In this episode we speak about a new report from WHO/Europe on inequities in treatment for childhood cancer in the Region and hear from Aron Anderson, WHO/Europe’s Ambassador on Cancer who himself beat cancer at a young age.
Show notes
New WHO report highlights scale of childhood cancer inequalities in the European Region: https://www.who.int/europe/news/item/15-02-2022-new-who-report-highlights-scale-of-childhood-cancer-inequalities-in-the-european-region
WHO European Report on Inequalities in Childhood Cancer: https://www.who.int/europe/publications/m/item/childhood-cancer-inequalities-in-the-who-european-region-2022-report
In this episode we speak about a new report from WHO/Europe on inequities in treatment for childhood cancer in the Region and hear from Aron Anderson, WHO/Europe’s Ambassador on Cancer who himself beat cancer at a young age.
Show notes
New WHO report highlights scale of childhood cancer inequalities in the European Region: https://www.who.int/europe/news/item/15-02-2022-new-who-report-highlights-scale-of-childhood-cancer-inequalities-in-the-european-region
WHO European Report on Inequalities in Childhood Cancer: https://www.who.int/europe/publications/m/item/childhood-cancer-inequalities-in-the-who-european-region-2022-report
Hello, welcome to the health and Europe podcast. I'm your host, Greg Bian. We've launched this podcast to bring you the latest on w HHAs work in the European region. Our region is broad and diverse from the Mid-Atlantic and stretching. As far as Chinese border, we work fascinating and driven individuals and groups. This podcast is about hearing their stories and how they might impact your day to day life Marking international childhood, who can today, w O Europe recently released a new report on inequities in childhood cancer. The report highlights some of the differences children face in the detection and treatment of cancer across the region. I spoke with Mave near loon communications officer at w O Europe about the new report. I started by asking why this report on childhood cancer equit has been produced.
Speaker 2:So first of all, this work hasn't been done before this report is the first of its kind, and it pulls together the existing evidence on childhood cancer inequalities in the w H O European region. Uh, what do inequalities in the context of childhood cancer mean? Well, the looks at the different experiences of children with cancer and of childhood cancer, uh, survivors, um, across the region individual experiences, and then the passions that emerge at a kind of a population level at, at the national and regional level. And what we begin to see is that depending on where you live, what country and within the country, whether it's urban or rural, uh, depending on your background, your gender, your age, and, and various other factors, there are clear gaps in terms of, uh, your access to services, availability of medicines, um, and, and so forth. And this report then makes recomme to help policy makers understand where the, the gaps are and how best to address them. So basically, um, the report is a rallying call to national policy makers and to everyone who influence policy that impact children with cancer, um, to be aware of these inequalities, firstly, and then to the, the resources necessary to address them.
Speaker 1:Thanks. And you explained there a little bit about the, uh, how, how broad the region is, but, um, has there been an improvement in childhood cancer care in the region over the, over the past decades? So
Speaker 2:There's really good news in this report. I mean, so the solutions are there, we, we know what the solutions are, the not a good news and what we need to draw attention to is that not all of the children in the region are benefiting from those improvements. Uh, for example, the mortality rate from childhood cancer ranges from, uh, 9% in some high income countries in the region to 57% in other countries. So that's quite stark.
Speaker 1:So I didn't realize it was quite that high, but, um, what are some of the Anies that the, the report highlights,
Speaker 2:Uh, the report was developed with stakeholders from right across the region, and it looks like a kind of three key, uh, types of inequalities, um, existing inequalities within countries. Um, as I mentioned, that's due to kind socioeconomic backgrounds, gender age geography, they'd all impact, uh, create or exacerbate, uh, inequalities within countries. Then the report looks at inequalities between countries, for example, between countries in Eastern and, and Western Europe. And finally, um, it looks at childhood cancer as a cause or driver of inequalities, which basically means that, you know, a childhood cancer diagnosis can create inequality. It could, if a family's trying to pay for very expensive medicines that could push that family into poverty. Uh, and, and then the there's the, um, the survivorship questions, how difficulties for survivors can continue into adulthood as well. It inequalities impact patient and caregivers experiences. And of course, as I mentioned, it impacts the short and long term outcome for survivors. So it's a really critical, um, lens through which to examine the whole issue
Speaker 1:As an advocacy report. What does it say that countries should be to doing, to address inequities in, in childhood cancer? So
Speaker 2:You're right, Greg, this is an advocacy report. The overall aim is to increase attention at the highest level in countries, uh, on this issue while recognizing that co you know, different countries are working from different starting points and contextual factors are, are, are very different, uh, across the, the region. But the three main recommendations are, uh, number one, invest in data and data collection and analysis, uh, up to 50% of cases in some countries are not captured and you can't make decisions. What I good, good data. Number two is to secure free of charge, diagnosis, and treatment. Um, you know, first and foremost to avoid catastrophic spending by, by families. And this would be in line with, you know, moves towards universal healthcare. And thirdly, um, there needs to be funding for professional training doctors and, and especially nurses to ensure, um, that they're aware and know how to use pediatric standardized treatment, uh, protocols for, for cancer. Now, the report contains, uh, a list, uh, a long list of recommendations to help policymaker makers, design policies that respond to the inequalities. But, um, those three are, are really key. Um, and we hope that all the recommendations these have been identified, um, because they, um, they're likely to have the greatest impact on reducing childhood cancer inequalities.
Speaker 1:So while we can see that treatment and survival rates for cancer have improved in recent years, there remains some differences across the region, but battling cancer remains a hard experience for anyone, particularly at a young age. Aaron Anderson is w HHA Europe's ambassador raising the profile of our work on cancer, a cancer survive for himself. He's achieved some incredible feats, climbing, swimming, and skiing his way around some of the toughest places on earth. We sat down to speak about his experiences in see work. I start by asking Aaron how he first discovered he had cancer.
Speaker 3:Yeah. So what happened was I was seven years old and I was sitting in the car. I was going down to my grandparents in Goldenburg in the west parts of Sweden, I'm from Stockholm. So we were going from Stockholm to Coburg to celebrate Christmas with my grandparents. And I'm, I'm sitting in the car and I get this really strange pain, my bottom from sitting down. And, you know, we get to my grandparents, we celebrate Christmas and everything feels a little bit better, I guess, cuz I'm focused on other things. But like every time I would sit down, his pain would come back. And after about, you know, 10 days, two weeks with this, my mom is like, we need to check this out. Maybe just didn't fall on some ice and hit himself. Like something couldn't be seriously wrong here. So we, we go to, to like a doctor and he just looks it a little bit. And bass says like, no, it's just, it's this growth pains. It's, it's nothing right. It will be, it'll be good in like month or two. But if it's not, you know, come back in a few months. Right. And, and about like 10 days later, maybe on top of this pain, I get this really high fever. And, and at this point it was so bad and I couldn't even sit down in school. So I would bring like a cushion to school. And I was, I was kind of sit down on my niece cuz it hurt too much. I just couldn't sit down. And at this point I also got a really high fever and, and now my parents something feels off. So my mom brings me into the emergency room and you know, I was, I was really lucky cause when I came to the emergency room, like they really took it seriously. They like, they figured, you know, something can actually be, be wrong. So I had an x-ray on like my, my pelvis, my, my SAC and the day after I, I like I got the diagnosis that I had cancer. So what I had was, was sarcoma. So like a bone cancer in, in my, my pelvis.
Speaker 1:Okay. And it was, well, I guess, so it was your parents kind of noticing something was up. That was what then drove you towards, towards getting the case.
Speaker 3:Yeah. And, and I also realized, you know, that I was, I was really lucky that I got such a quick diagnosis. So from when I first had symptoms to diagnosis, maybe it was a month. So it was really, really quick actually got, got to know this girl called, called saga a years back back in cuz her younger brother had seen me on TV and realized that saga had a really similar kind of cancer in her pelvis, her SAC that I had. So, so she contacted me on, on Facebook and like, hello, can I, can I have like a coffee with you? The wanna do surgery? Me really still similar to the surgery. I had to cure my cancer. And we ended up, you know, becoming really, really great friends. But for her, the big kind of difference that separated us was that she had symptoms for about a year before she got the right diagnosis. Cuz she was a girl, you know, she was like 14 years old and the dog were like, oh teenage girls, you know, they complain about everything. It's just, it's psychological. You like here have some, have some ibuprofen right. And go home and, and, and rest. Right. You'd be fine in a few days. And um, it was super, super sad cuz they eventually couldn't do the surgery on her and she passed away 17 years old. And uh, I just, you know, realized how extremely lucky I was that I could have this super, super quick diagnosis.
Speaker 1:Cool. So, I mean, so you're speaking there about that quick diagnosis and I guess that kind of builds into this report. That's coming out about inequities in, in cancer services and particularly for, for childhood cancer as, as well. So I mean you mentioned access to diagnosis, but also ensuring they, they get specialized treatment for example, in facilities that intended for children rather than adults. I mean, how, how important is that as, as somebody who's been through that?
Speaker 3:Yeah. So I mean, I've been through it both as a, as a patient and I've also been to hospitals and I, I visit kids that go for a cancer nowadays and, and like child like cancer in an adult is gonna affect the adult for sure. And it's gonna also affect the family, but even more so in childhood cancer cuz when I had cancer security, you know, my, one of my parents would stay with me the entire time. Because when you go in for chemo, you could have chemo for like four or five days in a row. Right. And one of my parents would sleep with me in the hospital. Like they would, they would, they would get a bed next to me and they would sleep in the same room as me. And that's the big difference with child cancer and adult cancer. Like in adult cancer, you don't have it, you're in the hospital, you're by yourself and your family will come to visit of course. Right. Which is super important, but they're not gonna live at you the same way. So when I just was to, to, to visit the child cancer like facilities in Stockholm here, like a few months ago, they're they have great facilities. They have like play rooms when the kids can go and play. They have like all these kind of super new like VR technology that the kids can can play with, which is like, it's a bit overkill, but it's amazing for the children. Right. And they have like a proper kitchen. If the parents wanna go cook something and they have all these kind of hangout places where they can just, you know, try to be you together as a family at the same time as they're having treatment. And I think that's extremely important for like the, the mental health of not only the child, but also the, the parent. I mean the children get so much support, which is great, but you need to kind of equally focus on the parents Hmm. To, to like make, make them avoid, you know, going through parent or like all the side effects that, that this can give
Speaker 1:Oh, actually something I hadn't really thought about before was yeah. How, how do you bring the, the family in and in that sort of sense really? And um, yeah, as you say, um, they're, they're going through this as well. And,
Speaker 3:And yeah, I mean, I, I had other story was this, this kid that got cancer and was like, he was like four or five years old and his mother had just had a new baby. So the baby was like two months old. So she was in the hospital with the son when he was going for chemo and she had to bring the baby. Right. So she was like breastfeeding in the hospital while looking after there, her other child, child that is going through chemo. So it's just, it's just so, so different to like, uh, adult cancers and uh, therefore we really need this kind of specialized, uh, like child's, children's cancer places in hospitals and it's, it's really amazing as well. How, how far we have come because like I'm, I'm Swedish. Right. And, and in Sweden they started the, the children's cancer part of, of the children's hospital many, many years ago. And they've been running for a few years and, and, and then they said, no, we're gonna shut this down. Cause all the children are dying because the survival rate at that time was so poor. And now the survival rate, like at least in Sweden is like 85%, which is just amazing. So we've become so, so far. And we learned so many lessons during these years,
Speaker 1:I think. Uh, well, what you're explaining there about how, how far we've come in in that sense and, and maybe how things have changed since, since you received your diagnosis. I mean, um, what was your experience with, with diagnosis and treatment, um, after you found out you had, you had cancer.
Speaker 3:So it was really rapid. So what happened to me was that I, I was diagnosed around back to 20th of January, something like that. And my birthday is under 26th of January. So in between that time, I, I got my diagnosis and like straight, when they found like the first tumor, I had a full CT scan on my entire body to look for, for metastasis, right? Like, can we find any other cancer? Like, has it spread in any way? And fortunately they, they didn't. So they knew, okay, this is the tumor we need to treat. And then they did a biopsy of the tumor to see, okay, what kind of cancer is this? How, how should we proceed with treatment? And I also got something called port cat, it's called a Portan in Sweden. I, I think it's the name in English. I'm not really sure. Anyway, it's this metal thing you have under your skin on, on your chest. Like I still have the, the scar from it on my, on my, on my, my right side, on my chest. It, this little metal thing with this rubber and brains. So instead of, of putting needles in your arms, every time you go to, to chemo, so they would put a needle inside this little metal thing. And that metal thing has got like a, it's like small tube connected to, to one of the main blood vessels in the body. So you can deliver medication that way. So I would get all my medication for, for this port thing. So between the 20th and like the 26th, like I, I had the, all the tests, all the x-rays and stuff. I had this, the surgery to put in the port, got done a lot of things like that. And then on my eighth birthday I had my first round of chemo. So, so the process was super, super quick, which I think just, it was amazing. I think that could have kind of been like a reason why I'm here today. Like, and, and they didn't care like this is birthday, you know, can we wait a little bit, like, no, we're not waiting. Just we're doing it now. And I mean, there are so many horror stories with people waiting a long time from diagnosis to surgery or from diagnosis to treatment or, or, or whatever it is. So like in my case, it worked out really, really neatly. And then after the first round of chemo, I had chemo for a little bit more than a year, as well as I had quite a bit of radiation treatment as well. And by the end of this year, like the doctors kind of realize, I said, it's not really successful. Like we're killing parts of the tumor, cuz they realized there was two different kinds of tumors that kind of grow together. So one of them had pretty much died, but the other one was, they couldn't really see any results from the treatment. And they realized like, okay, we need to do something now. Otherwise the risk of the cancer spreading is really high when I was nine after, which was pretty much like 13, 14 months after maybe 15 months after the diagnosis, I had surgery and that surgery meant cutting out the SAC where the cancer was and also cutting lots of nerves to my legs. And that's why I'm, I mean, we wheelchair today. So that was kind of how it, how it went. And uh, then I couldn't sit down for a year, which is pretty, pretty hard. It's pretty rough, you know, when you can barely use your legs. And then on top of that, you can sit down. It's like, oh thank you so much for that. So it's an interesting year. And then like for me, the, the cancer also came back, which was another, you know, a really hard, hard blow, right? I mean you're, you're because I was, I was kind of back to life. I was thinking, okay, now I'm, I'm done. I, I got my wheelchair. I could start living again. Like I beat the cancer now I'm gonna do fun things. Now I'm gonna be child again. Right. But then when I was, was 11, they, they found, I had a, had a tiny tumor in my, one of my, one of my lungs and had surgery for that extremely painful surgery in the lungs. I don't out to anybody. It's not fun. And then it came to back two times more in the lungs and, and this also kind of an Testament to like how, how, how well the Swedish healthcare worked, that we have all these checkups afterwards, cuz you know, if you had sarcoma, especially the risk of the cancer returning in the lungs is, is really, really high. Uh, so I went on a regular checkups on the lung and fortunately like it can be back three times and every time I could have surgery and then I, I got some like not experimental, but I got some, some like pills. They're like, okay, we don't really use this for this kind of cancer, but like we, you try, we need to try something. Cuz the pattern that you see is like, if it starts coming back in the lungs, it just tends to just keep coming back and eventually you can't do anything cuz there's nothing left to operate on. So that's what they were afraid of. And yeah, so I took these pills and I don't know if they helped or whatever it was, but I'm here today and I haven't had more cancer sense.
Speaker 1:And um, I mean you've spoken a bit about, about your experiences and, and your diagnosis and, and, and all of that. Um, was there an experience you had, for example, through, through childhood cancer services that really made a difference, um, during what I'm sure was an incredibly worrying time for, for yourself and your family?
Speaker 3:Yeah, yeah. For, for sure. I mean they, for first of all, just like the, the nurses at the hospital were, were amazing. I mean the doctors were great as well. You don't meet them as much as you do as you have so much more contact with the nurses. And I remember kind of this one time, I, I like, I think I had my, my ninth birthday and I got this big kind of hunting knife from my parents as you do when you turn nine. Right. Uh, so I got this knife and two days later I'm going to the hospital for treatment. And, and when you're nine, you just received a knife for your birthday and you go into the hospital, you want to, you wanna bring the knife, right. So I'm sitting there in the hospital, you know, shopping away on this piece of wood, right. When I get treatment and my mom, you know, she's super scattered, the nurses is gonna see this and she's gonna standing guard. So, so I can hide a knife under the bed. But at one point, you know, my mom's really gotta go to the bathroom. She, she runs off to the bathroom and, and just when she's coming back, you know, she can see this nurse walking into my room and she's like, oh, this is gonna bad. Right. But this nurse, she just walks up to me and says like, oh, what a beautiful life. That's amazing. And I is like, I'm just so happy about that. That cuz they were so like adaptable. They really trying to, you know, see like hospitals kind of our home. Right. I guess you also realized that if I would cut myself, like I least them in the hospital, which is, which is good, I guess, but, but like the attitude was so much like that. Okay. This is like equally treatment by is, as it is a home. Right. Uh, so I think that attitude was extremely important. And then I seen like all the support that is, is given to both the children and also the parents, like today they get received so much support, like to be able to handle their life up, going through this cuz as I said, you know, uh, like if you are a single parent and your child gets, gets cancer, I mean, you're not gonna be able to work. Like you're gonna have to be at a hospital. At least if the child is like younger than 16, 17, or something like that, you're gonna have to be in the hospital a right. And you need a lot of support for that. And then it seems like the support system is at least in Sweden is working pretty well. Of course it's flaws. It's like sometimes you really have to fight to, to get help with things. But yeah, it seems to be working pretty good.
Speaker 1:Okay. I mean, we've come to the end for questions that I've written down, but I wonder if there's something we can speak about with the advocacy of work you've done, you've done since, uh, or at least in the past few years, whether there was a yeah. An experience that, um, to you really kind of, uh, I'm trying to think of the best way to phrase this in terms of, um, you know, uh, something you're really proud of that you've done in your advocacy in the last few years, that's, you know, raising awareness about these
Speaker 3:Sorts of issues. Well, I mean today we, we, we kind of shifted a little bit how we should think about child cancer in, in Sweden. And I think in a lot of other places as well, cuz we've gone from having like a really poor survival rate or maybe, you know, 20, 30% right to now we have 85% and depends that survive today. They tend to come out of their cancer treatment with quite a few issues, right? Like I I'm, I came out of it being in a wheelchair it's pretty tricky. Like you need to find how to live your life. But a lot of kids come out of there with like brain fatigue and, and different kinds of disabilities and like different disorders that they need to learn how to live with. So I think this is kind of the next challenge in child of cancer. Okay. We have a survival that's up, but how can we make sure these children and young adults have a great life even after cancer? Like can they like, can they reproduce after you had like all these key Mo and radiation, all that like can, can like, can they go to school? Can can like, can they deliver like a normal life? And I think we need to put a lot of like focus and emphasis on those areas now cuz survival is up. Are we going to ever get a hundred percent survival? I certainly hope so, but I like think that's really far down the road, but we can make sure that those children that survive have a great quality of life and not only like a great quality of life medically, right, but also kind of mentally and understanding that they can have a great quality of life. Uh, I, I had an event like two or three years for, for like disabled children just to like inspire them and to do sports and show them like what's actually possible for them. And this, this guy called Oscar showed up to this event with his mother and he just had had cancer. He had amputate one of his legs pretty high up. And like he was, he was really depress. He was kind thinking like his life was over. Like he was in a wheelchair it's over, he was a lot of pain. It's like, it's, it's not gonna work out this thing. And his mom kind dragged him out to, to this event. And he showed up there like he was, you know, didn't have a good attitude is just kind looking in the ground. And I, I started talking to him and, and we did some workouts there together and it's just, I thought I did something really to, to give him energy. But later on he told me that I didn't really do anything. I just, I just kinda showed him that, Hey, you know, even though you're in a wheelchair, you can have a great life stop feeling, sorry for himself, like make something good of this instead. Cause he saw that, you know, I like, I, I, I have, I have a good life. I travel the world. Like I, I, I have all these things like he wanted to have in his life, but he thought he did couldn't have. And he, he Mo his mom told me this story afterwards. Like when he, when he drove to this event, he was just so grumpy and tired and didn't a really bad mood. But when they were going back from this event, he was singing and he loved singing. It was the first time he was singing in like two years. And she just like, just saved his life. And today he's on his way to become a professional wheelchair tennis player. So it's amazing. So this is such annoying story and we need more of that. I think as well, people that can show all these kids like, Hey, you've gone through cancer, it's rough, but you can still make something great outta your life. And I think also this children and make it through cancer, they will come through stronger. Like those lessons that you learn in those years that you go through the disease. I mean, you, you will become fricking strong from that. Like mentally, I, I used to, uh, this guy, I, uh, kind of a little mini expedition in, in late November, in Sweden last year. And we were gonna kayak from kind of the outskirts of the Stockholm, March capo into Stockholm to raise money for kids with cancer. And on this trip, we had five young adults. No, yeah, yeah. I was five young adults. Who's all had childhood cancer. So they were like 16, seven years old and they had all different cancer, cancer. Like one was missing a leg. One had, had a brain tumor, two had had leukemia lymphoma, just, ah, they all had different kinds of cancer. And none of them had done anything like this before. And we, we go and have had like six or seven hours a day, like 20 kilometers a day for, for three days straight. It was gonna be pretty, pretty tough. And if you do this in the summer, it's nothing right. But we did it in late November. Like we had minus seven degree Celsius, like it is froze eyes on the kayaks. Like one of the girls actually froze stuck to her kayak. Like it, it was bad, but you know, none of them complained a single word. Like they were freezing. They were like miserable at some point because it was so cold, but none of them were complaining. There was just, okay, let's freaking do this. Like, we're gonna do this. We're gonna make something really great out of this. And we all had an adventure, not like the last day, they all like, oh,
Speaker 4:Okay. We do one more day. We wanna do one more day. We don't wanna go home. You know?
Speaker 3:And it was just so beautiful. And, and they all, I think you come outta cancer, you learn things like it's gonna make you a better person, but sometimes you just need to, somebody to kind of give you the little push in the right direction to actually realize that. So we need,
Speaker 1:That's what we have time for special, thanks to Mave and Aaron for taking pass in this episode, if you want to find out more about any of the topics raising this episode, you can do so on our website or via the show notes, make sure to leave as a rating. And if you like what you've heard, recommend us to a friend or a colleague, Thanks for listening. And until next time, stay safe and stay healthy.