Season 3, Episode 8: Self Advocacy & Navigating Insurance With A Chronic Illness

Welcome back to The Gut Show! In today's episode, we are going to talk about the practical tool of navigating insurance with a chronic illness. Our guest expert today is Molly, who is an IBD patient and advocate for the chronic illness community. She is really passionate about sharing the tools and resources that she has learned by working in healthcare and navigating her illness in her own life!

In this episode, she's going to share more of her story, which we are passionate about within the IBD and IBS communities, and what she's learned along the way when it comes to insurance getting coverage, and building your health care team with confidence of proper coverage.

So enjoy the episode, connect with Molly after and get any questions at all! Don’t forget to connect to others in The GUT Community, a Facebook group for those with IBS and digestive disorders to support one another and dive deeper into each episode together.

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Erin Judge: Hey, Molly, thank you so much for being on the podcast! So we're gonna jump right in, right into your story, so tell us a little bit more about your story and how you became kind of the IBD advocate that you are today?

Molly Dunham-Friel: Wonderful, thank you, Erin! Thank you so much for having me on your podcast. I'm so excited to be here! So for everyone that doesn't know, I was diagnosed with IBD in the form of ulcerative colitis in 2012. I was so scared at first, I had no idea what was happening with my body. I was alone in a big city, I had just moved to Atlanta, I didn't know anyone, like not even one person, no family, no friends yet. I had never heard of ulcerative colitis before so when I got sick, and I went to the doctor and got my diagnosis, I received no resources, no patient education, not even a pamphlet, not a website, not a person to call, I received nothing at all. And so I was embarking on a new journey as an adult, just graduated college, and I was figuring out adulting, and a chronic illness I had never heard about at the same exact time. And I think what happened was, I lived through a lot of ups and downs during that period of time, and those experiences that I had, they've made me into the advocate that I am today, because now I am dedicated and super passionate about supporting, educating and empowering patients, because I didn't have that when I was diagnosed. I was all alone. I felt alone and isolated and embarrassed, and it's drawn me to create better values by Molly, and to be the advocate that I am today!

Erin Judge: I love that, that's awesome! Something that comes up I think anytime I talk to someone in this gut space, it used to just be the IBS world now IBD, IBS issue girls out there is, you know, it, a lot of communities don't do come from that place of isolation. It is easy to feel so isolated and something that always comes up in the conversation when you start sharing when you start talking about it, it's amazing how many people struggle, whether it's, you know, diagnosed IBD, or IBS, or even just struggles that you've never talked about. It's amazing what all happens and I think that that's such an encouraging thing, once you do start sharing how many people kind of flood your way and how big that community can become because so many people are out there suffering, but they feel so alone, because they're not talking about it.

Molly Dunham-Friel: Absolutely, like I didn't know anyone else with IBD and obviously, there were 3 million other people with IBD but I just didn't know them and so I felt like the only one. I was so scared, especially when I started having bloody diarrhea, which is what led me to go to the doctor because, you know, it's pretty easy to sweep bloating and gas and urgency under the rug a little bit. I mean, they're very traumatizing to live through, especially if they take you all the way to incontinence, but when I first saw a bright red bowl of blood in the toilet, I was terrified. I never had seen that before and I knew something was really wrong. And so that's what drew me to get help, which is what led me to my diagnosis.

I'm thankful that I was able to receive a diagnosis because I know that's another problem in our community where people can't get diagnosed, and that's another hurdle. But I think I just felt so embarrassed, I didn't feel like I could talk to anyone, and I think not knowing someone else with IBD made it even more isolating because no one else that I knew understood. Now I feel more understood, I can help other people and I feel like actually being an advocate has helped me, in addition to allowing me to help other people, and that's the most rewarding thing for me.

Erin Judge: Oh, absolutely. Yeah, seeing people feel heard and seen is so big. It's something we value in our practice because all of our dietitians, we all have IBS and gut issue histories and so yes, we come with the practitioner point of view, but having like those little wins, when you kind of have the empathy that goes along with it, even if your story's not the exact same, like, it's so much more rewarding, because it feels like when someone else you know, wins, quote, unquote, like, you win, and the whole community wins and we all get those victories together. And sometimes that's just getting out of bed, sometimes it's having perfect bowel movements, and so it's fun to kind of see that happen.

So we know that gut issues are not the most fun to talk about at first, like, you know, it's not the best to just put it out there like hey, this is how I poop. I connected with you through Instagram and you were sharing a lot more so what did that actually look like? When did you decide in a public space to begin sharing? Do you remember some of the first times that you started sharing about your symptoms and what you're going through? Or like, what kind of led you to have the courage to do that?

Molly Dunham-Friel: Sure. So I think it was the culmination of all of the experiences that I had, and not knowing anyone. And then I started, you know, I just realized I want to get involved, and I want to meet patients, I want to get to know patients, but I also want to help and give back to this community because I've learned so much along the way, and I wanted to share what I learned and experience with other folks. I also realized that even as hard as it is to share some of the intimate subjects about life with IBD, and how scary it is, and to this day, I still sometimes struggle with certain topics, you know, and am I ready to post this right? Am I ready to put this out in the world, right? And I still get nervous, so you know, if you're out there sharing your journey, too, it's okay if you get nervous as well. But what I realized is that the benefit outweighs the uneasiness on my end, and I've always been, you know, really dedicated to being real, and sharing, like the real life in all caps, right, like real life with IBD and IBS because I do live with both, and not sugarcoating it. So you know, it's not all doom and gloom, but it's not all great either and so making sure that I'm just really transparent, and really honest, and really real, literally, was something that I'm dedicated to.

So what made me you know, decide to share that real version, if you will, was recognizing that I could help people and that by simply sharing my journey, I could be giving a roadmap to somebody else, I might not know how many people I impact or how many people I can help, and I may never know, right? But I know that I can help some people. I have learned firsthand after sharing, that I am touching lives and I'm realizing that I'm helping people by being vulnerable, and sharing that real side of life with chronic illness, especially, you know, IBD, and IBS. It has been really tremendously beneficial to me too, because I have realized the beauty of my own vulnerability, and the beauty of my own story, and it's helped me feel validated that every story matters, including my own.

I think it's easy to get caught up in, you know, my story is different than this person, or that person's and like, is my Story valid? And, you know, maybe this person has had this and I haven't, can I still share it? Yes, the answer is yes and sometimes I have to remind myself that, and sometimes I have to be my own advocate for myself, and I have to practice what I preach. But that's kind of what initially drew me to it. And then having people ask me about my story, and actually want to hear it and listen, that is where everything kind of just made me realize I'm on the right path. Like I'm doing the right thing.

Erin Judge: Yeah, that's awesome. I love that. Yeah, I agree, and I think that there's so much beauty in sharing the real, I think that normalizes the conversation, and I think sharing the differences also normalizes the conversation because we know even if you fit in the box of ulcerative colitis, even if you fit in the box of Crohn’s, even if you fit in the box of IBS, which is a messy box, you know, like, that person looks different. We have different lives, we have different backgrounds, we have different symptoms, you know, the way that we process our symptoms look different, like our mental health is all different. And so when we share those differences, I think it does allow us to normalize the differences themselves and realize that, okay, it's not just one thing, like, you know, Crohn's disease doesn't look one way or this doesn't have to look one way, and it's important to share all the sides of it like you mentioned because it's not all bad.

I'm very big on like, not necessarily the whole toxic positivity, like put the positive band aid on it, but I think there's also, you only have one life, right? And if you're dealt a hand that sucks, and it's not fair, it's okay to say it sucks and it's not fair. But it's also okay to take what you have and decide like, okay, this is my life, like, what am I going to do with it?

Molly Dunham-Friel: I couldn't agree with you more.

Erin Judge: Yeah, seeing the beauty and I always talk about how I'm grateful for my own IBS, and I get a lot of hate for that.

Molly Dunham-Friel: You do really? Wow! These are terrible diseases, but they teach you so much and you learn and grow into a different person you probably never would have grown into possibly.

Erin Judge: Yes, and the empathy, like the empathy that you have for people when you've like, been through something and, you know, you don't have to go through the exact same thing someone else does, to have empathy, but even struggling with something that did feel isolating and overcoming that a little bit and getting that vulnerable with people being brave to even talk to a doctor who, you know, shouldn't be, there shouldn't be a barrier there, you know, all of those things like, set you up with so much empathy for other people and like, you can connect more than you probably ever would have, like, you find a lot of gratitude for a sunny day, you know that other people may not, you don't take things for granted.

I know that there are some, like dark moments where you don't see that, that's where the hate comes from. It's always the you know, they're hurting, you're bleeding and in pain, you know, you're not gonna see that and connect to that, and that's okay. But I'm really big on sharing it, because I think it is good to, like, hear all the perspectives and be there. And when you're bleeding, sometimes it's nice to share that a little bit, too, you know, so we can see that there are there's ups and there's downs and there's nuance. And there's a lot of beauty, I think, in the differences, even if it may not be considered beautiful the time.

Molly Dunham-Friel: Absolutely.

Erin Judge: So living with a chronic illness, and you kind of talked about, you know, advocating for yourself in a way of sharing your story and speaking up and using your voice, what are some other things that you've learned along the way? You did mention when you got diagnosed, you didn't get a lot of resources. So now, I know you have some, because you share them, so where did you begin to learn? How did you begin to learn to really advocate for your care, and even yourself as someone living with ulcerative colitis that did deserve to be heard and cared for?

Molly Dunham-Friel: Sure. So I learned sort of to speak up for myself and advocate for myself somewhat because of my parents, and just sort of their nature and their involvement in my diagnosis, and that me letting them know, like, this is what I have, this is what's going on. And, you know, my mom particularly like, she tends to ask a lot of questions and so if she's asking me the questions, then they sometimes get, you know, relayed over to the doctor. So I've always been a question asker and that's one of the first steps for advocating for yourself is just asking questions. But really, I had to figure it out on my own, I primarily did it by researching the internet, and looking for credible sources, like going for my IBD research, you know, looking at the Crohns & Colitis Foundation, and other reputable websites where I can learn about my disease. And that is definitely one of the best things that ever could have ever done. I still do it, read books about IBD, fully understanding what it means what, are the options, and kind of getting the full picture. The more that I learn, and the more educated I become, the better patient I'd become in a lot of ways. So that's kind of how it all started! Do you want me to share like any tips or suggestions that I have?

Erin Judge: Yeah, I mean, absolutely. I think one big question that comes up is, how do you ask those questions to your doctor, when you feel overwhelmed, and it's rushed, or how do you take the research that you did yourself into the doctor who has more education and experience than you? You know, those are the things that I know people are always curious about! I’m interested to hear how you overcame that, because I’m a health provider, so I'm not that helpful, but you know, someone who doesn't have this, like health provider background, how did you navigate that and actually do it?

Molly Dunham-Friel: Sure! So early on, I advocated for myself, mostly by just being inquisitive, and asking a lot of questions that I came up with, on my own most of the time. But if I didn't know what to ask that, always the question I asked was why? Why are we taking that treatment? Why are you suggesting a colonoscopy? Why are you suggesting that other treatment? Why are we doing this test? Could you tell me what this test means? But like, why is kind of like the underlying question that if you can't remember anything, if you could just remember to ask why, you're on the right track.

But then what happened is not only did I kind of learn more about my disease, but I started writing questions down and bringing them with me to my appointments and that definitely was helpful. If I researched a new medication, or if I found out about a new diet or a study, I would write down those questions and then I would literally just say, hey, I have a couple questions, I wrote them down so I wouldn't forget. And I would just go through them. And you know, sometimes it would be a yes or no answer from the provider and sometimes it would be you know, we don't have any research on that. They kind of just kind of vary right and it depends on which provider I was talking to as well. But doing the research first, writing down your questions, bringing them with you and then letting them know that you have these questions and you wrote them down because you wanted to remember them and engage in that dialogue is definitely a great place to start.

I do feel like I have a little bit of an advantage because then I got a master's in public health and healthcare management policy, which definitely helped me understand the healthcare system. I also was working in healthcare a bit so I understood the constraints of the health care provider and their limited amount of time, I understood the demands that they had and so I tried to be as efficient as possible by you know, if they already answered one of my questions, skipping over going to the next one, and being as clear and concise in my communication with them. And then as I kind of got used to this, I became more empowered in asking questions and in just advocating for my own health.

Another thing that really helped me is when I started advocating, to state and local legislators and going to Capitol Hill, and like actually talking to people who get to make the decisions about our health care. At first, I was really nervous because I felt unqualified, you know, I'm just a person, I'm just a constituent. But something that I realized that has helped me in a lot of aspects in life is that no one else has lived my life, no one else has known my story, and no degree or education or job qualifies you more than me telling my story, and me sticking up for myself and for my body. And that same goes to every other patient out there. And I think that's definitely tremendously helped me, and I hope that that will help other patients too.

Erin Judge: That's awesome! That why piece is so important. And even as a provider, you know, as a dietitian, I love when my clients asked me more questions, when they ask me why, I love when people come prepared and share. You know, the disclaimer, as always, this might not be related, or, you know, this has been brushed off in the past. It's like, I love hearing that, because it's pieces of the puzzle, that, you know, save me time from looking into because you're sharing it with me. And yeah, it might fit, it might not, but at least I can add it to like my, you know, assessment of what I'm looking at. And then asking why, it challenges the providers too in a good way of like, you know, are there other options available or do I know I'm recommending this? And if I don't know why I can get back with it, you know, maybe I needed to dig into it. And, you know, that's a piece of safety and keeping people up to date and there's nothing wrong with that. If I think it's a big red flag, if a provider doesn't want to answer or tell you more, that's a huge red flag.

Molly Dunham-Friel: Oh, big time. Yeah, or if they brush you off and don't answer you. A lot of times, it's easy, especially with IBD and IBS, you know, to just say it's just the nature of your disease. That's not a lie, necessarily, it’s just dismissive, and it's not helping the patient that is hurting, and also the whole invisibility factor. You know, a lot of times you can't tell visibly that the person is living with IBD, or IBS, or how much they're struggling or hurting. It's very easy, it's so invisible a lot of the time granted, not always, we're very aware of that, but many times it is. And so it's just easier, I think, sometimes for maybe busy providers to dismiss us sometimes. Not you of course!

Erin Judge: And I know it's something I think we give doctors a hard time and trying to be better at that, I think I'm a little bitter towards doctors that don't do well with my patients and my people because I care way too much about their care and there's a lot I can’t do as a dietitian, like I need them to do it. I also know they're really pressed for time and they're not treated well, there's not enough of them and sometimes they're not incentivized to do their best. And I think that that's a problem and I know that from the inside out, you know, that is something that's being pushed to be changed, especially in digestion because we do have a lot of research. We can't just keep saying like, oh, no, we don't know, it's like, we have more information and that's a good thing and like, we need to push for that. And if providers aren't doing a good job, we need to find new providers if we can, and we'll get into that, because I know that's not always as easy as it sounds, especially in the US where we're based, in our health care system.

And one thing I would add, I loved your tips, those were awesome. The one other tip I always give that I think could be helpful too is asking why and asking what are all of my options. I think sometimes that gets missed where maybe a provider will give you one option and sometimes they're doing it from the best place of I'm simplifying this for you and I'm going to give you what I consider to be the most effective option. I always use MiraLAX for constipation as a great example. “Take MiraLAX daily for constipation".” It will work you know and it's a good recommendation, but is that all the options you have for constipation? No. So if you are someone who, if you want just the one thing and you want to do it great. But if you are someone who's frustrated that maybe you're not getting a lot of answers, or you're like, well, that doesn't seem to line up with what I read, it's also good to say, okay, what are all of my options, because I want to choose. And that's a really easy question to ask just like, do I have other options? And if someone says no, rarely do you not have other options. So that could be something too of like, really wanting to find people that are willing to look at other options with you, and educate on why they may not recommend it. And even from a medication standpoint, there might be other options, there might be some that actually aren't great options, but being able to present it to you as the patient, so that you get to decide what you want to do, because you're in charge of your care. The doctors is there is the guide, they can't make you do anything, right, like you're in charge and so asking that question can be helpful.

And something my patients have done recently is, you know, we always write it down, I always say write, like you mentioned, write everything down before you go, it's your safety, you know, if emotions come up, you've got your safety, if they dismiss you, you can hand it to them, you know, you got that piece. But I always like to say too is to write down what you don't want. If you do not want to take a medication, if you do not want to do a certain thing, is it going to be possible that you get the result without doing what you don't want? Maybe not, like you may have to take dedication, but it's helpful to write it down because then in that moment, it's a good reminder to yourself of like, wait, that's the recommendation, I don't prefer to do that. And it helps to just say it sort of like, you know, birthing plans, you know, they recommend you write it all down and you present it as like, this is my preference. That can be so helpful just to like, give yourself that like, almost like a little bit of armor, like, okay, I know that I prefer not to do this, or like you have a past eating disorder, like I prefer not to be told to be on a diet. Like I prefer not to do that. And being able to write it down is so helpful.

Molly Dunham-Friel: Absolutely! I would also add another thing that's great and helpful to write down is everything you want the provider to know. So like, what's going on with your bowel movements? Like what's going on with your work life, stress balance? What's going on in your life? Like, what's going on? Like any symptoms that you're having? How long have you had and how severe are they? Write it all down so like when you get there, maybe you're feeling fine in that moment, you don't want to just say everything's fine and then forget that like, you know, not that you're going to forget that you're having you know, bloody stool, but you might because sometimes we get nervous, sometimes we get rushed, sometimes the providers rushed. So writing down anything you want to communicate with your provider, really in general, it's just really helpful. And I find it makes those really short doctor's visits way more effective and efficient. And then just like you said about asking about other options. Also asking, say you do have you leave there with a treatment plan saying what's the next step? What do I have to look forward to if this isn't working? Now, I mean, let's be optimistic here, but like, what am I looking at? If this doesn't work? Is it surgery? Is it a medicine?

Erin Judge: Yeah, absolutely asking next steps. What are we assessing? What changes am I expected to see? That is so important and it's something that does get missed, especially if it is a medication for sure. So it's like, am I looking for a certain result? Are there side effects I should look out for that are normal, you know, so that I'm not freaking out in the middle of the night, but I'm having them? And who do I reach out to like, what's my next point of contact, and all of those things are so important and not always given. And those are even sometimes things that you can ask, like, maybe the doctor is in a rush. You can also say, hey, is there you know, a nurse on staff? Is there someone from the front desk that I can talk through these few questions I have, like, it's okay to say that too. And, you know, even if the doctor is rushed, like that doesn't mean that you don't have access to anyone, like there's someone there that can talk to you. And maybe not right away, maybe they need to call you but they're there to serve you and so if you don't have what you need, ask for it.

And I think I'll add one more thing, and then we're going to get into insurance talk because that's a big one, especially in the world of IBD. Um, but whenever you have multiple providers, something that I think is assumed, and I even assume this sometimes, which is very naïve of me is that oh, they're just gonna naturally talk to each other, right? They're gonna naturally just know what's going on. Even if they're in the same system, they are not.

Molly Dunham-Friel: Even if they are in the same practice 2 offices down, it doesn’t matter.

Erin Judge: They're not communicating, they should be sharing your notes, but they're busy, right? They're not going to look at that. And so if you're working with other providers, even early on, like advocating that they communicate to each other, and you have the ability to request that some people do that, I mean, I have people who won't talk to me, because I'm not in their system. But you know, if you're working with a dietician, if you're working with a therapist, maybe on an eating disorder, or disordered eating piece that you need your provider to be aware of, or maybe you're working with a psychiatrist on mental health medication, your IBD doctor needs to know about that. And you know, that's really important. And so making sure that people are communicating and connected, and it's okay to even ask providers, let's say you have a primary care doctor that's very involved and really into your care and maybe your gastroenterologist was bit dismissive, your primary care can also help get some information for you. So it's okay to ask your team and like really use them as a team. Because there's a lot more that can get done when providers do share information.

Like as a dietitian, you know, I'm looking at someone's food log, I'm seeing pictures, I'm seeing, you know, all these details that a doctor would never be able to see, like, there's just no way because they're not looking at it and sometimes the person living in it doesn't see some of those things. And so I can share something that maybe even the person living with it may not be able to share in the same way or, you know, the doctor would never know if I'm connected to them. And so that's really important, too, is like those people that are really listening or really, you know, part of your care that you trust, like, connect them, because they're going to help you with that, and help you even prepare, like it's okay to ask for that because you don't want to waste time.

Molly Dunham-Friel: I agree. And if they can't connect, what I tend to do is I do the communicating. I will bring my paperwork and I will say this is what Dr. so and so said, she's my this or that and I can hand on the paperwork like this is what I'm working on with this provider. And that has been working for me because a lot of them truly just don't work well together or don't have time to work together. That's sort of a backup plan as I kind of manage the communications.

Erin Judge: Yeah, I do that with people, send him a little blurb of like, hey, just send them this message, like, copy and paste it, let's keep it going. Yeah, that works. There's ways to kind of work around it. I think it's hard because when you're living with a condition, and this is where we're going to segue into some insurance talk, because when you're living with a condition, it's already a full time job to live your life, without the condition, another full time job to live your life in your condition and then another full time job trying to manage all the pieces that go into managing your condition, which includes your appointments, all this stuff, we just talked about your communication, the actual changes you're trying to make, but also your insurance plans. And this is something you've brought up and I love your conversations around this and it's one of the main reasons I wanted you on the podcast, because it's we don't talk about insurance. It's like money, we don't want to talk about money. Right? And I've done it where I go to an appointment, it just happened to me recently and then I get a bill. It's like, wait, what happened? Like I just it was just a visit what happened with that. It's like, oh, my insurance doesn't cover the specialty practice, you know, so now I need to pay the money. And I didn't know that going in and that can be so defeating and frustrating. I would love for you to talk a little bit about what you've learned in your education and kind of your profession because you have a little good insight there but also just living with your chronic illness and navigating your insurance plans and coverage.

Molly Dunham-Friel: Sure. So you're not alone in that, I actually spent several hours crying this morning because of health insurance, so I am with you in the trenches. And I always will be because I'm not a health insurance expert by any means, I'm more so an IBD and IBS patient leader and advocate that's trying to figure it out and just teach everyone about what I do know and what I do understand, which doesn't always feel like very much but the best advice that I have is getting to know your insurance plan intimately, the best that you can. Now that is not easy to do because insurance plans and brochures are not written in a language that is easy to understand for the average person. They're not written at a level for literacy for all people. Even people who have lots of education struggle to read them okay, so don't get defeated. It is not you. Okay?

But the first thing would be to read the insurance plan brochure. How do you know you're looking at the insurance plan brochure? Well, it's going to be over 100 pages long, most likely. So that will be like one tip for you to know, if it's just a short little brochure that just shows you like a few bits of information about your co-pays or your premiums monthly, that's not your plan brochure, your plan brochure is going to be a long document and it's going to have tables in it, it's going to have charts in it, and it's probably going to have a lot of text in it. And it'll essentially, not clearly, but essentially, list out what your coverage is for everything from going to the primary care doctor, physical therapy, surgery, hospitalizations, everything in between, it's basically your guide. And that is what you want to learn and that's what you want to understand the best that you can because everything every time you go to use your health insurance plan, what they do and do not cover and how much they do and do not cover is all based on that brochure. So every time you call, they're referencing that plan brochure. So it's helpful if you get to know it the best that you can, because then you can check and see, well, actually on page 57, it says this, are we on the same page, things of that nature. So that's very helpful.

Also, once you kind of get to know that plan, which is very, very hard to do, I do suggest, you know, searching for keywords, if you're looking for something specific, I do find that helpful. But finding out which providers are in network, and at what locations. So you would think that a provider, you know, say, Erin, you're in network at one location, but then you go 15 miles down the road, and you practice at another location, you're not covered there. So making sure that your providers in network, but also your provider in that location is also in network, then also making sure that even though you might be seeing a different provider in the same system, health system billing system, that they're also in network, and that they're also going to cover your care.

So the perfect example of this complicated mess is getting a colonoscopy. So you are getting essentially four bills, if you get a colonoscopy, if you have IBD typically because you get biopsy. So you're getting a physician bill so that physician needs to be in network and you'll pay the physician amount, it could be a copay or coinsurance, then you're going to be paying for anesthesiology, so is that anesthesiologist in network or out of network and then you pay a fee based on your health insurance, then you have pathology, which is taking your biopsies, sometimes it's under laboratory, and then there's sometimes a facility fee. So like if you're getting a colonoscopy in a hospital, it might be cost more or different than if you're having it in an outpatient center.

So getting to know what questions to ask, understanding the coding and asking and getting empowered and yourself to say, hey, doctor, what codes are you going to be billing my colonoscopy under? Are you billing it, you know, they can give you a code, it'll be a code with numbers, sometimes numbers and letters and you can tell your insurance this, hey, they're gonna coat it this, it's preventative or it's diagnostic or it's exploratory. Every little detail matters with the health insurance and the more fluent you get in these terms and the more confident you get talking to your healthcare provider about them, and then also communicating with your health insurance company, the more competent you will feel but also the better care, the better you'll be able to manage your care.

I also recommend creating an online like portal with whatever your health insurance company you have and then getting in the habit of logging in routinely, if you're using health care, if you're not using it, you don't probably need it. But if you're actively using your health care insurance, have that portal, get in the habit of regularly checking on your claims regularly, checking on your explanation of benefits. And then if things aren't getting processed following up, you know, for instance, I went to the Provider a couple weeks ago, the claim still hasn't reached insurance. So you have to be sort of the middle person between your health insurance, and then wherever you're seeking care. And that's a lot to take on and understand.

I also think it's helpful to know your copay or your coinsurance which is really understanding your coverage but understanding the difference between a coinsurance and the copay, but then also knowing what are they for what, so like knowing okay, I know my copay for primary care, but I also know my copay for specialists. And now as of today, I know I have coinsurance for physical therapy and kind of just understanding these mechanisms. I also really recommend writing down the phone numbers, so whatever phone numbers you need, and then writing down exactly who they are. So if there's a billing department, notate that, if it's pre-authorizations, notating that, it's pharmacy benefits, and just keeping a record of that, and the more organized records that you keep, I find it just easier to navigate

Erin Judge: So many things!

Molly Dunham-Friel: I could go on for hours, but those are like, some very key tips I think that helped me a lot. I have more, but you know.

Erin Judge: That's, that's incredible. Yeah, the organization is so important. And I mean, I've fallen guilty, too, I think this is another piece you can get into is like, you know, just choosing the cheapest one, right? It's like you're trying to set up insurance, especially right now. And I think, you know, we all want this to change, hopefully, we get into a place where our health care system and health insurance system changes. It seems to go downhill first, like, who knows where we're gonna be, it's kind of a mess and we're in that together. But it can be tempting, when you're signing up of like, oh, let me just get the cheapest option and then I'll just kind of deal with it when it comes. But when you know that you have things that you need to be doing, like you know that you have gut issues, so you're probably going to need a specialist, you might need some testing run this year. You're not going to know that before things kind of hit the fan, but when you start to know your condition a bit more, you're going to know maybe some of the specialists that you may want.

What would you say to someone who's maybe looking into their insurance plan, like to sign up? Like, are there some places like the brochure available, and again, I think I fall victim to this, because I haven't read that. And so that's a big reminder to me, but for you, whenever you're choosing a plan, or you know, when it's that time of year, again, you get to sign up and change your plan with your provider or your insurance company. Are there some things that you look at, or people you call typically to make sure that what you need is covered?

Molly Dunham-Friel: Sure. So I would say picking out a plan is almost harder than navigating the actual plan. I feel like it’s like gambling because you don't, even though it's all mapped out in that plan brochure, it's still hard to understand that plan brochure to fully understand what your full cost is going to be. But the best place to start is writing down all of the numbers and comparing not just how much you pay monthly. So there's a lot more costs involved. It's not just the cheapest premium, but it's how much is your deductible? What's the out of pocket max? What is your copay and coinsurance looking like? Is it 50-50 or is it 80-20? Then kind of googling, like, really just you can google like, average cost of an office visit, average cost of a level five, visit average cost of a colonoscopy, and anesthesiology, and then you can do 20% of it, or 80% of it. Just give yourself kind of like a ballpark and then just writing everything down.

Understanding your care, if you can, like is great ahead of time, but it's knowing what are you paying monthly and your premium? How much is your deductible? And then what are you going to be paying when you go to the pharmacy? If you can figure that out ahead of time by calling and how much you're gonna be paying when you see your providers? Are they going to cover your providers? And then say you need a lot of surgeries or you're in and out of the hospital…..what's the hospital coverage like, what's inpatient like? If you're planning on having a baby, what does that look like? What kind of coverage do they offer? Will they cover you for a C section? Will they cover you for staying in the hospital? How many days? Does it need pre-authorization, things of that nature? That's really in that plan brochure that I mentioned earlier, which, like I said, is not easy to understand. But really just kind of understanding and writing down all of the costs and kind of doing like a cost analysis. And the last time that I selected health insurance, I reached out to someone that was a friend of mine who works in benefits. And I was like, I'm trying to figure out which plan to select, these are the premiums, here are the plan brochures, can you help me walk through which one should I pick, what's more conducive, these are the health care needs that I have. And that's kind of how I made the decision this past year. Not everyone has that and I haven't typically had that in the past, but if you do know anyone that has even just a fraction more experience than you call them, walk through it with them and get that advice. Don't be ashamed to ask for help.

Erin Judge: Yeah, that's great. The first thing that comes to mind almost a funny example of that is do you watch the office? Not really what I know about it. Do you know about the episode about Tuesday and a health insurance plan?

Molly Dunham-Friel: Not really what I know about it.

Erin Judge: Do you know about the episode about choosing a health insurance plan?

Molly Dunham-Friel: Oh, no, but you have to tell me!

Erin Judge: You need to go YouTube it or whatever. I don't know exactly what episode it is, but you just had to search office health care plan, it’s the people choosing what health care plans are we gonna offer and like, how do we cut costs? And like they're trying to get people's conditions which employers can't really do, they can’t ask you all your conditions.

Molly Dunham-Friel: Like, what do you have? How much are you gonna pay? Yeah.

Erin Judge: I mean, it's not good for anybody right now, like health insurance is just not something that's really easy to navigate on all sides. But you're right, like, if you have, you know, an HR department or someone, you know, that is over benefits, like, they may not know it all, but they at least spent time looking at all the different plans and chose what types of plans to offer and so they may have resources you don't have into the back end of the plans. And so if you trust that, you know, you can go and talk about that and, you know, workplaces can't discriminate against you because of your condition, like they can't discriminate against you because of your health care needs, like if you need more coverage, and like you're discussing that with someone in benefits, like they shouldn't be able to like dock your pay or you know, do anything like that. So if anything sketchy happens, if you try to bring it up and talk to someone that's a red flag, I believe.

But it's good to talk to people and see and something that we've learned from our mistakes, is now that we know our insurance plan, and know that we can't see specialist providers, that's part of our deductible is now we put aside some savings every month, as part of that. And that's something that, you know, the money part, like it sucks how much we have to pay, you know, when you live with chronic illness, I'm a provider, I don't take insurance and I get that, like people pay out of pocket, and it's hard, insurance doesn't cover what I do anyways, which is also something that, you know, we don't always understand that, like insurance doesn't cover everything that you need, providers don't always get paid for that work. And so it's helpful too to set like, knowing what you your coverage is and if you're at a point where you can't change your coverage yet, if you do need to look into it, that those pieces might help you decide like do I need to put aside a little bit of money that I can pay for, you know, my GI visit that I know I need to have? And then you know, making sure you get the most out of that visit like that helps with your advocacy, knowing I saved for those, like I'm putting my own money at stake here, I really need to make sure I'm getting as much as I possibly can.

And then with that piece, I know keeping up with your receipts and everything right? So have you dealt with that as much on if your insurance doesn't cover something, I know that most providers will bill the insurance company and try to get it covered and then you get the bill, which stinks. Have you had good experience with finding out on the front end before you have an appointment if something's covered? And then if you had experience with when you get that bill, kind of some ways that you navigate that before you just pay it?

Molly Dunham-Friel: Oh, sure. So basically, anytime I get a bill, I scrutinize it. So I highly recommend doing that too. Because just because you get this bill doesn't mean it's right. It doesn't mean that it was coded, right it doesn't mean that it was billed, right, it doesn't mean your insurance reviewed it in the right way. It doesn't mean it's right. Okay. So like just know that. But I get it, it's alarming because you get this bill and you're like what, oh my gosh, like why the heck do I have health insurance? I totally feel you with that.

So first of all, I look at it and I try to read it and as detailed as I can, and then call the number, there's always going to be a number on your bill, it is probably from the provider's office or wherever you sought the care. Call them, ask them, did you build this to the right insurance? That's something I've been dealing with a lot with switching insurances is they’re billing the wrong insurance and so things are getting denied, or things are wonky, and saying all kinds of things. And I'm like, this isn't right, I need you to, you know, void this and submit it here. Or, you know, you billed this wrong, like I actually didn't have this service, I had this service or I didn't see that provider and saw this provider. It's not always right. And so doing the detailed work, knowing what you did get and then if you don't understand it, ask them to walk you through it say like, hey, can you please help me understand what this bill means? Why was I billed this way? And then you kind of have to be the go between between your billing and the health insurance. So calling and figuring out what's going on on your health providers side, but then also calling insurance and be like, can you please explain why this bill is this way? Why is my coverage this way? Can you help me explain my coverage for XYZ services? And is there a way I can get this covered? Does it need to be a different CPT code? Does it need to be at a different hospital? Does it need to be a different provider? Like what's going on here? How can I remedy this?

And I've definitely had plenty of experiences where things have been denied or didn't make any sense to me and really persistence is key in following up, in calling and asking questions, writing things down when you get the answer, writing down who you talked to, what their phone number was, who do they work for, do they work for an insurance company, were they with the billing office at your practitioners office? And then you kind of have to really be like a project manager and manage each claim. Unless, of course, it's correct and then you just can wash your hands clean of it. But kind of really being a detective and getting to the bottom of it, making sure things are accurate, don't just automatically pay something and assume it's correct.

Erin Judge: Yeah, that's so important. And it was one thing that you mentioned, I think is really important too, is keeping notes as you do things like a note on your phone or Google Doc or notebook or whatever you want to use of who you saw, and how long, something that insurance that people bill is they billed per, like 15 minute increments, typically, like the appointment time does make a difference, which is sometimes why you're rushed. And, you know, we don't want to always assume that billing companies aren't doing what they're supposed to, but let's say they bill longer than you were actually there. Like, that's a problem. But you know, you want to keep up with, like when you get in and when you left and that's when the doctor is actually seeing you and like when they're what they do. And if you're not sure what they're doing, like you can ask and write it down, like, hey, what would you consider the service you provide? You know, just write it down? Because that can help because sometimes those bills come months later, and it can be hard to remember.

Molly Dunham-Friel: Oh, yes, that's another thing everyone needs to realize that I am struggling. I struggled with this to this day. I talked to my health insurances today and I was like, what's your turnaround time on claims because my last insurance last year was pretty quick, they were a week or two weeks, but this one is like a month or so. And even my last insurance, it was like I still haven't received a bill for things for the entire year last year, and I wouldn't know that I owed until I called. And so really, you know, even if you haven't received a bill, don't assume you don't owe anything either. Just because you haven't received a bill doesn't mean that you're off the hook. Sometimes your claims are held up. No one's processed them. And I think, you know, being amidst a global pandemic, being amidst the great recession, there's a lot going on, and a lot falling through the cracks. Like, there's no blame here on anyone or any thing, I'm just stating that we have to follow up and be a little bit extra diligent, because I've just noticed that things aren't getting processed, things are falling by the wayside in terms of claims, processing times, calling me you know, you can call them like, oh, I don't know why this wasn't processed from literally last March. So I'm still dealing with that and also realize, like, things will come out of nowhere, sometimes, because they're so far from the day of service.

Erin Judge: Yeah. So when you keep your notes that keeps you secure in what you're doing, so you're not playing catch up, just like, you know, preparing for taxes and preparing for all those things. I think it can be tempting to hear all this and feel overwhelmed, because it's a lot!

Molly Dunham-Friel: I know, absolutely, I overwhelmed!

Erin Judge: I know, I’m overwhelmed! You know, I got the bill and it's still stunk, it was sad. Like I cried a little, it wasn't like it was, you know, I'm so grateful I was able to pay it, you know, it's not like, you know, that was the worst thing in the whole world. And I was grateful for the appointment I had, but it stinks whenever those things happen, right? It's it makes you feel defeated, it makes it feel like it's a push back. And it's hard thinking about all the things you need to do. And it can be tempting to just say, well, what's the point of like, trying, right, I might as well just like, stay in my bubble and just not even do anything and just give up on health care all together. And I encourage you not to do that. I think this is the power of community where we get to have these conversations and challenge it too, you know, if insurance companies aren't providing information, like there's probably some like, people lobbying and advocating for that to happen, right? Like we need to figure out where that is. And I know you're pretty passionate about sharing things that are coming out, like I know you share clinical trials and do you also keep up with any advocacy around, cuz you said that you have some experience in like the lobbying piece, right?

Molly Dunham-Friel: I do, I haven't recently been working on anything since COVID hit, I haven't really just had a chance, I have done just like, no additional, you know, reaching out to my legislators, just like the normal advocacy that I would do to like help move IBD research forward. But I haven't been doing any, like legislative advocacy recently. But I do try to keep up with just like, knowing what's going on, to share so that other people can also, you know, voice their concerns and things and things of that nature.

Erin Judge: Yeah, yeah. That's, it's so good. And those are good things for us all to keep up with. And I haven't seen a lot on insurance, and that is a problem. Like, it's a problem that, it's a problem that insurance doesn't cover and I see a lot of that from the dietitian side of like, there's always people lobbying for, you know, providers to cover our services, because people can use it and it's really important in the health care system. But then they're not covered. And so that's a, you know, that really blocks access to care. But then also, you know, no one's really talking about the fact that the resources that insurance companies provide, as we're choosing our plans, and as we're navigating it, it's not in the language that we can understand. It's not easily accessible. No one's really being held accountable. You mentioned this recently, but, you know, no one's being held accountable to like, being ethical, and like keeping patients in mind, you know, it's like, there's, it's so like, you know, political, like, what they allow, what they don't allow, and just all those different things, and they have to be that way, but they also should be held accountable to communicating it better. And so, that is interesting. So we have to keep an eye on anything like that that is going on behind the scenes.

Molly Dunham-Friel: Yes, I mean, I'm sure there are, I think that a lot needs to change, right? And a lot like, there's just so much room for growth. I think it's really challenging I think and infuriating, in my opinion, when you learn that you're a patient to your provider, but you're a customer to your insurance company. And everything boils down to money and if you want to get answers, you follow the money. Typically, that gets you the answers, which is unfortunate because for me as a patient, like I want to be well but money and finances via insurance and out of pockets and all of these different things, like finances are a barrier and sometimes it can be so defeating to feel like I can't get ahead in life, I can't do anything else in life, so much of my funds, all of my funds, you know, feel like they have to go towards health care. And it really just puts people with chronic illnesses, like at a huge disadvantage, even for those of us that are pretty privileged to be able to cover our care. It's a huge stressor and it makes me feel sick and so much more stressed, and so anxious, and mad and angry sometimes as well because I know that there's other people going through this too. And I know that there's other people going through this where they don't have anyone to call, they don't have resources, they might not have internet, they might not have the literacy skills to read even at the fifth grade reading level. Things for the public are supposed to really be at an eighth grade reading level or lower but these are like legally binding documents that are very confusing and I don't even understand most of them and so how is someone who doesn't have a health background going to understand them? How is someone from another country or how is someone who doesn't speak English, or speaks multiple languages or just is from a different background? Like how are they supposed to get the care that they need? And those are things that frustrate me and that I would love to see change.

But since there aren't a ton of like awesome healthcare resources out there, one thing if there's anyone that's looking for, like how does health insurance work from like, kind of a bare bones high level overview, I did find a YouTube video last night that I thought was pretty helpful and it's called Health Insurance Explained. That's what it's called. So I think you could probably just google Health Insurance Explained you on YouTube, and it's a little video that kind of just explains you know, deductibles, co pays, coinsurance you know, you go to the doctor, you pay x amount but it may, you know, it may be this and it may be that, we don't really know. And it kind of just kind of walks you through. So anyone who like really just wants to kind of get a basic understanding of like how it works in the US, that's, I found it like a pretty good video, and I believe it was created by the Kaiser Family Foundation. And so the resource was, I thought it was pretty good.

Erin Judge: Yeah, and I can link to that in show notes too, I think that would be helpful if anyone wants to know that and you're right, things need to change. That's the value of getting into communities like this and talking about it and, you know, figuring out what's working for other people and like, it's okay to ask that, like, how are you working with your insurance? And some people know, and some people don't, but you know, it can be so nice to figure it out, what can work for you so you have that access that you need. It's just a lot, and I think, you know, even as, again, as a non insurance taking provider, something also to know is that insurance doesn't always cover things, and it makes it hard on the providers, it's hard on the person. I don't think it's hard on the insurance companies, I know that like they don't always have the money and that's the problem, right? It's like, they need to, like use their funds well, and if we all have needs, like, that's just not how they're set up to work, right, because they have to pay all right people and that money we're spending on health insurance is paying their people and you know, it's changing all the time and there's a lot of stuff going on with it, it's good to know, and even when we're voting and things like that, like those are good things to understand, because it can really impact your day to day and like what's going on with you.

I see a lot of things moving towards cash, like a lot of great providers, especially after COVID-19, like a lot of, some of the best providers in the field, like, are worn out, and they're moving cash base, and I'm cash base, so I get it. But I know it's so hard on on a patient and even as someone's like, I get resources, and you know, we go cash base sometimes like for therapy and physical therapy and things like that and it's not always easy and it's like, it's hard making those decisions and the budget isn't always there. And, you know, it's just, it's a lot. And so there's a lot that we need to do and we're always thinking about in our practice of like, how do we educate on a free level? How do we provide things at a lower cost? Like, you know, how do we really make things as accessible as possible while providing the quality of care that we need to? But we never take $1 we get for granted, like, if someone is giving us their money, it's like, we know how valuable that is because it could be used to, you know, go to somewhere else and do something else.

Molly Dunham-Friel: Absolutely and as patients like we, or at least myself, but probably a lot of patients, like we have to think very strategically, like if we're going to go see a provider that's cash, right, like, we have to be very calculated in that and it's a huge investment on the patients end, and I have noticed too, like a lot of, and I applaud providers for starting their own businesses. My physical therapist is one, for example that is, as of next week will be private practice, I had a mental health therapist that just went private practice, you know, not doing insurance, because it's a huge hurdle for the provider, especially if they're an independent provider and a health care system isn't dealing with insurance for them, it’s a huge burden and a time suck for them. and so I think understanding how it works is helpful but then also, you know, just continuing to use our voices, like you mentioned, like voting and understanding, like when you're voting like, are these people are in favor of insurance that will meet your needs or not, and just kind of understanding, you know, who are you electing, and being very mindful of, you know, where you put your dollars and knowing that you do have power! You’re not totally powerless.

Erin Judge: Absolutely, yeah. And learning how to take advantage of what you have well, with your insurance is so important. Because if you have coverage you don't know about, you know, it's so important to know those things and figure that out. And even if you do pay cash, I think something else, just our last thing, because we get this in our practice where some of our clients even though they pay cash to us, what they pay to us can get reimbursed by their insurance company and what they pay can also go towards deductibles, which can actually go down other health care costs. And so that's also important too, if you are going into a cash provider and that you talk to your insurance company or figure that out too, can it go towards your deductible which might save you money later in the year and that might work out your timing of things, can you get reimbursed for out of network services?

Molly Dunham-Friel: Absolutely, or do you have out of network coverage? Because sometimes your health insurance does have out of network coverage, finding out what that is and then making sure when you do go to a cash pay office getting that super bill, which is like a printout that you can you can literally just like, can I have a super bill, I want to submit a claim to my insurance. I'm sure you're very familiar with that, I'm sure you give them to your patients all the time and then you know, as the patient, you have to be the manager by sending into insurance, following up and then you know, kind of figuring out all of the logistics after that, but it's totally an option and something to look into!

Erin Judge: Yeah, yeah, you never know, I've had people get 100% reimbursement, I've had some get none, you know, and I will say with the super bill, as a provider, I can't diagnose, so I can't actually provide a diagnosis code or diagnostic code, s so I need proof of diagnosis. So that's something too to think about is like printing out, you know, or sharing health records and things with other providers who may not have the ability to do a diagnostic code, which you may not know who does and who doesn’t it, but it never hurts to break something with your diagnosis. Or if with IBS, specifically, like sometimes doctors won't give you anything and they may not officially diagnose you, but they tell you your IBS, so pushing for that like actual diagnosis, because it does make a difference in your insurance. It makes a difference in a lot of things. And so that's a big part that's really important of like, if I can get you know, you to get something from your doctor that says you have a diagnosis, I can use that in my superbill and that can actually impact your reimbursement.

Molly Dunham-Friel: Absolutely, yes, the details really matter. And the documentation, s so anytime you're submitting stuff to insurance, everything that you can send them is great, you know, what's your policy number? What's your name, make sure everything's labeled, the more information the better!

Erin Judge: Absolutely. Well, I know, that's kind of a heavy topic talking about insurance. It was a lot, but I hope that that was valuable, listening and kind of thinking through like, how to be the manager of your care, and just getting some ideas and hopefully some encouragement too that, if it feels daunting, like there are steps you can take, which is so important. And there's also communities of people who are also dealing with that frustration, so work together, connect, it’s so important.

Now, Molly, you don't only talk about insurance, so I don't want to leave just on the insurance note, and so I will make sure your Instagram you know, everything's in the show notes, so if anyone wants to connect with Molly, you can there. But is there anything else you want to share or anything else that you you want to leave our audience with before we close down episode?

Molly Dunham-Friel: Sure, absolutely. So something I read the other day that really made me think about my life with IBD was a quote actually, and it was that behind every strong person is a story that gave them no choice. And I think that just really sat with me because I didn't choose to have chronic illness. I didn't choose any of this, but I become a much stronger person, I'm more resilient and stronger than I ever thought I could possibly be because of a lot of my lived experience with chronic illness and I think that every story is valid, including my own and including yours, whoever's listening, and you might not have been given a choice, but you're going to be stronger for it and you have a choice of what you can do next.

And to all the warriors and the caregivers of warriors out there, I want you to know you're not alone. I want you to not give up, as hard as it is. I want to suggest that you connect with other patients and other caregivers. And I want you to reach out to me if you ever need anything at all. And just keep taking care of yourself the best you can and don't forget to give me grace, because it's hard sometimes.

Erin Judge: Awesome. That's amazing and you can clip that out, record it on your phone and give yourself that encouragement whenever you need it.

Molly Dunham-Friel: Yeah, I know right?

Erin Judge: Follow Molly and then you'll get more of that for sure, as well as some interesting information on other things that are coming out. So thank you so much, Molly, for what you share and thank you for sharing this wealth of knowledge with us and just kind of opening up that conversation. I truly appreciate it and so glad that you were able to come on!

Molly Dunham-Friel: Thank you so much for having me!