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Podcast, Provider Interviews

Tips for Making Difficult Medical Decisions, with Rheumatology Nurse Practitioner Kori Dewing

May 24, 2022
71 min read
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Summary:

On episode 70 of the Arthritis Life Podcast, Rheumatology Nurse Practitioner Kori Dewing, ARNP shares her tips from over two decades helping patients navigate complex medical decisions. She also delineates the role and scope of practice of advanced registered nurse practitioners on the rheumatology team.

Kori and Cheryl discuss ways to approach assessing the risks versus benefits of medications from the “shared decision making” model. They also explore how insurance barriers in the United States can make medication decisions all the more complex. Kori shares her tips for getting prescription medication support, as well as her words of wisdom for diagnosed patients.  The conversation concludes with a discussion of the latest research developments Kori is most excited about in the world of rheumatology.

Episode at a glance:

  • What is an Advanced Registered Nurse Practitioner (ARNP)? What is the role of the nurse practitioner on the rheumatology team?
  • Tips for making medical decisions: Kori explains how she helps her patients assess the risks of treating (like medication side effects) versus the risks of undertreating (like disease progression). She also explains the meaning of “shared decision making” and why it’s so important in chronic illnesses and rheumatic diseases like rheumatoid arthritis.
  • What to do if you have insurance barriers to medication: Kori discusses insurance barriers and gives tips including copay cards, patient assistance programs, ways to proactively research medication costs, and what the deal is with prior authorizations and specialty pharmacies
  • Advocacy: Cheryl and Kori discuss how patients can support reforms to healthcare through sharing their stories
  • Newly Diagnosed: Kori’s words of wisdom for newly diagnosed patients
  • Latest research developments: What recent innovations in the field of rheumatology Kori is most excited about?

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, a community support & education program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Join the waitlist for the next group, which starts in September 2022!

Rheumatoid Arthritis Roadmap, a self-paced online course Cheryl created that teaches you how to confidently manage your physical, social and emotional life with rheumatoid arthritis. 

Speaker Bios:

Kori Dewing, ARNP

Dr. Dewing is a board-certified adult nurse practitioner. She has been practicing in rheumatology since 2003.  Dr. Dewing enjoys teaching patients about their chronic conditions, allowing them to better make informed and partnered decisions about their care.  Dr. Dewing’s clinical interests include adult rheumatology and osteoporosis. In her free time, Dr. Dewing enjoys spending time with her family, camping, paddle boarding, hiking, and painting with her daughter.

Cheryl Crow, MOT, OTR/L

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Episode links:

Full Episode Transcript:

Cheryl Crow:

I’m so excited today to have Kori Dewing with me. Welcome. Thank you so much for coming on the podcast.

Kori Dewing:

Thank you. I’m thrilled to be here today.

Cheryl Crow:

Awesome. Can you just let the audience know real quick, a few basic information, pieces of information about you, like where you live and what is your relationship to the arthritis community?

Kori Dewing:

Yes. Well, Cheryl, as you know, I am from Washington I’m nearby. I actually am a rheumatology nurse practitioner. I’ve been doing this almost 20 years now. I actually live north of the city. I am currently employed at the university of Washington. I teach in the doctoral program for the nurse practitioners and I also have a clinical practice at the Seattle arthritis clinic. My, my, my introduction to rheumatology was that while I was finishing my master’s way back when I had one of my professors was involved in rheumatology and that’s where my research was heading. Additionally I have a mother with rheumatoid arthritis. She’s had it for many, many years. And so, whereas for many people, the immunology and the science and the medications and all the complexity of rheumatology was very intimidating to them. For me, it wasn’t, it felt comfortable. It felt like home. And so when a position became available that had other nurse practitioners in the practice, I jumped at it and that’s where I started. And I’ve been here ever since.

Cheryl Crow:

Oh, that’s incredible. And you know, before we go further, I do wanna address your profession in general, because I think there is a lot of confusion. There’s so many different kinds of nursing out there in different degrees. So can you tell me, what does it mean to be an a nurse practitioner and when you see the , like when I, as a patient, see the designation A R N P what does that mean?

Kori Dewing:

Right. So that is absolutely confusing. So R N P stands for advanced rheumatology or sorry, advanced <laugh> advanced registered nurse practitioner. Yes. and in our state in Washington state, that is our official licensure designation and it varies state to state. So sometimes you see it simplified just as NP because that’s classically what we’re known as a nurse practitioner. Additionally our, our degrees differ a little bit as well, so I have a master’s degree in nursing. And then I went back when it became, when it, when the degree, the doctor of nursing practice DNP became an available option and received my doctorate degree. It’s confusing for patients. I think this is a big question that always comes up. Do, should they call me doctor Dewing, should they call me nurse Dewing, should they call, what should they call me?

Kori Dewing:

And, you know, typically I, I like to be called just, just Kori. And in fact for this communication, you and I know each other on a first name basis, and that’s by far the easiest and the most comfortable for me. I don’t have to correct patients if they call me Dr. Dewing, but I typically do just so that they know that I am a nurse practitioner. When I teach, when I lecture, sometimes I’m referred to as Dr. Dewing, and that’s fine, but I’m most comfortable with Kori. And I think that most nurse practitioners feel the same way about that.

Cheryl Crow:

That’s, that’s really helpful to hear, because, I mean, even, you might be surprised to hear this, but in the occupational therapy world and physical therapy world, there is a lot of, there are a lot of different opinions about, you know, whether if you have a clinical doctorate, ’cause you can have a clinical doctorate in occupational therapy and it’s actually the entry level position for physical therapist is D P T now doctorate physical therapy. But I personally, I don’t, I think it can be confusing to patients to if everyone suddenly using the word doctor. I mean, you should be recognized, I think academically, like you said, I think that makes perfect sense. But I think especially like in the fields where we are not licensed to do anything that that overlaps with the medical doctors versus for a N P it is it’s even more murky because at least in, in Washington state you as an a R N P advanced, you know, registered nurse practitioner, you can prescribe, diagnose right. An app.

Kori Dewing:

Yeah. Yeah. We’re fully autonomous in the state of Washington. We don’t practice under a physician’s license. So there is that question. And typically, you know, I leave it up to individual nurse practitioners and what they wanna do and what their practice is like. But absolutely recognizing the fact that, you know, we have these degrees is important. Because as you know, we’ve spent a lot of time, a lot of years in our education preparing ourselves, plus our practice before nurse practitioners go back to school, they have years and years of nursing under their belt as well. Yeah,

Cheryl Crow:

Yeah. AB absolutely. My sister is a NICU nurse right now going wow. And studying further. So yeah, I know. Yeah, I have the utmost respect for, for everyone in the nursing profession and just, just to be really clear in the rheumatology setting, mm-hmm <affirmative> you know, what is the nurse rheumatology nurse practitioners role and what are some things you want patients to know about what you do?

Kori Dewing:

Well, you know, it’s interesting what we know about the care of patients who have rheumatologic conditions. We know that that interdisciplinary care or interprofessional care or care of the full team is what really does help to get the best outcomes. It’s not just one person dictating, this is what you do. And that’s, it, it’s much more complex than that. And, and you out of anybody has a, has a, has the best understanding of the complexity of that. So as nurse practitioners, I play a part as one of those team members. I I’m there just, again, as needed. I, I have the ability to do a number of different things. And my job, my role varies day to day has varied in the different positions I’ve held as well. But, but just know that, you know, we, we have the ability to prescribe you your medications to order lab, to order to order imaging as needed to interpret those tests, to help you understand what they mean to help you make decisions about your, your treatment, to understand your disease. You know, ultimately at the core where nurses that patient education is truly what drives us and, and helping patients to really understand their conditions and diseases is what makes our day

Cheryl Crow:

That’s. That’s wonderful and like music to my ears, of course. And are the, like, are the appointments structured if you were my you know, nurse practitioner mm-hmm <affirmative>, that was my primary rheumatology. Would you act in the same way as my like rheumatologist currently acts in the sense, like mm-hmm, <affirmative> everything you just said is kind of what my rheumatologist does. Do you have the same length of visits or do you get longer? Do people get longer with you?

Kori Dewing:

I, you know, I wish I would love to be able to say that they get longer with us. And certainly in some of my prior positions, that’s been the case. I think it really just depends different different physicians have set up different schedules for themselves. They may have certain lengths of visits for, for them, which may be different than the colleagues that they work with. And I think the same can be said for nurse practitioners. You know, I have a lot of flexibility in my scheduling, which is fantastic, but unfortunately with the workforce shortages that we are running into, I’m becoming much more busy than I ever have been in the past too, which limits my availability. I wish I could be there in an unlimited amount of time to work with patients.

Cheryl Crow:

Well, and that’s one of my talking points for why we need multidisciplinary teams because, you know, the average, I mean, this is good not to be I’m selling occupational therapy, but you know, our visits are usually 50 to 55 minutes and that’s just the default, right. And it’s shorter, like in acute care, sorry, I just hit my microphone in acute care. It will be shorter, you know, 15 ’cause the patient may not be able to have a stamina to do a longer appointment, but typical like outpatient, you know, if you’re coming in for fabricating a splint or getting patient education and support for activity pacing and you know, adaptations and life hacks, you know, we have a, almost a full hour. So you know, and the same with physical therapists. So again, just knowing that there are other professions, I know a passion both of us have is like making sure people know that you don’t, you don’t have to manage everything on your own, you know, <laugh>

Kori Dewing:

Yeah. And if you’ve left an appointment and there’s still questions that remain, there are other people out there as part of your care team who can help maybe approach it in a different way to answer your questions.

Cheryl Crow:

Yeah. Yeah. And speaking of that question, yes. One of the things we tend to have, or, you know, I’m speaking again, both as a patient and a provider, I think one of the hardest things it is just making decisions like making medical decisions. Okay. So speaking of that, like one of the hardest things for me has as a patient has been making difficult medical decisions or even just weighing the pros and cons because it seems like sometimes the pros and cons of different treatments are almost like endless. Like it’s almost like a choose your own adventure, but you don’t know what’s gonna happen. Right. So you’re like turn to page 13, know if I have a side effect of methotrexate or, you know, and so you know, yeah, the first, the first thing most people struggle with when it comes to, you know, managing rheumatic disease is when it comes to difficult decisions is the medications. So how do you help people assess like risks of, for example, taking the medication versus the risks of untreated disease or undertreated disease.

Kori Dewing:

Right. You know, it, that is, that is the struggle. That’s, that’s the hardest thing. But also the most fulfilling thing about what I do shared decision making is an important part of rheumatology practices. Patients need to truly understand their disease and the treatment options that are put forward to them, but it is complex. It would be the most complex choose your own adventure book that you could ever imagine. Right. When I started in rheumatology 20 years ago, we had three biologics and they were all on the same category of medications and that’s really what we had. And then we had some, you know, regular or we had the, the disease modifying drugs that we could kind of add in. It was a cocktail, so to speak of different things for each person, but it was not nearly as complex. And there were not nearly as many options as there are now available for our patients.

Kori Dewing:

So I guess, I mean, there’s so many things that we could talk about here. I guess the, the, one of the most important things to think about is, is what questions we as providers need to get answers to so that we can help you determine which medication might be best for you. So when you see a rheumatologist or a rheumatology nurse practitioner, and you’re preparing for that visit some of the things that you should think about beforehand would be make sure that we have your most up to date medication list including any supplements that you might be taking. And most importantly, not just how they’re prescribed, but how they’re being taken. Also you may want to make sure that we know your full family history because that may impact risks of different therapies. We need to know your past medical history, thoroughly, including any surgeries you’ve had or, you know, even anything that’s happened between the visits from the time that we saw you last till now we need your updated labs.

Kori Dewing:

We need any imaging that’s been done recently. All of these things go into us understanding which medication may be the best for you. There’s, there’s some great forms that have been put out by the national Institute of health, by the national Institute on aging. And I think I talked to you about these forms. They’re just a great guideline they’re worksheets and you can find it on their website that www.i.nih.gov slash health slash T w Y D dash worksheets. So one is family history. Another is a place for you to document what questions to talk to your doctor provider about and some ideas about what types of questions you should be asking a place to document, any changes that have happened since your last visit.

Cheryl Crow:

That’s so gr I’m definitely gonna put a link to that in the show

Kori Dewing:

Notes. Yeah, absolutely. I mean, concerns you may have and then medications, and these are forms. I don’t know that I necessarily would recommend them for every patient, but it’s a great way to think about how you’re approaching your visit. Specifically when we talk about how to, to advocate for yourself, when you’re thinking about which medications are options, you want to make sure that you do a little bit of homework beforehand you may want to, you may know, going into the visit, what therapy your provider may be thinking of would be the next step. And looking at that medication, what questions do you have about it? You know, we as providers, there are clinical practice guidelines that are out there that have been written by the American college of rheumatology that helps us to kind of take into consideration disease activity, as well as any comorbidities that may impact which choice that we may have for a patient for therapy. So we use that, but there are so many other variables that go into play. So I’m gonna shoot it back to you, Cheryl, so that you can ask me a specific question cause I could go on all

Cheryl Crow:

Day. Yeah, no, I just thought of a a follow up question as you were talking there. Well, fir okay. First of all, when I shared my face sheet, my which is what I used as my like condensed medical history to share with like a brand new provider or new provider to me, mm-hmm <affirmative> I, a lot of people said, wait a minute, like, aren’t you going to, if, if I brought that to my doctor, my doctor would think I was like a hyper contract or like I’m too extra. Like I think there’s this feeling sometimes with this fear, because so many of us with autoimmune diseases were treated like hypochondriacs or like you’re not really sick. You’re just anxious that if I bring like this notebook of information, they’re gonna just think, oh, she’s too much. Or they don’t actually want that information. What would you say to that?

Kori Dewing:

I would say having that information at your fingertips is, is very important because how many times have I started asking a question? You know, even if you asked me when, what, what year was it that you had that shoulder surgery? I, I, I honestly can’t tell you on the top of my head, but I could check into my notebook into my papers and find that out for some people having that information in one place is, is great because we can nowadays with our electronic medical record, we can scan that into our system and we can have that available to us if there are questions that come up. But, but knowing all the work that goes into preparing that, that information really makes you your best advocate, whether or not you share it with your provider, you have it at your fingertips, which is important.

Cheryl Crow:

I love that. Thank you. And that’s, that’s how I feel, you know, and if the provider isn’t going to receive it, then they, maybe they’re not the right fit for you either. And they may, you know, they may, you, we don’t want as patients be presumptuous that like providers have all the time in the world to look at all of our detailed records. But if you know the knowledge is power and it’s good to like have a handle on your own past, you know, history and past records.

Kori Dewing:

Absolutely.

Cheryl Crow:

Yeah. And the next thing that I wanted to ask you about that I’ve seen a lot of conversations about is and also just, sorry, it’s something that I’ve also observed on social media is that it assessing the risk of medication side effects is something where a lot of people tend to exclusively focus on the negative possibilities and not the benefits, which is so interesting to me because even though I have like a diagnosed anxiety disorder and I tend to be very, you know, nervous and anxious about my health, when it came to the medications for rheumatoid arthritis, there was no hesitation. Like, and that’s, this was exactly, you said 20 years ago. So it was 19 years ago for me, but it was like, I guess my under just self psychoanalyzing myself. I think the, I think the reason for that was that I was, I had been taken not seriously for so long.

Cheryl Crow:

I had been medically gaslit in a way, you know, to say, you’re not sick, you’re not sick. And all of a sudden the rheumatologist believed me and said, yes, you are sick. And actually this is a really serious disease. And, you know, potentially like taking years off your life, if we don’t get under control and these medicines are amazing. And like we, yes, there’s some potential side effects, but we think this is the best option for you to get your disease under control. And I was like, sign me up, give it to me now. Like, you know, but I know from that is not the potentially the norm, right?

Cheryl Crow:

So how do you walk people through, like, what I always tell people is like, you have to look at the bene or the potential of the disease not being controlled. That’s a risk too, right? Um but again, that’s not my, my, that’s not my role as an occupational therapist to say that. I’m just saying on social media, when we all, you know, the patients kind of like give each other, our 2 cents, you know? So anyway, sorry, out of all that rambling, how do you help people walk through that?

Kori Dewing:

I mean, there’s so much there. So what I would say is that patients with rheumatoid arthritis, for example, those are some of the toughest people I have ever met. They’re dealing with their chronic disease on a daily basis and they’ve made accommodations and they’ve learned how to live with their disease. So sometimes it’s very hard for them to think past the fact that they are functioning. They are okay. But what if they are that person that has that side effect or risk, and they’ve gotten themselves into a situation where they, they do poorly, they that’s the unknown, they have the known right now. They just don’t have the unknown. So that can be a struggle that I see in a lot of our patients. Also the idea of undertreatment this is something that’s not understood because for many patients, like I said, they’re functioning, they’re barely functioning.

Kori Dewing:

They’re not feeling well, but they’re functioning. And they don’t understand that there may be ongoing, underlying inflammation that’s affecting other parts of their body, not just their joints, for example, that the inflammation is systemic or affecting all parts of their body. And the implications of that in the long term, which could result in a reduced lifespan, could re result in, you know, decreased quality of life. And it could cause impairments or issues with respect to their joints that we can’t fix later on.

Kori Dewing:

So that’s important to consider as well. You know, we as providers, we’re not given crystal balls during training. We don’t know what’s going to happen to a patient if they don’t get the medications that we are prescribing. And we think that are best, or if their disease goes unchanged or UN undertreated. But, but we do, we do look at various, I guess, variables to understand who needs, which medications and which medications might be best for which people you know, another way I, I like to think of this is sometimes it’s a matter of saying, well, by, by agreeing to try this medication, this is a trial, this is a, you know, let’s give it three months.

Kori Dewing:

Let’s see what happens. And you know, if at the end of the three months, you’re not feeling any better, you’re not feeling an improvement. Then we know that either this is not the, for you or this isn’t, this isn’t worth continuing. But, but by saying yes to something, that’s not committing you to a lifetime on this medication. Yeah. And sometimes that’s the step that people need to hear.

Cheryl Crow:

It’s like our friend, you, I know, you know her more than I do, but Christine said, you know, it’s like dating. Think about a new medication as like dating and not marriage, you know,? Which I thought was great, you know, and it’s, it’s still like, I wanna validate anyone and everyone who is scared to start a medication. Cause I understand, you know, in a way I think I was so – I was in such a low state. You know, I had lost 25 pounds on an 130 pound frame from, you know, severe, what I know now is like rheumatoid cachexia you know? I was a college athlete who couldn’t then suddenly, or not suddenly slowly over a year, couldn’t open a can of, or container of milk. Not can I dunno, what’s wrong with me? Like I, you know, I mean, it was like, I was desperate, you know, whereas I think you put it perfectly.

Cheryl Crow:

There’s a lot of people who’ve learned to function and quote unquote, you know, our society teaches you to push through the pain and just grin and bear it and I, you know I did have that conversation with my provider at one point where, you know one of my initial biologic had stopped working and then I, but I was like, you know, I don’t mind this level of pain.

Cheryl Crow:

It’s just, it’s noticeable, but it’s not interfering with my function, but she had to have that exact conversation with me saying, it’s not just – the question isn’t like a, like an orthopedic injury where you’re like, is this pain? Am I able to push through or functional with this pain? It’s that this pain is a signal of an ongoing systemic inflammation, like you said, it’s affecting your heart and your lungs. And my understanding is that the reason that lifespan for rheumatoid arthritis historically was like approximately seven years less than the average person is due to the cardiovascular effects of the inflammation. So it’s not even about how your joints feel. It’s the fact that your heart doesn’t like, you know, this amount of,uof inflammation. So understanding those bigger things.

Cheryl Crow:

It’s hard. I think it’s hard because you know, it’s an invisible condition and we, on the one hand, I think this is just me spit balling <laugh> about my own self, but it’s like, it’s this weird thing where half the time, I feel like I’m like fighting for people to recognize it and acknowledge it. And then the other half of the time, I’m like, it’s not that bad. Like minimizing it to myself from like a sense of denial, you know? Right. So it’s just, it, like you said, it’s complex

Kori Dewing:

<Laugh>. And I think sometimes patients come to us and they see our level of enthusiasm about these medications. And they don’t understand that we, we almost look like we’re trying to sell something. Why are they so excited about me taking this medication? When in reality, we are very serious and, and about the side effects and risks and trying to mitigate those. But we’ve also seen the other side of it. You know, especially for some of us who’ve been in this for a long time and were practicing before the advent of biologics, we saw patients visit to visit becoming more and more disabled and not being able to do anything about it. And then all of a sudden these medications were developed and now we can put people into medical remission, they can live normal lives. We can prevent the destruction of joints. I mean, that’s huge. That’s the enthusiasm that you see. It’s not that we, we, you know, we’re not trying to sell you anything. We really just want our patients to have the best chance of leading a normal life.

Cheryl Crow:

I, I love that. And I, I have a whole episode called like, “Can you live a normal life with rheumatoid arthritis?” Where, I mean, we delve into we, me, myself and I <laugh> delve into what does it even mean to have a normal life, you know? Cause you know, a lot of that is kind of our growing up. We kind of have this assumption that like, well to have a normal life or a good life, I have to be in perfect health. And there’s almost kind of like an ableist undertone of that in the same way that it’s like when you’re pregnant, everyone’s like as long as it’s healthy, as long as it’s healthier, like, okay, well what if it’s not like, do you know that that is not a guarantee, but anyway, but I, yes. What, what I, what I know from what you’re saying is that basically there wasn’t a lot that medical providers could do previously for rheumatoid arthritis.

Cheryl Crow:

It was like, Hey, we can give you some comfort, but we cannot, this is like a train that’s on a track that is going towards, you know, disability dis you know, disfigurement in the form of, you know, progressive joint deformity. And we can’t stop this train. Whereas now we’re like, Hey, we have these amazing tools that yes, they do sometimes have, you know, severe side effects, but the medic – but the disease has, you know, effects as well.

Cheryl Crow:

I always tell people I’m not scared of the, I’m scared of the disease. That’s my primary thing that I’m scared of. And then, yes, I I’m, I am optimistic about the medications. I am also, you know, again, I have this chart in my head of like the choose your own adventure. I am nervous and about, you know, every time I start a new medication, like I’m on my fourth biologic right now. Every time I start a new one, I’m a little bit, you know, it’s unknown. But but the, the, the disease is like the enemy versus, you know what I’m saying? Like, that’s my per that’s my opinion or my perspective.

Kori Dewing:

Right. Well, and you know, we, as prescribers, we really take into consideration some of the things that help us, that guide us to which therapy is least likely to cause harm and have the best chance of giving somebody a relief of symptoms. And, you know, that goes into screening for any drug interactions or screening for allergies to other medications, looking to see if there’s comorbidities that, you know, may be made worse by certain choices of therapies. You know, also infectious disease exposures, trying to screen for that ahead of time. But also what’s really important.

Kori Dewing:

And this is a place where our patients, I feel like they have more control here, maybe don’t understand it, but that regular lab monitoring getting in and getting the labs done as we’re asking is so important because we can see, you know, changes or we can see hints of things going awry faster if we’re getting those labs done. And, and that’s, that’s so important for us. And I don’t think patients understand because it’s a hassle, it’s a cost. But it is very important for safety as well.

Cheryl Crow:

Oh yeah. Yeah. And I think during COVID, it’s just been hard to like, you know, get yourself physically out anywhere when you, you don’t are so nervous about exposures. I’m like, oh, I wish that Theranos thing had been true where you could, you know, not yeah. Anyway, blood, but you’re, you’re right. I mean, I’m always, I’ve been on methotrexate for 19 years and I’ve never had any abnormal, you know, liver blood work. And I’m like, I’m just like waiting for the day. Cause I’m like, how am I so lucky? You know, but it’s like, that’s, but the monitoring makes me you know, makes me, gives me that peace of mind that OK, things, you know, not, not necessarily then everything that’s potentially bad shows up and the routine blood work with that, that I know my providers, you know, can check on whatever, you know, might be lingering or not lingering. What’s the word, something that might be simmering under the surface.

Kori Dewing:

Right. And, and then also, you know, during the visits, when you see us, we’re asking, we give you these questionnaires that have 10,000 questions on, and one of them is asking and questions on mm-hmm <affirmative> one of them is asking about disease activity, almost always. But another aspect of that is trying to find out if there’s something that could be a potential side effects to, to the medication. Like, have you developed a new cough for example, or do you have new bruising, some things like this that could, could indicate to us that we need to be thinking about safety and the medications that you’ve been prescribed.

Cheryl Crow:

Yeah. And, you know, I happen to know a little more about the health system because I, you know, am an OT. And I actually, I used to work in U W, HR at UW medical center back when U dub and Harborview were separate. But but so one thing I would do wanna say for the record, and I, I know you can probably say this more eloquently than I can, but that in any individual provider in the United States, like who’s giving medication is not getting any kickback or it’s illegal for you to get a kickback from the drug companies, right?

Kori Dewing:

Right. Absolutely. Yeah. The enthusiasm that you see is strictly that we are excited to give, be given the chance to give you a medication to feel better.

Cheryl Crow:

Absolutely. Yeah. And what I mean by kickbacks is like in, I don’t know how long ago this was, but our compliance officer at UW used to give this long, like walk through medical ethics hall of shame where I’m sorry, all the examples were from Florida. I’m sorry. Those in Florida, <laugh>, you know, people being like, oh, you know, the drug companies in the old dinner days, not now, or it’s not legal now to be like, oh, if you give my PA, if you prescribe my medicine, then we’ll give you every time you prescribe it to a new patient, we’ll give you some amount of money. And that does not, I mean, or I shouldn’t, I shouldn’t say it doesn’t happen. That is not that is illegal, you know? And so it is not the norm that in our, in our country, in the USA,

Kori Dewing:

Right. And the sunshine act from years ago, that was enacted specifically, was to bring that out into the open so that anybody can look up their prescriber and see what conflicts of interest they may have. So that’s, that’s always, that’s great that it’s out there. I, I think that protects everybody. Absolutely. You know, speaking of cost, I think that’s one of the biggest struggles that we as providers have when we’re trying to choose a therapy and, you know, Cheryl, you and I met when we went to Washington DC together to advocate on behalf of patients with rheumatic disease. I just got back a couple of days ago from Washington DC. And one of the things that we were there talking about was something called copay accumulators. Are you aware of those? Because I wasn’t, until I showed up to Washington

Cheryl Crow:

DC, right. Tell me about them. Do I wanna know the stress is – yeah it’s so much. No, but we have to know, knowledge is power.

Kori Dewing:

I know it’s so frustrating. Well, we’re really fortunate in Washington state, Washington state is one of the few states that has enacted legislation to protect patients against the use of these copay accumulators, which are systems set up by drug by pharmaceutical by your insurance companies to help basically fill their pockets. So basically when, back in the day, when, you know, we know that these medications that we prescribe are expensive, sometimes prohibitively expensive. And so initially the manufacturers develop something called copay cards. These were like coupons that would give a patient back a portion of how much they were required to pay each time they filled their prescriptions. Right.

Cheryl Crow:

Yeah. And when you say manufacturers, do you mean the pharmaceutical? Is that

Kori Dewing:

Pharmaceutical manufacturers? Yeah. Perfect. Right. Yeah. So if you were prescribed an injectable biologic, for example, you may maybe if your copay was $50, each time you refilled your medication, maybe it would pay $25 of that $50, for example. And, and so sometimes that was enough that our patients were able to afford these medications. And recently, because of all the issues with the lack of transparency with insurance companies and what they cover and what they don’t cover, there’s been the development of what they call co-pay accumulators insurance companies are now saying that because that $25 did not come specifically out of the patient’s pocket, it doesn’t count towards their copay. So it reduces overall the insurance company’s debt for paying for that medication, but doesn’t reduce the patient’s costs out of patient, out of pocket costs.

Kori Dewing:

And it really just goes against what we were trying to, to help, which is make it so that these medications, which can be so expensive are less expensive for our patients. So, you know, if you’re in, if I would highly recommend that you contact your legislature to talk to them about this right now, there’s a bill in the house. It’s HR 5 8 0 1. It’s just in the beginning stages. But this is just another way that insurance companies are really reducing the ability of our patients to get the medications that, that they need to treat their disease effectively.

Cheryl Crow:

Yeah. That’s so frustrating. It’s like, what will, what will they think of next? If, if they use all that creativity towards actually helping people, <laugh> the world will be a better place, but they’re using it toward, that’s why we don’t, I don’t like a profit motivated healthcare system. It’s just never, in my mind, I don’t see how that could ever benefit the patients, ’cause it’s not profitable to have a health condition. You know what I mean?

Kori Dewing:

So patients are, are frustrated. I mean, understandably. So they think that we, as providers should know which medication, what each medication costs for each patient, but unfortunately patients have so many different insurance carriers and then individual plans within those carriers. And each plan has a different preferred agent or a different set of rules that they go by, that patients must do this, this and this before they get this medication. And the cost of this medication is this much, this one’s this much. We, we can’t possibly know all of that. And so that is one of my biggest frustrations. It’s really tedious and challenging for a patient, but on the back of their insurance card, there’s a phone number and you can call it and you can find out of the medications that are used to treat your autoimmune condition. What are the costs for each of these medications, the out of pocket costs?

Kori Dewing:

What’s a preferred agent over another. Is there a tier plan? Is there a step therapy? Is it better for you to get a medication by, by IV, which is typically covered under your medical benefit than it is for you to receive a self-injectable biologic, which is covered under your pharmaceutical benefit, having that information though, it’s tedious and difficult to obtain. And I, and so I would argue that sometimes it’s intentionally so difficult having that information as you talk to your prescriber, your provider is huge because that will help us make that decision together. Because the last thing that we want is to choose this medication that we think is gonna be best. And then for you to try to get it and you can’t even get the medication because of the cost.

Cheryl Crow:

It’s, it’s so frustrating and it’s even happening where now where people will have taken a medication for a number of months or even years. And then all of a sudden their insurance carrier decides, well, we’re gonna try and save some money. So we actually, we’re not approving you on this anymore, even though you’ve taken it and it’s worked and it’s such a slap in the face to patients, you know, but like you’re, I think that you’re providing a really helpful insight to patients ’cause I mean, I you’re you’re right. That I think, you know, if you don’t have any experience in healthcare, you would think, well, okay, I’ll just ask I’m at the doctor’s office. I gave them my insurance card. They should just know, oh, it’s like, in my case, it’s Regents. Okay. Just look up regions. Well, Regents is not just one thing, like you said, they have for every single company, you know, cause it’s through your employer typically they have negotiated their own rates and their own.

Cheryl Crow:

It’s very, very complex. And so it’s, everyone is frustrated <laugh> I think sometimes and this is one of the things I, I dislike on social media, little soapbox, but that people can, you know, first of all, we should call out anyone who’s being inhumane or not ethical should be, you know, of course call, call ’em out. But sometimes there can be a little bit of an us versus them dynamic of like the patients versus the providers. And I’m like, listen, people, it’s all of us versus the insurance companies in the us. No, no. I mean, it’s funny. I was actually saying that to my therapist and he was like, I he’s a psychiatrist. He’s like, I can’t believe I’m actually going to do this, but I’m gonna try to be, he’s like for the sake of objectivity, I’m gonna take the perspective of the insur.

Cheryl Crow:

I was like, no, he’s like, I can’t believe I’m doing this. I don’t know how he, how he’s like, he’s afraid that it’s like they are trying to not necessarily. Okay. I don’t know. I don’t know. I don’t even want, I, I still don’t. I can’t take necessarily their point of view entirely, but you know, there is a problem of, you know, cost being out of control and you would want to ne like for example, you know, if, if a $20,000 a year medication were as effective for a patient as an $800 a year medication, you know, right. If they’re the same effectiveness, no problem to save the healthcare system money or the insurance company money. I think the problem is when they’re so clearly motivated by saving money that they’re saying actually want you to take this less effective, cheaper drug. And it it’s just to me, the relationship between patient and provider is so sacred.

Cheryl Crow:

And like, I respect like the years of training that you have. And that to have someone who, who I’ve, who’s never met me, never seen my case, doesn’t know me, you know, and doesn’t know you come in from the insurance company and be like, I reviewed your file. And I decided that you need to take this other medicine. Like, who are you? Like, why are you able to say anything? You know, so, sorry, this is just me going off. But but you know, if you’re struggling, so anyone listening sometimes when I’m struggling with something, I think, is this a hard problem? Or am I just not looking at it? Right. It is a hard problem. <Laugh> there. If you’re struggling with figuring out how to get your medication covered it’s not, you it’s, the system is designed to be difficult. So how, yeah. So you mentioned how that they can research the cost. People can research the cost of their med potential medicines by calling their insurance company. And what, what kind of patient assistant programs are, are out there.

Kori Dewing:

So, as I said, there are copay cards for most of the medications. Especially if your state doesn’t allow the copay accumulators as part of this issue and those can help reduce the costs. There are also often patient assistance programs. Those typically require patients to have documented certain income level. And if you’re within that income level then you may qualify and it’s, it’s a lot higher than I think most of our patients would think because we know that these medications are really expensive. Nobody really has an extra thousand dollars a month to be able to pay for medication. So those, so checking out to see if you qualify under those patient assistance programs. And then I would also say that some hospitals also have charity programs, which you may qualify for as well, that would help to reduce you receiving reduce the cost of a certain medication, for example, IV medications. And that can be something to look into as well.

Cheryl Crow:

Yeah. Awesome. And I know that I wanted to circle back, sorry to the role of different people in, in the like rheumatology office, because I know for example, when I go to see my rheumatologist, there is a medical assistant that checks me in or, or, sorry, there’s the well, the front desk person who has no medical training, you know, of course they just check me in and they’re the one that does the scheduling. And then there’s the medical assistant who comes in, like takes your blood pressure and everything like that. This is gonna circle back to what we’re talking about with medications, but then there’s also sometimes instead of the medical assistant, it’s a, it’s a nurse like the rheumatology nurse doing my blood pressure and my vitals before the doctor comes in and then the doc, the, the rheumatologist comes in. And then later on when I have other questions, sometimes the, the nurse is the one that answers them.

Cheryl Crow:

And so she’s the one that helps with the access. Like when I was on Remicade, I had the Remicade co-pay card. So in, so in the room, which I know it depends on the clinics, but something that I’ve heard through my advocacy work is that so many providers are being taken away from their clinical jobs in order to have to spend so much time doing all this paperwork for insurance and everything. Is that something where typically, is it like, is there a social worker in house that helps with this? Is it nurse? Is it just whoever, just, you know what I’m saying?

Kori Dewing:

Right, right. So I come from a unique background, Cheryl, I don’t know if you know this about me, but I started working in the clinical, in the clinic setting when I was in high school. So I, oh, I know I was a CNA. I was I was a medical assistant for years and years, then I went and did my licensed, practical nurse degree, my registered nurse. Then I got my master’s degree and my doctorate in nursing. So I’ve been working in clinic since I was 17. I’ve done amazing. A little bit of everything. I’ve answered the phone, I’ve done the prior authorizations. I did the billing. I, you know, I, I worked in the lab taking blood and doing some basic tests. I, I even did some x-ray imaging. I was, I was the one pushing that button too. Oh.

Kori Dewing:

I mean, I’ve really done a little bit of everything. Certainly nowadays, the number of patients that require these prior authorizations, it’s not simply a matter of just filling out a piece of paper and sending it back. Oftentimes we have to look through a patient chart to determine when they took a medication for how long, and then, you know, you have to fulfill all these requirements and you have to send in documentation of that in each clinic, whoever does that is going to be different. Thankfully where I am right now, that’s not me. I will help out. And I will try my very best to make sure that my chart notes support my reason for choosing a certain medication, whether it’s comorbidities or things that they’ve done in the past, et cetera. But in my clinic, my medical assistant is the one that does all of my prior authorizations.

Kori Dewing:

And in fact, whenever there’s a problem, she’s right there and I can, I can ask her Dana help, what what’s happening here. I, I need to know I think that varies clinic to clinic. But there’s also others within our clinic that specifically look at the IV medications and those prior authorization processes, because those are different. So it really varies. But, but I would say that this prior authorization issue is huge and the amount of time and hours that it takes to get medications approved for our patients that we’ve prescribed. It’s not the ordering, but it’s the downsides of all of the paperwork that happens after that is, is just tremendous. I can’t believe how much that’s skyrocketed just in the last five years.

Cheryl Crow:

Yeah. And when we say the words prior authorization, I think most patients might have heard that before, but what, what does it actually mean?

Kori Dewing:

So for example, if I was to prescribe you in antibiotic for sinus infection, for example, typically you would go to the pharmacy, the prescription would be waiting and you’d pick it up. Nobody really questions, whether or not you need a certain antibiotic for that sinus infection. As long as I’ve documented, that’s the diagnosis. You just go and get it. But the medications that we prescribe in rheumatology I’ve there, there, as soon as we prescribe a medication, it goes to a pharmacy. It may not be the pharmacy that your insurance company wants you to get it through. So we think it’s this pharmacy, then it may get back to us that no instead has to go to another pharmacy. So then we would then find out which pharmacy that is, send it to another pharmacy. And then the pharmacy has your insurance company will dictate.

Kori Dewing:

You can have this medication if you fulfill these criteria. And some of those criteria are really reasonable, but they’re things that we’re, we’re doing anyway. Criteria may be that you’ve been screened for infectious diseases and that that’s documented that you have a certain diagnosis and that’s documented, these are parts of what we do as prescribers anyway. But then we have to document that and make sure that, that those boxes get checked and then they will then depending on insurance companies and the medication that’s prescribed it may be then have you tried this medication and, or this medication and, or this medication for at least this period of time, and was there a lack of efficacy or was there a side effect associated with it? And if there’s a side effect, what it is, what is it? So then we have to go back and answer those questions. And so it’s this back and forth, back and forth. And it’s not typically by email, this is by good old fashioned fax. Oh my God. Oftentimes, so, you know, you can see where this delaying then makes it, so you can’t get that medication right away. It may take weeks for you to get that medication because of all the back and forth that happens.

Cheryl Crow:

Yeah. No, and that’s a really, that’s a good explanation. I think. Yeah. The it’s, everything’s so complex. We really, everyone needs to like well obviously I created my own course, you know, which is there almost like everyone who gets diagnosed with one of these conditions needs to just get like, go to school, like a school of Arth, like arthritis school, you know, or like figuring it out. Just, this is not even about the complexity of like making medical decisions and stuff. It’s about like, just understanding the logistics. Like I remember, you know, like you were saying specialty pharmacy. Yeah. I’m so used to like, okay, my whole life example you gave exactly, you know, get a, give a sinus infection or strep throat. You go to your local Walgreens or this pharmacy and you get your prescription. I was so confused when it was like, oh, you have to go to the specialty pharmacy.

Cheryl Crow:

And it’s actually not really a place you can go to. It’s like a phone, like you call on the phone and they make you go through all these things. And then you finally, it like gets delivered to you, but it’s, it’s temperature controlled. So you have to put it in the fridge. And it’s like, whoa, like all this, you know, stuff to learn. And I remember when I was just to give another example about this when I was looking at graduate school for occupational therapy, I either, well, there’s a lot of variables because I was just dating my husband at the time. And he had gotten a job in California that he really wanted. So I applied to school in California and local. So I was comparing like a university of Washington with like in-state tuition, all that stuff to like a private school in California.

Cheryl Crow:

And, but anyway, but one of the major variables financially was, you know, medications. And so I tried to figure out, you said, call the insurance company. Well, the problem is, if you’re looking at a decision in the future, like I’m gonna be either at X university or X university, they cannot tell me like with the student insurance insurance plan, the insurer won’t tell me over the phone. They can’t, they can’t say like, I didn’t know whether my I, and at that point, I guess I didn’t understand that like the Remicade I was on Remicade at the time that the assistance, the copay assistance thing was gonna cover it probably no matter where I went, I didn’t, I had so much anxiety about that.

Cheryl Crow:

And I was like, I felt so it’s such an impotent feeling to feel like I don’t even, I can’t even get the information like to even make this decision, like, you know, in-state tuition, but with a $40,000 a year, medication is not the same financially as an out-of-state, you know, private school tuition, but with a $25 copay for your medication, <laugh>, you know what I’m saying? So it’s just such a significant source of stress, you know, for patients. Regardless of whether you have any fears about the medication, I mean that if you have fears about medication, of course, this is gonna tip you over the edge. Right. <laugh>

Kori Dewing:

Right. My goodness. Right. I mean, I think that’s what we’re up against and that’s part of why. So every month that a medic every day that a patient isn’t getting the medication that we’ve prescribed and especially an expensive medication is a reduced cost to your insurance company.

Cheryl Crow:

Yeah.

Kori Dewing:

And that’s, what’s frustrating. And it also is another day that inflammation is happening in somebody’s body. And so that’s the other side of it. I get so frustrated because I feel like this shouldn’t take so long for our medications, for our patients to get on the right medications, that there shouldn’t be so many hurdles, but there really are. And I guess, you know, I just, I, I really encourage patients to really put in that extra effort to try to figure out the complexities and the, the lack of transparency that your insurance company is put up, call find out what their estimations of costs are, what their tier program is. What’s their preferred medications for the diagnosis that you have. And try to understand that. And then again, work with your provider’s office, find out who the person is, who can help navigate with you, partner with you from that point, moving forward. But having that information and going to your provider, your prescriber for that will set you up to be successful and to help reduce some of those roadblocks that get put up.

Cheryl Crow:

Yes. I, I love that. And I would say just one more thing to add it. I feel, I sh I try to be like, see everyone’s point of view. Like I was saying earlier, it’s hard for me with insurance companies with this issue, but the people who are talking to you on the phone, you as the patient are not the ones that are the high level executives making these decisions, you know, that are profiting millions of dollars they’re employees who are just, you know, trying to do a job. And so I do try to remember to just be like, you know, this, person’s not their fault that this is happening, I’m frustrated. And I might, <laugh> convey that frustration through my tone of voice occasionally, but also be like, okay, you’re gonna, sometimes you’re gonna catch more flies with honey, you know, than vinegar.

Cheryl Crow:

So the thing, other thing that I’ve really really benefited from with my insurance company is the ability to have a, a text based chat with them versus a phone call. Because what I like about ch the chat is that you can save it afterwards. And so you have everything in writing and they save it too. So there’s no ambiguity of like, well, you said this, or you said that, you know, mm-hmm <affirmative>. And so that is something I think that’s, that’s helpful that at least my insurance company has provided, but yeah, knowing, understanding the system, you know, quote unquote, the system <laugh>, it’s not really even a system, it’s like a bunch of overlapping, separate unrelated systems. Yeah. Is, is empowering. Yeah. As a patient. So, yeah.

Kori Dewing:

Yeah. And then I would say support reform, you know, reach out to your legislators and let them know about the challenges that you are having on a regular basis, getting your medications and how we need to reform this. The, the, the insurance, the insurance coverage, and reduce costs for our patients and, and really help out in the long run. That’s so important. They need to hear from us. They need to hear how people are struggling on a day to day basis.

Cheryl Crow:

Yeah. It’s very cathartic to share your story. I mean, I know that for some people it’s like, that’s more emotional and cognitive labor and it is, it’s more work for you, but it’s at least can be going through being part of the solution potentially. And, and you don’t have to do that on your own. You don’t have to literally sit there, like with a, with like an email open on your browser being like, what do I say to them? You know, there’s the American College of Rheumatology Arthritis Foundation, Creaky Joints, a lot of nonprofits have put together resources. Like that’s how I went to Washington DC with American college of rheumatology, you know? So I’ll put some links in the show notes to ways to get involved. Cause every time I’ve talked about this, like on my social media channels, people are always like, oh my gosh, I wanna do that. Like, how do I, you know,

Kori Dewing:

Do that? I believe that they’re opening up the application soon for the advocates for arthritis to attend in September. And hopefully it’ll be in person exciting. But that usually, that usually opens up around this time and they love, love, love, and need patients to come and, and share their stories. It shouldn’t be intimidating. But they wanna hear from you.

Cheryl Crow:

I love it. Thank you. That’s awesome. And, you know, just as we start kind of wrapping up a little bit, I know we could talk all day, but okay. One of my favorite questions to ask anyone, whether they’re a patient themself or a health provider is, you know, what are some words of encouragement or tips that you find really helpful for newly diagnosed? ’cause The newly diagnosed population is like so near and dear to my heart, you know? Cause it’s just such a, it’s such an overwhelming time. What are some gems of wisdom <laugh> not to put pressure on you.

Kori Dewing:

Right, right. I think I, I, what I would say is that there’s a lot of hope in, in the newly diagnosed patient arena. I think it can feel very overwhelming, but realize that we do have this plethora of different therapies available and that whereas in with many chronic diseases oftentimes, you know, the focus is not on helping you feel better really in rheumatology, we’re trying to put you into remission. We’re trying to make your condition go into the background to not define you so that you can live as normal of life as possible. And, and so we’re working as a partner with you to try to do that. And I think that’s the biggest thing is to have this hope and if something’s not working, if you’re having a problem, then we need to hear from you. We’re your, we should be your partner. We, we are really excited when we get newly diagnosed patients, because we know we can make you feel better. We just have to find out what it is, which therapy it is, is your secret sauce.

Cheryl Crow:

I, I love that. And it’s like, I mean, it does link back to the medication and coverage discussion because one of the things that, that I find frustrating with the insurance denials is that, that you have that critical period, you know, early on in your disease where you’re Mo most likely to go into remission. Right. Is there like a time period? I, I think I read somewhere six months where it’s like, if you get early aggressive treatment within X months or X years, that’s the time do you know that statistic off the top of your head?

Kori Dewing:

You know, you’re right. It is, it is the sooner, the better basically is what we know. And if, if we can, if we can quickly diagnose, get a diagnosis and quickly in initiate treatment to get somebody into clinical remission, the chances of them developing disabling deformities or chronic issues are much reduced. And in some cases, and this is what’s so exciting, and this is where we’re going with. All of this is seems to almost reset that, that clock, so to speak of, of the immune system dysfunction and, you know, our hope is that down the road, we then may be able to withdraw some of the medications if we can get somebody into early remission.

Cheryl Crow:

That’s what the irony is that, yeah, you’re actually most like in the, if your goal in like 10 years is to be on no medicine, your best bet potentially is to go aggressively on medication initially, but that’s so UN, UN intuitive, most people in their, you know, your logic would say, okay, well I’m gonna, or this is what I hear a lot of people saying, again, this is not in a clinical setting for me, but more like a social media conversation, you know, setting people say, well, I wanna try diet and exercise first. And if that doesn’t work, I’m gonna try medication. And it’s like, that sounds so logical. And if you don’t know the research <laugh>, but you’re like, but diet and exercise alone does not have anywhere near level of evidence as the medications. And so then if, and then you’re starting the medications in a worse physical state, which makes you, is that right? Sorry. You tell me if I’m saying no.

Kori Dewing:

Yeah, it’s exactly right. I think that we used to, they used to talk about this as the pyramid treatment. So, you know, you would, you would start with the least expensive, the easiest medication, some of that diet and exercise, things that we know can make a benefit. And certainly in patients with very mild disease, maybe, maybe that’s all they’ll need mm-hmm <affirmative>. But what we found is then we would wait and next visit. If it wasn’t enough, we’d, you know, maybe change things. And slowly we’d get to that top of the pyramid, which is the most aggressive therapy. And, you know, in the last 15, 20 years with the invention of these biologic therapies, they talk about inverting that pyramid, where we aggressively treat these diseases, these inflammatory conditions initially, so that we can get somebody under control. And then if, and then withdraw therapy, if, if it’s not needed or reduce therapy reduce to, you know, different doses or reduce the number of therapies, just so that patients can, can feel better without developing the Des distractions that can happen so quickly in, in joints that are undertreated.

Cheryl Crow:

Yeah. And when you were talking earlier about the, the, the hope for the newly diagnosed, one thing I tell people when they say, well, it seems like everyone I talked to with rheumatoid arthritis, isn’t in remission. And there’s all these studies that are like, so many people are going to remission. Well, I don’t talk to them on social media. And it’s like, what I tell them is, well, first of all, in social media didn’t necessarily exist when I first got diagnosed. But when I was in medicated remission for seven years, I wasn’t talking about my condition very much. And it wasn’t ’cause I was ashamed of it or anything. I just, it didn’t, I was in remission. I was living my life. Like you said, as close to a quote, unquote, normal life, as I as could be expected for someone in their twenties.

Cheryl Crow:

And so there is sometimes like the, again, a side I am always thinking about social media, ’cause that’s like where I inhabit my, my social participation these days. But is that there can be a silent majority. That’s there, you, you’re not seeing them ’cause they’re not, they’re not in your community, but they’re there. They are there in the world. They’re just not necessarily, they’re not going to Facebook groups to get support. They’re not talking about it and processing it. So that’s something that I try to remind people about that you’re not seeing them, but they are there, you know, it’s hard to convince people. They’re like, what should you sound? You sound insane. Like, I mean,

Kori Dewing:

You hear it. People say you can’t advocate for others until you take care of yourself. And that’s what’s happening in that situation is people have taken care of themselves and now their passions and their struggles are for their children or for their parents or their, their, they may be online, you know, talking about other things

Cheryl Crow:

Like swing dancing. That’s what I was talking about. Right.

Kori Dewing:

Right. Exactly.

Cheryl Crow:

Yeah. And, and you know, it’s, I really like that you mentioned the pyramid because you know, if you go on the Institute of lifestyle medicine or like the association for lifestyle medicine, I don’t know if you’ve heard of this or, you know, but lifestyle medicine is, is, is about that pyramid. And it’s like the reason I know about lifestyle medicine partly is obviously as a patient, I’m interested in it, but, and obvious, and as an occupational therapist, it’s very congruent with our practice, which ’cause we don’t prescribe, you know, medications. We are about the lifestyle factors to things like you know, that your daily roles and your daily routines and habits, things you do to manage stress, exercise, nutrition, sleep, those all are really important. But I, that pyramid, the lifestyle medicine pyramid is always rubbing the wrong way ’cause it’s, it’s prioritizing the lifestyle factors and saying almost positioning medications is like, this is the last resort.

Cheryl Crow:

Like these are terrible. And you’re like, I think with certain conditions it applies. But in other conditions you have to look at a condition by condition basis. And again, like I’m very aware and I’ve shared on the podcast, the, the evidence of things like, you know, addressing the gut microbiome and stuff like that. It’s all very exciting. Yeah. But in, in the current evidence is, you know, that the medications are, like you said, the primary thing and that it’s going to be on a population level, most likely to be effective. It doesn’t mean for an individual. Like you said, if one individual has a mild case might do great with a vegan diet or something else. But that doesn’t mean that that pyramid should be taken as like gospel the, the lifestyle medicine pyramid. So

Kori Dewing:

Yeah. And, and I would also mention that we know that the lifestyle medicines, those are healthy habits, but it is very difficult to make healthy habit changes in our lives and nearly impossible for somebody who is overwhelmed with their disease and they have overwhelming fatigue and pain. It’s very difficult to make those changes successfully. So allow the medications to do their job, to reduce your inflammation and also engage some of those lifestyle changes that will help you be a healthier person in the long run.

Cheryl Crow:

Yeah. I, I love that. Yeah. And there’s a lot of, unfortunately there’s a lot of kind of toxic messaging and the kind of lifestyle medicine, you know, arena or like that, like not everyone has the money or the time to like go shopping at whole foods every single day and like go to like five different kinds of exercise classes, you know, it’s like take people where they’re at, you know? So anyway, yeah. Lots of soap boxes, but actually since I have a little, I have you for a tiny bit longer, I did wanna ask sometimes what I like to ask my very expert providers is is there anything like late breaking or new new developments? I did. I didn’t tell you this ahead of time. So like totally. If, if you don’t have anything on the top of your head, that’s fine. But is there anything kind of new and exciting in the field of rheumatology that, that you’re excited about like new kinds of treatments? Like I keep hearing about like VA nerve stimulation or like, you know, all kinds of different stuff.

Kori Dewing:

Yeah. Yeah, absolutely. I mean, I’m always excited about this every year we have our national rheumatology meeting in November and I love it because I always leave really invigorated and excited knowing kind of what’s on the horizon. I would say that I felt like like 10 years ago, everywhere you turn, there was a study about rheumatoid arthritis and, and as a result, you’ve seen all these different medications that target in different inflammatory cytokines. We have this plethora of therapies available now to treat our patients with rheumatoid arthritis, we can make you feel better. Right. That’s so cool. And then I would say maybe about five years ago, this same thing happened with psoriatic arthritis everywhere you turn. There was another study about psoriatic arthritis and the different treatments. And again, now we’re starting to see these therapies being approved. I would say we’re on the cusp right now with lupus finally, like how many years did we go?

Kori Dewing:

We went 20 years without a therapy approved for, for lupus. You know, we, we are starting now to understand what drives some of that inflammation in this very challenging condition. It’s so heterogeneous, it’s so different person to person in the way that it’s going to affect somebody. It’s a challenge to really develop effectively develop therapies to treat these conditions. And now we’re starting to understand that. So I think that in the next five years you are just gonna see an explosion of therapies for our lupus patients, which will translate to better outcomes for them in the long run, which is so sorely needed right now.

Cheryl Crow:

That is extremely exciting. Yeah. I had heard a few murmurs about it, but I try, it’s like I have this weird reaction where I’m like, I don’t wanna get too excited. You know what I mean? Because I’ve heard. So like, you know, and it’s so cute, but like my husband or my, you know, mom will, sometimes my mom listens to the podcast, my husband doesn’t, but <laugh> so I’m like, hi mom, but she’ll send you things. And then I, I always want to receive them, right? I want you, if anyone’s thinking about, you know, sees anything about rheumatoid arthritis, but you know, if you look into the weeds, sometimes it’s like in one mouse in one trial and you’re like, shoot, darn it. Like, that’s gonna be like 15 years before it might, you know, actually help me. But but that’s exciting about, about lupus. It really is. Just, yeah, it’s, it’s such a difficult one. And I, I feel for all the lupus warriors. So if you’re listening and you have lupus, the hope that’s that’s good. Is there anything else, you know, that you’d like to share with the audience before we wrap up?

Kori Dewing:

<Laugh>, you know, I could go on and on and on. So Cheryl, what I would say is if you ever need me back and you wanna talk about something in particular, I’m more than happy to help out and answer any questions. There’s, there’s just, we I’ve been doing this for 20 years. We could go on all day about the challenges and, and the things to help patients in their day to day life. So thank you for what you do. Thank you for spreading the word. You’re amazing. I love your enthusiasm.

Cheryl Crow:

Oh, they that’s funny ’cause yeah, I actually called my first website was called the enthusiastic life and, and that’s, I made that in like 2010 and it’s funny because yeah, that is my core personality, but you know, chronic illness can take it out of you. And there was a time when I had a bunch of things going on health wise, not, not only the rheumatoid arthritis, but but also like three different acute health things, including like a car accident and a terrible case of SIBO , like small intestinal bacteria overgrowth, and a pilonidal cyst all in like an eight month period. And I, I was like, I don’t feel enthusiastic. This is like 2017. I don’t, I don’t have anything left. You know, it was just, it was a really hard time. So I re the reason I’m sharing that is I remind myself that sometimes like sometimes have to remind yourself of like, when you were at kind of the rock, you know, bottom, because then you’re like, this is, it is just, it’s –

Cheryl Crow:

I feel for those who feel like your chronic illness has like robbed you of part of who you are. Do you know what I mean? Because I got, I got there through not just the chronic illness, but the acute illnesses on top of it, but I know others, all it takes is one, you know, one diagnosis just lupus or psoriatic or ankylosing or rheumatoid to just take it out, take your enthusiasm out of you. So I hope that, you know, if you, if you’ve lost it, you can get it back or it is possible to get it back, ’cause it happened with me. So anyway, sorry, that was such a long, so I have my own podcast. I could just talk about whatever I want, but <laugh> but thank you for acknowledging my enthusiasm.

Kori Dewing:

<Laugh> absolutely, absolutely. It’s a treasure. So keep it dear.

Cheryl Crow:

I try, I try I’m I’m a 40, I’m not, I’m not learning to be embarrassed yet. So <laugh>, I’m like, like “how do you put -Cheryl, how do you put yourself out there?” I’m like, I just do cause I am no shame. So is there anywhere people can find speaking of no, no shame. Are you publicly on social media or is there any way people can find you online or no, it’s okay if you have boundaries <laugh>

Kori Dewing:

You know, I actually, so I am that generation X. Yeah. So I live, you know, I was during that time before we had all of these computers and social media, now I’ve seen how it’s changed our lives and, and I, I will embarrassingly say, I don’t think I have much of a social presence a little bit. My name is, is unique. So it’s really easy to find me online. Mm-Hmm <affirmative> there’s no other famous person with my name, so <laugh> you can certainly find me. But, but I do try to stay most engaged through the American college of rheumatology and then through the university of Washington where I’m a professor and a clinician. So I’m, I’m here in real life.

Cheryl Crow:

Yeah, no, that’s wonderful. And I’m like, I was born in 1981, so I’m like, they call like an elder millennial, you know, cause I’m like, I do actually identify like I with gen X in many ways, because I mean, there was no technology in, in my childhood, you know, other than, I mean TV. Right, right, right. You would fight with your brother and sister over the TV, you know, there’s four channels or whatever and you know, you would, you know, but, but, but then by the time I was in grad school, you know, 20, 10 to 2012, woo. The world had really changed. Oh yeah. I didn’t have my cell phone though. I didn’t have a smartphone until after, or I didn’t even have a cell phone, much. The smartphones didn’t exist when I graduated undergrad in 2004. But I mean, I would call my boyfriend from the, you know, the, the hallway phone at the dorm room, you know, calling with a calling card like, oh, we have five minutes left in the calling –

Cheryl Crow:

So it’s funny. I feel like I have like a foot planted in each generation, but anyway, but yeah, I respect that. I’m always like intrigued by people – like my sister also doesn’t have any social media and I’m like, what’s it like, <laugh>, I’ll send her TikTok. She’s like, what are you doing?

Cheryl Crow:

But anyway but you know, we all, we are all we are who we are, but I always just ask people at the end if there’s, you know, because that way, if someone’s listening, like, oh, I wanna find her. They can find you, you know, on, on the UDub, you know, website. And yeah, I just, I really appreciate everything that you do. I mean, I know that being, I, I was just an adjunct faculty member at, at a lake Washington Institute of technology in the OT assistant program, but that’s so much work. So being a professor, a full professor, you know, at a doctorate program, I cannot imagine how much work that is on top of, you know, doing all the volunteer work you do, and the advocacy through the American college of rheumatology and your clinical work. So I mean, the fact that you still, after all these years have so much enthusiasm and passion for her improving people’s quality of life is very inspirational to me. So thank you. <Laugh>

Kori Dewing:

Well trying to keep up that enthusiasm. I’m don’t forget. I’m also raising two teenagers, so that’s

Cheryl Crow:

Oh my God. The energy outta me. Oh boy. Is that the hardest thing that you do in all of your roles

Kori Dewing:

Right now?

Cheryl Crow:

Yes. Okay. Always Laura. Absolutely. <laugh> I li yeah, I, okay. I’m gonna have to talk to you offline about that. Cause I’m always like Charlie’s only eight, but like every single day I have this, like what, my older therapist, before I saw my current one would call like, she’s like you think that it’s gonna help you when you have preventative anxiety, like I’m being, I’m already anxious about his teenage years. He’s only eight and she’s like, you’re gonna spend so much time when he is eight worrying about his teenage years. There’s no reason to worry, by the way. It’s just, my nature is that I wanna, okay. Right, right. I’m like had this perfect innocent child, like there’s no way he’s ever gonna turn into a teenager, right? Like I told him yesterday, I don’t wanna grow. I don’t want you to grow up. And that’s so inappropriate for me to say, but like, ’cause I’m like, I don’t wanna put any pressure on him, you know, to, I mean, he’s like, no, I don’t wanna be there. I don’t wanna, then he goes, I don’t wanna get a job. I just wanna live with you forever. It’s like, oh, that’s so cute anyway. But yeah, yeah, no, I appreciate. Yeah. And you have a dog, a beautiful dog. If you’re watching the video version of this

Kori Dewing:

Too, that’s that’s the that’s COVID puppy that somebody else adopted that couldn’t take care of. So we just adopted her. Oh. And she, she just looks so terribly difficult. Doesn’t she?

Cheryl Crow:

I know. Yeah. Just a nightmare. <Laugh> but anyway, well thank you so much again. Yeah, we will do this again. I hope.

Kori Dewing:

Absolutely. Thank

Cheryl Crow:

You. Bye bye for now.

Kori Dewing:

Bye.