How to Be an Empowered Patient: Strategies for Navigating the Healthcare System

Ali: Hello, everybody, and welcome back to the Autoimmune Mom Podcast. Today's guest, I am honored, truly honored, to have on. She is her name is Dr. Terry Adirum. She's the author of the forthcoming book, The Prepared Patient. ⁓ She is 25 years inside part of the healthcare system that most of us will never see. Valuable resource of information there. ⁓ She is a frontline doctor. She has played a role in health policy and also in health technology. So we could call her an expert in both of those. Dr. Adierum started her career as a pediatrician in the ER, and she went on to serve in the highest levels of the government, ⁓ including the chief medical officer for the entire US military system. She led one of the largest health IT modernization efforts in the country at the VA. To say that Dr. Adirram has some golden nuggets for us here at the Autoimmune Mom podcast would be a gross understatement. I am honored and privileged to introduce Dr. Adirum. And welcome her to the show.

Terry Adirim: Yes, thank you. I'm so delighted to be here to have this conversation.

Ali: ⁓ this is amazing because ⁓ I know I've never had any kind of conversation like this one that we're about to have with anybody in my 16, 17 year journey in the medical system. So ⁓ I think this could be eye-opening for a lot of people. And again, thank you for being here. so let's just jump right in. One thing I think a lot of patients, moms, autoimmune moms, feel when they walk out of a doctor's appointment is ⁓ a lot of times they'll say things like, forgot half of my questions. I don't feel like I was heard. Maybe I was rushed. I waited an hour and then I felt rushed. ⁓ a lot of times that happens. Should I have pushed back? When is it appropriate to push back? ⁓ so I would be interested to hear what your thoughts are are on all of that and what you what you what your advice for a mom who feels that way might be.

Terry Adirim: Yeah. Wow, you started with the big the big question. No, I love it though. I love it because it it really gives me the opportunity to show both sides. Now we're all patients at some point in our life. And I think all of us have been through this. Waiting in the waiting room, ⁓ getting to your appointment, having only, you know, a short amount of time, getting frustrated because you didn't, you know, talk about those things that were most important to you.

Ali: Loaded. I know.

Terry Adirim: And then when the appointment is over, saying, ⁓ my gosh, what am I supposed to do? I didn't cover what I came here to cover. I think that happens to most patients at some point. I think the more encounters you have with the healthcare system, the more likely you are to have that experience. Now, as a physician, what I want your listeners to know is that there's a lot of pre pressure on physicians. To get through, you know, the appointments, or you know, like where I had spent my clinical career in the emergency department is to see a patient, get what you need, and come out of that encounter with the information that you need. Now, there probably is overlap between what the physician needs and what the patient needs, but it they're not necessarily always aligned. So this is why it is vitally important. Important for people to be prepared for their ⁓ you know, for their encounter, for their appointments, right? Being prepared before you need that emergency visit, being prepared before you go to your appointment. So, what does that mean? That means that ⁓ you've already thought about and written down what are your top priorities for that appointment. And that's especially important. Important for people who have chronic conditions, like people in your audience. Because if you have a complex medical conditions, condition like many of the autoimmune diseases are, you know, you're gonna have multiple problems, right? So ⁓ for that visit, what are your top priorities for that visit? And if you already can write them down and know what they are, then that's part of the way to what ⁓ You need to get out of that visit. ⁓ I think too, you can direct that visit by going into the visit and say, Doctor, I'm here because ⁓ I have X concern. Since I last saw you, this is what's been happening. So writing these things down before the visit really will help you articulate them when you get into the visit and you can drive the conversation. Now, your physician may have. other priorities that may or may not overlap with yours. ⁓ But I think there needs to be that equal partnership between patient ⁓ and physician.

Ali: Yeah. I think that's great ⁓ advice. I I find a lot of times for me, I'm back at the doctor every three months. So sometimes it just feels like we're all here to check a box. And sometimes I'm feeling well enough. I don't need to say any much. It's just really I'm making sure that my labs are okay and everything else is fine. And other times ⁓ I do stumble across what to say and how to say it. And is this really if like Is this really a flair I'm feeling? Or is this worth mentioning to the doctor? Is it not worth mentioning to the doctor? So I I'd be interested, do you think almost all of it is worth mentioning? Like I I know for me in particular, if I have a little flair in my hand or something, a lot of times I won't even say anything to the doctor because I don't want to change my medications. They're working generally well for me or whatever. ⁓ And other times I you know, I just don't know. I don't know what's appropriate to say. What's what on the p w the level of one to ten, where are you in your pain? If I'm a five or lower, for me personally, is that worth mentioning? I don't know. Do you what's your advice on that?

Terry Adirim: Yeah, well, I think you've you've ⁓ answered the question because just what you are saying is exactly what you should be saying to your physician. ⁓ you know, Dr. So and so. ⁓ since our last visit, I've been feeling pretty well. I think the medications are doing well for me. I just want to mention that I had a little bit of some pain or, you know, swelling or whatever it is in my hand. I would say it's a one out of five, ⁓ but I think overall I'm doing well.

Ali: Yeah. Okay.

Terry Adirim: I think that's perfect. And then between you and your doctor, you can have a conversation about what that particular symptom or ⁓ that you've come up with. You've also given your value statement, right? You've already said that this is, you know, doesn't seem to be really bothering me. I think overall I'm doing well. So that ⁓ you've kind of told your doctor, you know, what your priorities are, right? Overall, you're feeling really well, you think everything's going well. But you did get to mention that, you know, I don't you could say outright, I don't know if this means anything, but I'm having some swelling in my hand. It's really not bothersome. But just letting you know since my last visit, this is what's happened. ⁓ you sound like a really experienced, really good patient, because physicians want, you know, physicians want that specificity. And I think if you're, you know, either I'm not gonna say inexperienced, but if you don't Come to your visit already thinking about what your priorities are, what your values are, and what's important to you, ⁓ you know, it makes it hard for your physician to address really what your concerns are. So I think you're a great example. I think you gave a great example of how to, you know, be with your physician at your visits.

Ali: Well, thank you. I think sometimes it's just a matter of ⁓ you know, like I said, 17 years I've been going in and out of doctors for three every three months, mostly sometimes six, but every three months I tend to g be there for medicate for labs and things. But I did have to learn. I mean, I wish there was a class, and maybe your book is what we need. This is going to be the masterclass of how to be a good patient, because a lot of us are not feeling well enough to even think about. They just want to go there and they're just so in such a bad way. And maybe they couldn't even walk in the doctor's office without help. And to like spend time and energy thinking about what what do I need to do to be a better patient. I don't think that ever crossed my mind. Not even once. ⁓ so I I'm ⁓ Very interested in this and and in the psychology around it. How how can we all make this a better? It's not all on them. It is on us too. Like they're not mind readers. They do need to be told ⁓ all of this. So it's interesting. Why do you think it's so hard for patients with a chronic illness ⁓ in in the medical system that we're in right now, as opposed to an acute? I mean, you were in an ER, so it was slightly different, but ⁓

Terry Adirim: Mm-hmm. We see a lot of chronic patients in the ER. Right? A lot of my patients were medically complex kids or kids with special health care needs. So and they were the inspiration for my book because most of them, their families, were really prepared. They would come with these white binders, and it was always white binders, with all of the information that they need for that, you know, an emergency comes up. They already had all of these things written down. They're

Ali: Okay. There you go. Yeah.

Terry Adirim: Their medical conditions, their problems, their medications, their doses, when their last doses were, allergies, who their physicians were, all that information ⁓ was contained in this binder. So that when an emergency did happen, when the family is stressed, when their kid is sick, you know, and if it's an adult with a condition, I mean, you nailed it, right? You're feeling like crud, right? You're feeling horrible. You don't want to have to think through these things. But if you're prepared beforehand, before the emergency encounter or before your emergent your ⁓ primary care or your specialist visit, then you know the you're relieved of that responsibility of trying to extract that information from your already adult brain. So ⁓ it you know I think it's vitally important, especially for people who are medically complex, to be prepared beforehand. Now

Ali: Yeah.

Terry Adirim: ⁓ you nailed it when you said, you know, physicians are not mind readers, right? Physicians, I'm just telling you, physicians really, really, really want ⁓ to help their patients, right? They don't want to just come in and check the boxes. I know that it feels that way all the time, but we are required to do some of that box checking. but for those, I loved it when patients came and they had all of this information and they told me what they needed, right?

Ali: Yeah.

Terry Adirim: It it's super helpful, right? It relieved my burden ⁓ for taking care. I didn't have to guess, I didn't have to, you know, do a lot of things or make a lot of phone calls. And I think that brings me to you to the answer to your question of why this is so hard for people with chronic conditions. It's because our healthcare system is so fragmented. ⁓ the coordination is poor ⁓ in a lot of cases. And unless you're cared for within one of those.

Ali: Yeah.

Terry Adirim: Totally integrated health systems where all the information is available at the fingertips, ⁓ and where perhaps all of your practitioners are within that system, most people are not. So that coordination of care becomes difficult. And every time you go for your visit or you go see a new specialist or anything like that, you're having to repeat your story over and over again. Nobody likes doing that. I remember, you know, a family ⁓ that came to the ER, they were transferred from another hospital, and I was asking questions because I didn't know the patient's case. And the father said to me, Well, isn't it in your pointing to my electronic health record? I'm like, Well, I wish it were, but it's not, right? And even if it were, what the, you know, an extra layer of frustration for the clinician. Is that that information is not necessarily in a way that it's quick to access, right? One visit could be like several hundred pages because of the way EHRs are set up. ⁓ We're starting to see some improvements of reducing that friction with AI and helping to summarize patient notes.

Ali: Yeah.

Terry Adirim: But otherwise, you know, physicians, until we get this right, physicians are going to ask you again, and patients are going to be frustrated, rightly so. ⁓ you're tired, you were seen by, you know, another physician, and now you have to go through every single little thing again because you're seeing a new physician. I feel your frustration. and that's why I wrote this book, because I really want, you know, one patient is not gonna fix the whole fragmented, opaque. broken system, but you can take care of yourself and try to achieve as optimal an outcome as you can in s in such a bad system. So hopefully it does that. It helps people prepare for all of these situations.

Ali: Right. Well, it's it's interesting that you say that like children's parents would come with w binders of books and maybe what we all need to do as patients is start approaching our own healthcare as if we were approaching it for our child, because that's when you flex the assertion muscle and when you fli you know, y I talked about this in another episode where

Terry Adirim: Mm-hmm.

Ali: You don't do for yourself what you do for your kid, but once you do it for your kid, it becomes a muscle that you flex and you're more able to be more assertive and more ⁓ maybe assertive isn't the right word, but organized and prepared and you would and empowered. I would never go to a if my child were super sick, God forbid, with something. ⁓ I would never go to the doctor without information about my child. But I did that for years for myself. So ⁓

Terry Adirim: And empowered. Right.

Ali: Let's talk about your white binder method or how you ⁓ developed it, what it looks like. And ⁓ yeah, maybe maybe this is something moms need to focus more on is treating themselves more as a priority and putting all this information together and just having it. So I'm interested to hear about it.

Terry Adirim: Right. So insightful that those comments about we will do something for our children that we don't do for ourselves. And you're exactly right. And I would say, I would teach, you know, trainees, I would say parents are right more than 90% of the time, right? The kid these kids with special needs. Right. If they tell me something, I believe them. They know, they know their kids, right? But when I you go into adult world, that may not always be the case. A patient may not know all of their medications. This really happened to me during training. ⁓ my God. ⁓ you know, I was in my pediatric emergency medicine training and I was ⁓ rotating through a general emergency department where it was only adult patients. And I remember walking into a patient room and the patient was there by himself, a 70 year old man, and I said, What are your medical problems? He said, Don't have any problems. ⁓ I said, Okay, what medications are you on? Not on medications. Just then his wife walked in after parking the car with a bag full of all kinds of medications. And I said, Sir, why don't you tell me what medicines you're on? ⁓ you mean the pills? ⁓ yeah, yeah, I'm on the green pill, white pill, whatever. And you never see that in pediatrics. Yeah. Yeah, I did. I saw your father that day.

Ali: My fa that's my father. You might have had my father that day.

Terry Adirim: And I it was a huge lesson for me that exactly what you articulated. We don't see that with parents of kids with medical complexity. They come with a white binder that has a list of their medications, their dosages, the pharmacy, when their last dose was, if they're on GTU feeds, the type of formula, the last time they changed their G tube, like seriously, ⁓ detailed information that.

Ali: Detailed information. Yeah.

Terry Adirim: I just didn't experience an adult world. But the white binder method, I call it that because the inspiration for my book were families of children with special healthcare needs. They just ⁓ were really were really a delight to work with ⁓ because they it was a partnership, right? It was it was not, you know, a a physician dictating stuff. They were equal partners and they could be assertive. with their care and they were empowered ⁓ for their children. And I want that for all patients, even adult patients. And ⁓ because you see that less often, just as you said. And the white binder is something that, and I put this in my book, what type of information you need in it. Now it doesn't have to be a physical white binder, right? We're now in the electronic age. So you can keep it on your computer or you know, and and there are companies that are now starting to come up with

Ali: Yeah.

Terry Adirim: products to help you with this, but it should have information about who your doctors are, the contact information, your pharmacy, your medical diagnoses, ⁓ your ⁓ medical coverage, right? It should be a place where you keep your EOBs, your explanation of benefits and bills, and, ⁓ you know, the medications with their dosages and all that information that you need that you're going to be asked when you go to your doctor's office. Right. W don't ever assume that if you especially if you go see a new doctor that they're gonna have any of this information and they'll make you and it's frustrating because believe me, I just switched to a new primary care doctor and I have to fill out all those forms again. It's it's frustrating, right? But if you already have it somewhere, whether it's in your white binder or electronic white binder, whatever ⁓ you have, if you already have it at your fingertips, then it becomes easier.

Ali: Yeah. Mm-hmm, for sure. Easy.

Terry Adirim: ⁓ to do that. And unfortunately because as I get back to our fragmented, broken, opaque healthcare system, we need to do this for ourselves.

Ali: I d I agree. I I think especially early on in diagnosis too, peop people suffer for so long. A lot of us in the autoimmune world suffer for a long time before they get a diagnosis. They get the diagnosis and they feel, finally, they're gonna fix me. And they show up to the doctor and it's not that easy. You're gonna try and fail. I mean, I can speak for rheumatology and Hashimoto's, but like try and fail a million different hopefully not a million, but

Terry Adirim: Mm. Yeah.

Ali: A lot of different medications before something sticks and finally works. And I think like that there could be a better level of preparing patients when they get a new diagnosis for what this is gonna look like. I had no idea. I really, I mean, I I had no idea what any of it was. I have no ⁓ experience in the medical system either. So it was depressing as time further time went on that I was like, well. We're still I'm no better than I was. Like how am I still here? ⁓ now I am better now and we've gone through the system and now I have expectations and things like that. But there's a definite disconnect between initial diagnosis and what things are gonna look like. I did have my very first rheumatologist say to me, You're gonna be fine. It's okay, you're gonna be fine. ⁓ but that was all that was ever said about what the path looked like going forward. And ⁓ I think, you know, I don't know.

Terry Adirim: Yeah. Yeah.

Ali: Who needs to hear that? But for me, it would have been really more more it would have been a lot easier and digestible if they had just been honest with me. Like this is what's gonna look like. We're gonna try this medication based on what your insurance says and doesn't say, and we're gonna see how it works. It's gonna take six to nine months on or three to six months or whatever it is for each drug. And if that doesn't work, then we'll try this and then we'll go forward. ⁓ but like I just kind of had to learn that over the years and ⁓

Terry Adirim: No, I I hear you. Yeah. Yeah, I think there are doctors who do do that. and that's a best practice. ⁓ nobody should leave their appointment not knowing what the plan is. Now, especially with autoimmune diseases, a lot of the symptoms that somebody could have are very nonspecific. That's what we call them, nonspecific. So it could apply to a good number of conditions. So ⁓ you know, we like to say in medicine the history is everything. You get a history, you can make the diagnosis.

Ali: Yeah. Mm-hmm. Yeah.

Terry Adirim: But oftentimes with some of these diseases or conditions, ⁓ that may not be the case. You get the history, and there's still, well, we have to look at the physical, we have to do lab studies, we have to do all of this and putting all that data together. But as you said, that should be told to the, you know, the patient. Well, I don't know right now. And a physician should feel at ease doing that. Believe me, I work in the ER, I would say that every single shift, right?

Ali: Yeah, yeah.

Terry Adirim: Like, you know, I don't know what you have right now, but here's what we're going to do to try and find out. Right. you know, and and help them with their especially their biggest fears. My, you know, I would always say a couple of things. One, especially if I was certain, I would say, okay, first I want to say it's not cancer. I don't know what it is, but here's here's the plan, right? Because everybody always fears the worst, right? ⁓ I think too, not only saying you don't know, but

Ali: Yeah.

Terry Adirim: Sometimes medical science does not have some of the answers and or treatments ⁓ that work, right? ⁓ So even telling patients that ⁓ can be very helpful. Now we're in the day and age of AI. And so I think AI is going to be that thing that levels the playing field a little bit. You know, we used to do Dr. Google and people would Google that and you'd get all kinds of trash on Google. So you could kind of look up your condition.

Ali: Mm-hmm. Right. Yeah.

Terry Adirim: And you kind of say, well, gee, what site should I look at? With AI, I think you can get a lot more information that could be helpful to you. So you could put in there whatever your condition was, whether it's Hashimoto's lupus or IBD or whatever autoimmune condition, and you could get an idea. It may not be specific to you because AI doesn't have that context, doesn't know you, didn't do the studies. But you could at least get some more information that you could then take to your physician to begin a discussion. So I think that it overall AI is gonna be helpful to patients like you and your listeners to level that playing field and to help start that conversation.

Ali: Okay. And how would you ⁓ advise a patient like myself or somebody newly diagnosed to use AI ⁓ b prior to their first appointment or within the first year of their diagnosis when they go see their doctor?

Terry Adirim: I would never tell someone not to use AI. But I think that there's ⁓ because we all do, I mean, you know, for whatever. Right, right, right. But you need to use it effectively and safely, right? ⁓ exactly. So the first step is understanding that you know, general LLMs like Chat GPT, Claude, Perplexity, Gemini, all of these general large language models are not perfect, right?

Ali: Yeah. Yeah. Well you're gonna do it whether you're supposed to or not. It's just yeah. Right. There's w wrong ways to do everything.

Terry Adirim: And they may say things that are not accurate with certitude. So you need to understand that it's not perfect. They also don't know your condition, right? They don't know you. ⁓ they don't know what your history is unless you put it in there. So if you're gonna put information in there, ⁓ I would first of all, ⁓ don't is do not upload your medical records because you don't know where that information goes and it's private information. Don't ever do that. But you could put in there, I'm a 45-year-old woman, I've got pain in my hands ⁓ and my feet. ⁓ I have swelling here, I have fevers, you know, every couple of weeks, whatever your symptoms are, what is my likely diagnosis? So you can do that and then bring it to your doctor and talk about it. You could you could use it to, well, I just got my lab studies back and I have a rheumatoid factor of X. I have Ig, you know, whatever. ⁓ as this, what are the likely, you know, ⁓ issues? Am I in a flair or you know, an exacerbation, whatever the term that for depends on the condition? You can do that to help give you some information, but it is not the end of the story, it's not definitive, it's just information that you can bring ⁓ or to ask your doctor ⁓ whichever way that you communicate with your physician. So there are do's and don'ts.

Ali: Yeah.

Terry Adirim: And there there are safer ways to use ⁓ the system. But I think the more specificity that you can give, the better the information you're gonna get. But you still need a physician in the loop. You know, the tech people talk about ⁓ a person in the loop, you know, in in healthcare we talk about a physician in the loop. So that would be my advice and using it. I would never say don't use it because people are gonna use it. So but

Ali: Yeah, yeah. For sure, for sure. You can't help it. ⁓ it wasn't a thing when I was around, so when I was interested in all of it. So it's it's not something I've ever put in there outside of maybe a lab n marker being a little bit off and me wondering what that is because you know, I don't this is maybe Yeah.

Terry Adirim: That happens all the time. Somebody cut you comes and says they have all the if you do a whole slew of labs, the chance of something coming back abnormal is really high, right? So you do like a whole bunch of labs and we do a lot of labs on adults, and it comes back. Well, you know, my ALT, my liver function, is normal, but my AST was a couple points above ⁓ normal. ⁓ my God, what does that mean? Right.

Ali: Yeah.

Terry Adirim: I get that question all the time, not necessarily that specific one. I'll look at it and I'll say, it's nothing for you to worry about, right? Especially AST over ALT. So, ⁓ you know, but people don't have access necessarily to, you know, a physician in our family or a friend. That's where, you know, these you know, AI may be able to be helpful in helping that.

Ali: Right.

Terry Adirim: The problem is that it could give you a wrong answer and say it with certainty. ⁓ you don't need to worry about that when, yeah, you do need to worry about it. Right. Correct.

Ali: Yeah, you have to take it with a grain of salt. It's not an actual medical d degree doctor that you've knows your whole history. ⁓ but it's good to note. I mean, because some people are you know, it's it is relatively new enough that people take everything it says at its face value, kinda like the internet back in the

Terry Adirim: Right. Right. Right. Mm-hmm. Mm-hmm. Well, think about where it scrapes its data from. Okay. It scrapes it from the internet, from places like Reddit and other whatever we're, you know, TikTok, I don't know. But where people say all kinds of stuff that's not accurate. So yeah, I think it's, you know, I think we're in the wild rest right now. I think, you know, people are going to use it because it's there, it's accessible, it's easy to use, and they're curious and they want to know, and maybe their physician can't get back to them.

Ali: Yes. Yeah.

Terry Adirim: in a timely manner, you know, especially now where there's laws that say that ⁓ patients must have immediate access to their tests. And it may come back quickly before a physician could get to you to, you know, help you ⁓ through that. So I think we'll we'll get to a place where ⁓ it'll be even more useful and hopefully safer than what we're experiencing now. Yeah.

Ali: Yeah. As as the technology grows and they figure out things, yeah. It it'll be interesting to follow it along. ⁓ here's a question for you. What information did doctors secretly wish the patients would bring with them, be but more com more prepared with? ⁓ maybe we touched on that a little bit, but ⁓ yeah.

Terry Adirim: Yeah, I'm not sure it's a secret though, but ⁓ but may not be evident ⁓ to patients. But ⁓ I think it's so helpful to physicians when you come with what are your top priorities, right? I think it's important to understand a patient's values, like what is important to you, especially, you know, ⁓ when you have a chronic condition. ⁓ and I think also physicians want to know what has changed since I last saw you? If it's somebody that you have a a continuing relationship with right and ⁓ what and if it's a new encounter you know what are your diagnoses what medications are you on including supplements ⁓ because they can interact with medications ⁓ you need to you know can you be pregnant i mean we need to know that especially if you come to the ERs there a chance you could be pregnant because I want to do some x-rays right

Ali: Right, right.

Terry Adirim: Things like that. So open openness and honesty, I think, is very important, even for those things that may seem to be ⁓ embarrassing, whatever they are. So being fully ⁓ open ⁓ with ⁓ all the things that are important for that visit, right?

Ali: Think of it more as ⁓ a team. We're on the same team here. We're trying to get to the same goal. We both need to participate equally in order to get there to get a winning outcome. I'm a sports girl, so that's better. My analogies always go back to sports. okay. Now, not that you would do this, but if a doctor interrupted you or you felt brushed off or ⁓

Terry Adirim: Mm-hmm. Yes. Exactly. That's exactly right. Which is good. I like it.

Ali: you felt unheard or unseen, what's a good way to redirect respectfully? Because everyone does deserve respect and ⁓ you know, everyone has bad days and doctors aren't perfect either. And maybe they're having a bad moment and it happens from time to time. I know a lot of people are too intimidated to say anything and just leave feeling frustrated. So what's a simple tool that we might be able to use ⁓ to help alleviate that situation?

Terry Adirim: Yeah, well, I think ⁓ I think you've nailed it. I think, you know, ⁓ going back to something I said earlier, the goals of the visit may overlap but may not totally align, right? There are things that a physician needs to get out of the visit. There are things that a patient may want to get out of a visit. Now you make an assumption I've never interrupted a patient. Like I'm an ER doctor, I constantly interrupt patients, but you know, and usually it's when somebody is going on and on about things that are not helpful for that.

Ali: Don't matter. Yeah.

Terry Adirim: visit, right? So you want to be polite, both want to be polite to redirect. A physician should redirect to, you know, what's the most important thing to discuss ⁓ during that visit, whether it's an emergency visit versus, you know, a chronic care visit. I think a ⁓ a patient has the right and they should feel empowered, though they don't, because you've identified the power dynamic is not oftentimes there's a

Ali: Mm-hmm.

Terry Adirim: difference there. ⁓ you know, you can politely say, you know, I'd like to finish because this particular thing I'm describing is important to me. Just give me a couple of seconds to finish, right? You can do that. And I and if it were me, I'd be like, ⁓ gee, I'm sorry. Yeah, I interrupted, right? So I think, you know, as you said, both can be polite and direct it to where it needs to go. From a physician standpoint,

Ali: Okay. Yeah. Yeah.

Terry Adirim: There are things that we need to know and we're rushed and we're pressured and so on. But at the end of the day, we need to do what's best for the patient, and the patient knows what they want to get out of that visit. So I think you nailed it, ⁓ being respectful and saying, you know, doctor, I know ⁓ we don't have a lot of time, but here's why I'm here. Right. I think sometimes that and you know it's not that common, but sometimes, you know, there are patients who want to tell a story.

Ali: Right.

Terry Adirim: and that's great. And so that's why being prepared is helpful because if you actually think about what you want to get out of the visit, you can get to the actual core of what it is that is the problem and try and you know brush away some of the extra factors that may not be as important as that core issue. So being prepared, writing down ⁓ beforehand ⁓ what your top you know priorities are for that visit, I think will help.

Ali: Yeah.

Terry Adirim: keep what you're saying as a patient a little more succinct ⁓ and keeping your physician on track. So I think ⁓ at the end of the day it's just about being respectful, both both sides.

Ali: Yeah. I would imagine it's hard for you in the ER. I mean, you're in emergence situations and there are people who just want to talk about everything and anything. ⁓ so I would imagine that that you would run into that and it could be more difficult than a regular visit every six months or three months or something like that. But you do have to ⁓ be respectful and mindful and ⁓ it it's a two-way street. We're on the same team, we're just trying to get to the same place and yeah, I think that it's good to remember all of that.

Terry Adirim: And if you trust your physician, ⁓ which I think trust is really important, and most people do trust their physicians, I think trust that they need to get information that they need to help you, right? So if they do redirect, I think if you trust your physician, then hopefully that physician's taking you down the path that it you mutually, you know.

Ali: And I don't know that it's a bad thing, so if they ask you a question that seems not anything around like, ⁓ that's interesting, why what would that matter? Or something like that? Like what what are we trying to what's what's what's the goal with that question? 'Cause I never thought about it that way. Or something, you know, like why why would that be an issue?

Terry Adirim: Yeah. Right. You should you bring up a really good point. ⁓ and I think it's important that patients feel empowered, and oftentimes they don't, to ask those questions. So if your doctor says to you, you know, after you know, during your visit, ⁓ I'd like to get an ultrasound, right? Do you have any questions? And then you say, ⁓ no. You are within your rights to say, what are you looking for? What are you hoping to find? Is this test necessary? ⁓ you know, I'm trying to inculcate that in my kids, right?

Ali: Yeah. Yeah. Well, that's what I go ahead.

Terry Adirim: My daughter went for a visit ⁓ recently with her doctor and wanted to do a certain blood test. And when she came home, I said, Well, did you ask her why she was doing that test? No, I didn't think to ask that. Well, you know, you're within your rights to ask that because I don't see any indication why you needed that. So you need to my I do that my visits. If if my physician and I, of course, a physician, ⁓ and I've actually said, Well, you know, the American College of Obstetrics and Gynecology doesn't recommend that, and then

Ali: Right.

Terry Adirim: course my doctor will say, well, I don't always follow. ⁓ why don't you vo anyway, but patients have a right to ask, you know, why something is being done, why you're being put on a medication, what do you expect from either that test or from this new medication? So

Ali: Yeah. I think that's really good information. And my mother is a nurse, so she'll often ask me these things. I'm like, ⁓ but I would I if if I was in the do ⁓ go going back to your children, if I was in the doctor with my kid and they were like, Let's run an ultrasound, I wouldn't just be like, Okay. I would say, Why? What are we doing? But for me, okay.

Terry Adirim: Right. You're like, Okay, doctor, yeah, yeah. Right, right.

Ali: You know, it's like I it's like this new ⁓ light has been shed. Not I need to start treating my own physical health the way I would treat it as if it were my child's. And maybe I would Yeah.

Terry Adirim: It's a partnership. Your doctor's not there for him or herself, right? They're there for you. So and not only that, but you need to understand what is going on in order to do whatever it is that you need to do to get well, right? ⁓ if you don't understand why you're put on, you know, a s a different medication, like what it what makes you think this is any different, then you know, you may not do what needs to be done to stay on that medication, especially if there's side effects. I mean, under those circumstances.

Ali: Right, right. Right.

Terry Adirim: Your doctor should be able to say, I know that there's these side effects, but I think overall this is gonna be better for you because it's gonna do X, Y, and C. Right. Once you understand that, you may be more likely to continue with the medication where you have some side effects, right? So yeah.

Ali: Right, right, yeah, yeah. Interesting. All right, let's let's switch gears and talk about the dreaded insurance business. I'm interested though in your perspective as a doctor. And I mean I've had conversations with my own doctor about ⁓ you know, treatments being denied and ⁓ fighting things and I'm in I think I mentioned to you first time we spoke a little bit about the situation I'm currently in where my insurance did cover my infusion and now they've said they're not gonna cover it. And ⁓ they'll do it if I go to an infusion center, but not when the physician purchases it. My doctor doesn't do the infusion centers. They purchase the medication. So it's either I get a new doctor or I get a new insurance basically is where I'm at. So I'm not getting a new doctor. That's too much. So we're looking into new insurances. But how can we as patients Advocate stronger for ourselves. What do you advise people do when it comes to insurance and all of this stuff? ⁓ I don't even really know where to begin with the question, whether it's with denial or just insurance policies in general, but any information you want to share with us about how to better advocate for ourselves as patients in the insurance world.

Terry Adirim: Yeah. So that's a very rich question. It's a very good question. It's something that confronts all of us. ⁓ just well, I won't give you the insurance example, but what I'll say is is that it's it helps from the very beginning if you have a choice in insurance, especially if you have a chronic condition, to look into ⁓ who is in network.

Ali: Yeah.

Terry Adirim: versus out of network because that has an impact on what is covered and how much is covered. So that's number one, especially if you have a chronic condition, and most people in this country do, over 50% of people do. ⁓ the next thing is what your co-pay, coinsurance, ⁓ and these are all terms that I explain, it's the big largest chapter, because most of us don't know this stuff, right? Only 12% of people in this country are fully health literate, right? So

Ali: Right.

Terry Adirim: It doesn't matter how smart you are, it doesn't matter how educated you are, a lot of these things are alien.

Ali: And they change frequently.

Terry Adirim: They can't, well, no, they change annually. ⁓ so I'll talk about that in minute. But ⁓ so understanding what your insurance covers, what it doesn't cover cover, and doing that if you have a choice beforehand, right? So if you're going on the exchanges, the marketplace plans, really doing that comparison, especially specific to your condition, looking on the website.

Ali: Yeah, yeah.

Terry Adirim: For what is on formulary, if you're on multiple medications, that's really important, especially the more expensive ones. Are they covered? ⁓ that is key. Now, a lot of people don't have a choice in insurance. You should still look into what's covered and what's not covered, ⁓ because you need to know what to expect. You may need to increase your savings, you may need to do a lot of things. ⁓ and then there are people who are uninsured. So that and people have to weigh, especially now that they're you know. that they've taken away the subsidies for ⁓ the marketplace plans, you know, a lot of people have chosen not to be insured. ⁓ yeah, it's yeah.

Ali: know many people. And in fact, right at this moment I'm uninsured because to pay that kind of money for me not to have my treatments was insane. So we're not sh actively shopping and this is not a life a a solution by any stretch of the imagination, but ⁓ I'll just cash pay for whatever I have to between now and when I find a plan that actually works for me because these ones are not working for me and it's it's a full time job.

Terry Adirim: Like Yeah. Yeah. Right. Yeah. What I tell people ⁓ is that I know insurance sucks. You're paying a premium, you're paying all this money out of pocket, and there's all these new $14,000 until your insurance kicked in, like it's really, you know, unexpected hit to people's pocketbooks. So what I tell people though is that you're taking a risk because you don't know if you're going to be diagnosed with a condition. You don't know you're healthy now, but you could be diagnosed with a condition, and or you're one car crash away.

Ali: Yeah. It's astronomical. From anything, yeah.

Terry Adirim: a hospitalization from needing it. I have a friend who's a physician who had a ended up healthy woman, had a medical condition unexpectedly, not only had to have surgery, was in the ICU, was hospitalized, ended up with a ton of medical bills, despite the fact that she was insured, she thought her insurance was covering it. And it got sent to to collector, even though her insurance hadn't yet ⁓ you know decided yet what they were going to pay and not pay. So this is where you get to you need to appeal these things. Most people do not. I mean, I've seen numbers like only 1% of people appeal, ⁓ you know, either a an ⁓ a prior authorization or ⁓ a denial of payment or a wrong bill. And I always say, take a deep breath. And if it's ⁓ a bill-related problem, ask for an itemized bill. Okay. And you say,

Ali: Right.

Terry Adirim: I am looking into this, you know, I'm appealing this. If it's a surprise bill, you say, this seems to me to be a surprise bill. That'll stop that process from going on. If it's a prior authorization, a lot of chronic patients may be on immunologics and other medications, which are very expensive, that your insurance may say you need a prior authorization. ⁓ Your physician would do that. But if it's denied, you need to really engage with your physician. To determine what inform. and it's not fair and it's a pain in the neck and it takes a lot of your time. But working with your physician to get the information that your insurance company needs in order to cover it. Most people do prevail ⁓ when they appeal ⁓ any of these things. ⁓ and so it is always worth appealing, even though it is painful, even though insurance companies either make you do it by phone, which you could be on the phone for hours, and I'll tell you. ⁓ personal story in a minute and then or you have to type something up and send it by mail it is really insane how that works. I my my my doctor and I had talked about I said you know what I really want to get a CT calcium ⁓ cardiac scan I want to know that ⁓ getting at an age where you know for women they're postmenopausal you know heart conditions so my doctor said yeah I'll call in that prescription for you so

Ali: Yeah. Mm-hmm.

Terry Adirim: I spoke with the radiology center and they said, ⁓ your insurance doesn't cover it. You're gonna have to pay out of pocket. I said, Yes, I know. Yes, I want it. I'll pay out of pocket. They told me it was $250. I said, fine, I'll pay that out of pocket. So I fully expected I was gonna pay that out of pocket. I get there for the test, I get handed my credit card, I paid for it, I was told this is paid in full. ⁓ a few months later, after getting my results, I get a bill for $375. I called them up. Of course, this whole thing took me two hours and it was a second phone call, right? So I had to call again of my time. I'm like busy and right. I have to do this. And this is a small thing, right? I can't even imagine if you've got like any and finally I had to explain to them, no, no, no, I paid $250. And the person at some call center said, ⁓ you're right. You pay $250, so you only owe $135. No, no, no. I was told on this day by this person.

Ali: Yeah. Yeah.

Terry Adirim: That ⁓ I it $250 was the full amount. And she said, ⁓ okay. I said, I'm not paying it. So I, so a couple of things about this case that should be illustrative to people who have way more of a problem. This is, you know, I'm relatively healthy. I wanted this one test, is document who you speak to, get a reference number, jot it down, keep it in your white binder, keep it somewhere. ⁓ and because it it may not be the end of story.

Ali: Yeah.

Terry Adirim: And I know it's painful. I know people, especially people who are sick, it's just terrible. But if you go through that process, that appeal process, more often than not, you're going to prevail. ⁓ it's when you don't appeal it, you know, people end up just paying it automatically and it lets them get away with it. Now, I can't explain fully why insurance companies do this. I think these decisions, policy decisions are made on high ⁓ by people who don't go through what this painful.

Ali: Yeah. Well yeah. It it's money driven, obviously. Like they're try they

Terry Adirim: Well, you know, the pre prior authorizations ha originally had a good purpose. Okay. So you have to say that up front, right? The doctors will prescribe a lot of low value things that are not necessary kind of care. And that happens. Insurance companies say, well, we shouldn't have to pay for it, right? But I think it's become, as you said, a way to reduce costs because healthcare, the prices are super expensive. Right. A hospitalization could be tens of thousands to hundreds of thousands of dollars. And you know, they need some way in order to manage those costs. And so they use these tools for that. But what they don't realize is that patients are suffering. And to appeal it when you're sick is really, really hard. ⁓ and despite that, I still say appeal. And I do go through the kind of lists of what you should do, a sample appeal letter.

Ali: It's it's offensive. Yeah. ⁓ yeah.

Terry Adirim: And the fact that if you can't get satisfaction with your insurance company or the provider, if it's a hospital or whoever it is, then there are state laws. And there are within states, whether you know it's a Department of Health, Attorney General, whatever it is, you can find that out and ⁓ appeal through that. There's external ways of appealing as well. And it's painful, but I think we have to do it. It's it's unfortunately.

Ali: That's that's sort of the situation I'm in right now because they didn't pay for any of my treatments are like nine thousand dollars a month from January twenty twenty five until they stopped they and I got a monthly prioriz authorization every single month and in January a full year priorization. So they get the full year and then every month they get another one and then I got a notification that my balance is eighty-two thousand dollars, which is a business to business side. So technically it's not on me like it because my

Terry Adirim: Mm.

Ali: it I've met my requirements. But I'm helping the rheumatologist try to get their money because so I'm helping appeal it because it's not their f I mean, somebody should have figured it out well before a year went by that they weren't getting paid. But I you know, I'm trying to help them because it's the right thing to do, but I don't I'm I'm t I'm telling I don't even understand how it happened. How do you give a priorization every single month for like a nine thousand dollar treatment and then say

Terry Adirim: Good.

Ali: They're not paying.

Terry Adirim: That may be where you need to go to the state, whoever within your state insurance, overseas insurance, because you have a prior authorization and you've been given, you know, that ⁓ the approval for that medication and they're not paying for it, then the insurance, you know, needs to be paying for it. So we need to fight them. And back to where you mentioned about changing monthly, they they d insurance companies don't change monthly, they change annually. And so you need

Ali: Okay. Annually, yeah.

Terry Adirim: If you have a chronic condition, you're on multiple medications. And when you're on insurance, you need to check that. You know, by December, so they announce what they'll cover, what they're not gonna cover. ⁓ and so you need to know that during the enrollment period. ⁓ and it's unfortunate that you have to do that extra legwork. ⁓ it's not fair, but you need to take care of yourself. So God, I really hope that you find new insurance that it's covered, right? Yeah.

Ali: Yeah, I agree. No, it's my husband's company is now offering it. So he just works for the small the thing I will say, and I've mentioned this and my listeners are probably tired of hearing about my insurance issues at this point, but the healthcare in South Carolina laws or whatever for companies is nowhere near as good as it was in Massachusetts. ⁓ there's a lot of things I hated about Massachusetts. There's a lot of things I that I think the insurance is probably the one thing that I do miss the most about it. The the insurance was much better, it covered a lot more. ⁓

Terry Adirim: Right. And that's what seems so unfair about our system because and I think that's what the Affordable Care Act was trying to ⁓ was trying to do was to create some kind of standards across the country versus being, you know, you live in South Carolina, so you're gonna get crappy insurance versus living somewhere else. Right, exactly. Right, right.

Ali: Here it's been a struggle. Yeah. Well, it shouldn't be that way, right? You shouldn't be it shouldn't be dependent on where you live. And I moved here for quality of life purposes. Like I was miserable in the winter. I couldn't handle it anymore. Like my insurance costs probably should have gone down because I'm moving to like a place where I feel better. But it's it's it's an

Terry Adirim: And and it's crazy because it's not only a burden on patients, but as you articulated, it's a burden on physicians because clearly, you know, $82,000 is not small change for a practice, right? And so it's a burden on physicians, but it is also a burden on employers. I mean, you know, over 50% of people get their insurance through employers, and more and more, especially the small and mid size.

Ali: No.

Terry Adirim: employers are dropping insurance and they're going with other types of things like it i achara the i don't know how they pronounce it but ⁓ where they may give you a stipend and you could buy right and that is not equal to what you had before right right

Ali: That's what we're in this situation now. No, it's not even close. And we do get some money every month for it and it's helpful, but it's crap insurance and here we are.

Terry Adirim: Mm-mm. Right. It's I tell people all the time, high deductible insurance is is not really good insurance. And the reason why is because most people can't afford to pay whatever it costs before it kicks in. And ⁓ and then they say, Well, you can save money, put money away. Most people live paycheck to paycheck. Where are you going to get the savings? I mean, with all of the unaffordability and the rising prices, you know, going beyond.

Ali: Right.

Terry Adirim: I know this is going beyond healthcare, but go way beyond what people are earning and and so on. It is really creating a crisis. And we're at a point where nobody is happy and there's gonna be a come to Jesus sometime. Yep.

Ali: That's a thousand percent. You're now we're supposed to save money for healthcare on top of saving money for everything else when when we can't even save money for the gas tank. It's like it's it's hard at times out there and especially when you're sick, you just you kinda wanna just throw your hands up and you can't. You have to you have to keep fighting and ⁓

Terry Adirim: You can't, it's yeah. And that's why, you know, my book isn't going to solve this crisis, but it'll at least help people with one tiny step to take care of themselves. Because if you're armed with information and you have that information to help smooth some of the friction within, you know, getting your insurance, within and understanding it and ⁓ going for your appointments and what to expect, you know, during your life cycle, I think that's the little tiny step that helps people. It is not the solution ⁓ to our healthcare crisis, you know, and AI is not even the solution either. People think that's gonna be a solution. It's gonna help reduce friction, but I think there needs to be a moment in this country where, you know, we need to say we need to change the laws, politics, you know, ⁓ all that. Yeah.

Ali: Yeah, a lot of it needs to change in a lot of different ways. ⁓ and unfortunately it's the people who make the decisions to make the changes are least affected by all this because they have good insurance. Yeah. Yeah.

Terry Adirim: Well, I don't know how what insurance is considered good. 'Cause people would say to me, Yeah, well, better than yours. Yeah, well, I it sounds like most are probably better. But yeah. But ⁓ you know, I had what was good insurance and you still there was a lot of out of pocket kind of stuff. So it's it's

Ali: Yeah, for sure. Yeah. I I know the grass is always greener on the other side, but everybody has their problems. And even doctors don't have great insurance. And ⁓ well before we wrap this up, let's end with a on a happier note. What gives you some hope about all of this conversation that we're having? Like ⁓ is there anything out there that we can ⁓ lean on a happy note for for patients?

Terry Adirim: ⁓ I think patients are becoming a little more empowered. ⁓ and I think that's a good thing. I think, you know, healthcare has risen to one of the top one or two issues that are important to families across the country. And I think that's going to impact who we choose to lead us. ⁓ and I think within the next A few years, several years, I think that there's going to be changes. Right now we're only nipping around the edges, but I see that we're going to have that moment where ⁓ we're going to see change. ⁓ but I think the small things that patients can do for themselves ⁓ is very, very helpful. And hopefully my book can help with that. But the other side of this, the real positive thing is that we are finding cures and treatments. For diseases that when I started my career just didn't happen. I mean, the biologics, I mean, think about that. There's a whole different kinds of conditions that are now treatable that, you know, that are so helpful and keeps patients out of misery. We're finding ways to diagnose conditions sooner. I mean, just this morning I was reading about how ⁓ there are ways to diagnose pancreatic cancer sooner, and we have treatments. That could actually cure it. I mean, this is a disease that, you know, 5% of people survive, five years, right? I think we've seen great strides in other types of cancers as well. So we take, you know, two steps forward, one step back when it comes to all of these things. ⁓ hoping AI too, that that could be a positive area that helps reduce friction, both at the front door to healthcare with all of those administrative kinds of things.

Ali: Yeah.

Terry Adirim: within the exam room ⁓ with ambient AI scribes and summarizing notes that'll free up physicians from having to type while they're talking to you. ⁓ and that back back in, back office kind of processes that hopefully that'll help smooth things ⁓ out for patients. So again, it's two steps forward, one step back. yeah, hopefully it does get better.

Ali: Yeah. Fair to say doctors are ready for change too. everybody is ready for change. ⁓ we just and and and as patients, anyone in my community here, you can email your senator, your representatives, anybody, a quick email. It doesn't take very long. You don't have to be a huge advocate, you don't have to storm the gates or all that, but just send it like this isn't working. We're all su like we can't afford it. We we need help. This is a major issue for your constituents, something like that. ⁓ I emailed two of them today about something else in my town, but you know, it it can it it does it a little step everyone does a little bit, it can make a big wave, I think. So ⁓ well, Dr. Deerum, your gift, thank you for being on my show. I've learned so much. I think ⁓ I'm definitely ⁓ have you. Thank you. Thank you. I have a little experience in this world here.

Terry Adirim: Exactly. I've learned from you too. I like the way you frame things. It's awesome. Really great.

Ali: ⁓ but I'm very, very interested in your book and I can see where it can be, you know, almost ⁓ anybody I I talked to a lot of people who are newly diagnosed, like y you need this book. I'm gonna gift you this book, it's gonna help you be prepared and things like that. So I I will definitely be interested. And when is it being published?

Terry Adirim: ⁓ it's being published ⁓ I mean it's being released on August 11th. It's available for pre-order on Amazon and other bookselling websites. And it's called the Prepared Patient, Your Guide to Surviving the Healthcare System. ⁓ and it's again not a not a fix, but a small step ⁓ to helping people individually navigate this broken, not transparent, fragmented healthcare system.

Ali: Okay. That hopefully is getting better than it was. I think it is getting better in some respects. So we'll see. ⁓ but you know, be prepared. So ⁓ again, thank you so much for being here and ⁓ I really loved our time together, Terry, Dr. Adir. Thank you. ⁓

Terry Adirim: Yes. And thank you for having me. You're s this was awesome and you're doing a great public service. So thank you.

Ali: Thank you.