Medical Advantage Podcast Ep 12: Treating Rare Disease Through Dedicated Care Management

by | Jun 9, 2021


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Effective and dedicated Care Management can be quite literally life changing. Celina Dusseau, Project Manager of In-Practice Technology Services, uncovers real patient stories who were strongly impacted by effective care management in our most recent podcast. Marcie Ward, Senior Clinical Consultant, and Jonathan Broek, Care Manager, join the discussion to highlight the need for dedicated care management on a broader, population health scale. 

This is the twelfth episode in the Medical Advantage Podcast, where we take time each episode to discuss the ideas and technologies changing healthcare, and the best practices your organization can take to stay productive and profitable. Subscribe wherever you get your podcasts to ensure you never miss an episode.  

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Full Episode Transcript

Medical Advantage Podcast: Welcome to the Medical Advantage podcast, where you can hear healthcare professionals, expert consultants, and industry thought leaders discuss the exciting new ideas and technologies that are changing the business of healthcare. Tune in to each episode as we hear from some of the most innovative minds in medicine about the future of healthcare and how your organization can stay profitable, efficient, and on top of industry best practices.

Celina DeFigueiredo-Dusseau: Hello everyone and welcome back to the Medical Advantage podcast series. As always, I’m your host Celina Dusseau, and today I’m very excited to discuss one of the most important topics in healthcare that is care management. As healthcare is continuing to evolve, so has the way that we use technology to improve patient outcomes and reduce disparities in access to care.

Care management is one invaluable tool care providers can use to do that through the use of various engagement methods that keep patients on track with medication adherence, preventative care, and other aspects of the treatment regimen. Now, of course, while care management is a powerful tool to improve outcomes across populations, it’s also important to remember that there is a human face behind each number, statistic and percentage point. For many patients, effective care management strategies can quite literally be life changing. That was the case with one young woman whose encounter with a Medical Advantage care manager changed her life. Here with us today to talk more about her story are Medical Advantage’s very own Marcie Ward and John Broek.

Marcie and John, thank you so much for joining us today. Would you two like to start by sharing a little bit about yourselves and your roles here at Medical Advantage?

Marcie Ward: Sure. Thanks Celina and thanks so much for having us on today. My name is Marcie Ward and I am a Senior Clinical Consultant here at Medical Advantage and I’ve been with Medical Advantage a little over four years. Most of that time has been in the role of a care manager and as well leading a team of care managers in various care management projects. So John and I started out together as care managers and we worked closely together in a pediatric practice and in those early days I’m sure you remember them John, no one really understood what care management was. Let alone believed in it and we were very much like pioneers. That’s what we called ourselves and We had to prove our words We had to win the physician’s respect and gain the acceptance of the staff while at the same time we worked with the most difficult patients because, they really didn’t trust us or understand what we were doing, and I think sometimes they gave us the hardest patients because they didn’t really believe that those patients could change, they had given up on them, and maybe they thought, well, they really can’t hurt anything here.

So that’s what we started with and it was really rough in the beginning and the wins were few and far between. The one thing that kept us going were the patients. We felt that if we could make even the, the tiniest difference in their lives, the hard work was worth it. I’ll let John introduce himself.

Jonathan Broek: I am John Brooke. I’m a clinical consultant for Medical Advantage. My background is in dietetics. I’m a dietitian and to what Marcie had said, we first kind of got started four or five years ago. I started about that same time and just traveling all over. The Genesee County area hitting up different practices that was attached to provide nutrition counseling for a couple of patients. I’ve also done kind of everything and anything in different capacities, different projects, different grant based as well as the PMC ACO providing nutrition counseling and hospital discharge follow up calls and a lot of other consultant type work for different projects. Regarding this particular patient that we’re going to go into, it’s, it is one of those patients where it was a difficult patient, you know, very difficult situation that, hey, let’s just give it a shot. Let’s get us, someone else to tap into what’s going on and see can something be done and in this case, thankfully, something was done.

Celina DeFigueiredo-Dusseau: Fantastic. Thank you both. You have such a wealth of knowledge and had such an incredible experience with this particular patient. I’m very much looking forward to how you came into this case and how are you able to achieve success with this particular patient?

Marcie Ward: I first heard about Janice when I was asked to capture her story for a blog article, and we thought that this was a perfect example of our work here at Medical Advantage with Care Management and as John shared his story with me. I was immediately reminded of the privilege we have as care managers to enter a patient’s life and sometimes we enter when they’re in a crisis situation when there has been some dramatic change in their health like a heart attack or a stroke and the steps to take are clear and the results are dramatic and noticeable, but most often we enter in the day to day struggle of their chronic condition and where the answers are not always so clear and it’s usually like one step forward and two steps backward and the patient’s discouraged. It’s here where we usually journey with the patient and John and Janice’s story is a perfect example of this.

Celina DeFigueiredo-Dusseau: Thank you. Yeah, care management is definitely something that touches people and has a positive impact in so many ways. And today we’re really looking forward to walking through that journey of Janice. That really says a lot about how powerful care management can be. Before we get into her story today, I do just want to make a note to our listeners that this patient’s name has been changed to protect her privacy. So with that, John and Marcie, why don’t you tell us just a little bit about Janice and her story?

Marcie Ward: Sure. Celina, I’m going to let John tell this story because he was right there and knows it so well.

Jonathan Broek: This patient story is a patient story that I will never forget for the rest of my life, because of how it seemed on paper, this patient just didn’t seem very complicated on paper. But as the years progressed and I dealt with this patient for a couple of years and across that, I mean, it just become more complex and more than I ever expected it to ever be. To give a background of the patient she, at that time in 2017, 2018, we got connected because she, at that point, was about 550 ish pounds at the age of like 33. At that point, and the care manager that was embedded in the, in the actual practice was trying to get her into nutrition counseling because of her weight. So, my bread and butter of care management, weight management and the gazette on paper didn’t seem very complicated, but then once the conversation started, and I actually met with patients, you in and over the years, you get that patient to trust you and you build that trust between you and that patient. Then you realize just how much more complicated and how much more there is to the story.

So we first really got going in the beginning of 2018, when she was okay with really putting effort, putting time into all right, let’s look at your eating , and your activity and getting a little more say as to what really goes on in her day to day life.

So she’s 33, she’s about 550 pounds and she came to me several years after having bariatric surgery. So she was probably in her late 20s when she had bariatric surgery. She was about 650 pounds and then lost about 150 ish, close to that, 150 pounds from the bariatric surgery. But unfortunately because she was younger and then had this massive weight loss, she then wanted to become pregnant so the pregnancy, , was super great and it was awesome for her and she was super happy. But then that all allowed for weight gain to come back and she gained about 100 ish pounds more from after delivery. So she got right back to where she was, continued to struggle, she did all the things that she’s supposed to, take her vitamins and Eat well and and all these things were happening. She was doing exactly what I was really trying to have her do, alter eating, do some more activity, but she just kept hitting a wall and struggling. So then we would look to the next thing. All right, we’re looking at eating looking at activity All right. Now we’re going to look at we know, you know from previous conversations that her mental health was not being addressed appropriately, and she was probably altering and maybe even kind of fibbing on her reading diary which ended up being true. She was dealing with depression, anxiety, and suicidal thoughts and that was never being touched on. She wasn’t really speaking to a doctor, she wasn’t speaking to a therapist, so then we addressed that, we got that squared away, and then she went right back where we were to the eating activity and after months and months of that happening nothing was happening.

There was no change and in my mind sure she’s has a lot to lose and it’ll be very difficult, But if you’re doing exactly what she’s saying she’s doing and putting all this effort there should be some budge, but they’re just wasn’t. At that point, I was like, Oh my gosh, you know there’s something that’s wrong and it’s something that I need to do or I want to do, but I just don’t know what to do. Over weeks and weeks I thought about it and I came to just Googling one day and came across the U of M, University of Michigan has a pedal block clinic. I was like, all right, well, let’s just refer her over because, I have my hands up, I’m not giving up on her for anything, but I think someone else needs to look at this because I just had in the back of my mind, I told her over and over again, there’s something special about you and we laughed about that. So I pushed her to and myself and her her provider to, or encourage the provider to send her over to the juvenile mental health clinic. Just to see what can they find. That was somewhere in 2018 and then the summer of 19, it takes forever, of course, to get these kinds of clinics.

So summer of 2019 , she got into the clinic, and was assessed. Which, in the beginning, the assessment really didn’t provide a whole lot. It kind of toyed with different ideas of, we need to get you back on your vitamin, mineral supplementation from the bariatric. We might talk about revising your bariatric surgery. But still, it just wasn’t there. There was still something just underlying, and I think everyone knew it, but still just didn’t know. Then, fast forward, that was like summer 2019, and then towards the end of 2019, like November, December, As part of that process, part of being in the clinic, they do genetic testing. I got a call from her at that time, after genetic testing was done, and she said, Hey, I’m not sure what to think, but they told me that I have this extremely rare genetic defect. I don’t even know the name of it, I couldn’t even remember. They really didn’t have much information because it was just so unknown.

There’s just wasn’t much information on it and I was like, well, okay, let’s take it one step at a time. Let’s take the information and then you’re going to hear back in a couple of weeks to get a little more information and we’ll just keep, going at it step at a time, step at a time and then fast forward a couple months later, she really gets as much information as she can and she finds out that she has this. It’s extremely rare genetic defect called SH2B1, and that defect directly affects her appetite and how she metabolizes fat. I was like, boom, like I know this was what was underlying the entire time , I get a little emotional actually, thinking about it because she spent. Her whole life being judged, being criticized, being, like let’s just change reading. Let’s just act, you know, let’s just cut calories. Let’s just keep altering this and to make the change but like, it is not doing it, like there’s something more. So thankfully that like little intuition that there was something more, you know, she trusted the end course and trusted her provider to send her over and now she knows that she has extremely rare. Defect and with this defect, across the globe, there is no known true data of like, only patients truly have it. All I know is from what she has said, what she’s been told, is that there’s about 15 people, whether that’s in the United States or the world. But from my research, it sounds like that honestly is the world. Across the globe, it seems like there’s about only 15 ish people and the role known to have this defect in Benson, Michigan. It’s crazy that happened and then with those findings, you know, the greatest part about this, not even just knowing that she has a rare condition as what’s causing her extreme weight is now that she was able to get into this research study, this research study had kind of already been going on.

This medication, it’s an injectable medication called set one on time and. They allow this defect, this HH two B one defect to be in this research study so she can use this injectable medication that can help change and alter how she processes her food and her body the fat and the appetite and so forth. For free all this for free so she gets to go to U of M, the travel, the medication, all the supplies, the food, the studies, the labs, everything for free forever, essentially right now, you know, she had to go through a research trial. You do it for, 30 to 90 days.

I can’t remember the exact timeframe, but as long as you lose 15, 20 pounds. Then you get to move on to the long term phase and within that three months of participating in that trial, she lost 30 pounds, like the most she’s lost in years from this medication and pretty much no side effect except it tans her skin.

So the only side effect of this is injectable medication is that you get a really nice tan. So it’s really great. It’s free, gives you a TAN, and she gets to appropriately lose the weight that she has been looking for forever. So now she’s in this phase where she is now moved into this long term phase, and I’m not totally sure but sounds like, you know, as long as the research study’s there, she gets to continue this for free and then, lastly, on top of that, one of the best parts about it, Is that the entire time she talked about. I just want to get on , a stage or some sort of format like Facebook and create this page for those that deal with such excessive weight. I’m like, how do you really just manage yourself and your emotions and all the issues you deal with? Part of being in U of M’s metabolic clinic and its research study, This year, February, 2021, U of M had a world rare disease conference, and they had a little panel where they got to speak with it was all virtual, of course, they had a few patients that have had these rare conditions, and she got to speak at this across the globe, worldwide, rare disease conference, so people from London, from Germany, all over the world got to hear her story, and what she’d been dealing with, how more big of a stage can you get.

 So from all of that, it just started from a basic referral to a patient that has an extremely rare disease you just don’t know at the time that’s going to be as complex as it is, but if you give the time and you allow the patient to trust you and you trust her.

Celina DeFigueiredo-Dusseau: That is so incredible John, congratulations to you for working through that with her. There’s such an incredible and uplifting story and really a true testament to viewing patients holistically and building that trusting relationship. It’s individual experiences like that, that really show the importance of proper engaged care management. When you zoom in to see the benefits of each individual case. It’s just incredible and so now to put all of this into context, why don’t we zoom out just a little bit? This, this is one incredible patient example, but let’s zoom out a little and talk about the need for care management on a broader population health scale. Who can enroll in a care management program and how, what does this process look like in today’s healthcare system?

Marcie Ward: Currently to enrolling a care management program, your insurance or your health plan has to cover the cost, which it’s becoming more and more of a popular idea because they’re seeing the benefits and if you think about how busy a physician or a practice, how busy they are day to day, they really don’t have time to check up on all these patients and that’s what we do as care managers. We just make sure that they’re not falling through the cracks. I mean, just looking at the statistics, you can see what they need is huge. But then to enroll in care management maybe is a little trickier because of course your health plan does have to cover it. Many of them do, as I said, and then many of them have care managers on staff. That you can reach out to, or will reach out to you as a patient to check on you to see how things are going with your chronic conditions and where should patients look for help? I would start by calling your health plan to see if. If they cover it, and then if they do you can connect with one of those care managers or see if your practice has a care manager because many practices now do have their own care managers.

Celina DeFigueiredo-Dusseau: That’s fantastic, Marcie, and of course there are many resources out there, but this is a portion of what Medical Advantage does offer.

Can you speak just a little bit to the, the services that you provide and some of the support that you’re able to provide? to patients and connecting them with resources?

Marcie Ward: Yeah, typically what we do is we help them understand the complexity of their chronic condition and that their lifestyle and bad habits, maybe that we don’t call them bad habits, but You know, just their the habits they grew up with are the habits they developed along the way we help them understand how that is contributing to their chronic condition and we work on creating goals with them helping them with a few lifestyle interventions and teaching them to be their own advocate and take charge of their own health.

I think that’s the part that’s most exciting. To me is when you can engage them in like they’re the leader. We never push. We help them see what needs to change. We help them kind of view it from a different lens. But we believe in them and they, they know that that when we believe in them. Then they start to believe in themselves and they start, they start, um, engaging and managing their own health.

And when you see that transformation, I think that’s the most exciting part of care management.

Celina DeFigueiredo-Dusseau: That is fantastic, Marcie. You and your entire team should be very, very proud of the work that you do. I know us across the company are very proud of the work that you do and just your ability to really holistically view the patients and work with physicians to really align patient needs and lifestyle to services that will really ultimately have a gigantic impact on their health outcomes.

John, is there anything that you wanted to add to that?

Jonathan Broek: I think a really important piece of management and I think in healthcare now and somewhat for sure in the future is that resource and having a better understanding of all the resources that are available in your area. And that could be things you’re not well aware of.

And that’s where care management is very important because the care manager can Work on behalf of a patient to find and sometimes on the box, you know, resources that can be helpful for them. So addressing social determinants of health, social barriers to bring them to a place where, the position manager can’t do it all. There’s gotta be sometimes there’s a lot of other resources out there that can bring them to where they need to be to push them forward.

Celina DeFigueiredo-Dusseau: Thank you, John and thank you both for all of the information that you’ve provided today and sharing a little bit about the amazing work that you do. Before we start to wrap up for today, do you have any tips or last bits of advice for our listeners today?

Jonathan Broek: Yeah, I know that Medical Advantage offers a full suite of Care management services from program assessment and consultation to recruiting and training support to full service implementation, offering highly customized services to standard delivery of services, like the Medicare, chronic care management and report patient monitoring. There’s other avenues versus just like direct patient care management. There’s also those additional services that can help elevate. What’s already there.

Celina DeFigueiredo-Dusseau: Thank you, John. Marcie. This has been incredibly informative and obviously very relevant to many of the practices that we work with every day. This is such a great opportunity to help ease many barriers to care while truly improving efficiency and care management and efficacy in care management. For any of our listeners today seeking more information, I would like to invite our audience to find us on LinkedIn and Facebook or our website where you’ll find additional resources such as blogs, webinars, white papers, and much more and should you have any questions or wish to speak with us in more detail, you can also reach us directly via email at Thank you again, John and Marcie for your time today and thank you always to our audience for listening. See you next time.

Medical Advantage Podcast: Thanks for joining us this week on the Medical Advantage Podcast where we discuss the ideas and technologies changing healthcare and what they mean to your organization. For more information, visit us at and make sure to subscribe to the podcast on iTunes, Spotify, or wherever you get your podcast, so you never miss a show. 

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