My Insurance Nightmare as an Autoimmune Mom

Alexandra Atwell: Hi everybody, welcome back to the Auto Immune Mom podcast. Today is going to be a little bit different. I am sharing my story of my recent health insurance disaster that is ongoing and current. So this will likely be a two-part series because I don't have a resolution to the story yet. I am also gonna bring in a guest ⁓ a couple of weeks that might be able to ⁓ some light on all of this for us. So ⁓ excited to be here. I'm not excited about the topic. Let's just say it's very much a work in progress here. ⁓ you follow me on social media, you may have heard me talking a little bit about my health So backstory on it we I am in real so self-employed, ⁓ and I don't have offered to me real estate, so I have to purchase separately. My husband is in ⁓ commercial construction here in the Charleston area. Gilbert and Lee, go get ⁓ a younger company and they didn't offer health insurance. They gave s ⁓ monthly stipend for quite some time. ⁓ And they recently started offering it, but there's a story as to why it didn't work well for us, so we we chose not to. And we continue to ⁓ use the insurance we used last year. So Last year we paid over seventeen thousand dollars for health insurance out of pocket. that's over a thousand dollars a month. It was not I hated and but it was cheapest coverage that I could that covered my rheumatologist and my treatments. So there's two that ⁓ the rheumatologists can order ⁓ medications. ⁓ The first is the doctor actually purchase it from the pharmaceutical company. ⁓ purchase it from the pharmaceutical company. ⁓ gets shipped to them. ⁓ ⁓ the infusion center, my doctor does it in house. ⁓ So I go there, they give me the infusion, and that's before give the infusion, ⁓ in every single January rerun everybody's insurance and get a one approval to to be treated for this. And then every single month they rerun i the prior authorization and get another approval. So these th I'm on Orencia infusions every four weeks. they get billed between like eight and nine thousand dollars ⁓ month. ⁓ they are not messing around with these prior authorizations. They ⁓ I owe five dollars, they will not give me ⁓ infusion until I pay the five dollars. ⁓ ⁓ month they'll call and say, ⁓ see you tomorrow, this is what you owe, ⁓ blah blah blah. Most of the time I don't owe anything. Sometimes it's like I I had to make my deductible or whatever and it would be a couple hundred bucks just on which insurance we've had. So ⁓ anyways, that's it has run. The other way that doctors' offices do it ⁓ is it's a regular prescription as if anything else, they call it into the pharmacy ⁓ and you have to go to an infusion center and get infused there. ⁓ So is how my doctor does it. Just put that there. They do it the way the where they purchase the medication gets sent to them, they infuse me, they deal with all of the back and forth. So either way, I've had the year pre-approval. I have been getting it every month and it's been fine. Well, two months ago I got a call saying I no longer they they had to cancel my infusion tomorrow because the company has denied it. And when started some digging, this is the rheumatologist's office. They realized that not only have they denied it, the insurance company has not made a payment to the rheumatologist since June of 2025. And outstanding ⁓ is $82,000. that is an phone call. ⁓ But my initial up was just to laugh like that is not happening. I don't I I'm not paying you $82,000. I paid my premiums. I had an insurance, they give you the pre-approval, like you you've in my opinion, there's two two people at fault here, and I'm the third person and I got no fault. The rheumatologist should have noticed before ⁓ ⁓ mean, well before ⁓ it's almost an entire year that they haven't been paid. And insurance should not be giving out ⁓ prior authorizations single month if they haven't paid a bill on any of it. Since June, there's a reason for that. So there's some disconnect going on there. I don't know. But I'm not surely I'm not on the hook for this. I've already met my obligations. That's in my head. the is like ⁓ office saying, ⁓ Let dig into this, we'll figure it out, but you can't you're definitely not gonna get your ⁓ infusion. denied you and you're done. Okay, great. So I I ⁓ don't hear from them for a w like a week. And I also don't hear anything from the doctor about like, okay, this is our next plan. Nothing. Nobody says anything. Luckily, I have the sweetest nurse. Her kids go to the same school as my kids. She's the best. ⁓ love her dearly. ⁓ she's been advocating for me inside, ⁓ behind the scenes a little bit. And did end up calling me like two weeks ago, the rheumatologist, ⁓ they wanted ⁓ Let me know that this is bill is not on me because I had said to my rheumatolog my my ⁓ effusion nurse, I said, you know lose their houses over these kind of bills. Like I do I need to put my house in a trust? Like what o what am I gonna do? ⁓ I have eighty two thousand dollars to pay these people. I'm not gonna file bankruptcy over this. And she assured me that ⁓ that well didn't assure me, but The woman in the office that does the billing, she assured me that this is a bill on the business-to-business end and not on the patient end. So that is not happening. feel better when it's all resolved, but for right now, they're assuring me that ⁓ realize that this is not a me problem and they're with the insurance company over it, and it's on the business-to-business side, not the patient So praise Jesus for But Until it's fully resolved, I don't think I'll be really Comfortable with the whole situation. then a week passes and the rheumatologist calls me back and they're like, We can't get anybody to answer us. We don't know what's going on. Can you call the insurance company and out what the problem is? So ⁓ called insurance company ⁓ and actually got answers pretty quickly that they didn't get. So ⁓ I explained whole situation. I said, You you know, ⁓ the guy the other end was difficult to but I'm pretty sure he said. ⁓ it was ⁓ sees the monthly the yearly approval, he sees the monthly approval and he also sees that it hasn't been paid out and was going to manually override ⁓ and request payment be made immediately. I said, great. Now how do I know that that's happened or not? ⁓ Do I some kind of notification or ⁓ what's the with that? And he just said, Well, you'll get an of benefits if it's if it If and when they do pay it. if they don't pay it, you won't ⁓ anything. You just have to call back in three weeks. It's gonna take a minimum of three weeks. So express override is a minimum of three weeks. We're in two weeks right now, and I haven't heard I haven't gotten an explanation of benefits, ⁓ none of that. we will see where that lands me. in the meantime, ⁓ have not had any I've missed two infusions now. feel okay actually. I think I needed a break from the infusion because I was as most of you would know, these medications they suppress immune system. So ⁓ I've never one to be sick ever, but ⁓ this medication actually working and it is suppressing my immune system. And so I getting sick all the time, like ⁓ every ten days, else. I'd be sick for four days, feel good for six days, and then get sick again. So I feel good right now. I have more energy. outside in the sun more and that always helps me. I'm a definitely vitamin deficient person, so ⁓ getting helps. and I'm pretty I have a little bit of tenderness in this wrist, which is typically the first place ⁓ I get it. ⁓ That's usually gone in the morning. I think it's because I hold my phone there. And I I I have a smartwatch and I don't know if you're aware, but and and microwaves, they all give off EMFs, electromagnetic or something, and ⁓ it's not good for you. They're p terrible for you, especially the earbuds. Don't put those in your ears. It's like putting a tiny microwave in your head. So close to brain. so it really bothers wrists. So if I wear it, I only wear it a couple hours a day. I try not to wear it at night anymore. So I miss, miss, miss. of my sleeping schedule and things like that, but ⁓ not worth it. So feeling good. Part of the for that is because I did start taking a GLP one because they really the out now for ⁓ and as I've we've talked on this show, how it helps reduce inflammation. and stress on the body and how it's an immune modulator ⁓ Again, I pay that out pocket. ⁓ That's a lot cheaper than Oransia infusions, ⁓ but it isn't cheap by stretch of the imagination. And so that has really been I a game changer. because I never go t miss two ⁓ and feel good. But I can now. I really, really good. So ⁓ some people hate GOP ones, some people like GLP ones, some people think there's too side effects. I have felt great on them. I don't have any side effects. I do trzepatide, I don't do the other ones. I ⁓ feel good. Minus this wrist thing. And if I took it and leave that would go away. I just really try not to take any of that if I ⁓ don't need to. this doesn't clear in an hour then I will take it just to get the inflammation out of there. ⁓ But that might be once week I have to take something. So I've been feeling good. ⁓ nervous about I did ⁓ one point in my life ⁓ with rheumatoid not take for several years, and I did that for way too long, and I won't do that again. but as it stands right now with my insurance, ⁓ I've actually it because I told you mentioned that it was the only one, the one that I find that had my rheumatologist. And ⁓ cover I which I thought covered my medications, which apparently they don't. They do the other model. They do the model where they cover the model where the you the doctor sends the prescription to the pharmacy and then you go to the infusion center. And that's the one that they cover. But they didn't tell me that. either way, I cancelled that insurance. They don't ⁓ I even use that insurance at a urgent care the street. So if one of my kids needed an antibiotic for an ear infection or something, which they haven't in years, but would pay cash pay over there because my insurance wouldn't work. So seventeen thousand dollars plus anything else that we would pay ⁓ there's no other doctors around here that take it. ⁓ was. so we canceled that. So nice that we get a little cushion of money here, but we don't have coverage right now. ⁓ So in the process of trying to pick another insurance I'm not just gonna buy one to have one. Like we can ⁓ take the time that it takes for me to figure out what our next best move is, not only my medications, but ⁓ and you I want we want to do what's best for the family. Which is that I struggle with a lot, is this disease and how it's been a financial burden on our family. ⁓ But that that isn't gonna change, ⁓ So I don't have a resolution to the outstanding eighty two thousand dollars other than they tell me it's not gonna be on me. again until ⁓ I am actually a zero balance there, I won't ⁓ all that about it. and then I we are going through husband's employer for health insurance. We'll see if that's it. But for right now we'll just cash pay whatever we have to. I mean, honestly, is it gonna be s this seven know, seventeen thousand dollars worth cash pay? No. It's probably It's not even gonna be if we we had to cash pay something and you know, knock on wood. ⁓ it is a of a gamble, but ⁓ we'll just cash pay. our plan for until I find a a good plan that's gonna work for us that I don't have to keep changing every mu every year because it is an it is hard it is impossible. It it's just a changing things all the time. Like we don't established care for primary care because every year our insurance changes and then I don't I can't see that doctor because the rheumatologist takes priority. We go by the rheumatologist first because I've seeing her for seven years and ⁓ to ⁓ now would months and months and months to get an appointment and then I have to catch her up on my whole history and everything and like, no. So rheumatology takes priority when we are choosing our health insurance coverage. means ninety percent of the time that we have to get new primary cares every year. Which isn't fun. And and to be honest, I just don't go because I'm t I'm like doctor burnt out. So if any of this sounds rings true to anyone else, please reach out and let's have a conversation because part two of this conversation ⁓ going to be me interviewing Terry Adirum, who is an upcoming author. She's written a book, it's being released soon called The Practical Patient. And ⁓ it's a guide to how to survive the medical system. ⁓ She's extensive background working in ⁓ hospitals. ⁓ She's a ⁓ she just sees this gap in what if patients coverage and and there's like She's trying to bridge the gap because actually she was a I think pediatric oncologist pediatric ER. She worked in the pediatric ER. ⁓ then ⁓ with sick children would come in with binders of books, and she'll I'm sure she'll mention this when we talk. ⁓ and know all of this information about their children. It's filled in this binder, and then they come into the ER with an emergent situation with their child's gut cancer or whatever, and they have pass this ⁓ She's always said that she listened to the parents because 99% of the time the parents know what they're talking about. They know their kid better than the than she does. They know ⁓ history better. They know how they react to things better. They know what they're looking at better. Like this is just a kid that came through the door today and to her that she wants to help and trying to help. But there's a gap between that parent ⁓ people like us who are living with these autoimmune diseases and have ⁓ of information ⁓ know, ⁓ not our health, but our medical and our ⁓ policies and everything else. So ⁓ interested to see what she has to say about my situation. ⁓ gonna talk about it a bit, ⁓ but we're also ⁓ she's share some tools and and tips and things like that. So ⁓ this conversation gonna be on pause for a couple weeks. I I have a busy June. The next couple of weeks are kind of crazy busy. ⁓ So I couldn't get her on my schedule until July. So that will be happening the fourth. and hopefully by then I'll have more information about the insurance here ⁓ and we'll how I'm feeling. We have a of traveling in this next month and a half. ⁓ So ⁓ that'll interesting to see. You all I always ⁓ I don't know you, but whenever I'm on the road and things are different and I don't sleep as well and I don't eat as well and all of that jazz ⁓ it tends to have an impact on my health and how I'm feeling. will see if that's the case. and ⁓ that's right now. I actually ⁓ the the did call me because my friend and the infusion nurse kinda leaned on her ⁓ and I never her back. So I did drop that ball. It's just ⁓ This time of year is crazy busy and to be quite honest, I think they're gonna tell me I'm gonna have to take like a low dose prednisone or something like that, and I'm just not I'm not feeling the need to do that right now. and I'd if I I I have to get a new insurance anyways, so why would I if I don't feel like I need to take anything like that right now? I would rather not ⁓ in the next two weeks or three weeks I will have a new insurance and I can get back on this inf infusion ⁓ and how that goes. So that's my hope. But we working through options for insurance. One the options we just cover me and not my kids and husband and do cash pay because they are ⁓ super healthy, knock on and maybe we get catastrophic for them because the ⁓ the cost is outrageous. We it's not sustainable. Sometimes real estate's really good and sometimes real estate's really not good. I'm ⁓ busy with activity in real estate right now, but it's not turning into paychecks, which happens. It will eventually. it's buyers in area are taking their sweet time, which is good. You you want them to be happy with their decision. and it's not about me and a paycheck. It's about them and house. So ⁓ that's that's kind where stand on that. So sometimes in sh ⁓ sometimes ⁓ Real estate is good and it's not a big nut to swallow to pay out all that money for insurance and sometimes it's not that good and it is a struggle. So we're trying to figure out what's the best for everybody involved, which keeps me keeps my treatments ⁓ ⁓ for right now, the GLP one seems to be working very well. And I f with seventeen I'm actually at seventeen years now. ⁓ Seventeen years With this disease, I know when are flaring up and when they're not. And I know ⁓ been without medications before. hopefully won't again, but if that's the case, then we'll roll ⁓ we roll with it and figure it out. but for right now I'm feeling really good and ⁓ f I'm for that. ⁓ And yeah. actually feel since I came off of it because I'm not sick all the time. Out outside of this little wrist, everything else is good. My rings still fit, usually my hands will swallow up. If if that's kind of the first thing that goes and then I gotta take my rings off, I can't do it. So that's that. ⁓ you have any questions or comments, please please reach out. I would love to talk to anybody else who's been in this situation because I do want to have really solid good questions to ask Terry when we speak about her book and about her advice on what to do if you're in a situation like this. and how can make things better. We did talk a little bit about that when I was speaking with to her the other day about, you know The the medical system is broken. It's it's not working great for people like me. And problem as I see it, and I'm trying to get political, I will not I'll never do that. I'm not a p politics girly, ⁓ but the that are able that to make these changes are ⁓ in the government they ⁓ tend to making lot of money and they tend to have really good ⁓ government funded health insurance programs and they have no idea it feels like they don't really care. Maybe somebody does, but I don't know. ⁓ don't it's just not on their radar. They don't They don't see it for emergent situation that I believe it to be, as who lives with it daily. ⁓ And talk to other ⁓ people the time about it and they ⁓ would with me. But when you're hundreds million dollars in government and you have free health insurance, good, this becomes very low priority, ⁓ in opinion. ⁓ We'll see. Maybe wrong, ⁓ but I'll talk to Terry about that too, 'cause she actually worked DC, on insurance policy, medical policy and things like that. So she's a very interesting ⁓ story and lot to share with us. ⁓ So that will be in part two. So short episode week. I will fill you on everything. There might be a part three depending on how this whole thing works out. ⁓ I may do a part two would just be my update on insurance and what we ended up doing. That would be just a quick little episode and then part three would be Terry and her experience with it all. So, know, ⁓ like to roll with things and see how they go, but that's probably what it'll look like. ⁓ we have an update. If we don't, then we don't. but yeah, thanks. Y'all have a great week ⁓ and will see y'all