The Prepared Patient: How to Navigate a Broken Healthcare System with Dr. Terry Adirim
Dr. Terry Adirim has spent nearly three decades seeing American healthcare from almost every angle: as a pediatric emergency physician, academic, public-health expert, and senior federal health official. In this conversation, she explains how her early experiences treating medically complex children led her from one-on-one medicine into health policy, including leadership roles at the Department of Defense. She also offers a rare insider perspective on how federal health policy actually gets made, why change can move so slowly, and why patients and advocacy groups often have more influence than they realize.
The conversation then turns to the growing difficulty of navigating the American healthcare system. Dr. Adirim describes a system that has become increasingly fragmented by consolidation, insurance requirements, prior authorizations, regulation, and competing financial incentives. Her response is practical rather than theoretical: patients need to become better informed and better prepared. Her new book, The Prepared Patient: Your Guide to Surviving the Health Care System, teaches patients how to understand insurance, prepare for appointments, organize their medical information, ask better questions, and appeal insurance denials. Central to the book is her idea of the “White Binder Patient,” inspired by parents of medically complex children who arrived at the ER carrying organized records and were able to become active partners in their child’s care.
One of the most actionable lessons from the episode is simply not to assume that an insurance company's “no” is final. Dr. Adirim explains how patients can enlist their physicians and formally appeal denials, sharing an example in which she helped a family member regain coverage for a long-standing medication within 48 hours. Her larger message is that patients cannot personally fix every structural problem in healthcare, but they can become far more capable advocates for themselves and the people they love. Learn more about Dr. Adirim and her work at TerryAdirimMD.com
TRANSCRIPT:
Host
Welcome back to the podcast. Today's guest is Dr. Terya Deerham. She's a physician author and health tech advisor. She has more than 25 years of experience spanning academic medicine and federal public health. She previously served in the Biden administration as a senior health official at the Department of Defense, leading the military health system and the Department of Veterans Affairs electric health record modernization effort.
She also served in leadership roles with academic and clinical medicine, and she currently advises health technology startups and is professor of health policy and management at the George Washington University Milken Institute School of Public Health. Welcome to the podcast, Dr. Terry. How are you?
Terry Adirim
Great. Thank you for inviting me. I'm really looking forward to our discussion.
Host
Me too. You have such a varied and kind of interesting past and history and career that I think you have a lot to offer across several different kind of facets of the healthcare industry. Let's start with, you know, kind of the beginning. What made you decide or want to become a doctor?
Terry Adirim
yeah, that was a while ago. Hard sometimes to remember. No, I'm kidding. I think I've always been very curious about science and health. Even as a young child, I was fascinated physicians and what they do. I think though, probably the biggest reason is probably very similar to what a lot of applicants to medical school.
Host
Ha ha.
Terry Adirim
say is that they want to help people. And I think helping people at their most vulnerable is probably one of the highest missions that you could aspire to. So that has always been a thread throughout my career that I I just want to help people get what they need, especially when they're at their most vulnerable.
Host
Yeah, I think a lot of people listening to this podcast, both on you know, if you're a loved one trying to take care of of someone very close to you or or a a an advocate, you can relate to that, the idea that you just want to help people. I know myself I can relate to that. how did you transition into the policy work and and what did being a physician kind of inform you in that role?
Terry Adirim
That's a great question. It started, my interest in public health, public policy, probably started during medical school. And to get that education, which you don't get in medical school, I did go to public health school between third and fourth year of my medical school. I went to I went to a different school. I went to Harvard to get my master's in public health.
And that really helped shape the rest of my career. I learned a lot about taking care of populations of people, whereas in medicine, you take it's a one-on-one type of thing. So I really was curious about how you could make an impact on large groups of people. So that changed my trajectory. I decided that one of the ways I wanted to do this was to help the future and decided to go into pediatrics.
went through my years of training and chose pediatric emergency medicine because that's you know children at their most vulnerable children and families, I should say. and so being able to be there, help families during times of crises was very satisfying to me. But even during that time, as I became a young faculty.
at a children's hospital, I realized that I wanted to have an impact. Again, you know, how could I do that? So I created programs that help children with medical complexity. And I'm tying what I've done, what I'm doing now with writing my book, The Prepared Patient, back to my experience as an early career physician where I saw families.
of children with medical complexity and special health care needs, how organized and prepared they were. They were some of the, even though the children had medical complexity, there were some of the easier children to take care of because the parents just came with all their medical information. I call them white binder patients or white binder parents because they had these white binders that had.
Terry Adirim
all of their medical conditions or medications when they took their last dose, just you know, all of their medical specialists, which really helped us in the emergency department who did not have a relationship necessarily with these families, be able to take care of their children better. So that's it in a nutshell.
Host
Walk me through the timeline. So you were going to med school, and then between your third and fourth year, you got you went to get your public health degree, and then you went back to med school. You did it simultaneously. And then you were juggling a lot of like balls in the air, it sounds like. Okay, okay.
Terry Adirim
Now it's it's a dual degree. So, and I was probably amongst one of the first, actually I was the first person at my medical school, but it wasn't that common when I was doing it. But now a lot of medical students will get another degree while they're getting their medical degree. They might get an MBA, they might get a master's in public health. And I chose to do it because I wanted to expand my level of knowledge from taking care of individual patients to taking care of populations of patients.
It also helped me decide on what specialty I wanted to pursue. So I it was, you know, I went away to do it between third and fourth year and then came back for my fourth year and finished with a dual degree, an MD MPH.
Host
And how long was it before you could really work on the policy side and and kind of on the public side instead of the one on one patient facing side? Did you have to kind of how many years as a physician did you actually spend?
Terry Adirim
Well, first I went through my training. So it was three years of of residency training and then two to three years of fellowship. And when I came out as an attending, it was that time that I pursued doing policy work as an academic. So I applied for grant funding for programs for children with special health care needs. So my first grant were looked at
how we could better serve children who are being transported by EMTs and paramedics, children who have special health care needs or medical complexity, how we could do better with that and change some of the policies and laws around where children are taken by emergency medical services. I also created an education program for EMTs and paramedics. So that was kind of my first step and my foray into wanting to help.
populations. But then within several years, I, you know, I got promoted from assistant professor to associate professor. I did some deep thinking about how I wanted to parlay this experience into a more impactful experience. So after spending a couple of years as a department director, an emergency department director, I then jumped right in.
And applied for and became a AAAS Science and Health Science and Technology Policy Fellow. The American Association for the Advancement of Science has a really strong fellowship program that puts scientists and some of us who are physicians into the federal government as experts to learn how government works.
And I meant to do that just for one to two years, but I got hired by the agency where I was placed and was able to do some really meaningful, significant work as a career civil servant. and that's how that all started. So there many different ways you could do it. So, but that's the way I chose at that time.
Host
I wanna talk about your
Host
Yeah, all of this is fascinating to me. And I want to get back to your book, but before we go there, what since you're one of the few people we've t we've been able to talk to on the podcast who's worked on the policy side and has worked in the government space. And I'm always curious not not to see how the sausage is made, so to speak, but what do people who aren't, you know, privy to the complexities and the red tape, what what don't we understand as the public on the government side and on the policy side?
Terry Adirim
Yeah. Well, I think even as I came in, what I didn't know was that the people making the laws are are are are members of Congress. So the federal government, the agencies and departments implement the laws and are given authorities to develop policy, but the real, no, I wouldn't say the real policy, but a lot of policy is done by Congress.
So I think I didn't realize that until I became, you know, somebody doing policy within a federal department. So that's one thing I think people don't realize because later, when I, you know, was a senior executive and a political leader, a political in a political position as a leader, I think a lot of times people will come to you wanting you to do things.
That you can't because you don't have the legal authority to do it. So I think that's also something that I think people don't realize. The other thing, too, is people understand how complex these things are. And getting that sausage made is not like boom, it can get done. Sometimes it can, once in a while, but oftentimes it really takes a lot of steps.
in order to get to the outcome that you're looking for. So those are probably the three things that I think I also learned while I was there, but I think also the public may not realize as well. The other thing people should realize too, and I said this all the time, and I say this now, is that people on the outside have a lot more influence than they realize.
Sometimes people on the inside don't have as much influence. So being part of advocacy groups really does make an impact. Going to your congressional member, going to Congress and talking to staff and members of Congress is really impactful. Just as going to your federal agencies and departments to talk about your particular advocacy issues, they really do make an impact.
Host
Well, that's good to know. democracy at work, right? So since you've had experience both on the policy side, in the political sphere, in the agencies, and as a physician, where what's your view of the healthcare system today from, you know, a basic patient? And this kind of transitions back into your book. I mean, do you feel like it's a robust system that there are kind of cracks and flaws or it's as good as it can be
Terry Adirim
Yeah.
Host
But w it still has its, you know, foibles to it. Kind of what's the overall view you have?
Terry Adirim
Wow, that's a loaded question. I think, I think what I've noticed in my 30-year career is a real deterioration in our system. It is highly fragmented, it is frustrating for both clinicians as well as patients, and it's only gotten worse and harder to navigate. So there is that. At the same time,
There's been a lot of progress in the science. I mean, we're saving more lives. I mean, more people with cancer are surviving their cancer and either living with it or being cured. So I think there's sort of that dual-edged kind of look at healthcare right now, that we shouldn't lose the promise of our healthcare system and all the good things about it. But I think we really need to address the fact that.
It's not accessible. Primary care is really tough to access, that there's a multi-tier system, the haves and the have-nots. And I think there's just a lot of friction and frustration going on. And that's what my book is meant to address. Because yeah, a lot of you know, a lot of this too is that it's so complex that people don't get how to navigate it.
Host
Yeah.
Terry Adirim
So HHS, the Department of Health and Human Services, came out with this statistic, which is to me frightening. Only 12% of people in this country are fully health literate. And that has a big impact on your health outcomes and on your finances. And we've seen that. So probably the biggest reason why people go through bankruptcy, personal bankruptcy is medical debt, right?
And it's a pretty significant proportion of people on GoFundBay. And it shouldn't be that way. In a country such as ours, people should have access to care. They shouldn't go broke bec you know, or have to choose between their diabetes medication and paying their rent. And and that is far too common right now. So our system is just not serving as many people as it should be serving.
Host
How do they define or how would you define rather health literacy?
Terry Adirim
And I want to be clear, 12% that's fully health literate. So it doesn't mean that you know most people are not health literate. I think, you know, it doesn't really matter how smart you are, how educated you are, navigating our system is really tough, right? So when I say health literate, I mean understanding your coverage. Like what does your health insurance cover? What does it mean to go without coverage?
Host
Okay.
Terry Adirim
no understanding your medical condition, understanding how to you know navigate, get finding your medications. I mean, all of these pieces that you need in order to remain healthy or become healthy are very difficult and complex and can be difficult to understand no matter how educated you are. And I keep talking about, I keep telling people, even my daughter who
graduated law school, a smart young woman, while I was writing this book, came in with her insurance card and she didn't understand the numbers, which numbers she was supposed to give to her to her doctor, she was going for an appointment. and that's why I included that also in my book, How You Read Your Insurance Card, How You Understand Your Coverage. because even those things that may seem big basic to those of us in healthcare or understanding health policy,
They're not basic. and it's it's can be difficult to understand and navigate.
Host
Yeah. Abs I and I think it's one of those things that a lot of people in the healthcare space take for granted 'cause you look at insurance cards and forms and prescriptions all day and so you read it as easily as you know, y as I would read a novel, but then you you give it to somebody else and it's like, Well, I don't even know which line I'm supposed to look at and what this means and what the implication is and
It's scary for a lot of people. And so people just kind of throw their hands up and say, I don't know. I'm just gonna trust whoever I talk to first, because what other choice do I have? So I think that, you know, one of the solutions that I'm I'm always interested in is the one that you're participating in, and that's the education of the public. So let's talk about the book, The Prepared Patient. And the subtitle here is your guide to surviving the healthcare system, which
You know, has a little bit of a of of a f of a fun title there. Surviving the healthcare system does kind of make it sound scary. tell me when you started writing this book, you know, what really drove you to to was it an incident that got you to say, I just I need to sit down and write it, or did you finally have time in your schedule that you're like, I've been wanting to write this for 30 years? Kind of what, what was it?
Terry Adirim
Yeah, that's a great question. well, I left I left federal government, I left my position at the Department of Veterans Affairs in the middle of 2023. And it was then that I said, you know what, I really want to, I had two book ideas in mind, and this was one of them. and I really felt that you know we could better care for patients as physicians if we had.
Patients who understood the system better and had just a certain level of information to help them navigate the system. You know, we have a very unbalanced information system, right? We have physicians up here in the healthcare system that has all the information, and then patients that have less of an understanding and less information. So I wanted to really create a primer, you know, just a book that
could help level the playing field when it comes to information so that people can better partner with their physicians in taking care of their health. I know, you know, some incidents that, you know, there were a number of incidents that kind of contributed to this. And I do some storytelling in the book, but I'll go back to where when my father was sick and, you know, he just trusted everything his doctors told him. He did, you know,
smart man. I mean, he was a very successful business owner, knew a lot, but he didn't know a lot about medicine and healthcare and just whatever his doctor said, and maybe he came from that generation where they trusted everybody, but you know, I was his advocate and I would say, no, no, no, that that's not exactly right. Let me help you understand things. So
I just really think that people can understand more and they can participate more in their care and they can advocate for themselves better if they have a more information than what they may have.
Host
So does reading the book kind of prepare people to be that white binder patient where you could come in if you really wanted to and have all the data and stuff printed out and and kind of partner with your own doctor? Is that one of the kind of goals?
Terry Adirim
Yes, absolutely. Now, is it going to be perfect? Is it going to solve our healthcare system issues? No, but it's one piece that will help an individual, whether you're a patient or not a patient, because everybody someday is going to be a patient, right? it will help you prepare for that inevitability. it will help you get the care that you're entitled to.
And it's a very practical guide. I mean, it does tell stories that are illustrative, but it will really break down here's how you prepare for your primary care visit. How do you choose a primary care doctor? How, you know, what questions should you ask during your visit? It goes into what does your insurance coverage cover? How do you find out what your insurance covers? How do you choose a health insurance plan?
It talks about weighing whether you should go without insurance or not. And that's a huge issue now because healthcare insurance is super expensive. Even if you're employed and you're one of the lucky 50 some odd percent of people in this country that have an employer plan, employer sponsored plan, you're still paying a lot of money to participate in that plan. But if not, and you need to go in the marketplace or in the
private sector, there's a lot right now going on that's making it more difficult and putting up a lot of obstacles to accessing that right now. And it's it's really a shame. I mean, just this week the Department of Health and Human Services announced that they took off, you know, hundreds of thousands of people out of the their marketplace plans with the by saying that, well, we took off people who weren't using their plans.
Well, good. You know, that's a good thing that they're not using their plan. That means they're healthy, they didn't need it. And those people help with those, you know, with the pool. You know, instead of an insurance company having to deal with all sick people, there's a lot of people there. So yeah.
Host
Yeah. Not to mention that their premiums are subsidizing the costs for everybody else because they're not using the services. It's a dumb move. Gosh.
Terry Adirim
Yes.
Right. Well, right. And so I think, you know, there's a lot stacked against people right now when it comes to health care. So there's getting coverage, keeping coverage, affording care, making decisions. And there's a lot in my book that can help people through that decision making process.
Host
Other than a lack of health literacy, or of fluency, we should even say, what you know what you you talked about the fragmentation and how the hospital system and the healthcare system in general has gotten more complicated. Other than the lack of education or literacy, why did it become so fragmented? What what have you seen over the last few decades where things have it they've just gotten un you know, unencumbered with their complexity?
Terry Adirim
Yeah. I think that's multifactorial reason for that. when I first started practicing, things were kind of simpler, right? we didn't have electronic health records at the start of my career, right? Things were all handwritten, people called for their referrals. we, you know, there were a lot more physicians in private practice. there were fewer physicians that were employed by health systems.
but then over a period of time, a lot of these healthcare institutions and systems consolidated, right? So that added a level of complexity and access issues because once they consolidated, right, health plans became part of health systems and health systems bought up all the region's practices and now they're employing physicians, and we have
private equity that came in to profit off of healthcare, which a lot of money exchanges hands. And so because these things were happening, there were a lot of regulatory things happening at the local, state, and federal level that added to this complexity. And then health insurance or payers felt they needed to rein in costs
And rein in unnecessary care. And so they put in things like prior authorizations to get treatment and to get medications, right? And services. and they were originally meant to be, those processes were originally meant to be a good thing, right? Because there's a lot of unnecessary wasteful care or what we call low-value care in health care, right? So insurance companies don't want to pay for unnecessary care. So they put in these.
review processes. Unfortunately, it has become a way to deny care that patients need or care that physicians have said, yes, my patient needs that care. Or medications. You know, a pa let me give an example where I think this has been harmful is where, you know, a patient who's been on a longstanding, let's say diabetes medication, moves to another insurance plan for whatever reason.
Terry Adirim
is denied that medication because their processes say or their policies say you have to start at with the cheaper medications. Well, that patient may have already done that. It's just they were on a different health insurance plan. So it's that kind of thing that adds to the complexity of our healthcare system, these rules, regulations, and all these additional layers of hoops that patients and
physicians have to jump through that make it harder to access the care that patients need.
Host
Yeah. That's the story I keep hearing from everybody is that they just there's there's more money involved, there's more rules involved, there's more processes and I it would have been nice to have like been my age of you know, thirty, forty years ago and see the simplicity and and kind of see how it could have been.
Terry Adirim
I started when if you remember there were like a lot of stuff about HMOs, right? And HMOs, you know, denying care and all that. So this is not new, it's just like on steroids now, you know, and especially with AI where they could they automate the denials and the prior authorizations. And it's sort of this race, you know, between healthcare organizations and systems and payers to kind of
Host
Mm-hmm, mm-hmm.
Terry Adirim
you know, do this work and it and it really leaves the patient in the middle, you know, and physicians too, but it it leaves them wondering, how do I access the care that I need? Right? I'm covered. Why why can't I get the care that I need? It's it's a problem.
Host
Yeah. I think the that on an individual level, your book and things like it are kind of the best line of defense. If you know how to fight for and advocate for yourself or for a loved one, you're in much a much better space, a much better position. I've also seen personally, you know, if you if you push back a little bit on some of this stuff, they'll just cave. Right? It's like, okay, well, you asked.
Twice politely. That's all I needed to hear. Because there's just we just don't even pay attention. Also, you know, doctors and nurses are human and they sometimes they make mistakes or they have a long shift and sometimes they need a nudge. so your book, The Prepared Patient, Your Guide to Surviving, the Healthcare System, is it is it out now? Is it available wherever books are sold? Is it coming out? It's out.
Terry Adirim
Yes, yes, it is. It's out. and I think you make an important point, which I want to get back to, is that most people do not appeal denials of care or prior authorizations. I mean, let that sink in, right? Most people don't, but those that do, as you point out, prevail. So I that's the other thing in my book that I do is I I give a sample letter about how you could do an appeal. And I think it
Host
Yeah, go ahead.
Terry Adirim
You know, this is based on my experience because I get asked a lot about how to appeal these things. And the things that I tell people to do is one, engage your physician, because your physician wants you to get the care that you need, right? When I prescribe something, I don't want someone, someone who's not from my field or knows as much as me telling me whether or not my patient could get that treatment. So engage your physician. The other thing to do is appeal it. And I know it's a pain. I know we're all busy. You could be working, you could be sick.
Get somebody to help you, a family member, a trusted friend, somebody to help you with that. And as you said, sometimes it's as simple as a letter, right? And you know, I did this for a family member recently who changed insurance plans. They changed jobs. She changed insurance plans, and then they told her the medication she had been on for 10 years. She couldn't get it. She had to try the lower, the cheaper, lower medications.
And that's just crazy. She had already done that. She's been doing well. She's fully employed, doing beautifully. Her condition is well controlled. And now they want her to go back to the medications that failed. and in this particular case, in the state that she lived in, it turned out that that that they for they had 48 hours for an urgent appeal. They had to answer in 48 hours. So I wrote the letter and said this is an urgent issue.
Host
Wow.
Terry Adirim
th this person has X disease and without their medication, they will not be able to work, they will not be able to function, blah, blah, blah. And boom, within 48 hours, she was approved for that medication. So it's not always that easy or that simple. and you may need to engage.
Host
Or that much of a pressure cooker. I mean, wow, you have forty eight hours or that's it. I mean, that's crazy.
Terry Adirim
And they should, if you're gonna deny somebody the care that they've been getting that's working, and if they go off that medicine, you know, there could be bad health impacts, they should only have forty eight hours.
Host
Right. Okay. Well, your book's available wherever books are sold. You also have a website. If you want to learn more about Terriaderum and her own work, it's teriaderum D dot com. And just so you're not confused about the spelling, it's T E R R Y A D I R I M M D dot com. Is that right, Terry?
Terry Adirim
That's correct. Thank you so much.
Host
Thank you so much for being here and sharing your decades of experience. It's it's always nice to to talk to someone who's so well versed in so many different facets and keep up the good work.
Terry Adirim
Right. I appreciate being here. Thank you so much. And I really appreciate the work that you're doing. So thank you for having me on your podcast.
Host
Pleasure.
