would not actually take any action, did his own research and actually did a full study and that study confirmed that there was a five to one chance of abnormalities if you took home the oral hormone pregnancy test. Instead of warning the GPs about this, he actually contacted the drug company and said I'm giving you a heads up before this actually gets to any kind of legal action, that this is what I found, but don't worry about it because I've destroyed all the evidence.
Angela Walker:
Shocking to hear. Shocking to hear. Well, in 2017, an expert working group commissioned by the government said it found no association. But then, three years later, 2020, baroness Cumberledge chaired an independent review and it did find an association and adverse effect. And that's just three years ago.
Marie Lyon:
It is, and I think the problem is it's like Mark and your own homework, because that expert working group secretary after that was the MHRA, and the MHRA, of course, are the successors of the original regulator and they definitely interfered with that expert working group results. We have freedom of information documents, that which prove that. They all today from the original report that I received, the draft report, to, one month later, to the full published report, and that was definitely interfered with by the MHRA. And this is another problem I think that we have in the UK that we don't have a regulator that actually works for the patients. They still work with the drug companies. So we know that that report was absolutely flawed, deliberately flawed, as said by one of the professional people who are actually looking at this. His name is Professor Carl Hennigan and he says that it was deliberately flawed. That is a link. He found the link when he did his report about 18 months later.
Angela Walker:
So we don't have the MHRA here to defend no, sadly, we don't to defend that. So I would say that they would probably dispute that that was interfered with. But we do have a statement here from the Department for Health and I'm going to read this out. It's very interesting because it says here "patient safety is of the utmost importance, which is why we published our response to the cumbersome review in July 2021, where we accepted the majority of recommendations and 50 actions for improvement. The scientific evidence this statement from the Department of Health says does not support a causal association between hormone pregnancy tests and birth defects. We are committed to reviewing all new evidence on hormone pregnancy tests and adverse effects in pregnancy. Now, this is a new development, isn't it? Because they're committing to reviewing that. But when you got your day in the High Court, it didn't pan out for you how you wanted it to, no, it didn't, because they vehemently defended the situation.
Marie Lyon:
They absolutely supported 100% the expert working group report and they use that throughout the whole of that four days to say this is why we dispute your findings, because this was a full expert working group that worked for almost two years looking at the evidence. They would not acknowledge that Theresa May actually stood up and said that it did not add up because she'd read it cover to cover. They would not acknowledge that more than one prominent scientist had said that the figures did not add up. It had a full meta-analysis done by Professor Carl Hennigan, but they have stopped that rigidly throughout. So for them to say now that they are committed to reviewing new evidence just doesn't add up for their behaviour either.
Marie Lyon:
They were very, very aggressive in court and definitely said there is no case to answer. And the other thing that's really quite telling is they quite insist that it has to be a causal association. They are very well aware, even lately, for aware, to get a causal association you have to give that tablet to a pregnant woman. That's the only way that you can see cause and effect. But I know that there are scientists out there that are working on the probable effect, which is as near to cause as you will ever get, and they're getting good results, so I hope that they actually stand by that statement.
Angela Walker:
So this was May 2023. This was just a few months ago and after this court case, I know you were determined not to let this be an end to the matter, but then you had communication from the government and drug company. Tell us about that, because this communication was really trying to silence you, wasn't it? And to stop you from taking further legal action, regardless of any new evidence that you might find. So just talk me through that.
Marie Lyon:
It was intimidating. Our members were absolutely petrified because the implication was and it was quite a confirmed implication that if we continued with the legal action, that we would be liable and they would ask for costs of the previous hearing in 1982 and the current hearing today. Those costs if we had to pay the full amount would have been in excess of £11 million. As you can imagine, our families were absolutely petrified and I think that was compounded by the fact that they had email after email sent to them to say you need to sign this and if you do not sign this, we will be coming up due for costs. And I think the final upset for our members that really did cause enormous stress. They received a bind of this big full of documents and all of them basically the same kind of message this is the evidence that we have, this is the work that we've had to put in and this is what we'll be charging you for. So ultimately we had no choice, we could not.
Marie Lyon:
And even Justice yet in her summing up, said you will now be relieved to know that you will not lose your houses. And this was the fear. We're all in our seventies, you know, some in early eighties and the only access that we have is our home. We don't have any other assets. You know, most of us are pensioners. So that was a threat that we just could not ignore and we had to agree, and our barrister quite rightly said his job was to protect us. So his advice was we need to accept this unfortunate, I'll say. It's a request from the defendants.
Angela Walker:
And in June of that year, manchester Mayor Andy Burnham accused the government of using its might to bully and silence disabled campaigners. In the courts They've been accused of bullying. Your own barrister is telling you don't take this any further. Yes, where did you? What did you decide to do?
Marie Lyon:
I had to look at what would help our families. The one thing I had for weeks beforehand was phone calls and emails saying please, please, tell me, I'm not going to lose my home. Please tell me, particularly ones that run in their own businesses, please tell me that they can't take our business. And relentlessly, really, I stayed with. They keep going, just keep going, because you know this surely cannot be, you know, our own government going to sue us for damages after already damaging us with allowing those tablets on the market. It couldn't happen. And I genuinely, genuinely thought that that threat was just that. It was a threat and it would never be carried through. And it was only, as I say, when we got the deluge of emails, letters and then this huge file, our barrister said look, this is serious and we have to now take the view that we cannot risk those costs being awarded. And, just as she upset herself, she would have had great difficulty in not awarding some kind of cost to the defendants. So ultimately, we did not have a choice and we had to comply with the defendants wishes, and that was that we will never, ever, be allowed to bring another action against any of the four defendants for damages, stating that these have been caused by the Oral Hormone Parenthood Test. It was a bit of a blow, it really was, and how do you feel about it now? Well, I actually feel quite fired up because you know what we're down, but we're not out. We've still got options that we can look at, and that's what I've said to our members. Look on the positive we now have no costs against us by any of the defendants. The previous solicitors have no costs that they can claim. If we had on it. We're starting now the level playing field. We know that we have right on our side. We know that justice hasn't been served, but that doesn't mean to say that it won't be served. We still have the option to look at new evidence that will be coming out. Justice Schipholz, who alluded to the fact that this does not include government bodies, you know. So that does mean that we still have possibly some kind of redress from our government. I'm not sure where that will go and I certainly would not accept anything except full accountability from the government that they were negligent and we joined this drug from the market. So we are going to regroup.
Marie Lyon:
My priority at the moment, quite honestly, is to look after our families because they still have. They still can't believe that the free of these costs that you cannot. I cannot emphasise the fear that they felt, knowing that there were risks of such a huge amount of money, and I just feel they need now to settle. And this is what I've said to them. It's not bad news. Yes, it's a bump in the road. We've had them before. We can regroup, we can look at new evidence. That comes in, particularly now, angela, with having that, you know, definitive statement from the government. They are committed to looking at new evidence. As soon as they look at the new evidence I know he's out there and I will continue searching for that evidence there will be duty bound, morally bound, to actually review their current stance.
Angela Walker:
Yeah, this is great, isn't it? Because this is just this statement that we've received this week. Yes, I'm going to read that bit out again because it's so important. We are committed. This is it, says a DHSE spokesman says we are committed to reviewing all new evidence on hormone pregnancy tests and adverse effects in pregnancy. We've got it here. It's in black and white. Let's see them reviewing this new evidence because it's out there, you say, isn't it? Now? Let's just read this out, because we do need to give Bayer's side and this is what they say their reactive media statement.
Angela Walker:
I did invite them to come on the podcast. I invited the Department of Health. They both declined, but this is their statement and they've said the High Court judgment of 26 May 2023 dismissed the legal case in the UK. The judge considered all circumstances and noted the litigation is an attempt to relitigate issues that were considered in earlier litigation, which failed because a causal association could not be established between HPTS and fetal harms. Having considered material before me, I conclude the position has not materially changed in the claimant's favour. As such, the proceedings were struck out and the court determined in bringing the claim they'd been an abuse of process.
Angela Walker:
It goes on to say they've got sympathy for the claimants, given the challenges in life they've had to deal with. But Bayer's maintained over the course of more than 40 years there's no causal relationship between the use of primados and increased incidence of congenital anomalies, in which case it based the question why was it removed? Why was it removed from the market? But there we go. This is what we've got from Bayer. So that's their statement there. How are you feeling, marie? You've been fighting this fight. I mean, how old is your daughter now? She's like 50. 53. She's 53. At what point did you start this organisation? To fight for justice, to fight to have this link established and to receive a compensation for it and acknowledgement of the harm.
Marie Lyon:
The acknowledgement of the harm is the most important thing. We need to know that we were not to blame. We started in 1978 and at that time, with 800 families who wrote in to say that they'd been damaged, we were forced to withdraw in 1982 after the court case was stayed, and the reason for that was that, bearing shearing, as they are now, had 31 experts and we had eight. So we were outmaneuvered in relation to finance, which has happened again this year. We didn't have the financial backing, we didn't have the legal backing either. We just had a barrister that's working pro bono and a barrister that has actually been lent to us by advocate, which is fantastic charity, but nevertheless they both committed. So my feeling is that had we had Hillsville or Dr If you've heard of Hillsville the public authority accountability bill, we would have had parity when it comes to legal representation and the funding. We would also have had duty of Canada, which again in the original legal action, 82, that would have actually close our case by a really resounding success, because there would have been duty bound to release all the information they had, which they actually destroyed. So 1978, we then had to give up as a saying 1982. And again it was the same kind of thing if we carry on. We had to sell our houses to finance it because lead delayed withdrew.
Marie Lyon:
When we restarted again in 2009, it was with the original evidence that we had, but quite luckily, we went to queue archives and found so many documents that proved that they were well aware of the damage and that they'd actually destroyed our hidden documents so that we were not aware. I was then lucky enough to be contacted by the German campaign group and invited to go over to Germany because I'd asked them that they got something similar to queue archives, and they said well, we do, but you know we're not really looked into it. So I went over there. We went into the archives at Lanzar archive in Berlin and the 7000 pages of documents from both the drug company and our regulators showing that the you know the cross emails that had gone literally communications about the issue.
Marie Lyon:
Amazing communications and again, you know they're in black and white to say, well, yes, we knew it was used as an abortion patient, so what? And that was kind of the callous attitude. And that callous attitude continues today. They know that we are these little people, they're these huge organizations and the real thoughts are they can't touch us and, sadly, unless we have something like those for a while, they're perfectly right.
Angela Walker:
I admire you, I really do for powering on, because it's exhausting and I see that this campaign just taking over your life really hasn't it? Absolutely.
Marie Lyon:
Yes, it has to, because you can't have a five day a week and you can't have a nine to five, because you're dealing with different countries, different time frames. You know, evidence comes in that just needs immediate review. I can't say, well, I'll start with come Monday and yes, it does. But at the same time, it's for a purpose that means so much to so many people, and it's not just our families. I think this is what is kind of hidden at the moment. This is for women in the future.
Marie Lyon:
This is to look at the safety of those synthetic hormones that are still in oral hormone, in the pill, the oral conceptive. And I'm not saying don't use it. I'm just saying that there are ways that that can be made safer and research really is what's needed today. That's one of my prime asks please do more research. We know, because I've just had a study sent in from Sweden and that study says that you can actually reduce the components of the pill by 80%, which will avoid strokes, cancer, high blood pressure and all the other known effects of the pill. And they are known, they're acknowledged. So what I'm not saying is don't take it, you know, don't worry about it, but be careful. Make sure that you've got informed consent, that you know the risks. But my plea is to scientists out there please start to look at these, these synthetic hormones. Let's look at the future. Let's look at young women now, today, who have the freedom of the pill, but let's make sure that it's also safe and that they're protected.
Angela Walker:
Because of course, we go to the doctor and the doctor gives us the medication and we blindly take it. I mean slightly less so nowadays because it's quite easy to hop online and go right. I'm just going to quickly Google this drug that I've been taking and just see if there are any. You know side effects. You couldn't do that in the 60s and 70s, you know, because we trusted trusted implicitly.
Marie Lyon:
And I think the sad thing is why do we need to do this? Why is that the drug regulator, the MHRO? Why are they not doing this? This is their job, but it isn't, you know. We think it's their job to actually protect patients, but their job is actually to work with the drug companies and they're paid by the drug companies. So this tells me immediately that there's an inequality there. But you know, who are they protecting and they're definitely protecting the drug company.
Marie Lyon:
So this is a concern I've had since I started back in 2009. I didn't even consider this in the early days, but it's only now we're finding more and more out about the damage that's done by this synthetic hormones. There's still use as an abortion, you know, in third world countries, and that was the use for them, but that use was never disclosed. So you've got to consider if you've got something that's an abortion, how on earth can that be a pregnancy test? And with another, oh wow, incredible.
Marie Lyon:
Professor Neil Vargesson, a Scottish academic, and he's worked on Thalidomide for over 25 years and he became very interested in this and he said from day one wow, this is not a drug you should give to a pregnant woman. Now I know that he's doing some more kind of research. I'm not sure whether it's at the moment, but again, I know that people are now actually starting to look at the environment is affecting the waterways. So we've got fish. They're actually changing sex. I've written to King Charles and told him about that because it's a big issue of the environment. You know these, these drugs are flushed into the waterways or the contraceptives are throughout the whole world. You know billions and billions of people and nobody's actually looking at the damage. Sorry for the rant.
Angela Walker:
You're very entitled to rant as far as I'm concerned. Now, how's your daughter now? Tell me about Sarah now, because you were saying earlier you're not just worried about the more obvious complications and disabilities that people have got missing limbs and deformities like that. There are other unseen complications that you're worried about. So tell me about those problems.
Marie Lyon:
Well, we've lost three members in the last 18 months to heart attacks. They were all either late 40s or early 50s and two of those were undiagnosed. So this is one of the fears I have. I know that she also has periods where she's not very well, but nobody can actually pinpoint what it is. So she gets extreme tiredness. She also did have a period of about five years of severe panic attacks and again all this, you know, when she speaks to therapists they say this is actually something that's been ongoing since she was a child and obviously the trauma in childhood, with school, with teenagers etc. Will come back at some time.
Marie Lyon:
But I do know with some of our other members, with one of them now that's actually in a wheelchair because her internal injuries have really started to take hold and she's going to need a massive operation on her bladder and bowel. So this is where the fear is for me and for the other mums. You know we've managed, thank God, to keep our children relatively healthy for now, but what is there in the future? But you know, the other thing as well which is so heartbreaking are the number of families whose child didn't survive and they look at every anniversary, every better. That should have been every Christmas, every Easter, whether they would have been married, whether they've had grandchildren, that never, ever goes away. That's the forgotten child, if you like, from other people. So it's all those effects that are so difficult.
Angela Walker:
And how many people? I mean it's so hard to quantify, isn't it? Because you know, if somebody did take this tablet and it did induce a miscarriage, then it's. You know. I mean it's 50 years ago, at the time that that event came and went. It might not even have been registered anywhere. So it's very difficult, isn't it, to put a number on it.
Marie Lyon:
It is difficult, and I think this is where I feel frustrated that there were women out there that feel that they did something wrong and they didn't.
Marie Lyon:
And it was the sheer cynicism of the drug company that in 1978, a thousand packets a month were sent to Northern Ireland allegedly from an area. Now you're not telling me that that was from an area, because at the time abortion was illegal in Ireland and my feeling is that that was a cynical move by the drug company. We'll stand this over for this purpose, but if it's happened to be used for something else, so what? Now again, a lot of those women may probably did genuinely go to their GP for a pregnancy test and they may have been given these drugs absolutely unknowingly, as we were. And again, once they found out about the other effect, they may actually be thinking oh my God, I did this to my child and people think I did it deliberately. And it's those kind of add-on effects for women throughout the world. I mean, they're giving these to young girls now to stop their pregnancies because abortion is frowned on in these third world countries and it's that use that I vehemently oppose and I really want that to stop.
Angela Walker:
Yeah, it kind of beggars believe that we've got a product here which is used for abortion and at the same time it's being distributed as a pregnancy test for people who want to have a baby.
Marie Lyon:
Those components during the current day abortion pill? Do you know that they're actually in the pill today? So what does that tell you? And why can the drug community not really just say, ok, right hands off? One of the reasons we had a wonderful debate in Parliament with some fantastic MPs Theresa May was one of them and so Mike Penning actually stood up and said you know, this was a drug that came from our health authorities this was from the government health service, if you like and yet they're denying culpability when they're responsible for it being on the market. So and David stood up and said I know the reason that the drug company worked out responsibility, because over 80 countries were actually using this drug. That's how many countries that they flooded with it and what his thoughts are that if the drug company had to admit liability here, they'd have another 79 countries coming after them.
Angela Walker:
I don't know if that's true, but it does sound to reason that if in a court of law in this country it was ruled that it was responsible, then that would roll out across the country and the financial implications would be astronomical. So I can understand that, but how do you feel? I mean, there was an acknowledgement, wasn't there? When Matt Hancock, you know he apologised, did he not? What did he?
Marie Lyon:
say about it. He rescinded that because when I actually got back in touch with him, the comment was "oh gosh, no, we were just apologising because we didn't listen to you. We're not admitting any kind of responsibility, not even moral responsibility, but keeping it on the market. So that apology, I knew it was worth it. As soon as the words came out of his mouth. There was no sincerity there, no real empathy, so I dismissed that immediately.
Marie Lyon:
It wasn't a great shock to me when it was then changed to another way of looking at it and for me, as I said, the person who really took charge of this after the expert working group report was Theresa May, and that was some Mike Penning again, who actually said to her have you actually read it? She said, well, no, but obviously I've got special advisers who've read it. And he said just read it. And she did. And she said, as soon as she read it she just thought, whoa, no, no, no, this doesn't add up. But you know that she's included us in her book as well, which I'm so delighted with. And again, that's just an acknowledgement that even you know that, far removed, if you like, that she is now from being Prime Minister, she still has this certainty that she did the right thing in actually agreeing to the IMM-DES review. She's the one that set it up and that was simply because of Primadoss and the fact that the expert working group report was flawed.
Angela Walker:
And how do you feel about all your dealings with government?
Marie Lyon:
Well, I think we've got to separate government from the political parties. We have MPs from every single political party. I am delighted, and this isn't a political issue. The only thing that I will say is I am bitterly disappointed that the only party whose leader does not support us is the Labour Party and Kate Stalman. We have tried and tried to get an interview with him, and it was the same with Jeremy Corbyn, and managed to get a half an hour with him. He promised and promised he would support, because I had a letter that I'd signed from every single member sorry, leader of every political party. One of them even sent his signature from Paris, where he was actually there at the time, and he refused to sign and I couldn't send that letter to the government. So, although it's not political, some of the Labour MPs are magnificent. Angela Rayner, you know for one, has been a real stalwart. We've got Yasmin Qureshi , who actually leads the FPG with 132 MPs, but government itself is separate from that and they've got another agenda. So I know that they have the Treasury, you know, they have the civil servants and, in the back of the government, all these people working to contain this, and I just want somebody in either the Conservative or the Labour government I don't really care which just to take ownership and to say once and for all we got it wrong.
Marie Lyon:
This isn't about money. I've said that from day one. We're not asking for millions of pounds. We need our families to be safe. We need the children who are still being cared for by the parents and they are 53 years of age and some are still in continent. They're in wheelchairs. They can't speak. We're in 70s looking after these children without any help whatsoever. We've one of our members in Scotland, dear God. She is now confined to a wheelchair. She had to have a leg amputated, Her arm is only to here and then she just got her hand. She pays for her own care. It's wrong. Where do you take this from here, Marie? I take it as far as I can go because I'm not giving up.
Marie Lyon:
I've said this from day one. I know that justice is out there. It shouldn't depend on how much money we have and it shouldn't depend on the government really outmaneuvering, if you like, with the finances. I mean, you know there were two cases, two barristers, solicitors. There was a total of about 25 people on that side of the room defendants. We had two barristers and me on this side of the room and that was it. So there was a huge inequality and this is why, as the sale was over a long, that will stop. They will not be able to beat people into submission in the future. So it's really important.
Marie Lyon:
It's also important to look at our regulator. You know there's something wrong in this country where we cannot trust that the drugs that we are taking have been safely tested, and MP Esther McVeigh she at the moment is really trying very hard to have a full inquiry into the MHRA, which is what we've been asking for for a long time. So what I'm asking for is this I want a full review of the MHRA. I want to support Hillsborough Law for people in the future. It's too late for us, but people in the future will benefit.
Marie Lyon:
I want there to be some kind of independent funding for an independent review of these synthetic hormones so that women in the future will be protected. I also want women to be aware they can question their GP. They can actually ask to make sure that they've got all the risks and benefits before they take any kind of medication at all. And this is the same to be absolutely honest for the medical devices, because you've got Kath Samson who manages the Mesh campaign, who's worked her heart out, just the same as we have to try and get some kind of justice and to stop women actually stopping in the future. So we're not alone. There are other people who are in the same position and I don't think we're anything special, but I do think that we can make a difference if people would just listen and act.
Angela Walker:
So we've got this in writing here that the government's committed to reviewing all new evidence. Is there any new evidence going to be forthcoming? Are you going to be able to revisit this?
Marie Lyon:
Yes, yes, it's the short answer. I do know that there is evidence that's actually culminated at the moment, hopefully in some kind of written paper, maybe towards the end of the year, which again is to show me. It wasn't there for the four-day hearing, but we have COVID for two years and that did stop a lot of the work in the labs with the students. So we do know that there is evidence coming. We're not sure which direction is coming from at the moment and when, but this is why I was so absolutely thrilled when you actually received that statement from the government. That was like gold for me and that was again.
Marie Lyon:
It's just a little beacon of light where we can say you know, we're not finished yet and we're not finished at all. This is an injustice. It's got to be realised with some kind of acknowledgement. That's all we want. Please acknowledge that we didn't do anything wrong, but that you failed in your duty of care and that the drug company basically put profits before safety. And again with our regulator, they conspired with the drug companies in 1967 and in 2003. And I'm disgusted, utterly disgusted.
Angela Walker:
Marie, thank you so much for talking to us. You're so passionate and full of drive. You're a formidable opponent. If I was in trouble, I'd want you on my side. You're in trouble, you come to me. Thank you for coming on and sharing your story, and I want to stay updated with your campaign and everything that you're doing. Thank you so much. Thank you, it's a pleasure. I'm journalist Angela Walker, and today I've been in conversation with Marie Lyon. I hope you've enjoyed the programme. Please leave a review, as that means more people will get shown this podcast due to the algorithms, and check out the website AngelaWalkerReportscom, where you see information about other podcasts that I've recorded, and you can also sign up for the newsletter, where you'll get information about all the latest news and developments on the stories I've been covering. Until next time, take care.