Charlotte Caldwell Launches "I Am Billy" Campaign
It’s been several years since I first became aware of Charlotte Caldwell and her son Billy. I was building up momentum for the American Cannabis Report and had learned about Charlotte Figi, Rylie Maedler, and Alexis Bortell, American children whose parents had sought alternative treatments for their seizure disorders and turned to cannabis.
But Charlotte Caldwell's battle against doctors and bureaucrats in the UK who were willing to let her son Billy die to protect cruel and obsolete laws was the most heartbreaking. (One doctor even offered to do the job, as you'll see).
In this EXCLUSIVE U.S. INTERVIEW with Charlotte in early May of 2021. In my opinion, Charlotte is one of the world's greatest warriors in the battle for cannabis patients' rights. I’m very, very pleased to be able to have her here today.
Christopher Smith, American Cannabis Report:
Charlotte: Yes, it's me. It's a pleasure to meet you, thank you. I'm sorry, please accept my apologies, I have back-to-back Zooms today.
Christopher: No worries at all, Believe me, it's my honor. I have to tell you, you're one of the reasons the American Cannabis Report exists.
Charlotte: That's wonderful to hear! It's actually quite a crazy time for us because we're about to launch a major national campaign in the UK for medical cannabis. It's taken us approximately six months to get this campaign together, so it's crazy.
Christopher: Can you tell me what that campaign's about?
Charlotte: I think my message is really my heart is with the patients, and always will be. I'm very, very, very much patient-orientated. It's simply because I have witnessed first-hand what this medicine has done for Billy. Billy has now had access to medical cannabis via a prescription, prescribed by doctors for nearly five years. And his journey actually started in California, and he has done incredibly well. I have watched him flourish right before my eyes.
Christopher: Can we talk specifically about Billy’s condition, for our readers who might not be familiar with the details?
Charlotte: Billy has refractory epilepsy. And he's also severely autistic, and he's non-verbal. Billy had a very, very, very severe form of epilepsy. He was a “status epileptic”, which simply means that when Billy would go into a seizure he couldn't stop on his own, so I would have to administer rescue-medicine, either diazepam or buccal midazolam, to stop the seizure, and also he would go blue and he would require oxygen.
Christopher: Oh, goodness.
[BILLY ENTERS. He comes in and out of the room throughout the interview]
Christopher There he is...
Charlotte: And we were simply living a life of dashing to the hospital on a weekly or fortnightly basis. He would be blue-lighted to the emergency room and it was only a matter of time, I truly believe, it was only a matter of time before one of those seizures actually took my little boy.
So Billy could have also had up to 300, 500 seizures per day. He was on a cocktail of pharmaceuticals that were not working. And then he was on a further cocktail of pharmaceuticals to counter-react the side effects, the detrimental side effects, of the cocktail of AADs.
And to find a medicine that is working, but also to find a medicine where there is no side effects is so important to a child like Billy. Because that has allowed him to flourish, to thrive. So he's really, he's not surviving. Billy is thriving. He's running, laughing-
Christopher: [Billy’s voice is heard] And singing, I hear.
Charlotte: And singing.! I will always be eternally grateful about the fact that Billy, due to his autism, would never, ever have initiated a hug. And a couple of years ago, for the first time in his entire life, he actually ran towards me with his arms outstretched, and he initiated the hug.
And that, the first time he did that I thought, "Is it a fluke?" So I made him do it a number of times, and I was very, very emotional. I was crying, and it was just incredible that he actually initiated the hug, and I want to just... For a mother to feel that and to see that, that for me was incredible.
So I think for Billy, and for me as Billy's mummy, the basics, the simple things that a lot of parents I suppose take for granted, that's what we're enjoying now, and that's all thanks to medical cannabis. So it's not just controlling Billy's seizures. It's letting him lead a somewhat normal life. It's a very, very powerful medicine.
Christopher: Do you mind if I ask, Charlotte, when did this a start for Billy? Did it start when he was a young boy, or earlier? I'm not sure.
Charlotte: Billy had his first seizure when he was four months old. And he was blue lighted to the hospital, and we spent 16 weeks in the hospital whereby they tried a number of AADs that weren't working, cocktails of AADs, until eventually they said to me they wanted to put a line into Billy's arm and administer morphine, and they wanted to end his life. And of course they wanted me to take him into a little side ward and administer this morphine, and they said to me, "Billy will go to sleep on your knee forever because there's nothing else left for Billy."
Christopher: That's horrifying.
Charlotte: Now of course as Billy's mother, I refused and I said, "Look, if Billy is going to die, I want to take him home. I want him to die at home." So I took Billy home, and just researched anything to do with epilepsy, because obviously I was very naïve then, I had heard of epilepsy but I hadn't witnessed seizures just right there in front of your face, and when it's your own child it's incredibly painful to watch.
So I found a doctor in Chicago, and I flew Billy to Chicago. He was actually an epileptologist, and Billy underwent a number of diagnostic tests, and we weened him off all his pharmaceuticals and left Billy on one. And Billy then started also on the ketogenetic diet, and that led Billy to 16 weeks seizure free.
He was very depleted at that stage, he couldn't hold his own head, he couldn't sit up. He couldn't walk, he was just lying in his stroller, depleted. Drooling from the side of his mouth, he was just completely depleted. So the doctor said to me, "Look, let's get this young man into intense physiotherapy and let's see what we can tease out of him." And Billy at that stage was two years of age, and I enrolled Billy in an intense physiotherapy program in Chicago. And we spent two years there. And Billy had 20 hours of physiotherapy a week....
Christopher: At two years old?
Charlotte: Yeah, four hours every day. Two hours in the morning and two hours in the afternoon, because I just simply thought, "Right, so if you have, for example, a marathon runner or you have a boxer, he's training for a fight or for a marathon. They train every day." So I was just basically training my little boy the basics of life, which was to hold his own head, sit up, crawl, stand, and walk.
So after two years in Chicago, I walked Billy home through the airport. And it was like a miracle, Billy at that stage was then four. He did incredibly well up until the age of 10, and then his seizures started to break through. Again, I reached out to his medical team here in the UK, and I was told that there was a six to nine month waiting list before they could see him.
Obviously I knew the severity of Billy's seizures, he didn't have six to nine months to wait. So I reached out to the doctor again in Chicago. He had then moved to Los Angeles, to the children's hospital in Los Angeles. So I called Los Angeles and he said, "Just bring Billy back." So I put Billy on the plane again, took him back to LA, he underwent a number of diagnostic tests against, and at that stage the doctor felt that he might be a candidate for epilepsy brain surgery, but unfortunately for Billy he wasn't.
Christopher: So he's about 10 years old at this point?
Charlotte: Yeah, ten. He referred Billy to a medical cannabis specialist expert, and Billy started his journey on medical cannabis in Los Angeles. He was started on CBD, whole plant first, which was micro dosed up slowly.
So he was titrated up slowly, and then a little bit of THC was added, and unfortunately the first couple of doses of THC didn't agree with Billy, so they stopped the THC, and it was THCA that was added.
And that actually took Billy then to 300 days seizure free.
Charlotte: And so we returned, we spent eight months in LA. And while his medicine was being microdosed and titrated up, and... [Billy sits on Charlotte’s lap] Hello, mister... And so we returned home, and then Billy's GP wrote the first prescription for whole plant medical cannabis in the UK.
Billy'd done incredibly well, and so that was April 2017 he wrote the first prescription for medical cannabis. Fast forward to May 2018, and Billy's GP was informed by the powers that be to stop writing a prescription for Billy Caldwell for medical cannabis.
Christopher: Do you have any idea, Charlotte, why they just, all of a sudden, stopped?
Charlotte: No. Even now a number of years later, I have no idea why that happened. It pushed Billy into a crisis situation where he had three weeks medicine left. So the Department of Health informed me that if I found a medical cannabis product that had been through a clinical trail for children with refactor epilepsy, they would reinstate his NHS prescription. So of course mum on a mission, I scoured the globe, and that search led me to the children's hospital in Toronto in Canada, whereby there was a pediatric neurologist that was in the process of carrying out an observational study on about 100 children with a medical cannabis product.
So again, I packed our clothes, packed Billy's toys, put him on the plane. Flew him to Toronto. And Billy underwent some tests, and he was prescribed this particular medical cannabis product, and we flew back into London Heathrow airport whereby his medicine was confiscated by customs. And-
Smith: That was the Heathrow incident?
Charlotte: Yeah. In June 2018 that was. So that, again, pushed Billy into a crisis situation. I pleaded with the Home Office, I went and met them that day that is medicine was confiscated. I pleaded with them to return his medicine, but to no avail. So that was a Monday that his medicine was confiscated. By Wednesday, the seizures were breaking through. Friday morning, I was putting him into an ambulance and he was being blue lighted to the children's hospital, the Chelsea and Westminster Hospital in London.
And obviously there, the doctor... I have to say that the NHS doctors and nurses were absolutely incredible, but they were treating Billy with their hands tied behind their back, because Billy's medicine was actually in the vaults of the Home Office in London. So at 11 o'clock, approximately on the Friday night, the doctor came into the room and said to me, "Look, I'm going to get your little boy's medicine back." He could see very clearly that Billy desperately needed this medicine.
So between him and our campaign team, they negotiated overnight with the Home Office and on the Saturday morning they returned Billy's medicine via a taxi. And so Billy got his first dose Saturday morning, by Saturday evening he was sitting up. By Sunday morning, he was eating, Sunday he had a full dinner on Sunday, and Monday morning he ran out through the hospital doors to meet the world's press. And it was just a miracle right there... and the world was watching, and the world could see that this cannabis is a medicine, and Billy just was demonstrating he needed, how desperately he needed this medicine. It was keeping him alive.
So his medicine was returned, that was on the Saturday. So on the Monday he was discharged, like I said, and then on the Tuesday the Home Secretary stood up in parliament and announced he was going to change the law. So Billy had achieved something, and of course we were quite naïve at that time, I didn't realize the impact that this was actually going to have on the world. He had changed an outdated, unjust 50 year old law, that many people had tried before to change and couldn't. And so it was just incredible, the power of one small boy.
Because that then opened up the door to the medical cannabis industry in the UK. And Billy got the first prescription again then, on the NHS for whole plant medical cannabis, and so that was in June 2018 so he did really well all summer then. So July, August, September, incredibly well. And in October, his seizures started to break through again, October 2018. I conferred, consulted, with Billy's medical team in Northern Ireland here, and his doctors said, "Well, I'm not an expert in this medicine." And I said, "Look, I think I should return him to Canada to the expert, because something has gone terrible wrong."
So again, I found myself putting Billy on the plane, packing our cases, his toys, books, and I returned him to Canada, to the expert in Canada. And she prescribed Billy a new medical Cannabis product, and the reason being is because Billy had then started puberty, so his little body was evolving and hence the epilepsy was evolving.
And so she informed the Department of Health in Northern Ireland, and Billy's doctor, the reason why he was being transitioned to a new medical cannabis product, and the formulation of the product, et cetera, And I get a call in Canada the next day to tell me that Billy's doctor would no longer be supporting his medical cannabis prescription on the NHS, because on the first of November 2018, I returned Billy to Canada on the second of November 2018.
But so on the first of November the law had changed and when the law had changed, the British Pediatric Neurology Association had issued new guidelines saying that there was no clinical trial data to support or to justify an NHS doctor writing a prescription for medical cannabis, whole plant medical cannabis, for a child with epilepsy.
So we ended up being exiled in Canada for a further four months until February 2019, because what I had to do was I had to find a doctor on the NHS or a private doctor to support Billy's medical cannabis prescription so I could bring him home legally and safely. And so in February 2019, a private doctor came forward and that's how I was able to return Billy home safely to the UK. That was a private prescription which had to be paid for. And we then started to lobby the governments again to have his NHS funding reinstated for his medical cannabis. But to no avail.
We entered a legal process, a very long, torturous legal process. But fortunately for Billy in the midst of that, the Department of Health in London reached out and they formed an expert panel, a group called RESCAS at Great Ormond Street, whereby if an NHS treating pediatric neurologist felt that a child was benefiting from medical cannabis, or that could benefit from medical cannabis, their case can be referred there, and there's a discussion takes place and if it's a positive outcome, NHS funding is provided for the medicine.
So Billy was referred to RESCAS, and he had a positive outcome. So in October 2020, he got his NHS funding reinstated, which was his third public funding for medical cannabis.
So... [Billy enters frame again, wants hugs] Hang on mister. What do you want? Hang on, yeah. So it's been quite a rollercoaster of a journey. But Billy, look. I'm extremely thankful to the Department of Health, to Matt Hancock in London and to our Health Minister here in Northern Ireland which is a gentleman called Robin Swann. They have given Billy back his right to life, but most importantly, they have given me back my right as a mummy to hope, but most importantly they've given Billy back his right to life.
Christopher: What an incredible story, Charlotte, I got to tell you. I've been following you on the Keep Billy Alive Facebook site for four years now.
Christopher: Oh, absolutely.
Charlotte: Oh my god. Thank you, very much. Thank you.
Well, I mentioned to you when we first spoke that you've always been “Dear Charlotte” to me, that's always the way I've thought of you and that's always the way I described you. Every time I forward your messages on, I say, "You have to pay attention to Dear Charlotte, and watch what she's doing for her son Billy, it's the most incredible battle I've seen, it's the most amazing thing."
Yeah, thank you.
So I'm really glad that you told me the whole story that you just did, because I don't think enough people over here in America know it, and I think they should.
Yeah, absolutely. And I think as well, Christopher, Billy has a huge following on his social media, and the last number of years I've been inundated with hundreds of thousands of messages, not just from parents with children with epilepsy, but MS patients, chronic pain. All types of conditions…
My priority, obviously, was to make sure that Billy was safe. And now that he is safe, from December last year we have been working December 2020, on this new campaign which we are launching next week.
(Announced today, May 22, 2021, see “Medicinal Cannabis Trial Could Enable Severely Ill Patients to be Treated on the NHS, Say Campaigners”)
This campaign is pioneering for patients. Patients will always be in my heart.
No family, Christopher, should have to go through what we went through, and our mission now is to make sure that every single vulnerable, chronically ill patient in the UK that could benefit from this medicine, gets a chance.
Charlotte, I know your time is limited today, so I would like to just ask you what kinds of things people over here can do to help you, and to help you in your fight?
Charlotte: Yeah, so Christopher, what we're doing, obviously this part is confidential until next week. Next Thursday we're launching our campaign in the UK, but it will also be for the British Crown Dependency Islands, so there's Guernsey, Jersey and the Isle of Man as well.
Christopher: I’ll keep a lid on it until then.
Charlotte: So this campaign, just so you're aware Christopher, as I said it's taken us six months to put it together. We have formed a medical advisory board of a group of some of the most eminent doctors in the UK. We have a policy board with a number of MPs and lawyers, and we also have a patient council where there's a number of patients as well. Our campaign is going to be an I Am Billy campaign. I can send you a link to that, I can send you a PDF on that and what it's all about.
Christopher: Please do.
Charlotte: But one of the main goals of the campaign is, at the moment in the UK we have a approximately about between 3,000 and 5,000 patients accessing medical cannabis by a private prescription, that means that they have to pay for their medicine.
Christopher: The approved drugs are very expensive.
Charlotte: Yeah. So those patients, Christopher, are similar to Billy. They are some of the most vulnerable, chronically ill patients in our society. And from some of the most deprived areas of our society, and they really have not got the money. So what we're lobbying government for is, a national pilots clinical care pathway. Whereby with our group of eminent doctors, these patients are put into a pilot trial to be carried out from an I Am Billy nonprofit clinic. Which is a clinic that will be owned by a patient, for patients.
Christopher: Okay, wow.
Charlotte: Because our public health doctors, our NHS doctors, are saying very clearly, they will not write any prescriptions for medical cannabis medical cannabis because they haven't got the clinical data. Now I totally understand that, because these doctors when they're trained at university, they're not trained on the endo-cannabinoid system, they're on trained on cannabis medicine. They've got insurance companies to answer to.
So I totally get this, and that's why this trial will be, for patients that are already on the medicine, there's your data right there in the UK, let's start using it.
We also know that our government, we have a government department called the NIHR which is a department whereby they fund clinical trials for doctors in particular products.
So we're going to be applying to the NIHR for funding to fund this, whereby so what we will be doing is we will be gathering the data, so this program will be like academic research. But also the patients will have their medicine paid for while our doctors are gathering the data.
So that's extremely important for me, because it will relieve the financial burden for thousands of patients in the UK.
Christopher: An elegant solution.
Charlotte: Yeah, so at the I Am Billy launch, we will also be launching the I Am Billy Foundation, which is a charity that we have set up. We've just been approved this week.
Charlotte: To help our NHS fund this trial, and fund our nonprofit clinic as well, if that makes sense.
Charlotte: For me I think that's a fair way to do this, because I don't want to be demanding of our government that they have to pay for this. We can all work together and we can do this together, and I think that's really important, my message is very clear. We have to collaborate, because we cannot beat our doctors up. There's a deadlock here between patients, doctors and government. Do you understand, Christopher?
Christopher: I do.
Charlotte: So we've got to work together. So I think the I Am Billy campaign is the key to unlock the deadlock, and that's how I see it. Let's get round the table, let's sit down, and let's start collaborating and talking and let's get this done.
Christopher: We have the same issue in the States of course, it's built into the whole prohibition right? Which is cannabis is schedule one, therefore doctors are not allowed to work on it. Therefore, there's no research, therefore the doctors can't act because there's no research, there's no research because the doctors... It's catch 22, and so it's a total diaster all the way around. And we have exactly the same issue, so our doctors are struggling as well.
There are some doctors here that know cannabis that are medical doctors, they're MDs, trained MDs, but they have learned the other side and they know it really, really well and it's a remarkable thing to listen to when you hear a person who knows both sides talk about it. It's remarkable.
Yeah, absolutely. And I think this national pilot clinical care pathway trial will be also, Christopher, it is academic research. It's going to educate our doctors, because every single one of those patients is going to stay on the same medicine that they're on.
And so there'll be a number of different products that we can actually gather the data on now and open it up, if that makes sense, for our doctors.
And Christopher, just keep an eye on Billy's page as well, we'll be doing updates and obviously the launch it'll be a very public launch And anything you guys in California can do to help would be amazing, because that's where Billy's journey started. Thank you so much, Christopher.
No, thank you! It's wonderful work you're doing, congratulations. And just one more thing, I noticed by the way that Billy's got the hugging thing down now.
Charlotte: Yes, he's got it!
Christopher: It's so lovely to talk to you, Charlotte, thank you so much.
Thank you very much Christopher, thank you!
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