Navigating the Complexities of the Healthcare System

**Caleigh (Host):**

Welcome to our Fight to Breathe, a podcast rooted in resilience, community and the power of storytelling. My name is Caleigh Haber and I'm so glad you're here. I was born with cystic fibrosis, a progressive, genetic, rare disease that affects the lungs and digestive system. I've undergone two double lung transplants, spent years navigating the healthcare system, and I've lived through moments I wasn't sure I'd survive. But through it all, one thing has kept me going. Community. The fierce, brilliant and brave voices of others who know what it means to fight for every breath. This podcast was born from that fight. 

Our Fight to Breathe is a space to elevate the voices of people living with chronic illness, disability and rare disease. It's a space where we talk about the realities of what we face. The triumphs and the grief, the injustice and the joy, the medical complexities and the very human stories behind them. Each episode will feature guests from all corners of the CF and medical world, from patients and caregivers to healthcare professionals and advocates. Together, we'll explore not just what it means to survive, but what it means to truly live. My hope is that you'll walk away from each episode feeling seen, understood, and a little less loved. Whether you're navigating this life yourself or you're here to learn, listen, or support someone you love, this podcast is for you. Thank you for being here. Let's keep fighting together. 

Today's episode focuses on better understanding the complexities of healthcare for people with seizures, especially in securing specialized care, navigating insurance intricacies and advocating for oneself. 
Our goal today is to empower you with strategies to better understand the system, advocate effectively and use available resources. Healthcare systems can be intimidating, but with the right guidance, we can all access the care we need. Our mission with our Fight to Breathe is to offer a platform for people to voice their opinions in an accepting and non judgmental atmosphere. We want to foster a sense of belonging and support, offering insights, sharing experiences and amplifying the voices within the cystic fibrosis community. Each episode will bring you closer to understanding the realities of living with cystic fibrosis while also highlighting the strength, resilience and hope that bind us all together. 

Now, let's jump into the episode. 

Today I'm excited to introduce our guest, Aaron Stocks. 
He's not only the Senior Manager of Case Management and Operations at the Cystic Fibrosis Foundation's COMPASS program, but he also lives with cystic fibrosis himself. Aaron's story is powerful with a diagnosis at six weeks old and a year long hospital stay as a newborn.

His personal journey with cystic fibrosis has deeply influenced his professional life. Aaron's passion for helping others in the cystic fibrosis community access healthcare began with his first job out of college when he realized how little he knew about his own healthcare plan. That realization, along with surprise bills, sparked his commitment to not only understand the system for himself, but also help others navigate it. His personal and professional experiences bring invaluable insight to navigating cystic fibrosis care. 

Welcome, Aaron. 

I'm really happy that you could join us today. 
And I want to jump into the episode because there is so much great information. So just to start off, can you explain a little bit about how your healthcare journey has influenced your current work at the Cystic Fibrosis Foundation? 

**Aaron Stocks (CF Person, Senior Manager of Case Management and Operations at the Cystic Fibrosis Foundation's COMPASS program):**
Yeah, sure. So my journey, you know, obviously I was diagnosed when I was six weeks. I was one of those guys where my parents took care of everything with my insurance. And then I was so excited to eventually start at the foundation when I graduated college. And I thought I knew more than I really did when it came to insurance. And I was in the middle of like transferring care centers. I was going to children's hospital in D.C. And I transferred to Hopkins. And I'm looking over these plan documents. I'm like, cool. This says, you know, 40 bucks for a specialist co pay. I'm like, all right, I can afford that. I'm making like adult money now. And so I scheduled my first clinic visit at Hopkins. I'm so excited. 

And then a couple of months go by and I get this bill for $700. And I'm like, there's no way this is real. There's no. It's like something went wrong. I'm not paying this. And so I just kind of ignored it for like two years. And then eventually, like, I was sent to collections. And this is all before, like, I came to Compass, right? 

I started at the chapter with fundraising, which is like, grueling work. I have such an appreciation for what I chat or what the chakra colleagues do. 

Anyway, so I get this bill for $700. I get sent to collections. They're sending me these collection notices like every other week. And I just ignored it, threw it in the trash because that, this is wrong. They, I shouldn't be getting this bill. 
And then eventually I get like a summons to go to court. So this collection or collections agency, like, wanted to take me to court for this $700. Right. And so that was my like aha. Moment that I needed to step in and to learn about this insurance stuff and how important it was to really. 

**Caleigh (Host):**
Also like we don't have other important things going on with our health. Right? 

**Aaron Stocks (CF Person, Senior Manager of Case Management and Operations at the Cystic Fibrosis Foundation's COMPASS program)**
Yeah. Right. 

**Caleigh (Host):**
So now you have to deal with this. 

**Aaron Stocks (CF Person, Senior Manager of Case Management and Operations at the Cystic Fibrosis Foundation's COMPASS program):**
Yeah. And that's just, you know, that's the hand that were dealt. Right. 

We have CF that is like a full time job and taking care of ourselves and trying to manage, getting everything that we need and scheduling appointments. But whether we like it or not, insurance is one of the most important decisions that we're going to make every single year. And we have to understand it and we have to know how things work because it can lead to cost, which is a big thing that we're talking about now. Right. And it is so broad where people have to choose between paying medical bills and paying for basic living needs. And I don't think that's anything that anybody should have to, should really have to choose between. Right. And so that's the experience that really opened my eyes. 

And then coincidentally they're, you know, the foundation at the time had this copay assistance program. We called it CFPAF and it was great. Right. We, were able to help people with their co pays for their medications because we know that's expensive. And then eventually it evolved into this thing called COMPASS because we understood that it was so much, there's so much more that we could do rather than just paying for co pays. 

And it's an evolved into this incredible thing where we're helping people understand insurance and looking for plans and helping them troubleshoot insurance challenges. Right. We know that just because you pick a plan that you think is going to pay for everything that you need, everything doesn't always go according to plan. 

**Caleigh (Host):**
Never does. 

**Aaron Stocks (CF Person, Senior Manager of Case Management and Operations at the Cystic Fibrosis Foundation's COMPASS program):**
No. If you don't dot an I correctly, if you don't cross a T on a prior authorization. So it's super complicated and I'm so excited that I've been a part of this journey to get a better understanding for myself and to be able to like work with our case managers and work with the community to try to alleviate as much stress as possible for this stuff because it feels impossible and it's so overwhelming. Especially like you mentioned, we have so many other things going on. Like it's already a full time job just to be able to take care of ourselves. 

**Caleigh (Host):**
Absolutely. I feel like I can relate in the sense that growing up, my parents Took care of my insurance. You know, I never even thought about it. And it's actually mind blowing to me now that I'm like, how did, how were they affording it? How were they doing this? I mean, in my case it was a lot of arguing about financial stuff at home. And I did feel like that stress was there due to my health and the requirements to for like my treatment and stuff. 

But I personally wasn't looking over the documents. I wasn't choosing a plan. I just knew, oh, my parents showed a cart when I walked into any hospital or clinic or anything like that. But that was about it. 

And when I was an adult, I ended up going on MediCal. So that's a program through California. 

So again I wasn't, it was hard to understand, but I actually was so sick that my mom was continuing to handle that with me. So she was aiding me and you know, finding healthcare providers and getting medications. I was just simply too sick to make the phone calls. But over the past few years, now that I'm married, I'm doing it all myself and it is a really big transition. I spend so many hours every single week on the phone with either my providers, my pharmacy or my insurance. And often times I'm calling one, calling the other, I'm calling the other one back and then I'm trying to relay information and you know, one person says it's right, one person doesn't say it's right. 

But anyways, my point is that this is something that is a big part of our lives with cystic fibrosis. And it's something that I myself am very grateful to COMPASS. They've helped me numerous times to try to understand which plans I can benefit from and which plans may not be the best decision for me. And I also have a lot of friends with CF who call COMPASS and rely on COMPASS, which I do want to point out. I'm sure you're going to talk about it some more, but

I think it's great how one one the experience is. It's very personalized. You don't feel like you're kind of just like talking to a bot. It's someone on the phone personally with you, helping you to understand. 

So I wanted to ask you what are your personal strategies that you use to say stay persistent and proactive in securing the healthcare and life sustaining medications that you require? 

**Aaron Stocks (CF Person, Senior Manager of Case Management and Operations at the Cystic Fibrosis Foundation's COMPASS program):**
Yeah, for sure. And that's something that I'm really passionate about. It's something that me and the rest of the Team we work on together and we talk a lot about. We get this question all the time. I love the answer is like, who's the best insurance company out there that I should go with, right? What type of plan is the best plan? Like, I want top of the line and it just doesn't work that way. Right. Because all of us, our journeys are very different and we have different experiences with almost everything that we do in. Right. It's like asking like, what kind of car should I buy? Everybody's needs are so different. So it's all about the prep work, right. And you have to know what you're looking for before you go start searching. 

And so it all starts with what your priorities are, right? This day and age. Modulators is a big thing. We know that. Right. Super expensive. It's, it's like to help a lot of people. 

But not everybody's eligible for a modulator, right. Other people, like they have different needs, whether it be if someone's on the transplant journey, if someone is, they need durable medical equipment or home health care. So it's all about understanding what your needs are going to be for the upcoming year before you even start looking at what plans are. What type of insurance am I eligible for, what's out there, Understanding, like how the insurance is funded. It's so much more than just taking a look at a summary of benefits and saying, all right, well, this one has the lowest deductible, this one has the lowest maximum out of pocket. 

There are very intricate details that you have to pay attention to when looking at the plan before you even start talking about numbers. Right. So I think it starts with your prep work, knowing exactly what you're looking for, having your full medication list, having a list of your doctors, and then you can get into, okay, what's available to me? Am I eligible for Medicaid in my state? Does my state have a state based program that I can utilize, which a lot of states do? You mentioned California, right? California is a great one. It's called ghpp and lots of people. 

**Caleigh (Host):**
I use that as well. 

**Aaron Stocks (CF Person, Senior Manager of Case Management and Operations at the Cystic Fibrosis Foundation's COMPASS program):**
Yeah, yeah, Lots of people in California love GHPP and use it as like their source of insurance. But then, you know, can you get insurance through your job or do you have to utilize the healthcare marketplace? 

Each of these different types of plans, like they have their own unique characteristics that you may or may not be able to leverage to cover everything that you need. Right. Big thing for employer plans is whether it's self funded or fully insured. And do you have to meet an individual deductible or the whole family deductible. That's like getting way into the weeds. 

But I think the process is understanding what you're looking for, then knowing what's available for you and then understanding the insurance basics and getting everything in writing is so incredibly important. 

Because I don't know about you, but every time that I call the insurance to ask a question and talk to a representative, like you could call 10 times and get 10 different answers. So it's so important to get things in writing and to be able to interpret that insurance jargon. And starting with the insurance basics, making sure the medications are on a covered drug list and how that applies to how things are like covered and calculated. But then a big piece after that I think a lot of us forget about is like we pick a plan and we enroll in it and we get our insurance card and we think everything else just falls into place. Right. And that's not the case. Starting with, you have to let your care team know might need new prescriptions, might need new prior authorizations. 

Have you let all the co pay assistance programs know that you're enrolled in. Are you even eligible for some of the copay assistance programs? Right. Because there's even rules and restrictions for that whether or not you can utilize the manufacturer or using some of the other third party programs. 

**Caleigh (Host):**
Well, you made a really good point with just understanding what your needs are and understanding your priorities, which in my mind I'm understanding that as actually understanding your own disease. Right. As an adult, we need to understand what are we requiring right now and what are we going to require within the next year or maybe a few years or whatever that may be. Like, where are we headed? 

And like you also said our medications list, our providers list, and you said like costs, you know, what we can actually qualify for, that's a big one, Is like knowing your family annual income or if you're alone, your own annual income, having all of those things sort of written down so that when you make the call, those are already there to provide the, you know, COMPASS, the information or the insurance the information or whatever that is. When you're asking questions, are there other things that maybe we need to have with us sort of in our binder of, you know, papers that we can have just in case people are asking us questions. Because I think this is actually great information that we can share with people. 

**Aaron Stocks (CF Person, Senior Manager of Case Management and Operations at the Cystic Fibrosis Foundation's COMPASS program):**
Yeah, for sure. And this is so timely too, right? Because this is like open enrollment season. And so that's you know, compasses, like the most chaotic time of the year. So yeah, the medications care center information is really important. The care centers are like the backbone of everything. I don't know about you, but like, if I get a rash or break my arm, I'm calling my CF care team, even though that's not even their expertise, because they're my CF care team and they take care of everything. 

**Caleigh (Host):**
I actually haven't even had like a primary doctor since I've been an adult. Like, I've never used one. I just use my transplant team for everything. 

**Aaron Stocks (CF Person, Senior Manager of Case Management and Operations at the Cystic Fibrosis Foundation's COMPASS program):**
Yeah, exactly. That's exactly right. The demographic information is really important. How many people are in your household and the estimated annual income. Right. That's really important to evaluate for the programs. It could impact, like, how much you're paying for insurance through the marketplace. So that's also really important. And then always, always, like knowing what the status is of your current insurance and knowing like being as proactive as possible of like what's going to happen to your current insurance and when is that going to take place to make sure that we don't have like a gap in coverage. That's like a really big thing. It happened this year with like the Medicaid unwinding period after the pandemic. Right. That rules loosened up a little bit, got a little bit more flexible. But that started winding down now and it was a big thing where people would go to the pharmacy and try to refill their medication and all of a sudden like their Medicaid was turned off. 

**Caleigh (Host):**
Oh my gosh. 

**Aaron Stocks (CF Person, Senior Manager of Case Management and Operations at the Cystic Fibrosis Foundation's COMPASS program):**
And without any notification. Can you imagine how stressful that is? 

**Caleigh (Host):**
I mean, I actually can because I've sort of had something like this happen with like a gap insurance. 

**Aaron Stocks (CF Person, Senior Manager of Case Management and Operations at the Cystic Fibrosis Foundation's COMPASS program):**

Oh No!

**Caleigh (Host):**

You mentioned this unexpected bill that showed up that was $700 that ended up spiraling you into this healthcare journey. So can you give us, myself, the listeners, some advice to avoid these similar surprises? 

**Aaron Stocks (CF Person, Senior Manager of Case Management and Operations at the Cystic Fibrosis Foundation's COMPASS program):**
Yep. So going back to the prep work, that's incredibly important. Making sure that providers are in network and understanding how things are processed before you enroll in any insurance. Right. 

Where this was coming from was a lot of hospital systems, they bill an outpatient facility fee. So like oftentimes when we go to clinic, we're getting three and four bills. We'll get one for our sputum culture, we'll get one for our PFTs, we get one for the specialist co pay. But oftentimes like the CF or the CF clinic is within a hospital system and you get billed for an outpatient Facility fee. So really understanding how things are billed, that's going to be the most important thing to try to avoid any type of surprise bills. 

A couple of things that you can probably do, right, you can review like past explanation of benefits.  That's always a big thing that I talk to folks about to be able to understand how your hospital or your clinic bills log into your current portal of whatever insurance that you might have, or look at a pass bill to review your explanation of benefits. That's that document that looks like a bill, but it'll say in big bold letters at the top, this is not a bill. So it looks exactly like one. So explanation of benefits will tell you exactly how much was charged to the insurance, what the service was, what the code was, and how much your insurance paid for it. And so that helps to get an understanding of how the billing takes place. 

**Caleigh (Host):**
That code is so important, by the way,

**Aaron Stocks (CF Person, Senior Manager of Case Management and Operations at the Cystic Fibrosis Foundation's COMPASS program):**

It’s huge

**Caleigh (Host):**

because if it's one letter or digit off, it can spiral an entire thing of not getting paid becoming your responsibility. It is so crucial to understanding this and especially when you're calling your pharmacy and you're getting like your prescriptions, all of those things, and you want to get like the coding for cystic fibrosis or diabetes or whatever. I've had this done where like a digit has been off and it's spiraling into like what's going on. And you have to look through like every single detail to figure out that it's off. 
So these things that you're saying are just so essential to getting the care that we need as people with cystic fibrosis who require so much specialized care from not only a CF center, but from maybe an endocrinologist and a dermatologist and you know, GI Dr. And all of these things. 

**Aaron Stocks (CF Person, Senior Manager of Case Management and Operations at the Cystic Fibrosis Foundation's COMPASS program):**
So yeah, for sure that coding, it's so. It's actually really scary that you could put E 84.1 instead of E 84.2 and make a, like the difference of a couple of thousand dollars out of your pocket because it wasn't the right code for the right service. I agree. Understanding the coding and being able to interpret like what if the right one was used for whatever is being billed is super important. 

But an explanation of benefits and like there's always a section in your summary of benefits of. There's like a note section all the way to the right hand side of after it explains like what the financial responsibility is. That's like the fine print. I would, I would pay attention to that. That's going to tell you exactly how things should be processed. 

Having a copy of your member handbook where a document called the evidence of coverage associated with your plan is also going to be really important. That's all like the underlying fine print of like a summary of benefits. So it goes far deeper than just like you pay a 20% coinsurance for this or you have $100 copay for this. It's like all the fine print of how things are going to be processed. But it does matter. So I think that you make a good point. 

Like talk to your social worker, talk to your nurse coordinator to understand how your clinic is going to bill for something. They may connect you to the billing office, but there are some folks there that, you know, I think at most hospital systems there's a department called like Department of Managed Care or something similar to that. 

**Caleigh (Host):**
Yeah, I think that it's so overwhelming. I mean, I'm just listening to you and I'm like, I think I know what my insurance offers me and I think I know what I'm paying and I think I know. I mean, I talk to so many people every single day about getting this covered and that covered and like, you know, paying your deductible and all of these things. So I have a low monthly high deductible right now. And so I have to understand, like, I know what I'm paying every year, it's a large chunk. But I also am paying like at that large chunk when I need that large thing, which is for me, like the first of the year. Right. You get medication and you pretty much meet your deductible the first of the year for your medications. 
But there is also deductibles in healthcare or like inpatient or ER or testing. 

You mentioned a few resources for people that we could contact for support and for understanding this. So I think that's really valuable to actually reach out and get help because it's important. And I think as an average human being who isn't specialized insurance, it's going to be hard to understand. 

So can you kind of explain a little more? You've talked about COMPASS quite a bit, but can you explain and help us understand why it's such a unique resource to help people with CF and families with cf, especially related to insurance and overall health care challenges? 

**Aaron Stocks (CF Person, Senior Manager of Case Management and Operations at the Cystic Fibrosis Foundation's COMPASS program):**
Yeah. What I think is so unique about it is, like you mentioned it earlier, we don't want to have conversations like we're a bot. Right. And like you're talking to someone who doesn't understand or care about what you're going through. It's. We have the unique perspective to have, like, a deeper understanding of CF and what it's like to live with CF and how expensive it is. And so we want to have conversations that fit your needs. Right. For the people that contact us and building that rapport and building that relationship is one of the top priorities. Right. That's going to help us be able to work together more closely and work together at the level that the people who are reaching out to us would prefer. 

Again, I can't say this enough is that each of our journeys are so different and that we go through these times in our life where we need a little bit more support. Right. We need someone to make some additional phone calls for us and to go to bat and to fight the insurance company. Because I'm just not feeling well and I don't have the time to do it. I don't have the energy to do it. And that's okay. Right. We want to be able to do that. So we want to meet people where they are in their journey. But then

**Caleigh (Host):**

I guess I wasn't aware myself that you guys actually help to make phone calls and reach out for us if we're not feeling up to it. Is that what I'm understanding? 

**Aaron Stocks (CF Person, Senior Manager of Case Management and Operations at the Cystic Fibrosis Foundation's COMPASS program):**
So it depends on what the phone call is about. Right. But for the insurance, yeah, absolutely. We'll. We'll make as many phone calls to the insurance so that we can understand what's going on. That's always like the biggest, the biggest thing that I try to like, help or help the team and help community members that I'm working with is the most important thing is when you're having a, or like a challenge with your insurance, something is not being covered. Or if you're getting a bill that you think is incorrect, you have to understand the why. We have to understand why something is happening. Because if you don't, you're going to go in a completely different direction than you might need to go to resolve that issue. 

So, yeah, and we, our team, we go through a lot of training, a lot of education. We have that experience. Absolutely. We could make some of those phone calls to the insurance. And it's really important for us, too, to partner with the care teams and we're working on, like, strengthening those relationships. Right. Because they're the backbone of your career. They're the ones submitting the prescriptions and the orders for the insurance to cover something. Right. So they have half the story that we don't have. Absolutely. We can make some of those phone calls. We have like consent and authorization processes that we have to do, which is really important. Wow. 

**Caleigh (Host):**
You guys truly understand and try to build a bond and relationship. But it makes me feel like the foundation really does want to help us on an individualized level and wants to really be partners with us in our struggle. And that's really important for somebody who's fighting for their life, especially when we're having really tough times and we're all different. Even if we may have the same lung function, we still, you know, go through life in different ways. 

So in your experience, what are some of the biggest healthcare challenges that people with cystic fibrosis and their families face when they reach out to compass or just in general with insurance and healthcare? 

**Aaron Stocks (CF Person, Senior Manager of Case Management and Operations at the Cystic Fibrosis Foundation's COMPASS program):**
Yeah, the biggest is medication coverage. Right. And having a lot to do with what insurance looks like through your job. And there's this big thing going on out there that I think it's been around for a while, but now that like things are, have just gotten more expensive. So there's this thing called self-funded insurance. So essentially what that means is the money to pay for the claims for your medication and all of your care, it's actually coming out of your employer's pocket and the insurance company is just paying merit, being the facilitator of the claims. And it's a great way to keep premiums down and it's a great way for employers to be able to make adjustments when they can. Right. 

But because things have gotten so expensive, these types of plans, they don't have to comply with everything under the Affordable Care Act, there may not be as much recourse as you can take for an appeals process and going to the department of Insurance and asking for an external review. 

So it's, I think it, a lot has to do with the insurance companies and the type of plan giving so much pushback on covering something that is medically necessary. And they're even implementing these things called cost relief programs. So like copay accumulator is a big thing right now. 

And maximizers and this other thing called alternate funding where like insurance plans are trying to require you to get free drug from the manufacturer. And it's really unfortunate because insurance was already complicated enough before these things ever existed. 
And what's happening is because it's putting up so much administrator, so much administrative burden that people don't understand how those programs work because it's, there wasn't a lot of transparency when, when they enrolled in the plan. And so it's causing gaps in care, it's causing people to not be able to afford their med or the medication. So that's like the number one thing. 

And that's where I go back to making sure that you have all the documentation before you make a decision on your plan. Even if you're 99% sure that your plan is going to be great and nothing is changing from last year, just be 100% sure and look for those like cost relief programs. And if it has an accumulator, which is essentially the plan saying they're not going to allow you to use copay assistance to contribute toward your deductible in your maximum out of pocket, which then puts you at risk of having to pay some of the excess, puts you at risk of exhausting the amount of assistance that's available through the manufacturer. So really understanding that fine print, that has been the biggest thing that Compass hears about probably in the last four years, maybe even longer. 

**Caleigh (Host):**
I know that on Compass's website you guys have a great database that can help people search for grants or assistance. 

**Aaron Stocks (CF Person, Senior Manager of Case Management and Operations at the Cystic Fibrosis Foundation's COMPASS program):**

yeah

**Caleigh (Host):**

And I'm curious, so how do I say this exactly? I'm trying to find my words. Once somebody has made a decision on their insurance plan, they have their insurance plan, they're going with it and you know, the year begins and they're getting medications, they're going to clinic, all those things, when is the best time to start searching through grants or assistance programs? When can we access them? When can we qualify for them? Can you just give like any basic information for I guess, getting grants and utilizing them? 

**Aaron Stocks (CF Person, Senior Manager of Case Management and Operations at the Cystic Fibrosis Foundation's COMPASS program):**
Yeah, the most basic way I can answer that question is if you've already made a decision on the plan and you're getting your medications and you're going to clinic, you're already too late. 

I think it's important to evaluate your eligibility for whatever grant it is. Whether it be like for the copay assistance or if you're getting help for your premiums. It's important to do that at the same time as you're making the decision on what plan you're enrolling in. Right. 

Again, going back to that prep work, if you can anticipate medical bills because your plan has one of these copay accumulators, then is the time to prep to see what's out there to prepare yourself for any of the third party programs. There's all kinds of organizations throughout the country who are started by other people with CF and CF families to help with medical bills. 

So I think having those things like at the ready beforehand is so important. Even if you have to enroll in a plan where you know there's nothing more that you can do that you're gonna be at risk for these medical bills because of some of these other challenges, you know, that's a struggle. But there are some things that you can do ahead of time to try to alleviate some of that stress and be prepared. So I would say like doing that at the exact same time as of when you make a decision on your insurance plan, that's the right time to do it. 

And again, like evaluating some of the state based programs. We talked about ghpp, but there are programs all throughout the country like children's special health care needs programs. Ohio has a really good program called bcmh. So they're spread out all over the country. Even if you're not eligible for some of the copay assistance programs or something like a HealthWell or a patient advocate foundation, there are other state based programs that I highly encourage people to take a look at. But again, yeah, our database, it's outwardly facing for the community. I highly encourage people to take a look at that and if they have questions, feel free to reach out to us. But it's a great way for people to take some of that independence that I think a lot of us have yearned for a really long time because it's empowering. Right. 

And it's tough to deal with this disease on our own. And so that's just one great tool that we've tried to come up with and we're trying to build it out more and add more resources for people. So highly encourage checking that out if you, if people want to do some of that prep work on their own. 

**Caleigh (Host):**
I think what you said is right. It is very empowering to take charge of your disease. And that doesn't only mean waking up and taking your medicine without somebody telling you, but that also means organizing your medicine. That also means calling and making your own appointments, scheduling things on your own, calling the pharmacy and calling your insurance. 

This is a big step for people. And so as somebody who's maybe transitioning into that period of their life, this independence period of their life for the first time, how can we understand and ensure that our plan covers the essentials of specialized CF care at an accredited center? How do we ask our insurance that question? 

**Aaron Stocks (CF Person, Senior Manager of Case Management and Operations at the Cystic Fibrosis Foundation's COMPASS program):**
Yeah, the key step there is checking the provider directory that is associated with your specific insurance plan. Right? That part is so important. You can't just like go to the General website of UnitedHealthcare or Blue Cross Blue Shield and just check a general provider network. Right? Because it depends on whether or not you have an HMO plan, if you have a PPO plan, or if you have one of these other, like, weird things that are out there, like an EPO and POS. 

So it's really important to make sure that you are checking for the specific network that is associated with your insurance plan and also making sure that the name is correct of what you're searching for, whether it be your doctor or the hospital system. Like, hospitals are constantly changing their names all throughout the country, and it's hard to keep up with it. And so I think a really good way to do that is to use the NPI that is associated with the provider of the hospital, because that's never going to change. Right. So you can check or check the network status based on the NPI or the name. Just, just make sure that the name matches the facility. 

The other thing is, like, there are care teams and hospital systems that bill, like their doctors bill under a physician's group. And so again, that's where I think it's important to go back to previous explanations of benefits. Check with the care team. They might be able to connect with someone to be able to answer that question of like, does my, or does the hospital bill under specific, like my specific doctor's name or is there a physician screen group that they're kind of umbrella under? Right. So again, it goes back to that, like, foundational understanding of how things work. 

**Caleigh (Host):**
I think at least we can benefit because being 2024, we actually have websites now. We have apps that can, you know, we can log on directly with our insurance plans. 

So I myself, I have an app that my insurance card is on. I can access my plan on it, I can access providers. 

I do a lot of traveling and I've gotten sick all over the country, including Alaska, Hawaii. 

And it's a great tool to be able to pull it up and search for exactly what I need and know where I can go without having to wait on a call. I, you know, when you're going to the emergency room, first of all, biggest tip, if you're traveling anywhere, do the research and find out what resources and access to medical care you have where you're traveling. Look up the hospital. Think of where does it have a CF accredited center, that would be my number one place I want to go to or a transplant center, that's my number one place. And look up ahead of time if you're covered there. So you know that if you do have an emergency, you can go straight away to that hospital. Hospital and you don't have to wait trying to figure out what's covered. 

Another tip I just use myself is when I travel, I keep a small card with me in my purse that says my name, a few of my conditions. So if I was found and I was put into an ambulance, my allergies are on there. So I'm not treated with something that may worsen the worsen that problem. But I also put on there like, please take me to X hospital as a preference. 

**Aaron Stocks (CF Person, Senior Manager of Case Management and Operations at the Cystic Fibrosis Foundation's COMPASS program):**
Oh, wow. 

**Caleigh (Host):**
And so they know like if they're taking me because a lot of times ambulances, they'll just take you wherever they're directed and they're not thinking about does this person have cystic fibrosis? I mean it's a rare disease, so they're definitely not thinking about it and they're not thinking where is the center? That's also not their job. Right. Their job is immediate care to stabilize you. 

So if you have those things written down, hopefully they'll listen to your preference and take you somewhere because they'll understand that's what you need. But you can do that. I mean, you can carry that on you at home in your purse, in your back pocket, in your wallet, wherever, and tell you to take you to your care team or call your care team. It's a great resource just to have there in case of emergencies. 

Another resource that you mentioned to me on a previous phone call was this checklist that COMPASS has. Can you talk a little bit about what this checklist is, what's on it and how it helps people with cystic fibrosis. 

**Aaron Stocks (CF Person, Senior Manager of Case Management and Operations at the Cystic Fibrosis Foundation's COMPASS program):**
Yeah, so there's a checklist, like almost like a comparison template of when you're picking insurance, of being able to write down like a side by side comparison of the plans that are available to you. You wouldn't believe. 

We have folks that call us and like we're comparing like 50 different plans that are being offered by their employer and it's like so overwhelming. 

So to be able to write down all the important details on the side by side like checklist and then that's going to help to understand the cost a little bit better. It's going to help to jot down what providers are in network with each of the plans. So it's just a tool more of like an organization tool. 

And then people should be able to take, we use like a worst case scenario type calculation that you should be able to do on this template of like take your maximum out of pocket for the plan, right? For each of the plans that are available and then if it's through your employer or through the marketplace, how much are you paying for that premium on annual basis and take that money and add it to your maximum out of pocket. And that is kind of like your worst case scenario from a high level of what you're going to pay for health care costs at the end of the year. And so being able to see that all in one place from a side by side comparison is always super helpful. 

There's also some other really great tools on the website that like I get more excited to tell people about of like navigating cf. There's some modules on there and some videos to like walk people through understanding the insurance basics. Really highly encourage people like young adults. Like thinking back of like my experience of like learning the hard way, I wish there were things out there for that were available to help me understand insurance basics. So like there's also some modules and some videos to walk people through some of the insurance basics. 

And I think we do it in a way that doesn't make the insurance jargon and language like super complicated and even more overwhelming. So there's some other great tools there or for people who do want to learn this stuff. 
Again, like nobody wants to know about insurance, nobody wants like to have to use these tools. But like we talked about in the beginning, we have to do it. It's one of the most important decisions that we're going to make. And I think it's particularly important for like the younger population to start as early as possible because you know, it's great having mom and dad do that stuff for us. And sounds like you had a similar experience to me, right? 

**Caleigh (Host):**
I mean if I could have that forever, that would be incredible. But as we mentioned, it's very empowering to sort of take this on ourselves. And for parents maybe who are listening to this and have teenagers or young adults with cystic fibrosis, I highly encourage you to start talking and having these conversations more openly to explain things and maybe even demonstrate them as you go into the clinic or you go into the hospital setting. 

I didn't do that and I think that it maybe would have been a good tool for me to know These things going into the future, especially once you come off those plans and we have to make the decision for ourself what to do. 

So these resources that you're sharing are incredible. I've looked over all of these the past week and in my past when I've needed them in every single year. And they're great videos, great resources. 

Another resource that I use myself is Peer Connect. And that's an incredible resource because you can reach out to the Cystic Fibrosis Foundation Peer Connect program. And if you want a mentor and you want to be a mentee, or if you want to be a mentor because you believe in that you have, you know, expertise in a certain area or experience in a certain area that you can help somebody else, you can sign up there. But being a mentee is great because you can call and say, you know, I'm transitioning to have more independence and I'm making this decision on my own. Can I talk to somebody? 
And it might be a great way to connect with somebody else with Cystic Fibrosis. It's a great resource and I use that many times. Well, thank you so much. Do you have anything else that you want to kind of share about insurance or compass that we didn't talk about? 

**Aaron Stocks (CF Person, Senior Manager of Case Management and Operations at the Cystic Fibrosis Foundation's COMPASS program):**
No, I think the two biggest takeaways is don't ignore it, right? It's. You're. You're going to have to deal with the coverage one way or the other, really do your prep work. If you do your prep work ahead of time, oftentimes the right answer for what plan to go with and you know how to move forward, it will kind of reveal itself to you. So if you do the work ahead of time, I promise it's going to be a much easier process than if you just make a blind decision. 

And wherever you are on your journey, right? If you, if you want someone to, like, really be a support person, we can do that. We can, we can be a partner with you and helping you learn, right? 
Like, one of my goals that I always like to do is, you know, there are people that I talk to during open enrollment, and then the next year they come to me to say, this is what I'm thinking for this insurance plan. This is what I see. That's such a cool thing to be able to like, walk through this experience with someone. And then there's that's that empowerment, right? 

Or if you just want some general information or a couple of basic or like basic questions, you feel like you got it right. And you want to be independent, that's great. We're going to try to meet you whatever part of the journey that you're on, so don't ignore it. Do your prep work and we're here to support you in whatever capacity that you need. 

Caleigh (Host):
Well, thank you so much, Aaron. This has been fantastic. Thank you for joining us today and sharing your expertise. Navigating healthcare can be daunting task, but with the right tools, resources and support, we can make it through together. 

And I just loved having you on here and getting to meet you because every time I meet I somebody else with cystic fibrosis, it's very eye opening to somebody else's experience and I feel like there's that instant connection there that just makes us family. So I really appreciate it. 

**Aaron Stocks (CF Person, Senior Manager of Case Management and Operations at the Cystic Fibrosis Foundation's COMPASS program):**
Likewise. This was such a cool experience. This was my first podcast ever. So I hope I like lived up to the expectations and thank you for having me. This was, this was fun. 

**Caleigh (Host):**
You definitely did. I think that we are giving people just big overall like umbrella tool to use going into this process of their life. So I think it's great. I wish I would have had it many years ago. You know, how old are we now? We're like, we wish we would have had it like a decade ago. But you know, that's fine. See you next time. 

Thank you so much, Aaron for joining us today and sharing your expertise. Navigating healthcare can be a daunting task, but with the right tools, resources and support, we can make it through together. 

To receive personalized, one-on-one, services from the Compass program, call 1-844-CASS that's 1-844-266-7277 or get help by emailing [compassff.org](http://compassff.org/) as we wrap up this episode, I want to remind our listeners that your stories and questions are what make this podcast platform for support and advocacy. 

Engage with us on social media @fight2breathe or email us at [Caleigh@fight2breathe.org](mailto:Caleigh@fight2breathe.org) to share your experiences or ask more questions about navigating healthcare. Remember, every action, whether it's advocating for yourself or supporting someone else in the community, makes a difference. 

Together we can make sure everyone with cystic fibrosis gets the care they need. Thank you for being part of the our fight to breathe. Let's continue this journey together, one story at a time.

And a heartfelt thank you to the Cystic Fibrosis Foundation's Impact grant for supporting this podcast.