Chordoma Care and Insurance Discussion

Uh, so, uh, we have, um, the more slides. This one that we did last year. We'll have those out pretty quickly. Um, what time is this? Half an hour. We have half an hour? Yes, all right. So for fifteen minutes, so, um, expecting to have the late table to Uh, actually last time, and then the obvious announcement of when actually goes, um Into the app so that we can support them and then, um, and then look together for maybe five minutes over the end and kind of get different things. But, um, I don't know. I was like, open up your eyes, Mike. Yeah. Yeah, I'll go there. No, don't go there. Okay, no, I'll, take the exit niveau. But, uh, one extra name was nobody covered at the moment. So friends is, you know, move over. Alright, so the first question is which efforts do you think make the biggest difference for patients and family? After what you listen? Kind of equivalent the the priority side exactly and exactly like I would say having the formation website and the data Yeah may I ask like currently how do you get the information like if you need this type of you know guidance that you Perfectly go to the Codoma website or do you check the email? I mean, that's what all we have. My opinion. I mean, once we all do the media Okay. And, uh, your small. We also use, uh, AI to find clinical products. Oh, yeah. And we talk about the AI part, like how, how, you know, people comfortable using AI as a way to find advice. Like, do you, always go to AI and and just confirm with someone else? I see. I think this clinical time that's in Dr. Cotter, right? We saw another one from I do and the square and sound. Hey, I would say, uh, we kind of happen. Like making for my doctors, know each other. You love each other. If you are doctor part of the Not mine anymore. Mine was like more. I saw Dr. Lee at Mayo. He trains all the ones that are on there. And then Dr. Kassam trains Dr. Gardner. He did my Indonesia. And then Dr. Beast with my. So none of them are on there because they've all like crazed everybody else. Um, but my first start, I think having the website is so such a difference. So like if I go to the emergency room and I'm like, hey, I gotta put them on, nobody knows how I'm like. Okay. Look at more question too. What are you still unsure about? I would like to better understand about this plan. How can we help with that? So we have to talk about, you know, all the consensus, you know, software recommendation, how that evolved over time. And we have a pediatric station in the virtual world, and now you hear about, uh, uh, uh, tobacco shape, right? Recovery. The charts that you have kind of made it self-explanatory a bit, so that does help all a lot. That, uh, picture where there's so many roads around that region. Yeah, yeah. So having something like that on the website, again, you know, you can have a chance to go back to the. Yeah, you can always refer to it when you need it, you know. And she's right, too. You should always, I guess, talk to your primary or your whoever's doing your, uh, treatment, and just say, hey, uh, my foot's gone. What do I need to do? You could probably get a lot of information that way also. So the next question is What do you think still are still the biggest gaps or barriers for getting best possible for the machine? You know, I, I think, I feel strongly about that one because I think the initial, before you even know that you're gonna be joining this community, um, you know, and I don't know how you can improve that, but we just, we didn't know where to turn to. You know, we think I had something in my brain we're gonna use a brain surgeon, which is okay, but we needed someone that specialized in Kodama, but you hadn't the tool, zero, you know? Nice, yeah, go ahead. I think part of the insurance companies need to be educated. We let people go to Kadama specialist out of state. Instead of trying to keep them in state. So that's why we did not get the optimal care initially because we have to stay in New York State, even though the special was for us for a Boston. We were not allowed to keep the state. Yeah, that's a big incentive for them to keep the patient within their state network. But that's complicated the best carriage again, right? So, like, if you want to go to the doctor, I'll, I'll say you have to argue with the insurance again. In my case, was an investigation or luckily the insurance plan I had was a multi-location, which was through a, uh, company that was for it was based in Texas. I lived in Michigan. So they had to offer National care. And had they not, and I worked for a local company offering local insurance, it wouldn't have been the same off. And there was nobody in local that I could have accepted. And even if So it's mostly the financial part, or it's like the physical kind of, you know, uh, patient health. all related to that. It's not just even guineas for that, that's outside area. Have you heard about this, like, travel assistantship, like Josh mission? I'm good on my There's another thing that needs to be improved, um, as part of the clinical trials, like our clinical trial, clinical trials in California. We do not have a local doctor to go to if he gets complications. Oh. We do not. We would have to go from New York to Boston or to New York City, but nobody within Lek and I will dig them if we developed certain side effects that he could be treated by the way. Maybe even just having a conference that is possible that My mom's back Cordona. Your mom has Cordona. I mean, not too many of her children. Childcare, but like a house. My mom's backwards, none of her friends. I mean, none of them is interesting. So that's for families with children, and if they want to come to this, we need to have a, you know, place for them to top off their kids where you, you're sitting here, right? I thought about that earlier, man. Yeah. That's very true. Yeah, I remember you saw on the major kind of cancer recent conference event before. They actually have, uh, kind of a childcare program. You can say they jump up your kids. They are like playing with other kids after People dedicated watch them and you go to the conference and then you'll pick them up after the conference at 5 p. m. You bring them inside of the hotel, uh, Would have liked to have women on her view information on her app. Yeah, that's like the. Yeah, the application themselves, right? Like, yeah, like either, she, she's, right, yeah. Yeah, like a more pay just like we have spend money. Then I went to the next school to get it together. Do you always target? Last question, uh, how do you like Patient and caregivers being involved in shaping improvements in Obama care. That gets we already covered a lot of that. Yeah, this group right here, they're taking the feedback from all of us. Definitely, you know, they hear what we need and what we're saying, yeah. You feel like you have a channel that outside which can We only have this once at a quarter per year. You have either channels to bring feedback, uh, suggestions, like to our foundation, so we can hear you all the time, not just like once at a three year. You feel like you have someone to talk to? I mean, just having the patient is out there. And then you got a new one off there. Very specialized, so she cannot operate it from the current perspective. Helping those people out there, and we know about it. Um, I think it's easy for us people that are newly diagnosed and trying to find a role. Um, Sharon is not the way she very shy is not the key. Right, yeah, you know. I, I don't know the answer, but I can find out. Yeah, maybe assume that having my telling she's our good manager, yeah. She would have. She probably know our behandeless, you know, I'm sure. Yeah. Yeah, I'm on more on the witness side, but this is all good to me. Yeah, yeah, that's great. Oh, I see. We have some optional questions we can keep discussing. So, like, say, uh, of the care improvements you've heard about today, which would you, which do you think should make a biggest difference for patients and families? Why? Like everything is open, like what, what would give you the most, you see the most helpful, uh, change? Are there any particular things your personality? Not less clear, and you want to find more information that's a little bit more? I would like more information on nutrition research. Nutrition research. Oh, yeah, yeah. Like there was very little fruit to eat for example for people on a keto diet. Meats and vegetables. And, uh, no grains, no sugar. Yeah, I see. And there's no, nothing about that at all. That's true. What's the graduate over? We are talking about a few hours Couple questions. Sorry to consider. Similar to what we already discussed, like, like where do patients still have to create this difficulty finding the right expertise and getting expert guidance at the right time? I guess, like, getting back to the information access, you feel like there's a barrier for you to get information? Like, are there? What gets in the way of patients actually receiving the CAR to export trackness? I guess financial part of that, right? I mean, like, I am not saying IK, but I'm saying that. So people, people on Medicare, they have very limited They have their alternative. Well, based on med which Medicare. Right, exactly. Are you ABC or ARD? I have government Medicare, not the Medicare advantage through a local health. So I can go anywhere I want in the country. Well, yeah, I've tried here a lot DC. For like on Facebook, we see a lot of like Yeah, yeah, subvental with your Medicare. Pardon? Yeah, subvenle insurance, which you're Medicare? Yeah, with it, yeah. Oh, you mind, um, with? Um, just it's free for off in Michigan. Part because I used to work there, so I knew it. Well, um, and I, I mean, I was in health insurance for like thirty years. Um, yeah, I mean, had I not been diagnosed sixty three, I was on the path to choose Medicare Advantage and have a local plan. But as soon as I got diagnosed, like when it came time to involve Medicare, it was like, I'm going Plan that I can go and see my doctor in New York because I'm getting Houston. I want to see somebody in Houston that MD Anderson in five years, I want to be able to go down there. In our case, the same thing. Um, I think that just opened up so many doors, you know, and not any restrictions. As far as bills and stuff like that, I don't even think about it. That it does, but you know, I just, I just remember asking, um, MG8s that we're thinking about doing it on their own, you know, just coming on because, um, they were like, Well, to do a course of proton is like three million dollars. well. We're not gonna be able to pay for that. So as far as obstacles, insurance, limitations is one of the biggest ones. Very lot unclear. Well, I think the other one too is in. I think somebody asked the question earlier when they do actually develop a drug that is approved insurance. How much do we cost? You know, very true. want one multi treatment, it's gonna cost me a half million dollars. It's like then you have to make that decision whether because it may still not be covered by insurance, because even though it gets accrued, gross insurance is still won't cover those types of things. And so you pay not a positive. Hey, this is what you need. something's very simple. There's funny consultant that could, that can come forward and give you, you know, stop that at the box. How to deal with the certain things. I know when I wasn't, wasn't insurance. Looked at plans, but we still had, we had centers of export for people that had unique things, and it wasn't offered locally. So we said you can go to Mail Clinic if you have little pay for there, and we'll pay for it because we think while you might have a local health plan, we talk to the Cordoma Foundation across the local health plans because they can because there's a big organization that is an association for local health plan called AH, and you go to them and say you establish a Fordoma Center of Experts in maybe three or four locations. So having a foundation establish an insurance consolidant as provide their advice to all the patient with their family and navigate those how insurance. That might be something that the foundation could look for To the future after 2030, If some of these drugs do prove to come out, and they do have prohibitive costs, maybe the foundation should plan for that now. And I don't know, maybe they can offer some type of group clean that we could pay into, you know. I, I don't know how many members are there in the foundation, uh, the Doma Foundation, do you know? don't know. That patient number. Yeah, yeah, I have no idea. Uh, if there's a thousand patients, you know, maybe they could come up with a plan where we're paying a hundred dollars or two hundred dollars a month to get the drug that, you know, that we can't afford instead of not getting it at all. It also kind of impossible I'm doing because I'm doing a lot more on the surprise carbon side, right? That's a lot of ways we can, position and make a drop for this Target, but if I think deco, I will go on the using the troops that with lowest cost, right? That's I think that really benefits if you have a shield that people can pop every day instead of like the injection population with carbon make and long term storage having, and have to go to certain centers to get a treatment to make, you know, we definitely populate not convenient and cheaper. Like not a like a cell therapy which is half a law and really hard to be treated for like a mother. Yeah, that's where my group goes, we'll have to have this conversation that really helps everyone easy to catch the club and not enough a lot. Yeah. Yeah, it's very important. Maybe they can do some type of govern--, government work too. To lobby for a group like this, since we have a rare cancer, and we're just not gonna compete with like a breast cancer and lung cancer where these drug companies can make their money because of the volume. you know, rare disease should be something that, you know, even the politicians can look at. Yeah, I'm reading, a book about the 60, uh, physics fibrosis Foundation. So the new pill that they have? Phenomenal. Like, like how they work, you know, through this, this thirty year, thirty one days. Nobody knows what half that disease until they find many jobs. Right, and then now there's a few pills, and everybody is living like way past, like almost. It happened about like two or three years ago. Right, right, yeah. We're on a preliminary part, so we don't see her yes. You had that on Nova a couple of weeks ago. It's weird. I forget what the girls call. It's like some weird name. Yeah, no, the name. I always forgot the name of the president. Like I always think maybe someday it's a home. Yeah, we're not here. But it is like, it is just quality of. Yeah, it's just make it make the disease more controllable chronic disease, right? You, know that the tumors no longer extend that list, right? And maybe even force better digital drinks and that. Well, how they got to it? Yeah, it's a long journey, but what I hope At least on the drug discovery side, we don't have to go through a lot of like TIPFOS labels. Because at that time, the drug recovery approach is really limited. And now we know much more about how to make it up. So we can directly go to the class most efficient way to get it. Cool. Thank you for feedback. I'm going to come to the survey. Yeah, thanks. No, before it's a roll. looking at