Empowered by Hope
You want the best possible quality of life for your child regardless of diagnosis or prognosis. Raising a child with medical complexities is often lonely, scary and overwhelming. Join two parents of amazing children with rare medical complexities, Emily K. Whiting and Ashlyn Thompson, to get help and grow with them into empowered advocates for our kids. Here you’ll find a community of support, encouragement, education and resources, equipping you to navigate your child’s medical complexities with hope. To get more personal support, connect with us directly at www.ParentEmpowermentNetwork.org.
Empowered by Hope
Creating Compassionate and Accessible Healthcare Systems with Melissa Paige
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Step into the empowering world of healthcare advocacy with us as we welcome the inspiring Melissa Paige, Co-CEO of the Healthcare Advocate Summit. A recognized expert in patient access programs and navigation, Melissa combines her extensive medical knowledge, diverse pharmaceutical expertise, and leadership skills to drive process improvement and redesign workflows that enhance efficiencies in healthcare. Her unwavering passion for the well-being of patients fuels her relentless pursuit of breaking down access barriers and advocating for the highest quality care.
In this episode, Melissa shares her extraordinary journey as a patient advocate and entrepreneur, offering unique insights from her career. As an outspoken advocate, licensed pharmacy technician, and educator, Melissa has dedicated her life to making healthcare more accessible and compassionate. She applies the "Know, Think, Feel, Do" strategy to every endeavor, creating remarkable and meaningful experiences for patients, caregivers, and industry professionals alike.
Together, we explore the intricate landscape of accessing medication for rare diseases, drawing from Melissa's personal experiences as the eldest sibling of a brother with Duchenne muscular dystrophy. Melissa sheds light on practical strategies for overcoming obstacles in the healthcare system, including the critical role of financial counselors, pharmacy technicians, and advocacy organizations.
As a co-host of the Healthcare Advocate Summit, an annual conference For Advocates, By Advocates®, Melissa highlights the importance of collaboration between pharmaceutical companies, advocacy groups, and patients in addressing the unique challenges faced by those with orphan rare diseases. Through engaging discussions, we underscore the power of asking "why not" to push boundaries and inspire persistent advocacy, ensuring no one feels isolated or overwhelmed in their healthcare journey.
Join us in this vital conversation that champions hope, compassion, and collaboration in the fight for better healthcare outcomes.
Connect with Melissa Paige:
LinkedIn
Healthcare Advocate Summit
National Association of Medication Access & Patient Advocacy
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Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon
Whether you've just been blindsided by your child's diagnosis or you've been in the trenches of their complex medical needs for a while.
Speaker 1:Empowered by Hope, is here for you, though we wish you didn't know this heartache.
Speaker 2:We're so glad you found us, so together we can walk this journey in hope.
Speaker 3:Hello everyone, welcome to the Empowered by Hope podcast. It is your co-host, ashlyn Thompson, and Emily and I are multitasking today, which means we're both taking care of two different things for the organization, because we both have agreed that neither of us are actually capable at truly multitasking and achieving things the way that we want to to the standard that we want to. So that is how we are splitting our duties up this morning, but I admit I'm feeling extra lucky because I have the opportunity to introduce you all to truly a powerhouse of a guest this morning. I think when you hear this woman's message today and what she has to share with you, I think it's going to get a lot of you feeling the same inspiration and really hope that I have been feeling since I started following her.
Speaker 3:And this amazing guest is Melissa Page, and I'm going to read just a small blip from her bio. So Melissa is the co-CEO of the Healthcare Advocate Summit and her career journey has been nothing short of extraordinary and, I will say, doing a deep dive into her. I fully support that. That statement is very accurate. She's an outspoken patient advocate and entrepreneur. She has paved her way to success and is determined to make a difference in the healthcare industry, and I absolutely love that, because when I had my first conversation with Melissa, the thing that we connected over and I felt this from her immediately was that she and I aligned that we are both committed to being a part of the solution for improving our health care system Right, not just being another voice to point out the issues with our health care system. So with that, melissa, thank you for joining us here at the Empowered by Hope podcast. It is so great to have you and I would love for you to introduce yourself in the way that feels right to you, hi there.
Speaker 4:Thank you guys so much for joining and Ashlyn, thank you for this invite. Yeah, I, you know. When people ask you, well, how do you introduce yourself? And I think I'll start off with.
Speaker 4:I think what we all have in common is there is somebody in our lives that we have either fought for or advocated for, or is why we're doing what we're doing.
Speaker 4:The roles that we all carry in this advocacy space, in being a caregiver, you know, sometimes I mean especially a caregiver some of these roles we we don't ask for, but we're blessed with and that's how I look at it right, that we're able to help out. And so every person that I have met along my journey has had empathy and they care, and I think those two things will qualify you for any type of advocacy. And it's really those two. It doesn't matter about the degree, it doesn't matter about how far you made it up on the chain, it's empathy and you care. And so, with my role and what I've done, you know, just overall background, I'm a licensed pharmacy technician, very proud licensed pharmacy technician, and kind of taking that non-traditional path of just finding where I fit. And, Ashton, I'll tell you today. I'm still like, okay, what do I want to be when I grow up? Right, I never want to stop asking that.
Speaker 4:I know you know, you, my kids are asking that and I'm like, well, mom's still trying to figure it out too. So a little bit of background about myself. I am the oldest of 10 kids and my youngest brother had an ultra orphan rare disease, duchenne muscular dystrophy. And so at age 14, you know that's when I found out the name of this disease. I tried to put it in the Internet and there were things on there. As a 14 year old I didn't understand. Except, you know, I knew he wasn't going to walk one day and I can understand that. So as a sister, I was like all right, I'm going to do everything I can before he stops walking, right? Is that hikes? Is that trips? Is that like? I mean, as a 14 year old, you know, oldest of 10 kids, that's like what I had in my heart of how I could advocate, and I didn't even know what the word was. And through this you know my, my mother and my father both worked right, one was a mechanic, one was a waitress and we lived in Utah.
Speaker 4:No-transcript. Continue to ask myself along. This is I say why not, why not? And you need to keep asking yourself that because you need to keep challenging and going and figuring out, like we know where we sit as a caregiver or as a mother or me, you know, in the healthcare system, but what happens before me? What happens after me, like how is my piece important? And so I think continuing to ask those questions is good.
Speaker 4:But when I went into my role, right, I've done everything I could with. I say it's a half certificate, right, it's a licensed pharmacy tech. So we really didn't get the eight by 11, but I got the five by seven. So I'm like, all right, what can I do with this certificate? And I've been able to advocate with this, I've been able to help patients figure out how to afford their medications, how to get it approved, and the passionate advocates and right empathy caregiver and I think a lot of parents and caregivers are the same way.
Speaker 4:Once you find out something, you want to make it easy for everybody else. Right, you almost feel like you have that obligation now and you do you need to shout it from the rooftops because it took me 10 years to figure out something and it shouldn't be that hard. And so for me working in my health system, that I did. You know we had patients come in. I'm like, oh yeah, I can get you free medication, right. Well then they came in and they're like, well, what about my infusion medications? I'm like, oh, that's billed to the insurance. Like I don't know how to. I don't know how to give you something to leave, right, all these different processes.
Speaker 4:And so what I found out, and you know, for this call, I found out there are resources and it normally starts with you know, once you get diagnosed, you have a lot of options or maybe clinical trials, or you know, there's all these things thrown at you and I would always go to my patients and I say, take my cards and I would write medicine, medication on the back. I was like, just take my card, call me later, let's talk, I'm going to help you through this. And you got to prep that patient, right. And I prepped my patients in a way of we're going to get through this, we're going to get denials, let's just expect that. We're going to go through where I need you to be with me. And, ashlyn, I joke, I feel like sometimes I'm almost selling like a free cruise. I'm like, come on, stay with me, don't leave. Like I need you. What's your favorite cereal? You know, I joke about this all the time, like I'm here with you but you need an engaged caregiver and patient because that's what's going to help us. Your voice, the patient's voice, the caregiver's voice, is so much louder than us at the health system, with the payers. And so if I can arm you with kind of the tools and things that we've seen work, that's great.
Speaker 4:And on the flip side, if you heard me on the phone, especially with my rare disease patients, my patients who had diagnosed with rare diseases, adults and children I would be on the phone and I knew the pay was going to deny. So like why try to fight it? And I would get on the phone I'd be like, okay, here's the paperwork, this is what we supported. Like how quick can I get a denial from you so I can move to the next step? Like let's not play games. We know it's going to go to two. I'm not going peer to peer.
Speaker 4:So I knew that I needed to accelerate the pathway to a peer to peer, then request a physician that is in that disease state, then train it. And it's all this process to get a peer to peer right that we're doing behind the scenes. But when they call us at the hospital, ashlyn, it's like hi, I'm here for you know, medical record number 123. And I'm going to do a peer to peer to get me a doctor and you have two minutes. Okay, we're at a hospital. How am I supposed to, like, track down something? They don't want to wait for us.
Speaker 4:We've done all this prep work and so you know, you've got some teams and the way that we did it is I trained all of my pharmacists. I had, like the case ready to go that when somebody called me in my bat phone, my cell phone at work, I could loop in somebody, right, and so there's a lot of people behind the scenes and sometimes you don't know who it is. And if you're going into a health system or a clinic I would start with, you know, ask who the financial counselor is, right, that's one step, financial counselor. Go to even the outpatient pharmacy or the pharmacy and ask who helps out with copay cards. Right, there's somebody who's helping out with these roles, or maybe the nurse navigator that you're working with, or the team For health systems. We encourage and they're still getting built today, ashlyn, but there are medication access coordinator teams and there needs to be in this, right, there's a lot of things.
Speaker 4:You fill out an application. Sometimes they're eight pages long. You don't know what you get with it and it's not for you to worry about. That's for us at the healthcare system. Right, I know, if I could just get these signatures, I can get your income documents. I'm going to try to get this approved from the insurance. I'm going to see if there's any. They call it bridge or they call it like a bridge program or a quick start program, right, some sort of temporary. Let's get this patient on treatment as quick as we can. As we're working through it.
Speaker 4:Sometimes you get a denial, sometimes you don't, and what you're going to hear from me on this call is every pharmaceutical company is steps. It may have 100 steps, but you know we're just trying to go through this. But I think what you, as a patient and caregiver need to understand is that you don't have to understand it all. There are other roles, there are other communities. If it's not in your health system, if it's, you know, through our community which we started. It's the National Association of Medication, access and Patient Advocacy, and we get questions all day long and it's not necessarily that we're resolving everything, but what we are doing is giving you the next piece or that next ball of where it needs to go. You know, sometimes we have patients say I can't afford my copay. And great, here's this website. This is where you go. Take it to your nurse If they don't understand how to do this. Here's our number. We've even called in to educate that team. Because behind the scenes right, what people that don't face with the patient there's this role called field reimbursement, like field reimbursement managers, called field reimbursement, like field reimbursement managers. There's somebody there as my advocate, out in the field to help me understand their pharmaceutical company and their programs, and normally the caregiver signs permission that hey, we're going to, we're going to fight this together, we're going to do this together, and you know. So.
Speaker 4:There's a lot of things I think in the rare disease space. You know, let's focus on this there are a lot of patient engagement leads or patient engagement, family access managers, like somebody there for the patient. This is complicated. Myself, I get you know this is not a bill in my mail all the time and I'm like I don't even want to deal with this, like I do this for a living time, and I'm like I don't even want to deal with this, like I do this for a living. But when I get it, I'm like, okay, this is really a bill somewhere, but it's just like the precursor of will my insurance pay for it? Right, you know, my, my call for any pharmaceutical company I think they've done a really well job is there's gotta be resources for the patient.
Speaker 4:And if you don't know what is available, or even before the drugs, right, even say you found something on a chat group, or somebody else with a certain mutation or disease state that you're like, hey, they're taking this. I wonder if this is a. This is something that I can do, but I want to know. You know, for my, my child or myself, you can call into the pharmaceutical company even before talking to the doctor, like you can ask on your own of hey, what type of programs do you have? What does my doctor need to do, just in case? Right, sometimes the doctors are like, hey, I'm not sure if that's an option or this is really hard to get, because the last thing they want to do is they don't want to set you up for failed hope. And I think, if you, you know, come to the table.
Speaker 4:And when I worked at a pharmaceutical company, right, let's talk about my journey, my last role. I actually got to support Duchenne muscular dystrophy and I got to help with our patient engagement lanes and the programs, and so you know, come full circle. On the other side, the physician's concerns were hey, is there just a quick way I could just see if the insurance will pay or what steps? I don't want to drag my patients through too much, too much stress, because this may be their last option and they've been through this seven times and that's the last thing that the physician wants to put families through is here's another choice, here's another one.
Speaker 4:And you've just been hitting, you know, wall after wall after wall, and you get fatigue. But the physician still kind of wants to know too. And so I think you know on the other side, just know that there is a lot of conversation around. You know on the other side, just know that there is a lot of conversation around you know that patient journey, also getting patients involved more, which I fully advocate for right, not just before the drug launches, but continue all the way through advisory boards, patient feedback on something, because you know, you know your kid, you know your child better than anybody else, you know your health better than anybody else. You know you're better than anybody else, right.
Speaker 3:Yes, so true.
Speaker 4:So you know there's, there's just a lot of things, and so I think my call to action for anyone is that you know there's a lot of products, there's a lot of work that goes behind the scenes on these patient facing websites. Right, they try to make it easy, but I give the websites an F if I can't find something in less than three clicks. Right, like how are you guys supposed to know? But I would just suggest, you know, look for the words affordability, reimbursement, something there's. There's something there with some number that will say, you know, 1-800-my-access-something or patient support. There's usually something like that that you can call and that call center is ready for every question that they think might come in to just help you. Right, and you can call in as many times as you want. They're there from you know, sometimes 7 to 8 pm, and so you can educate yourself even before you go into your physician or work alongside the team.
Speaker 4:And you know we had a lot of engaged patients and caregivers who wanted to help and I love that and I loved that I was able to explain kind of these steps. Or we had patients and caregivers that they just didn't know what to do. I'm like, just sign here. Here's what I need, and it's just you got to get that pulse check with every family because either they're newly diagnosed or they've got dropped out of a clinical trial because they stopped, or you know they're all these journeys, or you've been traveling to a center every single month for four hours driving because you don't live next to this center, or maybe you're traveling outside of the country, or you know you have the means but a lot of people may not. And so I think from my end and I know I kind of just went into like my journey in going into this is that there is a lot of resources out there. It's not meant for everybody to understand how quick you can get it, but there are people like myself, like other medication access coordinators, that this is all we want to do to help and we just want to make sure that you feel engaged.
Speaker 4:And if it's too much, right, you hear me and I'm talking really slow on this. Call Ashlyn. You heard me before. I'm just rattling away, but you know, tell them to slow down. Or call Ashlyn, you heard me before. I'm just rattling away, but you know, tell them to slow down. Or tell them to ask. You know to explain something again, and that's okay too, so I'll just pause here. Thoughts, reactions this is kind of where I'm I'm at. Is you know how you want to take this call or this podcast?
Speaker 3:So well, thank you I. I wrote down so many notes while you were talking about that and I just want to pause for a second and point out to those who are listening, if you haven't gathered yet, the reason that I was so excited to be able to ask Melissa to join us is because you know, emily and I talk very consistently about how critical a strong support circle is on this journey and you know, a lot of times we people will have somewhat limited view of what makes up your support circle, melissa. You just gave us several different avenues and several positions and you know resources out there that can become part of your support circle that show you do not have to do this alone, because I think a lot of us feel like we have our insurance. You know, if we have an insurance card, our only option is to talk to the person that's at that 1-800 number on our insurance card and if they can't help us, then it's game over. And, melissa, you were showing us, you know you were proving that's not the case.
Speaker 3:So I do want to ask a couple questions that came up that I'm I'm thinking some other people might have. So just quick question. So I want to back up all the way. So when you were sharing, thank you for sharing the story about your brother, and I mean, oh my gosh, you know my heart hearing you talk about that. Thank you for sharing that. It's a beautiful story and I just I love where your 14 year old mind went. But I wanted to have the ask you to can you please explain to people so when you say he has an orphan rare disease? I'm assuming that there's probably some people on here not everybody's used to that phrase. Can you explain what they mean when they put the word orphan in there? Because it started I see it quite a bit, but not everyone knows.
Speaker 4:So there's actually and I'm not, it's something that you can, you know, google and everything but there are a couple. You talk about rare disease, you talk about orphan rare disease, you talk about ultra orphan rare disease and really what that is is just how rare is this disease? Right, and you know the different. It's like how many lives this touches per year, right? So is it one out of 2000 people? Is it one out of 50,000 people? And the smaller you get? Or that pool, right? That's when they talk about hey, there's only three to five patients a year that's diagnosed with this disease. So it all falls under that rare disease. Just Duchenne muscular dystrophy, what my brother had is considered an ultra rare, ultra orphan rare, and so it's all rare disease. As far as, just how rare is it? And to me, you know you talk about when I helped out my patients, I didn't care if it was an inhaler or if it was an oncology medication or a rare disease medication.
Speaker 4:I took every medication that I needed it yesterday right Because it's somebody's quality of life Inhaler, we talk about psoriasis medication or skin it's quality of life and if somebody needs it, that's the biggest thing and the biggest barrier in their life, regardless of which type of disease state. It is Right. So and so I think I've been living my whole life just trying to speed access to care. Right, they call that turnaround to treatment. From the time that you got that information to you know, is there something available? And it doesn't always have to. You know, is there something available? And it doesn't always have to be a medication. Right, there could be other routes. But for you to jump through those loopholes on or the, you know what they say oh, you can't try this. But here's considered step therapy. Right, you need to try these three things, and it's trying to justify why they can't take that. Or maybe, if it is, I mean, it's, it's great that if there is another option, sometimes physicians are at the point where they're like, ok, here's all these kind of different options, but when you talk about rare disease, you've probably already and I'll talk about Duchenne have done the steroids that have a lot of side effects that parents really don't like, or you've done these other things.
Speaker 4:So there's always a way to advocate, and I call it objection handling right, like how you take that case and how do you frame your case to get what you need? How do you find somebody who cares? And there's a lot of people who care, either from a nonprofit standpoint or there is a foundation assistance. I didn't even talk about that. There's a lot of foundations out there that have pediatric funds as well that aren't really readily available and it's you know, you Google, and you don't know if you're going to give your information away to somebody over the country and you won't have any more. But there are a lot of resources and I think on the opposite end, these organizations are trying to figure out, like how do we find the patients Right? How do we, how do we get to them, how do we get to the community level? And so I think, with all these different organizations, we don't have to work harder, we just got to work smarter and make those connections. And after this call Ashley, I'm going to share just a couple of resources of this one that I ran into, it's a zip code finder, so you put in your zip code and it tells all of these different resources and for me I have like 2000 by me and I live up in the mountains in the middle of nowhere, so they found that many resources for me from child care, transportation, housing, like all these things that we are worried about and we may run into into but I have not seen a more robust kind of data portal for people to look at that.
Speaker 4:I think I wish I knew you know 10 years ago. I wish I knew different patient advocacy organizations and even those who are listening to this call you may be a part or really close to you know patient groups or parent and caregiver webinars or things in a certain advocacy group. I'm telling you that there's probably additional advocacy groups that may help you in another way and I'll bring up for example. I only thought MDA was around, right for Duchenne. No, there are so many organizations that can help out home modification vans. Maybe I couldn't bring my brother to a local camp because it was too far away, but there's so many different organizations and I think the patient advocacy organizations are all trying to do a good job but at the end of the day, there's so many out there that maybe you need to check into a couple different ones.
Speaker 4:Right, I even saw through this one organization.
Speaker 4:They had porch nights for fathers Right To talk and to get together.
Speaker 4:I mean, that's that was huge for me, seeing that, where I see a lot of focused on the mothers and the caregivers.
Speaker 4:But you know, there are fathers on this journey we can't just and there are fathers, you know, who step up and they end up being alone with their children, right, for some reason or the other, and so it's just really nice that there's. There is a big support system and I think, if there's any questions, if, if you don't know the answer, if I don't know the answer, I know my community does, I know we can put a shout out on there and we will get lots of engagement on there. So, just, you know, at the end of the day, you're not alone. This is complicated and you know, I think it's meant to be complicated by design in some aspects, but not for the people who care, and so there's a lot of people who want to just lift that burden and to help you out, or you know, and networking is the best thing you can do. That's what I've done and, ashlyn, as you can see in my profile, I have like a hundred different jobs right now.
Speaker 3:She really does. She really does. We'll put that in the in the show notes, so you all can dive into all things, melissa, because I promise you there's. It's an impressive, impressive path that you are taking, and also one full of hope. Thank you for answering that. I wanted to. I'm going to go ahead and end with one last question, if that's okay.
Speaker 3:Yeah, and, and I think that this is one that is probably a fairly I don't know if I can call it a misconception or, you know, or misperception right now or not and I think the fact that you have worked both sides, you know you've worked for a big pharma company as well, as you know now, you know the nonprofit and you've seen things from a lot of different views. What I'd like to ask is you know, for the people when there's a new medication that comes out and it is so insanely expensive and they're feeling like one, I could never afford this. But I think some people think that the company is like, do you even want me to be able to use this? Like, why is this price so high? If I can't even get it for my child, I can't afford it, you know, or whoever the family member is, or maybe it's yourself.
Speaker 3:I think a lot of people sometimes feel like, do you even want us to be able to access it? And can you just speak to that a little bit about what's going on? Because from what you've said and what I feel like I've learned from you is they. I mean, it is in their best interest for as many patients who, who you know, meet the disease criteria for that. It's in their best interest for as many patients to be utilizing it as possible. They want you to have it.
Speaker 4:Yes, I'd love to take this question and I'm the only one on this call, so I will take this question. But by the time? But by the time a medication gets launched, right, that's great. The rigorous things that a company has to do to get it approved is insane. And so, for every approved product, look at that company's failed products, right, all the money they invested. They're going through phase one, phase two. There was something and they just shut it off. Right. And usually with rare disease, you can get accelerated approval, right.
Speaker 4:There's not many patients on this and so they kind of have some different steps for, I'll say, rare disease products. It is a huge celebration once something is approved and they normally start talking right at phase two, before the drug is launched, like, okay, how are patients going to afford this? And I'll talk about, you know, commercial right, commercial plans. There usually is a copay assistance that will help with your out-of-pocket, your deductible. You may have a plan. There's some things coming up now. They call them accumulators, maximizers, like some different things that they'll take the money from the pharmaceutical company but they don't put it on your deductible, right, it's like they're not putting it towards. And there's all these things that you run into with some of these plans. So that's why I like think benefit investigations, that's our job. We drill down into it. What did you sign up for, what do you have? And then, on top of that, you know if, if there's certain things or you meet below certain income requirements, there is possible free drug, free medication that you got to go through.
Speaker 4:But I'll say, from a rare disease standpoint, the biggest success and what I'll champion all day long is make sure you look at your Medicaid waiver programs. For your state I think it's Medicaid waiversorg because it uh, for patients who have a rare disease or qualifying things, they actually are looked at as an individual, as an adult, on their own right, with no income, so it's not going against you, your assets, what you worked hard for, that sometimes you may not be able to qualify for. And so sometimes these waiver programs, I've heard, like particularly in Texas, that you need to start thinking even before your child is born, like some of the wait lists are so long on these things or they're they're a little bit quicker in areas. So I think, from a standpoint, we call it like a go to market plan right, like how do we push this out there. How do I get patients on? And that's when we start connecting with every advocacy organization, because we need to hear from you, right, we want to hear from you first of what the challenges are. Or maybe you don't know that there's a family access manager that can help navigate that specialty product getting shipped to your house, or how you actually get on treatment. And before you get connected with the pharmaceutical company, they might give you a whole list of vetted out advocacy organizations that maybe you don't know it or maybe you do, but they're supporting them behind the scenes, right, for things that they can't do. A pharmaceutical company can't come and rebuild your house or give you a van or these things.
Speaker 4:So I feel like, from a budget standpoint in what pharmaceutical companies go through is okay. Here's the product we want patients to be on on. Here, and I think a lot of finger pointing goes at the pharma companies because they do have the drug, right, but you got to figure. There's the pharmacy benefit manager, right, who's holding the drug. There's your insurance plan. There's the procurement Like how is this medicine going to get to you? Are they going to make you go into a hospital or can you get this home infusion, like all these things that are challenging behind the scenes.
Speaker 4:And I mean you'll hear it from me, I would not go anywhere if I couldn't advocate and I was able to advocate fiercely for Duchenne muscular dystrophy on the inside, knowing you know, and it's not a patient journey, it's a family journey and I kept saying that over and over with anyone. So I think it's it's okay to get upset and angry and like the frustration, and sometimes we fall back on the closest thing. It is right, the payer isn't doing this. Well, the payer saying they won't pay for it because it's a million dollars per year, well, it took a lot to get that product to here in the US. And also you know other areas and so I think everyone has everyone's best interest at heart.
Speaker 4:Or a pharmaceutical company would never invest in rare disease. I mean, ashlyn, they can do other diseases for you know cardiac and things that can treat billions of patients. It takes special partners and special support systems for them to want to even get into rare disease. So we kind of reframe that mindset. And then also, I'm your bestie. We got a lot of other besties to help you out there. You know support. We just want to get the answers to you quickly, but I hope that helped a little bit, ashlyn.
Speaker 3:It, it, it absolutely does.
Speaker 3:And I mean honestly.
Speaker 3:I feel like I'm so much more informed and I feel like this conversation is a really powerful one to help take away some of the oh, I don't know I don't know if grudges might be the word that we kind of build up or the presumptions that we have about.
Speaker 3:You know those companies. There's a lot of negativity about them, but I love what you brought us back to, which is, you know, it was a choice for them to pursue serving the rare disease community, and if we can find a way to work with them and see them as a partner and not a foe, then we can all achieve something positive. And I'm really, really excited for people to learn about the work that you are doing, what your organization is doing, and I really want to hear everybody's feedback on this episode, see what this inspires anybody to do action wise, question wise, and we'll be sure to include your all the information that you made mention of in this episode. And, melissa, thank you for everything that you're doing. I just can't thank you enough. We appreciate it and we're so much further ahead because of the work that you and and others like yourself are doing. So thank you.
Speaker 4:Well, thank you, and, like I said, we're an open book here. You've got a lot of passionate people behind. Hug your loved ones. We're all here on the same page and, as I say, they are all our patients. So feel free to send over questions and, if we can help with with follow up, education or anything specifically on these topics, this is what we do for a living.
Speaker 3:All right. Well, we will be sure to do that. Thank you so much, melissa. Thank you everybody for joining us for this episode. It's very, very powerful one, and I encourage you strongly to take Melissa up on her offer. She means that she's an incredible human being, and I can tell you we're all in better shape for having her out there on the front lines for us. So, thank you All right, you all have a good day and we'll see you on the next episode. Bye, thank you.
Speaker 2:You are capable, you are equipped and you are not alone. Together, we can do hard things for our children.
Speaker 1:If this episode connected with you and you want to hear more, be sure to hit the subscribe button.
Speaker 2:We would also love to learn about your personal journey and how we can support you Reach out to us at contact at charlotteshopefoundationorg. And last but not least, if you know of someone who could benefit from this podcast, please share when hope is buried.
