Update 3 on Health Insurance and Treatment

Ali: Hi everybody, welcome back. I wanted to give a quick little update. Some of you all have been asking me on my socials about my situation with my healthcare, health insurance and treatments and where I stand with all that. So mm, I do have other episodes and other updates about the whole drama of the situation with the health insurance, but very quickly my insurance stopped covering my infusion and then we found out they hadn't paid anything in well over a year and I had an eighty-two thousand dollar balance and There's attorneys involved and blah, blah, blah, blah, blah. Luckily, I'm not involved in all of that. That's on the business to business end, but my insurance is not covering my treatments anymore. And I haven't had a treatment since April was my last one. So I am starting to flare. And that's where I wanted to update you all. the the tricky part about this part of the story I haven't really spoken about yet. So again, if you haven't listened to all the previous episodes, let's go back. And find my health insurance is a scam episodes. and the update. I have two, I forget what they're called, but they're back there somewhere. I'll link them in show notes. And so basically, I am self-employed and my husband worked for a very small company, and for the first couple of years, they did not offer health insurance. They did give him a stipend every month towards it. So we have been going and trying to get health insurance that will cover my infusions, which are $9,000 a month. This is important to the part of the story later. Part of the reason why they're so expensive is because my doctor's office does a buy and bill type of prescription with the infusions. And they buy the medication from the insurance comp from the pharmaceutical companies. They infuse me in office. They have an infusion center in the office, and then they bill it out to the insurance company. So every single month before I would get my infusion, they would confirm with the insurance company that I am approved for this treatment and that, you know, they get the prior authorization. So that had happened for over a year. In the meantime, the first year I was on that insurance, a one insurance plan, and they then I had to renew, and that takes some time. They no longer were offering that particular plan that I was on. So I had to find another plan. So with my insurance agent, we tried to figure out which one would be best for the family. I got onto another plan. We went through the and so you purchase that on the 15th of the month. It's active on the first. Then you send the information to the rheumatologist and they try to get the pre-approval over there. And that can take weeks. So now I have not had a treatment in weeks. Or like I've missed a treatment, let's say. And sometimes I missed two treatments. Then I find out that okay, they're not gonna cover it. I did not get the approval. Okay, fine, let's cancel that insurance. Let's go find another. So then I find another. I pay for that one by the 15th, it's active on the first, and now I have to go. and go through the process with this insurance. That happened two or three times and I was getting denied. And finally I got approved. So I had this insurance and this insurance. I finally get improved. In the meantime, I had I had no treatments. And my doctor knows I'm waiting for the pre-approval. Everybody in the thing knows I'm waiting for the pro pre-approval. And basically they give me a little bit of prednisone to get me through if I was feeling it. And that was it. It's just kind of wait to get approved and keep trying these insurance. This is important to the story that I'm about to tell. So keep that in mind. Like, I was not offered anything else. Arensia has been working for me for years, and I don't want to try anything else, so I'm not asking for anything else either. So now I'm in this situation where I am in it's May and I know I'm not gonna get any insurance for a long time. And I thinking back to the previous times where like I just they just give me some prednisone and I kind of limp through. And get to where I need to do so I can be on that prednisone. I mean, so I can get back on the Arencia. Okay, so here we are. Now we're getting closer to the winter where I never feel good. I always feel terrible. That's why I moved a thousand miles away from my family with two kids because I feel better here in this in the warmer climates. But we do have some seasonal change here, and I'm like coming into that a time where it's a little bit cooler and I know I'm not gonna feel good. My hands are hurting, my feet are hurting, my fatigue is crazy. My business is suffering because I am too tired to do anything. And I honestly, I can't I'm in real estate and I can't unlock the door. Like thank God we have a push one and I can just do that. But like getting a lockbox out of a key is just not something I can do right now. Typing is painful. So now I have I'm confronted with I have to talk to somebody. I had some prednisone in the house. Don't be like me, I'm a bad patient. I'm not a doctor, this is not medical advice, blah, blah, blah, blah, blah. But I started taking some prednisone that I had in house. That Helped me a little bit, but it's not doing enough. So I finally call the doctor and or send an email actually. And I'm like, I'm flaring my insurance, 82,000, blah blah blah blah. They call and they're like, We really need to see you. We haven't seen you since March. You need to come in, you need labs, you need a tuberculosis test to take these medications every two years. You have to have a TB test. Just stupid, but either way. so I had to go in and and pay for all that out of pocket. Which is fine. This is the part of the story I get really frustrated because I'm in the doctor's office and she's like, Well, you can get Orantia in an injection form, and the pharmaceutical company has a patient assistance program for people who don't have insurance. Excuse me, what? And like, guys, I could have been d taking this in an in an injection, like an auto injector thing for years. And nobody told me. It was never given to me as an option from the day one. This infusion was the only way that I knew of that you could get Arensia. So I was like, well, why was that net why why do you go with the infusion over the injection? And they told me it's because She just said it's weight-based, which I know for a fact is true because every time I go in there, every four weeks, I gotta stand on a scale with the world's skinniest person looking at me, whom I love, and she's great and I love her, and that's not her thing. That's not her thing. But like I don't want and I know her, we see each other at the pool, she's gonna weigh me, and it's just not a great feeling. but and she's this is not about her. I'm just saying, in general, most women don't want to be weighed. So every four weeks I have to get on that stupid scale. And if you're over this amount, you get X. treat amount of infusion in milligrams and then if you're under this amount you get y amount. So I know that to be a fact. But they make it sound like if you weigh a hundred and fifty pounds you're getting A amount and if you weigh 170 pounds you get B amount and if you're weighing two hundred pounds you get D amount. No, that's not the case. It's it's like there's a line, it's drawn, you get this or you get that. So with the injection they just give them the more dose dosage to everybody. I I would assume I didn't ask that question. So I've had insurance issues for years covering this treatment. And this is the first treatment that's worked for me in sixteen the best in sixteen years. And nobody wanted to tell me that I could be getting it in an injection form and I might qualify for a patient assistance program because we were paying crazy in premiums on these insurance pro policies to cover this stupid infusion because it made me feel the best. And nobody wanted to say anything about the possibility of an injection. The reason I get really frustrated with that is because Like I know to me it's not a weight thing. It just can't be a weight thing. I it really can't be. Be it can be, yes. I okay, fine. It is. But it really is about money if we're gonna go down there. And I have no problem with the rheumatologist trying to make some money. Like we live in America, it's a capitalist, you know, society and everyone's out to make a buck here. But at some point someone needs to take a step back and be like, Well, in this situation, let's just dial it back and let her know that she can get this in an injection and there is a slight chance that she can actually get it for free. Do you know that it took one piece of paper and about 12 hours for me to get approved for that medication for free. And it was delivered on my door within 48 hours. you know, when I did go to the doctor's office, they said to me, Well, have you ever taken methotrexate? And no, I never took methotrexate, which is shocking to anyone in the rheumatology world because it's a first-line defense. It's usually a medication that you get from day one of diagnosis, but not when you're trying to have a family. You can't take that when you're trying to have a family, and that's the season of life I was in when I was diagnosed. So now they're trying to put that on me. And I'm like, no, I've gone 17 years with this and I haven't taken methotrexate and Arensia is working for me. So my mindset is like, again, I owe about a bit of this because I could have been more upfront with the doctor and said, like, I, you know, back in May, this is the situation. So learn from me in that, like, if you have an insurance issue, there's a high chance your doctor doesn't know about it. Like at least I don't know if that's that's been my experience. Because So now I'm taking the injection. the other thing she said about the injections is they take longer to kick in. Well, Ihrensia takes months to kick in, anyways. So we'll see how long it takes for the injection. Because none of it is quick. And they had to up my prednisone to get me through. And tomorrow I titrate down from that. We'll see how that goes. but I'm gonna take my second injection today. It's just a little infuriating. Communication in the medical world is not good. It really isn't. And you would think that something like an eighty two thousand dollar balance would like flag somebody to tell the doctor like And it did my infusion nurse did reach out at one point to the doctor and they called me, but I was so busy traveling with the kids and then I was feeling fine at that point, so I never did anything because in my head I'm like, I'm not taking any other drugs. I don't wanna I I don't wanna start a new medication because I didn't know about the injection. I don't want to start a new medication and then wait three, six months to find out that it's not gonna work and then I'll have insurance and then I'll go back on the erancy out. Like that was not an option for me. Part of my part of the problem is I didn't talk to them thoroughly. I didn't say this outright. The other part of the problem is for two years I've been trying to get this thing covered by different insurances and no one wanted to tell me that I could get it in an injection, probably because it's not something that they can bill. So that's it. I got my treatments. we'll do it get on my husband's insurance next month. Well, at least get in the process of it. And we've been cash paying everything else, which has been actually a lot cheaper and something to consider for getting like catastrophic care for just the kids and my husband who are very healthy and never go to the doctor, and just getting meat covered because it's outrageous what premiums are these days. you can get insurances that just cover catastrophic care or whatever you want, emergency care, or I don't know what the word terms are, but that's something we could look into. So at any rate, that's that. That's my update on all of that. I do have another episode launching next Thursday, whatever that date is, I don't know. like the twenty eighth, I believe, with Jessica. she is a personal trainer, living with Crohn's disease, alcerative colitis Crohn's disease. I forget which one. Either way, she's a trip. You'll love her, and that's coming out next week. So thanks all for listening. I appreciate the prayers for you all who have been sending them for my healing. I can feel them and yeah, we'll get through this. I'll get through this, I'll get back on whatever I need to do to get through it, and it's all good. But thanks for being here, really appreciate y'all, and we'll see you next week.