Season 6 Episode 2 When Scott, a childhood cancer survivor turned advocate, and Rosalie, the director of government relations and advocacy from St. Baldrick's Foundation, joined me, Rosaria Kozar, the conversation was nothing short of inspiring. Our dialogue cut through the complexities of advocacy, unraveling how crucial policies like the STAR Act shape the landscape of pediatric cancer care. We shared the often unseen struggles that follow the victory of 'beating' cancer — the continuous health battles, risks of secondary cancers, and the psychological toll on families.
Season 6 Episode 2 When Scott, a childhood cancer survivor turned advocate, and Rosalie, the director of government relations and advocacy from St. Baldrick's Foundation, joined me, Rosaria Kozar, the conversation was nothing short of inspiring. Our dialogue cut through the complexities of advocacy, unraveling how crucial policies like the STAR Act shape the landscape of pediatric cancer care. We shared the often unseen struggles that follow the victory of 'beating' cancer — the continuous health battles, risks of secondary cancers, and the psychological toll on families.
Please always consult with your physicians prior to making any changes to your treatment plan. Music is courtesy of Ryan Hamner. Welcome to Living with Scansiety the Cancer Podcast, a podcast geared to help you navigate the pediatric cancer world. As a mother of a child who battled a soft tissue sarcoma for over a year, your host, rosaria Kozar, understands and will help guide you through your journey. She brings the knowledge of experts, families, survivors and other organizations tied to the pediatric cancer world to your doorstep. Her mission is to inform, support and promote hope for you and your family.
Speaker 2:Music. So for the ambassador I hope I can like raise awareness about like the realities of childhood cancer. I'm excited to attend more like local St Baldrick's events. I'm excited in two weeks I get to advocate for kids on for kids with cancer on Capitol Hill for my 11th action days and I also hope to give sort of like an insider's look on how cancer affects the entire family.
Speaker 3:Hi and welcome to Living with Scansiety. Today I met with two amazing individuals that both have roles at St Baldrick's Foundation, and they're going to talk a little bit about it. First. We have Scott, and Scott's cancer journey started rather young. He's much older now. As you will see in a few minutes, he's a freshman in high school. He served as the opening speaker for the sixth annual congressional childhood cancer summit and submitted formal testimony to the House Appropriations Committee in support of full funding for the childhood cancer survivorship, treatment, access and research, also known as the STAR Act. The second individual is also part of the St Baldrick's Foundation. Her name is Rosalie and in particular she serves as the director of government relations and advocacy for the St Baldrick's Foundation and the co-chair of the Alliance for Childhood Cancer.
Speaker 4:Yeah, so you know, we actually have a really big kind of advocacy day that's coming up in just a few weeks.
Speaker 4:This is one that St Baldrick's works on with actually a lot of other members of the childhood cancer community.
Speaker 4:We're actually all we all work together in a form of the Alliance for Childhood Cancer, so it's about 22 different organizations that all kind of joined together to focus on these specific priorities that we have, and I think it's a really great opportunity for just a lot of different organizations that represent patients and families and providers and doctors and nurses and all sorts of different groups, and it just makes us a really strong community with, you know, one voice that we can really can bring to the Hill.
Speaker 4:And so on February 13th and 14th and 14th is the day that we all head to the Hill we are going to have almost, or actually more than, 200 advocates from all over the country coming to talk about some of our policy priorities. And this year we are going to be focusing on appropriations, which basically just means getting money for childhood cancer funding and then also some bills that touch on access issues and then also drug shortages, which I know is a thing that affects a lot of childhood cancer patients and providers and I think is kind of a very of the moment issue that I'm really excited to talk about in a few weeks.
Speaker 3:And what in terms of the access issues? What exactly is that Definitely?
Speaker 4:Yeah, so that is. It's actually a bill that our community has been working on for a few years. It's called the accelerating kids access to care act that. I always trip over the name, but I think I got it right that time.
Speaker 4:And basically this bill will make it easier for kids with childhood cancer to access care if they have to cross state lines.
Speaker 4:Basically, I think that's the thing that a lot of childhood cancer patients experience is, you know, they live in an area where they don't have access to you know kind of medical centers or the care or the providers that they need, and so they will have to, you know, go to another state to get that care. I'm from Alaska originally and that's a big thing that that child cancer patients in my home state have to do is often have to seek care elsewhere. And so at the right now, if families are covered under Medicaid or chip, it can be really difficult, kind of from an administrative perspective, to get care and get that make sure that you're covered for care if you have to cross state lines. So this bill will make it easier and just kind of make it a much smoother, simpler process for kids to access that care. So it's one that really excited about. I think it affects a lot of families and a lot of kids and I think it'll if we can get it passed, it'll make a big difference in our community.
Speaker 4:And just for the people listening I know what Medicare and chip are, but can you just tell the listeners oh, it's Medicaid, which I'm not sure if I said it wrong the first time, but it's Medicaid and chip, and these are just insurance programs that cover a lot of families and a lot of kids, so a lot of families who are low income or have serious health issues can will receive coverage through through Medicaid and chip. It's really important. Again, I know that a lot of families who are affected by childhood cancer there's a huge financial impact and so it's just something that a lot, of, a lot of families in the space really rely on. It's really the really important programs.
Speaker 3:It's so interesting to me and so many people forget that they can reach out and get public health care, and it seems like something that might be so obvious to others and then others not so much. And, like you said, it's important to it Absolutely. No, it's absolutely.
Speaker 4:I'm so sorry.
Speaker 3:No, that's fine. No, just to have these available for individuals and give them more awareness around it. So that's great.
Speaker 4:Yeah, it's definitely a thing that I mean. I think that a lot of people don't, I think, realize kind of the financial impact that really serious health conditions can have on a family, and so I think, kind of getting access to two programs and coverage and services that we as Americans are entitled to is a huge thing, and I really hope that every family who qualifies for these programs is able to get access to them.
Speaker 3:Yeah, great, and I know, Scott, I don't want to leave you hanging too long over there, so you battled leukemia. Which version was it? Because I know there's like different types, yeah acute lymphoblastic leukemia. Okay, and can you tell me a little bit about that story and how old you were and?
Speaker 2:Yeah, so now I'm 15 years old, I'm a freshman in high school, I was diagnosed at the age of three and then after that I went through three and a half years of treatment and during that time I remember actually kind of a lot of the experience. You know, I often felt like tired and nauseous and weak, and sometimes I would wake up and I would be hungry, but like whenever I would eat, it just made my stomach hurt, and so that experience was really long and difficult, and not only the. Not only were the symptoms like difficult, but if I were to get sick or get a fever, I would have to stay in the hospital for at least two days. So it was also a little bit of a lonely experience, in the sense that I was kept in a bubble to stay away from germs and so I missed out on school and hanging out with friends. But I'm still very grateful to be here looking back on my experiences.
Speaker 3:And a lot of people say, or I've heard a lot of people say, oh, cured isn't really cured, so what does that mean to you? Or have you heard that before?
Speaker 2:Yeah, so I think it's definitely like a common misconception that everything is okay after treatment, but that's definitely not the case and there's still plenty of side effects that are associated after treatment. There's the risk of having second cancers, heart disease, hearing loss, and so these are some of the things that are looked at through the STAR Act to try and help with these after cancer side effects.
Speaker 3:Okay, wow, is there anything in particular that? Maybe did you keep in touch with anybody? I know you were so young. Maybe your parents kept in touch with somebody and you see them going through these side effects now.
Speaker 2:Yeah, so I actually, when I went to the Action Days event for the first time, I met a friend. He was about the same age as me and he had the same diagnosis, and he's now going through his third battle with cancer. He recently just got CAR T cell therapy, and so now we're hoping that the third time's a charm and it can hopefully go away from it this time.
Speaker 3:And do you find that there's a support system for children that have overcome cancer and are now facing these challenges?
Speaker 2:Yeah, so the STAR Act helped as the most comprehensive childhood cancer bill in history. It has definitely helped with some of these side effects in terms of like survivorship, and at school there's like programs to help me knowing like I've had my diagnosis, and so now there's programs implemented at my school to help me get like the resources I need to do well.
Speaker 3:And I see the St Baldrick's Foundation in your background, so tell me about how you are involved with them.
Speaker 2:Yeah, so around the time I was diagnosed it was around Thanksgiving, and my family had heard about the St Baldrick's Foundation as the largest charity funder of child cancer research grants worldwide, and so my dad and my brother wanted to shave their heads to support research, and so naturally I kind of wanted to do the same thing, follow what they were doing, and so I had asked my mom and I was like really enthusiastic about it, but I think she was definitely a little bit hesitant and sad because she didn't want me to like take on the stereotypical, like cancer kid look, for as long as, for as long as possible, you know like she wanted me to stay the happy and like joyful kid that I was, but I was really eager to do it.
Speaker 2:So I kept asking her and then she finally agreed. And so, looking back, I still remember the day that I shaved my head with St Baldrick's and it really had a big impact on me because after my diagnosis a lot of the opportunities to be a normal kid were sort of taken away by cancer, and so it empowered me to shave my head because for the first time since my diagnosis I was able to like lose my hair on my own terms like so and fast forward to now. We sort of stayed close to the St Baldrick's community and now I'm really eager to be a 2024 ambassador for the foundation. That's fantastic cancer on Capitol Hill for my 11th Action Days, and I also hope to give sort of like an insider's look on how cancer affects the entire family.
Speaker 3:And it's interesting because you brought up the entire family and my son had cancer or he's passed, but it does. Really it is almost a disease for the whole family. Really, you were affected the most going through the treatment and how did you see it affecting your family, and are they still affected today?
Speaker 2:Yeah, so in the ways that it affected my family, my parents were already like my sister was just born around the time I was diagnosed, just a few months before, and so they had to juggle a lot. By the time I was diagnosed I remember a lot of the experiences I had were just being in a hospital bed with my dad, so it was a huge time commitment. And it was a commitment for me because they were really responsible for how I would take my medicines. We had like a schedule so I could take all my medicines and the appropriate doses, but also my siblings. They tried to not lose as much attention and so they kind of kept me down to earth. They were really honest with me, and so I really appreciate that a lot.
Speaker 3:Yeah, I can imagine just kind of keeping things like a sense of normalcy. If you had advice for a parent that is experiencing their child going through cancer, what would you say to them?
Speaker 2:Yeah. So I would say stay motivated, because for the most part, I think your child may actually know more about what's going on than you think they do, so I think it's definitely important to keep working, even if it seems like there's no end in sight. Having looked back, I'm so thankful that my parents worked as hard as they did to make sure I took the appropriate doses and kept me on the schedule that I had, and I'm just so grateful for everything they did to keep me safe, and that's why I'm so happy to still be here and have these advocating opportunities.
Speaker 3:And when you speak about happiness, there's also the other side of the coin in terms of school. I don't know if you've seen it with some of your friends that have gone through it, but I've heard a lot about it and that's bullying. Have you or did you experience that? Or do you see friends that had cancer experience that?
Speaker 2:For me in school there was a little bit of insensitivity. They kind of didn't understand the experiences and the challenges that well. But overall I think the teachers were very accepting of what I went through. There was a little bit of impoliteness from peers.
Speaker 3:And how did you handle that? How do you handle questions that are inappropriate?
Speaker 2:Yeah. So if they have honest questions about my diagnosis, I'll definitely try to address those, because I don't really see there being any good in being closed off about cancer. If I have the opportunity to spread awareness, I'd definitely like to do that. But if there's insensitive questions I'll try to just ignore it because I know the challenges and I am confident enough to go seek help if I need it for the most part. But I'm also like I know they don't know what I went through.
Speaker 3:Exactly. You don't know, unless you know. I hate that, it's a little cliche, but it's true. So thank you guys. So much. Is there anything else you'd like to share?
Speaker 4:You know, I think that I one thing that I love about kind of advocacy in this space and, like I mentioned, our upcoming action days later this month is just the, the role and the value that advocates and you know, members of this community and people who've experienced childhood cancer. It's kind of the incredible role that they've played in really getting the federal government to take action in this space. You know, I think, that I mean with with childhood cancer. You know, when we're talking about new drug development and and research and advances, it's really not a thing that we can rely on, you know, private industry to do for us. So we really have to focus on, you know, making sure that the federal government is really invested in this space and I think that that has really paid off.
Speaker 4:You know we've seen just huge advances, you know, over the past 10 years or more, and how much money the federal government is investing in childhood cancer research and it's led us some, you know, incredible advancements and it's just really, I think, an area where advocates can look around and really see an incredible impact.
Speaker 4:So it's just it's a space that I'm so proud to work in and I'm so enjoyed meeting just incredible volunteers and advocates in this space who I think can can really show the difference that they have made. So I think it's a great space to, to, to work in and to. You know it's an incredible community and, yeah, I just I feel like I've learned so much from advocates about you know how to really talk with lawmakers and the offices, with a lot of expertise, a lot of empathy and, just you know, really talked about why this issue is important to us, how you know legislation can really affect families and survivors and researchers and providers. I just I think that there is it's a really incredible space to see advocacy, see the fruits of our efforts here.
Speaker 3:Yeah, and I don't know if I asked what is the mission of the Saint Baldrick's Foundation.
Speaker 4:So I think that I mean we fund childhood cancer research. I think that is very basic and I think that that I mean. One thing that I think a lot about you know, in terms of why Saint Baldrick's exists, is kind of what I mentioned earlier is that we cannot rely on, you know, private companies private, you know pharmaceutical companies to do this research. We have to fill this gap. So, yeah, the Saint Baldrick's Foundation, like Scott said, is the largest funder of childhood cancer research. We do incredible work in this space and, yeah, I'm so proud to work for Saint Baldrick's.
Speaker 3:Well, scott, one final question for you. You are a freshman in high school, so where do you see yourself in 10 years? Where are you going to be? What are you going to be doing?
Speaker 2:So in 10 years? How old? Okay, so, yeah, so I'll be about 25, right? So out of college, maybe Duke for Engineering, we'll see. Maybe NC State for Engineering, I'm not sure. But I think I probably like to start as a biomedical engineer. You know, spent so much time in the hospital. I really want to do what I can to, you know, maybe make a difference in the field of childhood cancer research. So I think engineering is a field that definitely like piques my interest.
Speaker 3:That's great, because we need more people that have that type of you know just engine behind them to work hard, and sometimes it does come from those that have been heavily affected, and I am so sorry that you experienced what you did and I'm so thankful at the same time that you participating in the advocacy and your future goals are just so appreciated by the community, and I wish you all the best.
Speaker 2:Thank you so much.
Speaker 3:And what is the website? Oh sorry, scott, go ahead.
Speaker 2:I don't know. Have I just add one more thing? You know there's a lot of scary statistics surrounding childhood cancer. It's actually the number one disease killer of kids in the US, and one in five kids diagnosed unfortunately will not survive, and you know these. These are really like devastating, and so we would seriously love for any like any more advocates to help and join us to advocate for more child cancer research. It seriously means so much to the community as a whole.
Speaker 3:Do they have to be from California, because I know that's where you're located?
Speaker 4:No, we're. I mean both St Baldrick's and the Alliance are national organizations. We have volunteers from every state.
Speaker 3:That's great. So what's the website that they can go to to sign up for or help to advocate?
Speaker 4:So we are the St Baldrick's Foundation and we. There's amazing opportunities that St Baldrick's does in terms of advocacy, and then we're just St Baldrick'sorg, and then the Alliance for Childhood Cancer, which hosts this action days every year and which we will have in a few weeks, is AllianceforChildhoodCancerorg.
Speaker 3:Okay, well, thank you guys so much and thank you for joining me.
Speaker 4:Thank you so much for having us.
Speaker 1:Thank you for tuning in to Living with Scansiety. Please subscribe to hear more informative discussions like today's.