Endo Battery

Understanding Insurance, Informed Consent, and Finding Skilled Endometriosis Care with Dr. Jeff Arrington

• Alanna • Episode 108

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Are you struggling to navigate the healthcare system for endometriosis? In this episode, Dr. Jeff Arrington, a renowned expert in endometriosis care, sheds light on how insurance structures fail to support skilled excision surgeries and why this creates barriers to receiving the gold standard of care.

We also break down:

  • The challenges patients face in finding qualified endometriosis specialists.
  • Proven strategies to locate a skilled provider and advocate for yourself.
  • The importance of informed consent—what it is, why it matters, and how it empowers your health decisions.
  • How patients and providers can work together to change the narrative around endometriosis treatment.

Whether you're seeking better care, trying to make sense of insurance, or looking for ways to make informed decisions about your health, this episode is packed with actionable insights you can’t afford to miss.

Tune in now to discover how to take control of your endometriosis journey!

Website endobattery.com

Speaker 1:

Welcome to EndoBattery, where I share my journey with endometriosis and chronic illness, while learning and growing along the way. This podcast is not a substitute for medical advice, but a supportive space to provide community and valuable information so you never have to face this journey alone. We embrace a range of perspectives that may not always align with our own. Believing that open dialogue helps us grow and gain new tools always align with our own. Believing that open dialogue helps us grow and gain new tools. Join me as I share stories of strength, resilience and hope, from personal experiences to expert insights. I'm your host, alana, and this is IndoBattery charging our lives when endometriosis drains us. Welcome back to IndoBattery. Grab your cup of coffee or your cup of tea and join me at the table. I'm absolutely thrilled to be joined at the table by my guest who has truly transformed the landscape of endometriosis care Dr Jeff Arrington.

Speaker 1:

Dr Arrington is widely recognized as one of America's best physicians and serves as the chair of the AAGL Endometriosis Reproductive Surgery Special Interest Group. He's not only an expert in advanced, minimally invasive gynecologic surgery, but also a fierce advocate for endometriosis patients both in and out of the operating room. Known for his compassionate approach and relentless dedication, dr Arrington has made it his mission to give hope to patients who've been told their cases are hopeless. With over two decades of surgical experience and a steadfast belief in excision as the best treatment for endometriosis, dr Arrington has changed countless lives. He's helped patients worldwide reclaim their quality of life through meticulous care, cutting edge techniques and a deep understanding of the physical and emotional toll of this disease.

Speaker 1:

Beyond the OR, he's a sought-after speaker, educator and advocate, bringing attention to the complexities of endometriosis and the importance of individualized, informed care. It's an honor to have him here today to discuss not only his groundbreaking work but also the challenges patients face in accessing proper care and navigating the medical system. Please help me in welcoming the incredible Dr Jeff Arrington. Thank you, dr Arrington, so much for taking the time to join me today, and it's always a pleasure to spend time with you and pick your brain about everything that you know, because you're so wise and you are knowledgeable about so many different things. So thank you so much for sitting down with me today.

Speaker 2:

You're welcome Again. It's been way too long coming.

Speaker 1:

It's been a hot second, but I just appreciate you doing it nonetheless, so I'll take any time that you have to share your wisdom. We're going to talk a lot about some maybe potentially triggering things for some people today, but some really important knowledge for people to take into their health journey. Before we get to that point, can you give us just a background of what you do and who you are, so that people know how awesome you are?

Speaker 2:

So I grew up and born and raised in Utah, of course, went to med school, all that sort of thing, fellowship training in Chattanooga that was the program that CY Liu ran and then Dr Furr took over for a number of years and got my kind of advanced laparoscopy training there, moved back to Utah and practiced for 14 years the most of that just general OBGYN with a focus on advanced laparoscopic surgery, including the endometriosis work. Then, about 12 years into my practice, or to the practice, began seeing a higher need with surgical patients, all takers so I stopped doing obstetrics and then the endometriosis need became so great that I actually started just pushing hysterectomies, prolapse work, incontinence work, those sorts of things to my partners to open up more time for patients with endometriosis. So really since 2018, focused solely on endometriosis that's all I've done really since 2018. Kept that up for a year in Utah Initially, you know, contracting with insurance as part of the big multi-specialty clinic.

Speaker 2:

It then became evident that there was no way I couldn't be successful financially with the clinic and even had my clinics backing. They allowed me to go out of network and leave the clinic and keep my own practice in that same building. That's where my move to out of network came into play and since then just been focused solely on endometriosis. Had about four, just shy of four years, or just over four years, moved to Atlanta with the Center for Endometriosis Care and Practice there. For the last year and a half I've been back in Utah kind of the South Salt Lake area doing the same thing, offering the same level of care. Things have gone really, really well.

Speaker 1:

Yeah, I think this is very timely that we're talking and I told you this. I think it's very timely. Recently there's been a lot of discussion in the news and with things with Blue Cross, blue Shield, not paying for anesthesia past a certain time, and then you have the death of the CEO of UnitedHealthcare and I think the bigger picture here is that with insurance you mentioned, you were in network and we're having a hard time paying for your bills and then you went out of network and you're more successful, able to practice the way you want. So this brings a bigger picture to the table, because a lot of us with endometriosis are struggling to navigate the insurance piece of endometriosis. Can you give us a sense of what this is like to try to have insurance as a provider for endometriosis, so that we understand why a lot of providers cannot afford to be an in-network provider for insurance?

Speaker 2:

Within the healthcare system, the way that it's structured, and this is all geared really toward CMS, which is the National Medicare System, that they really set up the underlying pay scale or fee scale or value scale of everything we do in medicine and then all the private health insurers. They use that to set their own values to procedures. The way that works is they look at everything and it's each procedure, each office visit, everything we do is given what's called an RVU or relative value unit, and the ultimate base level of an RVU would be one. And let's say that's just the simplest thing, just a simple, straightforward office visit. And then everything else we do is compared to that level. You know that one RVU scale and they determine is that, is it easier than that? Is it harder than that? If it is harder than that, how much harder? And they give a relative value compared to that one single. You know RVU value. So certainly you know an endometriosis surgery is far more complex than just a routine quick in and out, you know office visit. So if the routine visit is given, say, an RVU of one, an endometriosis surgery may be given an RVU value of, say, 12. Cardiothoracic surgery and neurosurgery would probably be given an RVU value of 25, 30. I have no idea what the number is, but it gives you an idea of how they look at things. And, interestingly, within that RVU system everything is in a single pie. So if they want to increase an RVU for a particular specialty or procedure, that increase has to be matched by a decrease somewhere else and it doesn't even have to be in the same specialty. So there's a finite in the government. For some reason they've determined there's a finite piece of pie and every time somebody gets a bigger piece of the pie, somebody else gets a smaller piece of the pie. So it's all configured around that part of it.

Speaker 2:

Now, within the RVU so relative value unit they typically have three components that apply to doctors and they look at the amount of work that's involved in providing the care. So for surgery they're looking at the preoperative visit, they're looking at the surgery itself the incisions, the entry, the procedure, the closure, and then it also takes into account an appropriate period of time of post-operative care. Usually for laparoscopy I think that's about six weeks for most procedures, but that's all included in the work that's around the procedure. They also have a portion of the RVU that takes into account the malpractice risk. So you know, within a medical practice malpractice can be super expensive in the US. So the more risky a procedure is, the higher the component of the malpractice portion of the RVU and that becomes important. We'll talk about that a little bit with respect to endometriosis care as well.

Speaker 2:

And then the final piece of that RVU puzzle, the third piece, is the geography, basically the location of the procedure. So clearly, throughout the country, practicing in California, practicing in New York, medical care is far more expensive in those states, in those areas, than it is, say, in Utah. So if you take an equivalent level of care from Utah, transfer that into New York or California big cities, wherever the cost of that same care is going to be far higher, partly because of the geographic location and just the cost of living and cost of practice. Does that make sense? Yeah, we look at advanced endometriosis care. Even within, say, a laparoscopy for endometriosis.

Speaker 2:

There is far more complexity to really doing good endometriosis work doing the dissection, separating the adhesion, separating the bowel, working around the ureters than somebody that goes in and says, oh, that endometriosis directly over the ureter. I very carefully just touched cautery to it so I didn't damage the ureter instead of doing the appropriate dissection and separating the disease out. Or if they go in and see some bowel endometriosis, to maybe just very easily carefully, safely burn across the surface but not really treat it. The risk of that is far less than a doctor actually going in and cutting the disease out and repairing the bowel or dissecting the ureter out, the thing. Where that comes into play, when insurance companies look at that RVU for laparoscopy, they don't make any adjustments on the complexity risk between superficial ablation and excision of disease.

Speaker 2:

To the insurance companies and to that CMS RVU system it's all the same and that's just the malpractice side of things. Certainly the work involved, you know, taking 10, 15 minutes to quickly burn a few places rather than two or three hours to cut disease out. They have zero accounting for the extra work involved in the tedious work involved in full excision rather than just, you know, spot burning a couple of places and saying that's the best I can do. So when we look at the way that insurance looks at things they consider a superficial you know. Let's say somebody gets in and there's just endometriosis everywhere but no adhesions.

Speaker 2:

And let's just say that you know there is some depth to the disease but there's no bowel involvement, no ureter dissections, but really widespread endometriosis with some depth to the disease. But there's no bowel involvement, no ureter dissections, but really widespread endometriosis with some depth, to the tissues, to the side of the rectum. Going in and cutting that out, you know, can take an hour and a half, couple hours sometimes, compared to a doc just going in and saying, well, here's a few spots, let's burn those and then leaving everything else untreated and untouched. We're talking a 10, 15 minute surgery versus an hour and a half surgery and the compensation, the RVU value for those procedures is exactly the same.

Speaker 1:

What is the impact of that on a provider, in not only the way that you perform your surgeries, but also in the way that you operate, in your time and the way that you approach surgeries? Because I have got to assume that those without a network capabilities are going to be more thorough, they're going to be more investigative when it comes to patient care prior to surgeries, whereas those who are in network only doing ablation are probably likely not going to spend as much time with their patients because they don't have the time to spend with their patients. Is that accurate?

Speaker 2:

I think so. You know, as far as how it affects my practice and the way I approach surgery and approach patients, it doesn't at all. You know I would never compromise what I'm able to provide for the patients based off. You know how much is insurance paying at the time. So I go through that and learning that you know spending 10, 15 minutes or let's say 15, 20 minutes of a surgery and getting paid the same as if I'm spending an hour and a half, clearly financially I can support my practice better if I just spend 20 minutes doing the surgery and getting paid the same, rather than spending an hour and a surgery and getting paid the same, rather than spending an hour and a half and getting paid the same. You know, in the course of a procedure or surgery day the practice brings in more to support the overhead, the malpractice, the cost of practice, all the stuff that goes into that, all the salaries of the staff. So if you're extending the operative time and getting the same reimbursement, you know if you're spending an hour and a half, sometimes two, three, four hours on a case and getting the same as someone who spends 20 minutes over time, that's what I was doing. Again, I would never compromise the care that I offered to the patient just because I know I'm only going to get paid so much. I'm not going to make them come back a second time saying, hey, we only had 20 minutes to do this, there's still four hours of work, so we're going to make you come back, you know 15 more times to get the disease taken care of. That's ridiculous. That's ridiculous, right.

Speaker 2:

But in that last year with the multi-specialty group where they let me go out of network at that point and they were actually supporting and trying to contact insurers on my behalf to see if we could get a different fee structure or compensation structure for the endometriosis work and I think there was Cigna was the only one that agreed to even make a small adjustment and during that final year where I was out of network with them, just the cost of my practice, supporting my nurse practitioner, supporting my staff, supporting the overhead of the clinic, supporting salary, malpractice, all that goes into that my account ran in the red 11 out of 12 months. So for my living expenses we had to draw on our savings 11 out of those 12 months. And that's really what kind of forced my hand to end up leaving the clinic because they couldn't. You know, as a big multi-specialty clinic, they're not going to support a practice that is running in the negative all the time. So they let me go out of network and have been out of network since late 2017, I think.

Speaker 1:

What is the impact on the patient of that? Because I hear the frustration for patients. They're like we want gold standard care but we can't afford gold standard care, and I know that there's a lot of discussion behind this, because I believe pretty much all endometriosis specialists really do have the best interest of the patient in mind, but they also have to make a living and this is where it gets a little bit contentious, right, because they want the best, but the patients don't have the money to afford it.

Speaker 1:

What has been your experience with that, with patients?

Speaker 2:

I mean there is a lot of frustration. The hard part is most patients, when they get desperate, you know a lot of them will find a way. I remember speaking with Dr Dulemba. I mean, and the thing is every one of us has a different way that we approach the financial aspect of being out of network. Speaking with Dr Dulemba when he was practicing, he had a flat fee for everybody, regardless of what was done, regardless of what the severity of the case was. So that was more of, I guess, a socialistic approach to it where everybody paid the same but everybody got the care that they needed.

Speaker 2:

Other practices, you know they'll they, they set the fees really high with the idea that they want to try to get as much as they can from the insurance companies. Sometimes patients are stuck with residual bills. Some practices have some safety nets built in for patient exposure, but regardless, I mean the hard part is when patients are paying for an insurance they want to be able to use that Right. You know they feel like they have. They have a right to be able to use that and the it just comes into play where there's a disconnect between what the insurance allow, or what the insurers feel is fair and what they call it usual and customary, compared to really what's needed for and reflect the work of an endometriosis excision specialist endometriosis care.

Speaker 2:

Unfortunately, a lot of them need to travel, but that's also where maybe you know, a little bit of shopping around can make a huge difference on the expense of your surgery and what your financial risk is as a patient. A lot of practices will allow payment plans, some care credit type of stuff. You know my practice in particular. When patients are in need, I have no problem at all making a. We do like a zero interest payment plan. It's no skin off my back. I'd rather be able to help the patients than, you know, bring money into the practice as much as I can. So there's a very, you know, varied ways that we look at it and, again, a little bit of shopping around. Certainly there are cheaper areas to have equivalent surgery than others.

Speaker 1:

Yeah, are you seeing patients submitting claims to insurance and then reimbursing any of the surgery or any of the care? And I think that's another thing too. Is that from my understanding, some surgeries, some insurance companies will cover maybe the hospital portion but not the doctor portion, or maybe can you touch on that a little bit?

Speaker 2:

Yeah, so that really depends on if they have out of network benefits. So if a doctor is not contracted with insurance they're considered out of network. If a patient has out of network benefits, they can use those if they want to. And the way we work at whether they go out of network or where they go self-pay with me, we help them figure out the best option, but we always schedule it at the hospital that the insurance company prefers, so hospital costs, anesthesia prefers, so hospital costs, anesthesia costs, pathology costs everything related to that is covered at their in-network rates. It's just the surgeon fees that would be out-of-network or self-pay. Got it Okay.

Speaker 2:

And really it kind of comes into play where the out-of-network deductible is huge. So if we look at a self-pay rate for a level one complexity endometriosis surgery, if a patient has an out-of-network deductible of $10,000, they have to meet that before insurance will pay anything, and so for those patients at least in my practice it's going to be cheaper for them to go self-pay, because it just makes sense, right? Because it's far cheaper than the additional charges of filing with insurance and things like that. Yeah.

Speaker 2:

So deductible amounts are huge, how much they've met is huge. The coverage after the deductible is huge. So my benefits specialist actually takes that all into account and uses that to provide a good faith estimate. So patients understand if I go with insurance, this is my exposure versus if I go self-pay. This is what I'm responsible for.

Speaker 1:

And I think that brings up another thing too. You are really big on the informed consent aspect of this, and this translates between payments and care and what's involved in it, but also it includes the exam room. You are like the master of informed consent. You understand it to and explain it so well. Can you kind of walk us through what is informed consent when it comes to even the financial burdens of endometriosis care as well? As when it comes to actual care for endometriosis.

Speaker 2:

Yeah, so I mean the most important thing, or endometriosis? Yeah, so I mean the most important thing. I mean both words in that informed consent. Both are equally important. A patient cannot give consent if they're not informed and we have to start by basically providing information. And that starts with the doctor just sitting and listening to a patient, understanding and considering the history and formulating in my mind as a physician what I think is going on.

Speaker 2:

This is what's called a differential diagnosis. We basically try to piece all the symptoms together and try to think of all the different things that could explain what the patient is experiencing. Certainly, in my line of work the most common are endometriosis, pelvic floor pain, adenomyosis, interstitial cystitis, nerve impingements or nerve irritations those sorts of things. In patients with longstanding pelvic pain we've got to consider central sensitization. So we're trying to listen to the patient formulate an idea, a number of ideas, of what we think may be going on and it may not be a single thing, it could be a collective group of things. And then we step back and think, okay, what can I do to explore that a little bit more and see if we can wean down or get a better idea, between all those possibilities, what the most likely sources are. That's where the exam comes into play and then that's when any imaging comes into play. So with an exam I use that patient's history to dictate what I need to figure out on the physical exam. And it's interesting that you know, over the course of my years I think that there's a lot of OBGYNs who do what I call just a standard annual cursory pelvic exam. You know they have a standard exam that they do at the time of the PAP and the annual exam and they use that same exam to evaluate a patient with pelvic pain and painful periods where really there needs to be more into it. You know, if I just quickly do a, feel the uterus, feel the ovaries, put a speculum in, look at the cervix, everything looks good. I'm not evaluating the muscle tension of the pelvis, I'm not evaluating the posterior vaginal wall or that deep cul-de-sac where a lot of times we find deep endometriosis. If I have a patient that has significant bowel symptoms with her pain, if I'm not doing a rectal exam with the physical exam, I'm skipping a really important part of that, just because all I've been trained to do is my cursory pelvic exam and really not evaluate sources of pain and then we take the history, take the physical exam and try to decide okay, are there any tests or are there any imaging studies that can be done to help bring clarity to what's going on?

Speaker 2:

The two most common ones in endometriosis care MRI and ultrasound I love, love, love my ultrasound, using dynamic ultrasound. Honestly, with all the stuff that's happened in endometriosis care over the last five plus years, I think the dynamic ultrasound is the most significant thing. It doesn't give us any, you know, it doesn't get us any close to curing or understanding the disease. But it really is an incredible triage tool that gives immediate feedback and I think you know MRI can be helpful for deep nodules. Sometimes it can show you know areas of suspicion for adhesion connection. It can see higher up on the colon than maybe ultrasound can. But ultrasound the dynamic aspect of ultrasound, is far, far better at detecting adhesion relationships of organs in the pelvis and that doesn't necessarily tell me that it's endometriosis that's causing that. But as I have the ultrasound and I'm looking at the screen and I see an ovary, the ovary usually sits up against the uterus, it sits around the small bowel and it sits around the side of the pelvis and the ovary should move separately from all three of those Right. So, as I have the ovary in view and there's videos you know a number of videos, either online or social media, that sort of thing, that show this as I move that ultrasound very gently, I watch the movement relationships between the ovary and if the ovary moves free from everything, I know it's not stuck and scarred down. If I push and the sidewall moves up and the ovary follows with it, I know that the ovary is stuck to the sidewall. So then I have to just step back and think, okay, why would it be stuck? Well, the reason adhesions form between organs is inflammation. Anything that's inflammatory can cause the adhesions to form.

Speaker 2:

The three most common in my patient population certainly endometriosis is one of them. Prior surgery is another History of a pelvic infection, PID type of stuff. Those are the most common things that would cause adhesion. So if I see an abnormal movement on the ultrasound, I've got to step back and think, okay, what's the most likely source of this adhesion? And again, without a prior surgical history or an extensive one, without a history of infection in the pelvis, the most likely in my patient population is going to be endometriosis. So we can actually use that ultrasound to not only triage. If a patient decides to have surgery, I know before I go in with a pretty reasonable understanding what I'm going to encounter and then I can use that knowledge to educate the patient. As we talk about the options, as we talk about what the approach to surgery would be, we can be more specific about the risks involved and how I would approach that area.

Speaker 2:

I mean ultrasound also. The results of that ultrasound and imaging can really give patient important information and make a decision that's appropriate for themselves. You know, if I have a younger patient or even an older patient let's say they're on just a simple birth control. Their pain is okay, controlled, but it's not great. It still impacts their life. They're worried about fertility down the road.

Speaker 2:

If we come in and do the ultrasound and really there's no evidence of adhesions, everything looks good, there's no nodules in the bowel. Their history, you know, certain points in their history make them more likely to have endometriosis than not. But it's probably going to be a stage one to stage two disease. And you know, early stage disease can affect fertility but certainly that sort of picture is not destructive at that point. So I've had patients that will just take that information and say, okay, you know I'm in school, I don't want to have to draw, you know, take time out or now is not the right time for me that they will continue to palliate or control the symptoms, knowing that we're not masking some destructive disease inside, but understanding that there probably is endometriosis there. And then you know they'll either come back for surgery at a later date or I can bring them back in a year or two, depending on the findings, repeat the ultrasound and we can use that ultrasound to do surveillance on the disease so that if it does start to show signs of progression or more advanced stuff, they have the opportunity to then make another decision on whether they keep doing the same or whether they move forward with surgery.

Speaker 2:

Before this dynamic ultrasound part, there was really no way to do surveillance on the disease.

Speaker 2:

You know we'd have a patient in their early 20s that would decide to do hormone palliation and, you know, get to the late 20s and then we find out that the disease has progressed and now it has become destructive and fertility is really damaged. With this dynamic ultrasound, honestly, there is almost no reason for that to happen. That's why I like because I, you know, I do that as part of my exam. So when a patient comes in, you know if I'm doing MRI. A patient comes in, I do my exam, we order the MRI. We have to get the authorization for the MRI. They schedule the MRI, then it has to be read and then the report gets back to me With the ultrasound. I do my exam and then, if it's appropriate, we do the ultrasound. I turn the screen and show my patient everything that I'm looking at every so they have a good understanding of what's there and right from there we can go to the discussion phase and present all the options and figure out what their plan of treatment is. It's awesome.

Speaker 1:

I learned this from you at the first summit I went to, when you did a whole breakout series on this.

Speaker 1:

And I loved that session because it not only gave the patient, us in the room, the ability to feel empowered, to talk about our care in a different way, but look at it in a different way, because I think a lot of us, when we go to get imaging done, it tends to be read by a radiologist. It tends to be you know, well, I'm going to send you for this test, I'm going to send you for that and everything. This is what we hear time and time again. It came back clear, there's nothing there, and then it's dropped. At that point, and what you did is you opened my eyes to the dynamic ultrasound, where we're actually seeing how this is effective and how this can be used. My question, though, is that is this as effective with those who have had hysterectomies? Because you know we talked about the uterus and the ovaries, but for those who have had hysterectomies, that's not necessarily an option.

Speaker 2:

Yeah. So I mean there are people you know studying the ultrasound Dr Leonardi's group up in Canada. They are far better at this than I am. So they, you know, they're getting to the point where they're looking for smaller implants on the peritoneum or on the lining in a patient.

Speaker 2:

For me, a patient that's had hysterectomy I you know, and and I guess I have the luxury of most of what I find at the time of surgery I'm going to be able to manage surgically, regardless of what my ultrasound findings are Right. So for for me, it's really kind of presenting to the patient this is what we think is going on. This is the complexity level that I think is going on. I mean it gives me a chance to maybe bring in colleagues if we need bowel resection, that sort of stuff. But for the most part I'm able to handle whatever I find at surgery. So with hysterectomy we can still evaluate the bowel for bowel involvement. We can still evaluate the space between the vaginal wall or the vaginal cuff and where the rectum comes in, because there still should be separate movement between those two. Right.

Speaker 2:

For a patient that still has ovaries. We can evaluate the ovarian adhesions if the ovaries are gone, looking at movement or slide of the bowel against the pelvic sidewall. So certainly there are not as many things that I can see because there's fewer organs to look at, but we can look at the movement between the bladder and the vaginal wall. We can look at the bowel over top of the small bowel, over top of the vaginal cuff. We can look at the rectal vaginal space and movement. We can look at the rectal wall and then just at least for me, understanding that you know, based off what I see there, if those all move pretty well, but we still think there's endometriosis, even if there's deep stuff around the ureters and the sidewall or the perectal or the uterus sacral ligaments. Sometimes we can see nodules in the uterus sacral.

Speaker 2:

I'm still going to be able to handle that, even if I didn't see it on the ultrasound. So you know, choosing the surgeon and skilled surgeon is also important because the ultrasound, the MRIs, clearly are not perfect and we want to make sure that. You know I don't want to get in and you know, as a patient I wouldn't want to get in there and then my surgeon come out and say, hey, I treated these areas but I couldn't go after this because I don't feel comfortable doing it. You know, I guess I've been, you know, incredibly blessed with the, with the desire and the opportunities to learn the advanced, the advanced surgeries to be able to provide that, regardless of what the ultrasound shows.

Speaker 1:

Well, and there's something else that you touched on was that a lot of patients will do medical management for years and then come back and the disease has progressed. When you talk about informed consent, this is where I think patients need to hear this because, like you said, you can't make an informed decision without the information. When they are going to see their provider and they've gone through all the testing, they're going to go for a laparoscopic surgery of some sort to investigate endometriosis. What should the doctor be providing the patient so they can make these informed decisions to their care and not just surgical or medical?

Speaker 2:

Yeah. So we'll back up a little bit. Typically after we go through the history, the exam, any imaging that sort of thing, get an idea of what's going on. I typically present three categories of options to my patients and most patients, unless there's like a life-threatening thing, if there's like a ureter obstruction or near bowel obstruction, that kind of changes it a little bit. But most patients are going to have three categories of options and the first is what I call observation, or just choosing to do nothing, Just understand what we think is going on, understand what they go through the patient understands what they go through and just choosing to suck it up and deal with it. Right.

Speaker 2:

The second category is really focused on symptom management. That's where all the hormones come into play. Whether it's a birth control pill, whether it's a progesterone medicine, whether it's an implant, whether it's medicines that put you in a menopause Lupron or Lyssa their only proven role is symptom control. Right.

Speaker 2:

Every study that we look with those medicines they're often touted as treatments for endometriosis. But if you look at the studies they all say endometriosis-related pain and in most of the head-to-head studies comparing those medicines they all work about the same Lupron's no more effective than birth control pill. Lupron's no more effective than the progesterone IUD. There was only one study that I think that looks at Orlissa compared to the Depo-Provera shot. The primary outcome on that one was looking at bone loss, but they did a secondary outcome on pain response and the Orlissa did not perform any better than the Depo-Provera shot. So it's important for patients to understand that the role of hormones is only to control symptoms. That's the only proven role. Right.

Speaker 2:

The hard part is is those are usually presented as well. We need to put you on this hormone to suppress the disease or we need to put you on the hormone to prevent progression. Number one there's not a single study that shows that any hormone prevents progression of the disease, and nobody ever defines what they mean by suppress. You know they say we're going to put you on this hormone to suppress disease, but they never define that. Does that mean symptom control? Does that mean disease control? Does that mean preventive progression? Nobody ever defines it. What we do know is that there are patients on a number of different hormones who have been on those hormones for years and years and years who end up being diagnosed with stage four destructive disease, even though they've been on those hormones for years and years and years. Who end up being diagnosed with stage four destructive disease even though they've been on the hormones. Right.

Speaker 2:

And I think just that history kind of points toward those. Those medicines, purity, are meant to control disease rather, or control symptoms rather than control disease, right? So when you know, when we talked in for talk informed consent, there's a couple words that need to be in front of that informed consent and those words are true and accurate that if a patient is being presented information that is not supported by the literature, not supported by studies, that information may not be accurate. And I think, in the sense of using hormones to prevent progression or, to quote, kill off remaining disease after surgery, there's not a single study to support that statement. And then you know, when we get to surgery really, there, I mean, there should, there should be a clear description or clear understanding of what the patient hopes to accomplish with the surgery, but also what the surgeon hopes to accomplish. You know, even from something as simple as just putting a camera in, right, you know, we don't. We don't get the opportunity to put a camera inside and look at a patient's insides very often, and in my, in my opinion, we should take advantage of that opportunity, right, that way. You know, if I'm a gynecologist, I typically just do work down in the pelvic area. Why not just turn the camera and look at the diaphragm, look at the liver, look at the gallbladder, the stomach, the appendix, the large bowel, the small bowel, take pictures of things and just gather information from a source that we don't have the opportunity to gather very often. And if there's disease there that maybe you know, let's say they find endometriosis on the diaphragm that they're not trained to treat. At least we have documentation now that it's there and the patient can be presented with further options. You know whether it's just symptom control or whether they want a referral to somebody who can treat it.

Speaker 2:

But it's also important to understand what you know, what the surgeon feels their goals of surgery are. Is it just to make the diagnosis? I see that all the time, a lot of time, in the main pediatric GYN group here in Utah, where they'll go in laparoscopically, make the diagnosis. They take a small biopsy or two and then they're done. And you know, and I look at that and I think honestly, just to go in and make the diagnosis makes zero sense to me, right, because all they're doing is going in and making the diagnosis and then putting patients back on the hormones that haven't already worked. That makes no sense. No sense, and so you know, is the doctor going in just to make the diagnosis? Are they going in to treat? How do they treat? What happens if they find disease that they're not comfortable treating? Or if it's around ureters of the bowel, how do they approach that?

Speaker 2:

If they get in, and you know, if they don't do the dynamic ultrasound, are they going in and they're surprised by what they find? You know, are they going to just muck around and cause more damage and cause more inflammation? Are they just going to document and pull out and say, hey, this is what's going on and continue that informed consent process and allow the patient to make a decision? I'm just going to sit on it or I'm going to ask for a referral, you know, and when a doctor finds that there's disease that's more complicated or more complex than what they can treat, is it the right of the doctor to make the decision that it's too risky to treat, or is the doctor's role more to say, hey, this is what's going on. These are the risks of treatment, but still let the patient make the judgment whether or not it's too risky and in my view, that's the patient's decision to make.

Speaker 1:

Yeah, that's something that I didn't have in my journey was the full story of what my outcome could be, and something that I have been pretty passionate about is the fact that I think we need to ask more questions, to get more clarity on the decisions that we're going to make, and I've found that a lot of providers don't readily give a lot of this information. Whether they agree with the approach or not, it's not something that they hand out to you as we could go this direction. Here's the outcome of what this direction could look like. These are the side effects of using these particular medications.

Speaker 1:

There's just not a lot of that conversation happening because they are the ones dictating the direction of care, and that, to me, is harmful to not only the patient but to the standard of care, is harmful to not only the patient but to the standard of care, and that's something. When you talked about that in that breakout session at the summit, it was like a light bulb went on for me, because many of us walk into the exam rooms almost expecting the provider to tell us what direction to go, and I understand that it can be overwhelming when you are dealing with trying to figure out your care, to make decisions. But I think that's what you're saying is that if you are given and you are equipped with all the accurate information not only accurate information, but given the research behind it, given everything that you can to make that decision I feel like there's less trauma. That happens when you can make that decision based off of the information you're given.

Speaker 2:

Yeah, and you know, probably more often than not the typical approach is that the patient goes in, sees the GYN, they do their quick cursory exam and then they you know they right now they're over the last five years there's been a big push to just make quote a clinical diagnosis of endometriosis. You know, oh, it sounds like endo. We're just going to give you the diagnosis of endo and then the doctor tells them you know, we're just going to put you on a birth control pill. That is not an informed consent, that's a doctor making a paternalistic decision for the patient. Informed consent would be okay.

Speaker 2:

Your options are observation, symptom control, but those patients also need to understand whether they choose to just watch it or if they choose to do a hormone to help control the symptoms. They have to understand that the disease can progress. So there are risks to surgery, clearly, but there are also risks for conservative symptom treatment. A patient needs to understand that if I choose hormone therapy, there's a risk down the road that this could progress to a destructive form of the disease. That could really dramatically change a patient's hopes and dreams. And if that's not discussed, that's not a complete informed consent. That's just a doctor saying this is your first treatment and we're taught that hormones should be the first line of treatment, you know, for the appropriate patient. I think it's okay to have that discussion, but in my view that's still a patient's decision to make, because there are three very valid ways to approach the disease. Between not doing anything, focusing symptom control. Surgery is a valid treatment for suspected endometriosis, treatment for suspected endometriosis.

Speaker 2:

And even you know excision from a surgery standpoint. There are a lot of doctors who don't like excision for whatever reason, whether they're still stuck in their residency training that's how they were taught to do it. Or you know, endometriosis patients. Sometimes they can be hard to figure out and hard to treat. Some of them don't do excision and you know they just have a bad taste in their mouth about it.

Speaker 2:

But surgery with ablation is an option, surgery with excision is an option and an appropriate informed consent needs to present to the patient options that that provider does not offer or cannot offer. And so you know there needs to be a discussion, a real discussion about the potential for excision. You know we've really got some improving data related to excision and how patients respond compared to regular surgery. You know we don't have the perfect one saying you know, with excision these are the recurrence rates and with ablation these are the recurrence rates. To my knowledge, that excision study has not been done where they, you know, take 100 patients operate on, all of them go back to the OR, two to five years later, take a bunch of biopsies and see what pops up.

Speaker 2:

But Horace Roman's group, their study I believe it was last year looking at reoperation rates, is huge. Right. You know, and that's taking all levels of complexity you know, reoperation is not the perfect marker. But when we look at patients with endometriosis that are going back every year or two years, you know they're on their sixth, seventh, eighth plus surgery, knowing that, approaching this with an excision, their risk of a reoperation in the next you know, five years is less than 20%. I mean, it's not the perfect marker but that's huge.

Speaker 1:

It's better than every year or every six months that you feel like you have to go back and that brings me back to this other point too, because you know this is a kind of a full circle moment in the sense that a lot of providers who do the ablation, who are in network, are going to be more diagnostic based because that's what they have at their ready. You know, they know how to do the diagnostic piece kind of right. We know that that's not complete when you just look at the camera right, and you have to have a trained eye for that. But the other part of this is, you know, recently there's been an advertisement from a provider who says we're minimally invasive surgery certified and we do endometriosis and we do fibroids. But that doesn't tell you a whole lot.

Speaker 2:

That doesn't actually tell you the approach in which they do their surgery right, and even just the comfort with more advanced disease, not you know how to look for deep disease, how to look for different areas, but also, if they do find it, even though they're minimally invasive, trained, are they comfortable with bowel dissections? Are they comfortable with cutting endometriosis out of the bowel or dissecting out the ureters? Just being minimally invasive trained? I mean, we're seeing more and more doctors, thankfully that are, but that really doesn't mean anything related to endometriosis surgery.

Speaker 1:

Right, it just means that they're trained with a different tool. Yeah, exactly, that's all it really means. It doesn't mean that they're able, they're not trained to address the disease in a complete form.

Speaker 1:

They're not trained to identify the disease in all its variations, right, because it presents very differently, and so. But I think what's important to understand is like when we're gonna make a full circle here, in that a lot of times these providers are covered by insurance, so it is a quicker option. They they're not going to spend as much time in the OR or the exam rooms, because that's not what's paid out to them and that's what's not. You know. They have to adhere to their guidelines in their exam rooms, because that's not what's paid out to them and that's what's not. You know. They have to adhere to their guidelines in their exam rooms as well, through the organizations that they work with, and so I think that is something that we struggle with, and when you have a chronic pain condition and you're going back for reoccurring surgeries or you're under medical management of some sort or suppression and it's not working, it's time to look outside of that. But that does get tricky as well, you know to kind of navigate that.

Speaker 2:

Yeah, you know, I've had patients where you know they've been with their OBGYN for years and years and they've had two or three or four surgeries and you look at the operative reports and every time they go back they're finding disease in the same areas. I mean, that's just telling me that it's not ever being fully treated. You know and I don't want to lump every in-network endometriosis surgeon into that group you know, certainly there are some that are in-network that will be complete and are good. Most of those are going to be. I think most of those are going to be in the academic setting, like university type of stuff, training programs. So there are certainly some that will do the work, but in general they can't run their practice financially to take three hours on an endometriosis surgery and get paid the same as if they spent 20 minutes.

Speaker 2:

If I did this, this is a little tricky, speaking kind of from an insurance side of things.

Speaker 2:

I don't think that this is what their thoughts are, but within the system that's set up, it seems like they would want me to.

Speaker 2:

If I have a stage three, stage four endometriosis, they would want me to treat that for an hour and then bring the patient back again in a year to treat and for another hour, bring them back in a year and a treat in six months to a year or whatever, until we're finally able to get the disease. So the way that it's set up reimbursement wise it's set up to do the same amount of work for that same. You know, over four surgeries the surgeon is going to be making as much as what I would have if I had to build out, as out of you know, just out of network to do the whole thing at once. The only problem is now we have four hospital charges, right, we have four anesthesia charges, we have four pathology charges rather than a single episode. But with the way the insurance is set up in the US, patients change insurance all the time, and so I think a lot of times they're probably hedging their bets that by the time the patient needs another surgery they'll be with another carrier.

Speaker 1:

Yeah, it's very business minded. It's not patient centric, it's very business minded. And I think you know we're seeing the results of that in recent history and recent things that have gone on in our country the disparity that patients feel in the frustration they feel with the insurance companies and with providers. And I also want to say, like I do know providers who take insurance who do great endometriosis excision, but they are limited as well in some cases, and so if the provider is providing informed consent, they're going to tell you what they're capable of as well. I think that should be part of the informed consent going into an operation is saying what they're capable of, what they're comfortable with.

Speaker 1:

If they see something like this I'm not comfortable with that. And then you can make your decision as to whether you want to move forward. Just because you've had the consultation with the provider does not mean you have to follow through with having surgery or care with that provider you know, yeah, and that that goes from.

Speaker 2:

You know the disease and how it's approached, also financially. You know, unfortunately, you know the finance aspect is an important part that patients have to consider. Yeah, so even you know, in my practices we go through that and we provide that good faith estimate. I tell them, you know that's just part of your decision process there's. You know, if we go forward and contact your insurance and provide that good faith estimate, there's no obligation to go forward. It's just a piece of the puzzle and if you want to take that and maybe compare to what it would cost somewhere else, whatever, you know that's purely up to the patient, that's. You know, unfortunately it's just a side of where things are at currently, but still an important piece of the puzzle.

Speaker 1:

Yeah, what advice do you have for providers to better support patients dealing with insurance-related obstacles?

Speaker 2:

Be willing to put the time in to reach out to the insurance. You know there's a number of different ways to try to work around it. Number one the patient should know that they can request a patient advocate with the insurance company.

Speaker 2:

Those advocates, their job is to help the patient navigate and find the care that they need. Sometimes doctors or practices have to write a letter explaining. Sometimes we have to do a peer-to-peer. The best case scenario is to be able to arrange something called a single case agreement. If we can show the insurance hey, this is where the patient is, this is what they've tried, this is why they're coming to me. This is what I can offer, this is the benefit to the patient, this is probably a benefit to you as an insurer and try to negotiate an agreeable case agreement for that surgery.

Speaker 2:

There's gap exceptions or out-of-network exceptions, which really are not all they're cracked up to be, but those can be negotiated as well in some cases. Most of the time it's really hard to get those through. We have to be able to really show clinically why you know how the in-network side has failed the patient and what the out-of-network doctor can provide that their in-network doctors can't provide. So we have to be able to show that to a reasonable person for them to make that decision. Touching on the gap or out-of-network exception a little bit, really all that does. You know, if a patient has, certainly they have in-network benefits. If they don't have out-of-network benefits, or if they do have out-of-network benefits, they can petition for the out-of-network care to be covered at in-network rates, where all that does I mean it puts the deductible into the in-network category.

Speaker 2:

But let's say, you know, if their in-network coverage is 80-20. So insurance covers 80%, the patient covers 20%. If they're out of network, coverage is 60-40. Instead of the patient covering 40% they're now responsible for 20%. But that only gets applied to what the insurance company considers usual and customary. So if an endometriosis surgeon charges, you know, $3,000 for an endometriosis surgery but the insurance only $3,000 for an endometriosis surgery, but the insurance only feels they should be in compensated 11, you know 1100, they're only going to apply that 20% to the 1100. And then the patient is still, you know, may still be responsible for the rest of that. So the gap exceptions are not really all they're cracked up to be. You know me as a provider. I would much. If we're going to negotiate anything, I'd much rather do a single case agreement just because patients get surprised that it's that usual and customary part that really comes back to surprise the patient.

Speaker 1:

I mean this highlights just how broken the system is in a lot of ways, especially when you consider insurance and the care for patients. But it's not all bad, because there are great things that I think could come from this as well. What do you have hope for moving forward for endometriosis and endometriosis care Front?

Speaker 2:

and center would really be clearly the informed consent type of stuff. Yeah, you know, doctors have varying opinions on treatments, on what they feel is appropriate to do and to offer on treatments, on what they feel is appropriate to do and to offer. But I don't think there is an argument from anyone or a reasonable argument to say that a patient should not have an informed consent and in that informed consent be presented with all the options, and I do think that there needs to be a higher degree of patient autonomy in that decision making. So, first and foremost, a focus on that, and I mean that's not only beneficial for the patient, right, that's also protective for the doctor, because you know we've already seen that in a case in the United Kingdom where doctors made the decisions for the patients for years and years and years and then she ended up, you know, having stage four disease, infertility, and then from a malpractice risk and negligence risk to the doctor.

Speaker 2:

lack of informed consent is huge, yeah, so I mean that's legal type of stuff, you know, in immediate care. I would love, love for that dynamic ultrasound to become standard.

Speaker 1:

Yes.

Speaker 2:

You know. And then if there's any questions or concerns beyond that, certainly MRI can be helpful, but just the ease, the immediate feedback, immediate knowledge that is gained and even if they have to send them to get a dynamic ultrasound to have that information ahead of time, certainly less expensive than an MRI.

Speaker 2:

Right to know, for the patient to understand what their risks are what's going on, for the surgeon not to go in blindly and be completely surprised and know beforehand hey, this is beyond my scope of practice, let's refer you somewhere. Or having the confidence that, hey, things look okay, I think we're going to be fine. With how I can treat this. That ultrasound, really from a triage standpoint, from an informed consent standpoint, would be incredibly helpful. Yeah. Beyond that, really looking at treatments, something more than just controlling symptoms.

Speaker 1:

Yes.

Speaker 2:

You know, in cancer care, most cancers some cancers are treated surgically, some are treated with chemo, some are treated with both, where they go in and remove as much of the disease as they can and then they use chemo to actually kill off the remainder of the cells.

Speaker 2:

The problem with endo is we don't have anything that will selectively kill off the remaining endometriosis cells. So you know, along those lines, if we can understand more about the genetics and the protein structure and receptor structure of endometriosis cells, if there's a way to find a commonality or somehow to take disease out and then test that disease for receptors like immunotherapies for cancers, where they could tailor a medicine directly to affect that particular patient's endometriosis, that would be huge. I think when we look at endometriosis treatments, that's where I would hope we could get. I know the databases that are being collected at UCLA and other places. I hope that's kind of one of the goals and one of the places that we'll end up. But that also requires there to be some commonality among types of endometriosis and I just don't know if we're going to see enough commonality to formulate something like that.

Speaker 1:

Yeah, I'm hopeful. Maybe one day we can all agree on a definition of endometriosis. I mean, I think that tends to be somewhat of the core of some of the misinformation and mismanagement of endometriosis.

Speaker 2:

I mean the definition is clear, but the you know the origins that sort of thing, and how it's described.

Speaker 2:

And the reason that becomes important is because that kind of dictates how doctors look at treating. You know, if we're taught and we believe that it's all from retrograde menstruation and we know retrograde menstruation happens, it's been documented, we know that it happens. The question question is does that cause seeding of endometriosis? And I don't know if we know the full answer to that, but if a doctor firmly believes that that's where the whole idea of performing hysterectomy to treat the disease comes into play, they figure. Well, if I remove the uterus, then the endometriosis can't come back. Well, a couple, a few problems. Number one, bringing common sense into a couple aspects. Endometriosis, by definition, occurs outside the uterus, right? So if I go in and remove the uterus, endometriosis is a cellular disease, right? Why do I expect that the endometriosis is just going to magically disappear? Because I took the uterus out? Or why is it going to? You know those cells are magically going to disappear because I took the ovaries out. They're not. The cells are still there and there is zero common sense in the recommendation to do the hysterectomy to treat endo. Now, hysterectomy can be helpful for other reasons. You know, if there's endo on the uterus, if there's endo, around the uterus, sacral ligaments to pull in. You know, doing hysterectomy can remove some of that. It can treat adeno, it can treat heavy bleeding, but endometriosis on the pelvic side while they're in the bowels it's not going to do anything for it like nothing, right, you know? And if I'm a doctor and telling my patient, well, we need to do hysterectomy to prevent retrograde menstruation.

Speaker 2:

Hysterectomy is a big procedure. Hysterectomy carries risks. It's an emotional burden on a patient. Sometimes it's an emotional burden difficult decision to make for a patient. If our goal is to stop retrograde menstruation, why not do a tubal, right? You know, a hysterectomy has bleeding risks. It has risks to the bladder, it has risks to nerve function, it has risks for infections. It has risk for vaginal cuff problems. Hysterectomy is anywhere from 45 minutes to an hour and a half or so. If I go in and do a tubal ligation, that's an outpatient 10, 15-minute procedure. I mean we used to do those in residency, sometimes without general anesthesia, just local numbing medicine and some sedation.

Speaker 2:

I mean, if your goal is to prevent retrograde menstruation, put some clips on the tubes. You don't need to do a full big hysterectomy removing the uterus and the ovaries. So there's a lot of stuff that just doesn't even make sense from a common sense view.

Speaker 1:

Yeah, as we wrap up, I do want to say this I think it's important that patients ask questions and don't go into a surgery because they think it will have a lasting effect or positive outcome.

Speaker 1:

If someone says we're going to do a hysterectomy, ask them. Why Don't ask them? Don't just expect that it's going to take away your pain. Why is it going to take away my pain? What is the purpose of this hysterectomy? What are the repercussions of having a hysterectomy? What can I look at in the future as an issue with a hysterectomy? Things like that. Those are questions that asking a provider and not just settling for you need a hysterectomy is going to help. You have that informed consent to make the best decision for your care, exactly. So. That's just my two cents on that. And I've seen it so many times where people tell me I am doing a hysterectomy and I'll ask them why, and they're like well, because I'm in so much pain. Okay, but why? Why are you having the hysterectomy Like? What is the purpose of it?

Speaker 2:

Yeah, and if there's endometriosis there, endometriosis first needs to be treated as its own disease, right, and there can be a consideration for hysterectomy. Again, what are the reasons? What do we expect to gain from that? Do we think that it'll be helpful, you know, and the patient gets to choose that, whether it's for bleeding, whether it's, you know, maybe abnormal type pain, but that should be kind of a secondary procedure consideration, separate from treating the endometriosis.

Speaker 1:

Yeah, this has all been a lot of really good information and something that I think many of us struggle with to kind of navigate our journeys as to how do we address not only endometriosis but insurance and informed consent. So thank you so much, Dr Arrington, for your time and for your wisdom and your passion to keep driving endometriosis care forward in making it better for patients, giving us a better quality of life. So thank you so much for doing that and for joining me today. You're welcome.

Speaker 2:

You know, and I don't want to completely vilify the insurance type of thing you know, certainly it's not perfect. But you know, if we look at, the biggest costs related to endometriosis surgery by far, by far, by far is the hospital cost.

Speaker 1:

Yes.

Speaker 2:

And the insurances do protect the patient against that. So you know, as they negotiate compensation with the hospital, you know the hospital may charge, you know $35,000, but the insurance is contracted a rate of say, 12,000. There's a huge financial protection for the patient. From the hospital side of things, the out-of-network provider still can be pretty significant depending on where they go. But by far the patients are protected against the biggest piece of the puzzle For sure. Certainly work that could be done.

Speaker 1:

Yeah, I agree, and I think that between the providers that are fighting for endometriosis care, like yourself, and patients and advocates, I think that we could make progress in this arena. It might take a really long time and hopefully we'll get there, but I think conversations are happening and I think that people are becoming more passionate about this particular topic and I think that's a good thing. To start talking about that more and questioning the insurance and questioning the standards and the guidelines, because it is a bigger issue than most people realize. It's not a simple they will or they won't take my insurance. It's much more complex than that.

Speaker 2:

So thank you. And one good thing we're seeing legislatively we're seeing some really good, strong voices.

Speaker 1:

Thank you for that. The other part of that too is like it. It makes a difference to be involved in your local and national level legislative pieces, because it does dictate a lot of care and how things are done. So paying attention to those things, paying attention to what's happening in endometriosis care women's care as well, because that endometriosis does get wrapped into women's care oftentimes, so, understanding that piece of it even though it's its own thing, we have to pay attention to the whole picture. So thanks for highlighting that too. But thank you again so much for your time and.

Speaker 2:

I'm glad we got to make this happen.

Speaker 1:

It was amazing.

Speaker 2:

That was a quick hour.

Speaker 1:

I know it does. It goes by fast when you're having good conversation. So until next time, everyone continue advocating for you and for those that you love.