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whats the latest in autoimmune r
Podcast, Provider Interviews

What’s the Latest in Autoimmune Research and How Can You get Involved? Ep 104, Arthritis Life Podcast

September 22, 2023
54 min read
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Summary

Cheryl and her guests, Dr. Buckner and Dr. Mikacenic from the Benaroya Research Institute, discuss the latest in autoimmune disease research and highlight how patients can get involved. 

Rheumatologist Dr. Buckner emphasizes the importance of early diagnosis and reassures patients that, although there might not be a cure yet, advancements in treatments have significantly improved the quality of life for individuals with autoimmune diseases. She highlights the crucial role of patients in research partnerships, where their input and participation are highly valued, leading to better understanding and management of these conditions.

Dr. Mikacenic emphasizes the importance of viewing the patient-researcher relationship as a partnership. She discusses the potential benefits of participating in research studies, not only in drug trials but also through donating samples and providing clinical information. 

Both doctors express optimism about the future, believing that a cure for autoimmune diseases is possible with the rapid growth of knowledge about the immune system and targeted treatments on the horizon. They emphasize the significance of teamwork between patients, caregivers, and researchers, fostering hope and improving the lives of those affected by autoimmune conditions.

Main Themes of the Conversation

  • Autoimmune Disease Research and Treatment: The conversation emphasizes the importance of ongoing research and advancements in the treatment of autoimmune diseases. The speakers discuss how research has led to improved treatments and therapies.
  • Early Diagnosis and Screening: Dr. Buckner mentions the significance of early diagnosis and screening for autoimmune diseases. They discuss the potential to identify individuals at high risk and intervene before the diseases progress.
  • Patient Engagement: The importance of patient engagement in research is highlighted. Both speakers stress the value of patients participating in studies and clinical trials, emphasizing the partnership between patients and researchers.
  • Quality of Life: The goal of improving patients’ quality of life is a central theme. Dr. Buckner mentions that a successful outcome is when patients no longer wake up thinking about their condition and how treatments aim to achieve this.
  • Empowerment: Cheryl and the speakers discuss the empowerment that comes from understanding and actively participating in one’s healthcare. They encourage patients to take an active role in managing their condition.
  • Acceptance and Hope: Cheryl shares her experience with acceptance and hope, emphasizing the importance of finding joy and meaning in the present moment while holding hope for future advancements and cures.
  • Partnership in Care: Both speakers stress the collaborative nature of the doctor-patient relationship, where patients are encouraged to make informed choices about their treatment.
  • Advocacy: Cheryl mentions the importance of patient advocacy, drawing parallels between participating in research and engaging in legislative advocacy to improve healthcare access and outcomes.
  • Personal Stories: Personal stories and anecdotes are woven throughout the conversation, adding a relatable and human dimension to the discussion.

These themes collectively convey the message of hope, empowerment, and progress in the field of autoimmune disease research and treatment, highlighting the importance of collaboration between patients and healthcare professionals.

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, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Dr Jane Buckner, MD

Benaroya Research Institute (BRI) President Jane Buckner, MD, has been an investigator with the institute and practicing rheumatologist at Virginia Mason Medical Center in Seattle since 1999. Her lab at BRI focuses on better understanding immune system diseases such as rheumatoid arthritis, lupus, Type 1 diabetes and multiple sclerosis — and making discoveries that support better therapies and cures for these diseases. She is also currently an affiliate professor of medicine in the division of rheumatology at the University of Washington, an affiliate professor of immunology in the UW School of Medicine, and an affiliate of the UW Diabetes Research Center. More information can be found here: https://www.benaroyaresearch.org/about-bri/faculty-scientific-staff/jane-buckner 

Virginia Mason – https://www.vmfh.org/find-a-doctor/m/franciscan-medical-group%257cvirginia-mason-medical-center/rheumatology 

Dr Carmen Mikacenic, MD

Benaroya Research Institute (BRI) Associate Member Carmen Mikacenic has been an investigator with BRI since 2020. She is also a practicing pulmonologist at Virginia Mason Medical Center in Seattle whose areas of specialty include treating patients with lung complications of autoimmune disease. Her research at BRI involves a focus on these complications with the ultimate goal of finding new therapies for patients with inflammatory lung disease. Additionally, Dr. Mikacenic has recently been named director of the Federation of Clinical Immunology Societies’ Centers of Excellence Committee, where she will oversee and bring together investigators studying diseases of the immune system in the greater Seattle area. She is also currently a clinical associate professor in the division of pulmonary, critical care and sleep medicine at the UW. More information can be found here: https://www.benaroyaresearch.org/about-bri/faculty-scientific-staff/carmen-mikacenic  

Cheryl Crow

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:

TO PASTE

Episode 104

Interview between Speaker 1 (Cheryl Crow), Speaker 2 (Dr. Jane Buckner) and Speaker 3 (Dr. Carmen Mikacenic)

Cheryl:  00:00

Today to have not only one but two doctors and autoimmune researchers here on the Arthritis Life podcast, Dr. Mikacenic and Dr. Jane Buckner. Thank you so much for being here!

Dr. Buckner:  00:13

Thanks for having us.

Cheryl:  00:15

Yeah. Can you both just really quickly tell me — how about Dr. Buckner first — where do you live, and what is your relationship to arthritis?

Dr. Buckner:  00:24

Sure. I live in Seattle, Washington, and I’m a rheumatologist. I’ve been practicing rheumatology now for almost 30 years. And so, I, over that time, have gotten to know many, many people with arthritis and been involved in their care.

Cheryl:  00:41

That’s incredible. Thank you for continuing in this field. I know burnout is at an all-time high. So, we appreciate anyone in rheumatology. And Dr. Mikacenic, what about you? Well, I know I know where you live. But for the audience, where do you live, and what is your relationship to arthritis?

Dr. Mikacenic:  00:57

I live in West Seattle for a while, the unintentional island. And I actually grew up in West Seattle. And my relationship to arthritis, I’m actually a pulmonologist. I’m a lung doctor. And actually, my specialty within lung disease is seeing people who have autoimmune diseases like rheumatoid arthritis who develop lung disease, which can be a pretty significant and serious consequence. So, that’s where I see patients in this realm and really feel strongly about, you know, trying to figure out things to improve that. 

Cheryl:  01:30 

Yeah, that’s wonderful. And yeah, that’s one of those things that you don’t realize when you get diagnosed with something like rheumatoid arthritis. A lot of times as a patient, you know, I’ll say myself, focus so much on the joints because you kind of fixate on this word ‘arthritis’, you don’t kind of understand till you’ve had it for a while or till it kind of progressed, that it, oh, wow, this affects my whole body, not just my joints. So, I’m going to stop myself from like asking you a million COVID-related questions. Because I know that — well, maybe that’ll be another episode. But I love learning, you know, before we’re going to delve today into, like, the latest research being done in the autoimmune space, which is just very exciting and why patient engagement and research, you know, is important. But first, I always like to hear, you know, how and why did you choose — Dr. Buckner, first — why did you choose to become a doctor and researcher, and specialize in autoimmune?

Dr. Buckner:  02:26

Yeah. Well, I, you know, it’s an interesting question. We all have different paths to our career. And I was really interested in science. And that interest in college actually became one that I was very interested in biomedical research. So, I went to medical school, and I had no focus on arthritis, per se. But I had the really good fortune of doing a rotation and taking care of patients with arthritis, particularly patients in the hospital with really serious diseases like systemic lupus. I found those patients fascinating. Also, I was really engaged with them, and how they managed their chronic diseases. And also, the fact that these diseases affect your whole body made it particularly interesting to me. So, when I went on through my medical training, I focused more on the rheumatic diseases, including rheumatoid arthritis, and found that that was an area where that had so many questions that needed to be answered. And there was so much need for patients with rheumatoid arthritis, lupus, and other autoimmune diseases, that kind of became my ambition and my life’s work to understand these diseases so that we could actually treat them better. And as we’re going to talk about at the end, could we prevent them and cure them.

Cheryl:  03:55

That’s so exciting. And I’m always just grateful that anyone chooses this field, because I would find it very overwhelming myself if I was having to do the biomedical side and the research side. And what about you, Dr. Mikacenic, Carmen?

Dr. Mikacenic:  04:11

Yeah, I think quite similar to Jane, I was always really interested in science, and that definitely developed when I was an undergraduate. I think the immune system is fascinating. I mean, it’s sort of like a, I don’t know, at its simplest level, I think of it as ‘Us versus Them’, you know, our immune system against the world. And so, I think that’s just a really interesting dynamic. I also think the lung is a really cool organ. I mean, it interfaces with our environment constantly, right. I mean, we have summer season where we have smoke and we’ve got to manage that and, you know, all these different things that we come across. So, I think that’s sort of what drew me to the lungs specifically. And research is one of those things where when I see patients, I really have a hard time just not Understanding why or not trying to understand why we have patients with the same disease who have different manifestations in their lungs. So, you can have rheumatoid arthritis and have different things happen to your lung and why that is, we don’t understand that. There’s just so many questions and a big need. And so, I think I’m really driven to try to help understand some of those why’s.

Cheryl:  05:24

I mean, that’s incredible. You just, like, literally blew my mind when you said how the organ, or the lung is connected to our environment. I don’t know why I didn’t think about the fact that it’s just air. Yeah, that’s amazing. And I remember, in eighth grade, when they brought, for the drug education, they brought to our school two lungs. Like, a lung of somebody who was a longtime smoker, and a lung of somebody who didn’t. And that really left an impression on me personally. And so, but, you know, we can’t always — we can control our choices like smoking, but we can’t always control some of the environmental exposures. But anyway, so, I would love to hear from from both of you just, you know, taking the 20,000-foot view about what’s some of the latest research in the autoimmune disease space that people with rheumatoid arthritis or other rheumatic diseases might be really interested in?

Dr. Buckner:  06:22

Who would you like to have start?

Cheryl:  06:23

Oh, why don’t you go — we’ll go on the same order?

Dr. Buckner:  06:27

Yeah, I mean, I think, you know, one of the things to think about is what’s really exciting now. And as I said, I’ve been doing this a long time, and the progress we’ve made in understanding these diseases is incredible. And the rate at which we’re making discoveries is amazing to me as things I wouldn’t have imagined 10 or 15 years ago. But one of the things we know about autoimmune diseases, particularly arthritis is that they are diseases that are multifactorial. There’s, you know, we know that they run in families. So, there’s genetic risk. And we’ve been trying to understand that over the last 20 years since we sequenced the genome. We also knew there were environmental factors. And that touches on what Carmen just talked about, that there were some other triggers out there, because not everyone in the family, not even identical twins all get these diseases. What I really think is exciting right now is that we’re finally getting more of a handle on understanding how environmental factors are driving diseases, and actually how they influence the way our genes are being changed by the environment in a way that leads to some of these diseases. And we could have never done that without a couple of things. One is we had to understand the genome. We had to develop tools to actually understand how the genome is controlled. And then, we have to start studying human beings and their environmental factors. And that takes a lot of work. And we’re finally doing that in a way that can help us look at people at high risk for a disease and what happens to them over time that maybe causes the disease or causes flares of the disease. So, I think we’re at an exciting pivotal time of integrating our understanding of genetics and the immune system, but how the environment is contributing to that.

Cheryl:  08:31

That’s really exciting. And then, just for the audience, when you say environment, do you mean just things like smoke? Or do you also mean, like, let’s say, in capturing like a virus or something? 

Dr. Buckner:  08:43

Absolutely. That’s a great question. When I mean environment, I mean the viruses you may have been exposed to. There’s some exciting data in that realm right now, just in the last several years. Your microbiome, those, you know, bugs that live on your body and in your gut that aren’t causing trouble, but are actually interacting with your body and your immune system. But the smoke we know, smoking itself can increase your risk of rheumatoid arthritis twofold. And then, what we eat and how much sunlight we see; all sorts of things are the environment. And I guess getting a handle on that and being able to start to dissect that is something I’m really excited about, and that will bring us so much more knowledge and ability to help patients in the future.

Cheryl:  09:33

Yeah, that’s wonderful. What would you add to that, Dr. Mikacenic? 

Dr. Mikacenic:  09:40

Well, I think, I mean, Jane, no, you’re fine. I think Jane really highlighted some of the interesting things that are important to the field right now. One of the things I think about a lot is there’s sort of two stages, because of some of these factors Jane mentioned, and one is sort of prevention versus treatment. And I am hopeful that really kind of big picture wise, we’ll do a better job of having biomarkers or other clues where we can develop better ideas of who to predict will develop certain diseases, and then be able to intervene, I think that that’s another potential big area.

Cheryl:  10:22

Yeah. And along those lines, I know something that I keep hearing about being thrown around is the idea of like precision medicine. I guess it relates exactly to what you’re saying. But also, once you’ve predicted who’s gonna get it, or you know who has it, predicting which medicines will work best. It does sometimes feel like we’re throwing darts at the dartboard once you’ve failed one or two. Like, I’m on my fifth biologic right now and 20 years. I remember talking to my rheumatologist and like, in the beginning, it was like in 2003, it was like, “Okay, we’re starting you on a TNF inhibitor,” you know, this is this what’s available after methotrexate. And then, as the years, like, it’s like, ‘if this, then this’ little decision-making chart, you know, like they have from the American College of Rheumatology. But once you get further down the chart, it’s like, you’re trying to beat time, you know what I’m saying? Like, there’s not as much data of like, if you fail a TNF inhibitor, and then you fail Orencia, and then another one, then do you do the JAK inhibitor, or all that stuff? So, I’m sorry, I’m like, kind of word salad here. But do you think that we’re gonna, we’re on the way, like, in the next 10 years, to really have a better idea of who’s going to do better on which medication?

Dr. Buckner:  11:34

You know, you raise a central point, Cheryl. This is my clinic. And this is the big issue my patients face and I face as one of their doctors. I think it’s really important. And it’s one of the things we are focusing at at the Benaroya Research Institute is this concept of trying to find the right drug at the right time. And that means we need to start focusing on understanding how patients differ in how they respond to drugs differently and when to use them. And so, that’s an area of research that I think many of us in the field are very focused on. And then, it also gets us to this question that was just raised about prevention, because that is going to change the game, we think, in terms of allowing us to stop progression of disease before you get into that cycle of having to change drugs all the time. And there’s new studies that are being done both in type one diabetes, where we’ve seen quite a bit of success, but also in rheumatoid arthritis very recently, suggesting that we may be able to intervene early enough to prevent progression. So, that’s where a lot of excitement — a lot of my excitement, and I think the fields excitement — is right now.

Cheryl:  12:55

That’s wonderful to hear. Yeah. And that gives people a lot of hope, you know, because sometimes people get really scared if the first or second medicine they try doesn’t work. And sometimes, I’ll just remind them, you know, we don’t — or I’m not a doctor, but I’ll say something like, you know, typically, like, there isn’t a perfect way of predicting which one’s going to work for you. But there are a number of people who the first couple classifications of meds that they tried didn’t fit their body, right, for whatever reason, and then the third or fourth one is like the home run, you know, and works for 10 years or something. So, there’s reason to still have hope, you know.

Dr. Buckner:  13:35

Well, absolutely. I mean, I think, as you’ve stated, that that’s the story I, you know, I’ll talk my patients through when I start, then. I’ll say, “I can’t guarantee this is going to work for you. But if it doesn’t, we’ll move on to another drug. And we have a lot of options.” That’s what’s wonderful about practicing rheumatology today. When I started, it was before we had TNF inhibitors, so that was a very different world. My waiting room had wheelchairs in it. It doesn’t anymore. And that’s great news. But it still seems silly to me to have to basically say, “I’m guessing what drug to give you.” And my goal and the goal of the other scientists is let’s not guess anymore. We need to be able to say what drug’s the right drug for you before we just try it out. So, that’s the goal. I think we’re getting, we’re moving towards that.

Cheryl:  14:28

That’s super exciting. Yeah. And yes, speaking of that, speaking of what we’re moving towards, so you’re both at the Benaroya Research Institute. I’m sorry, I didn’t say that initially. So, and the Benaroya Research Institute is an amazing place just in my backyard here in the Seattle area, and you’re researching all sorts of conditions, including rheumatology, rheumatic diseases. And so, I’m really curious about Dr. Mikacenic’s HIPC-RV clinical study — don’t tune out, we’re gonna explain what that acronym is — and figuring out such a practical issue, which is literally how do people with rheumatoid arthritis respond to the common colds, like upper respiratory infections, which I’m so excited. Like, I feel like it’s 2023. We’ve put a man on the moon, like, how do we not know about the common cold and whatever. But anyway, so can you tell, you know, you’re studying people with rheumatoid arthritis and without, can you tell me a little bit more about this? What are you learning? And is there anything patients can do to get involved?

Dr. Mikacenic:  15:41

Yeah, I’d love to tell you about it. So, HIPC-RV is Human Immunology Project Consortium – Respiratory Virus. So, our study is one of a few studies around the country that was funded by the National Institutes of Health. But what we are focusing on is how people really do respond to the common cold. So, we know that people with rheumatoid arthritis can have, again, we talked about these environmental influences that might affect their disease progression. And we believe some of this happens at the lung surface and mucosal surface. Jane said when people smoke, we know that increases risk times two, right. So, we think something’s happening at the level of the lung with the way the immune system starts to recognize itself rather than a virus for instance. And so, what we’re doing is we’re monitoring people’s responses, their immune responses, before and during a cold and after, by doing simple things like nasal swabs. But it’s amazing what we can do with a nasal swab, because we can detect the exact viruses, we can detect your immune response, how your cells are responding, we follow things in the blood to see how your bloods responding to the virus, but actually how your blood is also responding to self, or these auto-antigens people develop in rheumatoid arthritis. And we think that by having that before, during, and after, we’re going to really understand how the immune response may change over the course of that infection. And we’re comparing people who are on TNF inhibitors or not to see how that might influence your response to the common cold, because obviously medications can have some effects on how your immune system might respond to these viruses.

Cheryl:  17:26

That’s so exciting. Is that something people can enroll in from anywhere? Or do you have to be in the Seattle area or, you know, local-ish?

Dr. Mikacenic:  17:35

So, we collect our samples here at Benaroya Research Institute, First Hill here in Seattle. Certainly, our participation is open to anyone who would want to be involved. Several — there’s a few in person visits, but some of the nasal swabs and such while people are feeling unwell, they can collect at home. So, we’re really encouraging anyone with interest to join. We do have a link on our website that people can email us if they have any interest, and we can, you know, go back and forth and determine if they’d be a good fit for the study.

Cheryl:  18:10

That’s so exciting. I think I’m gonna sign up.

Dr. Mikacenic:  18:13

Please do.

Cheryl:  18:15

Great. Yeah. Is there anything, Dr. Buckner, you’d want to add to that particular study? 

Dr. Buckner:  18:22

But, you know, what I think is exciting is this, is a chance to bring questions that, across the country, people have been asking about viruses and how they impact how people respond to them. And Carmen’s study is taking it straight to rheumatoid arthritis, where we’re going to look at the impact with people with rheumatoid arthritis, and also how their lungs are functioning, which is, I think, understudied and under understood, but very, very important thing about people’s health who have rheumatoid arthritis. So, we’re really excited about it, really excited about partnering with patients who have rheumatoid arthritis as part of this study. It takes all of us to actually do this work.

Cheryl:  19:08

Yeah, and I think one of the, yeah, a lot of people when they first start their medications for rheumatoid arthritis are worried about the warnings on all the medications about, you know, you’re gonna — this might increase your risk of, increase your risk of infections. I’m laughing, I’m having a smile on my face because I feel like I’m always hearing that commercial where it’s like, “Tell your doctor if you’ve been to a region where certain fungal infections are common,” like, which fungal infections, I don’t even understand. But, anyway, but you know, there are, people are concerned, right, about getting sick more often. Or, and I remember Dr. — I’ll say her name, I’ve already talked about her before — Dr. Gorman, who is my rheumatologist. She’s amazing. She said that, you know, it’s been really surprising to her over like, you know, a little over 20 years of being a rheumatologist, that a lot of her patients don’t tell actually get really, really sick even though they’re on these immunosuppressive therapies. And it’s kind of like when you’re pregnant — when I was pregnant, it was like, the risk of a uncontrolled disease flare up sometimes outweighs the risk of being mildly immunosuppressed on your medication, right. So, it’s kind of like your immune system is out of whack because of your RA, and you’re taking the medicine to calibrate your immune system more normal, to function more normally, but it’s hard for people to wrap their head around, because they’re like, “Uh oh, I don’t want to take this medicine because it’s suppressing my immune system,” you know.

Dr. Buckner:  20:41

I like the way you put that in that your immune system is out of whack, that’s why you have an autoimmune disease. So, it’s these drugs that are helping us get it back into the right place. And that’s, I think, maybe a helpful way for patients to think about these drugs when they’re fearful. You know, we obviously have to be careful and be aware of risks. But you’re right, not doing anything itself is a problem. So, you’re right, control is important.

Cheryl:  21:16

It’s like you have — I almost think of it as like it’s too much of a good thing, you know, your immune system has created way too much, you know, antibodies that are then misguided and then attacking your own, you know, previously healthy tissue. And so, you have to make too much into a smaller amount. It seems, it is logical, right? You’re like, okay, I’m gonna make it back to the normal amount, I’m gonna suppress some of the extra ones. But I think, yeah, medication hesitancy, just from a psychological perspective, is really fascinating to me. And I know I’m going off on a tangent, but it’s such an important one. Because, you know, I think, and this is me being on social media a lot, too, I see so many people being so scared to take medicines and having this kind of bias towards natural methods. And it’s almost like, it’s so important. I feel like I’m like a historian, like, telling people like, just like you were saying, you know, you were practicing for 30 years, like, you don’t understand how lucky we are to have these medicines, you know. I’m so sorry. I’m just going on my soapbox. But, you know, I think that, you know, the best advice I actually saw for medication hesitancy was from a nurse practitioner at the American College of Rheumatology conference. She said, you know, I tell my patients, think about starting a new medication like dating, not a marriage. You’re just, it’s gonna be out of — if it doesn’t work, well, it’s going to be out of your system. It’s not like a tattoo, you know, where you’re stuck with it forever. So, just see. And so many patients will come up to me, and because I’ve done little videos, you know, saying, just a different perspective, I’m not saying that you should or shouldn’t take medicine, that’s your choice, but you should have an informed choice that is not just biased towards natural methods only. And they’ll say, yeah, like, “I was so scared to take the medicine. I finally took it. And within like, two weeks, it was like, I could open my hands up, and I could, you know, function in my life. And I was so — I actually regretted not starting it earlier.” Anyway, do you hear that story a lot in your clinical practice?

Dr. Buckner:  23:25

You know, I’m quite sure Carmen has come across this as well, I really saw a lot of that probably about 10 years ago, there lot of hesitancy when we first introduced the biologics, and some patients even waiting a couple of years before they would start a drug like a TNF inhibitor. And then, they’d have permanent disability because we couldn’t reverse the progression. I see less of that today. And I think, although some people still are a little reticent, I think there’s more and more of an understanding that intervening early really means that you will do better long-term. And I do point out to patients that before we had these treatments, life expectancy in patients with rheumatoid arthritis was 10 years lower than everyone else’s. So, it wasn’t a benign thing to live with active rheumatoid arthritis. So, I see people accepting it more. There’s always hesitancy, but I think you’re explaining it really quite beautifully and why it’s important.

Cheryl:  24:33

Yeah, and I think, I always tell people, you know, for me, it’s easier for me, I can speak personally, right. Because I want to be really careful not to give people medical advice. You know, even thought I’m an occupational therapist, but even as an OT, if I was in a one-on-one interaction, I never — it’s way out of my scope to give someone medication advice. But since I’m a patient, I can kind of be like, my perspective is, you know, the enemy is the disease, not the medication. Yes, the medication, you know, the disease is, like you said it’s progressive by nature, right, for some people it progresses faster, some slower. And it also reduces your lifespan to, like the timeline on the study, like 7 to 10 years if not controlled. So, you know, why not give yourself the best chance. And again, it’s easier — some people say, well, you’ve had good response to medication. So, maybe I’m a little biased, but I think the data supports the medication. So, but anyway, it’s just, yeah, I think you do get a biased sample on social media, because there’s so many people out there that are peddling natural cures and methods that are — so, I’m glad to hear that in clinical practice, you really do see more of a random sample, right. You’re seeing whoever got diagnosed. The only, the non-randomness is the geographic part. But otherwise, you’re seeing a good cross section. And Dr. Gorman pointed that out to me, too, that there’s sometimes there’s like a silent majority of patients that are just — I tell people that I know people who I know from swing dancing who have RA who just started methotrexate. That alone is controlling it,. They’re on their merry way, living their life. They’re not posting about rheumatoid arthritis all the time, because it’s not dramatically affecting their life. But anyway, back to the research. So, you also have a study on predicting and preventing type one diabetes, which people listening, they might not know, that is an autoimmune. Type one is the autoimmune; type two is the type that can be, you know, reversed through — would you say reversed? Or, you know, managed through, you know, through weight loss, and diet, and stuff.

Dr. Buckner:  26:39

Yeah. Well, I’d be happy to talk about that. And it’s important. So, I’m a rheumatologist. And one of my passion is studying and treating rheumatoid arthritis. But I have spent most of my career also studying type one diabetes. So, as you said, it affects younger aged people, and it’s an autoimmune disease, where you’re no longer able to make insulin once it becomes established, so you have to take insulin externally every day. And it’s a little different than type two diabetes, which you can manage through medications and diet. Why am I studying type one diabetes is one question. And the reason is that the genes that are linked to the risk for rheumatoid arthritis are the same as the genes in type one diabetes. And in fact, I’ve now met so many families where mom has rheumatoid arthritis and their child comes in with type one diabetes. And so, understanding that link is really important, because it helps us understand what drives both diseases. And also, if we find treatments for one, we can apply to the other. So, what’s exciting about type one diabetes is that over many years, and the work of many families, patients, providers, and scientists, we can now predict who’s going to get type one diabetes. And that’s because we can identify antibodies in genes that, if they’re there, indicate that you will, at some point, get type one diabetes. And in fact, we can predict your rate within two years. That’s not helpful unless you have something you can do about it. But what that has allowed us to do is do clinical trials with medications to see if we can delay or even prevent that. And so, groups, particularly a type one diabetes trial that my colleague, Carla Greenbaum, here at BRI was leading that group at the time, they did a study with a drug called Teplizumab. That drug delayed the development of type one diabetes in children and younger adults for up to two years. We think it may have cured some people. And what’s so exciting is that the FDA approved that drug to prevent type one diabetes last November. So, that’s the first drug ever to be approved by the FDA to prevent an autoimmune disease. And that seems pretty radical. These people don’t have diabetes yet, but we’re gonna give them this medication. But if we think about it, it’s not that radical. Because we do this all the time in medicine. We know that having high blood pressure puts you at a high risk for getting heart attacks and stroke. Well, so we call high blood pressure ‘hypertension’, and we treat high blood pressure with medicines. And in that case, we know within five years, 3% of people we’re treating would be at high risk for a stroke or a heart attack. And type one diabetes, we can now predict within five years that are within two years 50% of people will have diabetes. So, preventing is something we’re used to. We treat cholesterol; we treat high blood pressure. The time has come for us to predict who’s gonna get autoimmunity and treat it. What’s really exciting is in rheumatoid arthritis, we also know the markers that predict disease and we are already starting to do trials to try to prevent that disease. So, families where rheumatoid arthritis is present, we would screen those people and start trying to prevent. So, type one diabetes kind of has been out in the lead, but it’s shedding a light so that we can start thinking about this in many autoimmune diseases, including rheumatoid arthritis.

Cheryl:  30:31

That is incredibly exciting. And I will admit, you know, despite being so involved in the rheumatoid arthritis world and doing so much, you know, research on my own and such, I was totally blindsided when I got gestational diabetes, because I actually didn’t realize gestational diabetes is more like type one than type two. I was like, oh, I’m on track with like, my, you know, my weight gain and I’m eating — I wasn’t a perfectly, I was eating TacoTime’s tater tots all the time. [Laughs] But, you know, I was like, you know, I was shocked when I got gestational diabetes. And it wasn’t that hard to manage. Thank goodness, it was a pretty, I think, a mild case. I was able to manage it through, you know, dietary interventions and exercise, just making sure to exercise around when I would eat, and eating carbs. But I didn’t know that it was — I actually didn’t even know, I probably didn’t even know that type one was autoimmune back then. So, anyway, this is very, extremely exciting. And, you know, I had this — small side note, but related — I did a volunteer trip in Belize in 2004, a year after my diagnosis actually. And long story short, a fellow volunteer went into a diabetic coma, had no idea she had type one diabetes. She had been feeling really off the whole time she was in Belize, but she was thinking it was the weather. She was constantly sweating, hungry, craving sweets, thirsty, urinating. Like, “Oh, well, I’m in Belize, it’s the,” you know, and then she suddenly — anyway, it was horrific. She got misdiagnosed as having a panic attack. And then, they gave her steroids for some reason in the ER there. And then, she had gotten — by the way, get emergency travel insurance. She got a $40 emergency travel insurance that covered a $20,000 at the time Medivac medical airlift airplane for her to go from Belize City to the University of Chicago Medical Centre, and she ended up getting treated and everything so.

Dr. Buckner:  32:36

And the point, I think, one of the points that we’ve learned now that we can screen for people at high risk for type one diabetes and identify them, we’ve been able to clearly demonstrate that we’re avoiding those kinds of outcomes. People are aware that they’re at risk, so they don’t go in to this really severe, life-threatening situation. So, I think that’s part of the good news of being able to predict these diseases and that should happen less often once we start doing this in the clinic.

Cheryl:  33:09

Well, I know people listening, a lot of them have a, you know, rheumatoid arthritis or similar. They’re like, wait, how do I get screened? How do you know? Is there a way that you can ask your doctor to screen you now for the genes to develop type one? Or how do you do that?

Dr. Buckner:  33:24

You know, that’s just being developed. And we’re working hard here at BRI to be part of that and develop national screening that is in primary care. I think you’ll be seeing that within the next year or two become available now that we have a drug, and it makes sense to screen people, because we can treat them. We have to put a few things in place clinically. So, people should keep an eye out for that and ask their primary care provider and pediatricians if they’re in a risk group.

Cheryl:  33:59

That’s really good. I know that I get my A1C — A1C, is that what it’s called? The blood, because of having gestational diabetes makes me — and RA, now I know — it makes me more likely to develop type one. They screen that every so often to make sure it’s not out of whack. So, I mean, even if you didn’t have a medication for it, just knowing it then you would know the signs, right, that you would know what to look for. Because so often, these signs, they don’t seem so severe at first like excessive thirst, and urination, and craving sweets, and being irritable and stuff. You’re like, oh, you can always, you know, say those were just from randomness, or it’s the summer, or whatever. So, that’s really exciting. And I want to move on to — we actually have a schedule here. I’m keeping myself, trying to keep myself, too. So, I’m on the website for the Benaroya Research Institute, BRI — you’ve heard us use that acronym — is to predict, prevent, reverse, and cure diseases of the immune system. So, you are like, going for gold. Like, let’s be ambitious. Let’s not just stop with predicting and preventing, let’s reverse and cure. But, you know, I know that — I will relate back to my social media advocacy before — I tell people sometimes, be careful about anyone who is telling you that they have the cure, like, today, right. So, this is not to say there is a cure right now. But do you think there’s going to be a legitimate, you know, cure for diseases of the immune system? Like, let’s say, in my lifetime, like, I’m 41, about to turn 42. So, in the next, like, 40, 50, 30, I don’t know when I’m going to live to, years? Crystal ball time, which one of you wants to take that one first? 

Dr. Buckner:  35:52

Carmen, do you want to start? 

Dr. Mikacenic:  35:54

I’ll wind it up, or do you want me to start? 

Cheryl:  35:59

That’s the forty-thousand-dollar question.

Dr. Mikacenic:  36:01

Yeah, I think that is a really challenging question. But I really do think that a cure is possible. I think we’re starting to really get a better sense of why the immune system is doing what it’s doing. And really, to cure something, you have to know why the immune system is doing what it’s doing to be able to kind of reverse things, right, or to make it go away completely. I do think that’s where studying the immune system in humans is really important, right. Because we’re unique. And that’s why we develop large cohorts of patients here, so we can study these things in detail. I completely agree with you. There’s no cure right now. But, you know, for instance, I think one of the things we’re seeing with lung disease is that, you know, we are seeing sometimes fewer people with lung disease with rheumatoid arthritis. And is that because we’re intervening earlier with different medications? You know, I, in some ways, consider that a cure, because I’m not seeing the problem is much, which I think is amazing. So, that’s sort of my two cents. I do think it’s possible. But I do think that developing the underlying knowledge is really the critical piece. 

Cheryl:  37:17

Yeah, that completely makes sense, that we’re understanding the immune system so much better. And we have to complete that understanding maybe before developing the cures. What about you, Dr. Buckner?

Dr. Buckner:  37:28

Yeah. So, you know, as I said, I’ve been doing this a while. And if you’d asked me if we should put the word cure in our mission 10 years ago, I would have been very reluctant. But 5 years ago, when we thought about our mission, and we really thought deeply about this, and I think we can get there. And not only, I think we, I’m hoping we do it faster, Cheryl, than in the next 40 years. So, and maybe that’s because I’ve been doing this a while, and I’m getting impatient. But the reason I think we can do that is because of the accelerated rate of knowledge that we have about how the human immune system works, both in health. That’s something we think is really important to study. Because our job is to get one that’s out of balance back into balance so it looks healthy. And I think we have the tools to answer those questions. I think we have the first glimmers of hope with the early studies showing prediction and prevention. If we truly can predict and prevent, we can eliminate these diseases. You just won’t see them anymore, so we won’t have to hear them once they’re established. But I also, we’re seeing new forms of treatment that I think have the potential to do better than what we’re doing now. Treatments that are targeted specifically to the disease, to the tissue that’s being attacked by your immune system, not just blanket suppressing your immune system, which we’re currently doing with any of our drugs. So, I am very hopeful. We can’t cure these diseases yet. But I think if we work together — and together I mean, you know, scientists working together and collaborating; collaborating with doctors, patients, patients’ families, and our broader community, and getting support from the government to this research, all of that together, I’m really hopeful. I think we have the tools in hand. That’s going to take time and commitment to do it.

Cheryl:  39:40

That’s extremely exciting. I honestly didn’t even really think to hope for that in the sense like, I think this is going on way to the mental health side of things. But, like, I really practice this approach called Acceptance and Commitment Therapy, also known as ACT. I don’t know if you’ve ever heard of it, but it’s really helpful for me because it’s basically kind of like saying the null hypothesis, right, is that things won’t change. So, it’s like, can I accept and calibrate my expectations to my reality currently, in a mindfulness sense, and also in a sense of like, you know, can I tolerate and make space for the present moment and find joy and find meaning and purpose in my life now, if nothing else changes, or even if it gets worse? And that kind of gives you that confidence to say, okay, expect the worst, and then prepare for the best, right. And then, when things go better than expected, you’re pleasantly surprised versus kind of hanging all your hopes on a brighter future that might not never, you know, might never come. But it is definitely, I think it’s possible. I’m stubborn in this way. But I think it’s possible to kind of open up to acceptance of whatever is going on in the present, while also having hope for the future.

Dr. Buckner:  40:52

So, and I think that’s a wonderful way to think about living with arthritis. And it’s what I admire about my patients when they’re able to do that so well. And in fact, I would say to them, their job is to do that. And my job is to try to fix it. So, you know, I need to take it to the lab, and I’m inspired by them. I think you’re absolutely right about, as a patient, how you need to live your life as fully as possible. And Carmen and I need to keep pushing ourselves to change that reality.

Cheryl:  41:28

Yeah, no, and that’s, I mean, we need both, but we need a multi-prong approach. Yeah, and I think this kind of leads — I’m sorry, did you want to say something else, Carmen?

Dr. Mikacenic:  41:40

No, no, that was just, yep. I agree. 

Cheryl:  41:43

Or disagree, yes.

Dr. Mikacenic:  41:44

Wholeheartedly. 

Cheryl:  41:46

Yeah, no, and I think that’s a whole, you know, it’s very, I’m very fascinated by, you know, acceptance kind of being a sounding — it sounds like a bad word at first, right. But long term, it’s really helpful, I think, for me to, it’s been helpful for me to really work on accepting the present moment. And find, again, find joy in the present, even if there’s some pain, you know. And it’s really, I think a lot of people are scared to do that. It’s almost, in that kind of almost a denial sense. Like, “No, no, it’s about to get better, it’s about to get better,” you know, put your life on hold for, you know, and you can keep doing that for years. I finally went to therapy for the first time ever when my son was one year old. And I told, one of the first things I told the therapist is, “I think I might have some sort of postpartum mood thing and doesn’t really feel like depression, because I’m not sad, but I’m like, irritable and anxious all the time. And I don’t feel like myself. And like, I don’t know what to do,” you know, I don’t know how to — oh, are you feeling like loss of pleasure in things you formerly found pleasurable? I don’t know. I’ve never had a baby before. So, I can’t compare this to anything like this. It’s like, every question you asked me is impossible to answer. But she, you know, was like, I can’t tell. I said, I feel weird because like, my baby’s not a baby anymore. He’s almost, like, an infant. Like, is this postpartum depression? What is this? And she’s like, I cannot tell you. I think he was 13-months-old. And she’s like, I can’t tell you how many people come here, right after the baby turns one, because it’s like everyone’s told themselves just to make it through the first year, just make it through the first year and it’ll get better, and they make it through the first year it doesn’t get better. And so, they’re like, okay, now I need help. I think that’s the same way like I put my, I put everything on hold, like, okay, I’m just gonna figure out the first year and get through this and then everything is gonna get better, and then it didn’t get better. And I think, so, you have to learn how to cope with whatever is happening in the present. But anyway, sorry, this like precious time to have you both here. So, I don’t want just talk about me because the rest of the podcast you can hear about me. 

So, in patient engagement and research, I think a lot of patients are — I’m going to project for a second, but I have donated my blood to the to Beneroya Research Institute with my son, and he got a compliment. I know, I still remind him of that anytime he’s had to get blood work, is, “Remember how they told you that you were one of the —” he was, I guess, one of the calmest little kid patients that they had had their collecting the blood, I was so proud of him. But anyway, you know, I’m fine to, to, like donate my blood. But sometimes I get nervous about the idea of like participating in an experimental drug because I’m like, “Oh, no, it hasn’t been approved.” So, can you bust any myths for anxious people like me who might be like, I don’t know about engaging in research, because I might, like, I don’t want to be like a, they call it like a lab rat or something like that, because it’s so important for us to participate. So, I’m saying like, that’s the wrong thing is to say that you’d be a lab rat. So, help me bust those myths. What would you say there was reluctant patients?

Dr. Mikacenic:  44:38

So, I guess the first thing I would say is that, I think, a lot of people when they think about research, think about drug trials, right? They think about I’m gonna get a drug or I’m gonna get a placebo. And we can learn really important things even without doing any intervention just by observing the immune system and how it changes like my study during respiratory viruses, right. So, I think that there is even participating at a level you’re comfortable with, in terms of like donating samples and those types of things, collecting clinical information can be really powerful for us. And I, you know, I was a — I have participated in BRI studies myself as well. I was in the Pfizer vaccine trial. I talked to my mom about it, I was like, I’m gonna go try this vaccine. I actually told her that time, I’m like, “I’m not sure if this is going to work, this mRNA thing. I’m going to try it,” and she signed up, too. I think the other thing too, is here, it’s, I felt very comfortable with the setup they have, you know, we have a really nice place where people can go. It feels almost like a clinic office. There are people who are dedicated to doing this kind of research, collecting blood, taking, you know, your first nose swab, or showing you how to do it for my study. And so, you’re working with people who are really experienced, and I feel like it’s a very comfortable environment. So, that’s what I would say.

Cheryl:  46:13

Yeah, that’s super helpful. What about you, Dr. Buckner?

Dr. Buckner:  46:16

Yeah, I think one of the things that has been, being a research participant, is that we as the researchers really see it as a partnership. And there’s a lot of caretaking and thinking about the participants, their rights, how their experience is going to be. The thing that surprised me over the years, particularly there are participants who either are in a drug trial, but also those that are giving us samples to study their disease, is how much they enjoy being part of that process, being part of helping to find the answers and, you know, having them thank me to let them be in the trial. And that’s, you know, we’re thinking we’re asking for their help, but it’s really a mutual thing. And so, I think there’s a lot of, I think, it’s really a good experience for everybody. And we certainly appreciate the fact that those participants, without them, none of this goes forward. We can’t do our work without a partnership with patients and their families.

Cheryl:  47:24

That makes so much sense. It really reminds me a bit of, like, the legislative advocacy piece in the sense that as a patient, sometimes you can feel there’s a little bit of a helpless feeling. Let’s say your insurance company is denying your medications. And you’re like, what can I do? Well, going, participating in advocacy, like going into Washington, DC, or writing to your representatives is something you can actually do to help the situation in the same way participating in research is something you could literally physically do that can help your own future as a patient. So, there’s very few other ways, you know, most patients are not also, you know, PhD or MD, you know, researchers, so they can’t necessarily — many of them are, but the majority aren’t. So, we can’t always like lead our own trial, but you could participate in a trial. So, or are in a study, not just a trial.

Dr. Mikacenic:  48:17

I would just add to, I mean, what you’re saying, I think is so true. And I think some of it is that it’s because it’s like an active choice, right. It’s a conscious decision someone’s making to participate in research, right. It’s a step forward. And they are deciding to take part in something sort of after considering hearing about the study. And I, similar to Jane, have so many people who participate in the studies who were actually really energized by the process, I think, in a way that they didn’t anticipate maybe even at the beginning. So, it’s really true.

Cheryl:  48:50

Yeah, it’s just that it’s a very empowering thing, you know, I think. And so, yeah, and I love your points about it being a partnership. I know some patients who are, you know, who have done lots of patient partnerships with even like the development of a research study. So, saying, okay, for example, my friend Eileen does a lot in Canada, and she, you know, kept telling the researchers, don’t forget fatigue, you know, this is when we’re looking at quality of life, like why are you only looking at pain, fatigue can be more debilitating than pain. So, those kinds of insights are so important to have the patients involved with, right. Because I think a lot of patients, again, if they don’t truly understand how systemic the disease is, they won’t even think to mention fatigue to their rheumatologist, you know. They’d just be like, oh, no, I’m just, you know, yeah, I’m tired, whatever, you know, I’m just gonna tell you about my joint pain. So, and then, we’re going to kind of start the wrapping up phase of this, although I would love to talk. Both of you are so eloquent and just passionate. It’s wonderful to talk. I feel energized talking to you. And do you, you know, one of my favorite questions to ask is like, what words of wisdom or advice would you give to somebody recently diagnosed with rheumatoid arthritis or ankylosing spondylitis, you know, or a similar condition? I’m sure both of you have had to do this in your clinical practice. So, maybe you have like an elevator speech? Or do you have just like a, anything you’d want to share? Even if it repeats what you said earlier, that’s fine.

Dr. Buckner:  50:23

Yeah. I’ve certainly, you know, have the opportunity to tell people their diagnosis of rheumatoid arthritis, or ankylosing spondylitis, or lupus many times. I think every individual is going to hear that a little differently. You know, I kind of tell them the bad news is, I can’t cure them. Hopefully, the good news is they don’t mind visiting me every three months. But you know, the thing is that we — the good news is that we can treat these diseases today. So, I think it’s important for people to get diagnosed, not to avoid the diagnosis. I know, we all want to avoid getting bad news. But getting in early, getting a diagnosis, because we can, in many, many cases really treat people to the point that, you know, my goal is that when they wake up in the morning, the first thing they think about is not their rheumatoid arthritis. And if I get there, then I’m really successful. And we do get there with some of our patients. And we definitely make people’s lives better with our current medication. So, treatment really has come a long way. It’s good to have knowledge about it so you can care for your body and keep it going well. And I always like to let them know that we’re a team and they’ve got other people on their side. They have the doctors, the caregivers of all types in the health system. And then, they have scientists who are behind the scenes trying to make the future even look brighter than it is right now.

Cheryl:  51:57

That’s beautiful. I think that putting it in such, like, practical terms, like the goal is for the first thing in the morning for you not to be thinking about the RA, that’s so — that’s totally congruent with, I remember telling Dr. Gorman like my definition of quality life is just that I’m not distracted by my condition. Like, it’s not something that has, it’s something that could, that comes up, right. But it’s not a constant. It’s not like a constant noise in the background, like pain can be, you know, a noise in the background that makes it hard to focus on your life, you know. But I think that’s beautiful. Especially because a lot of people with RA wake up with morning stiffness. So, you’re like, literally, I want you to wake up not feeling —

Dr. Buckner:  52:40

Absolutely.

Cheryl:  52:43

And that teamwork, yeah, is the goal. What about you, Dr. Mikacenic?

Dr. Mikacenic:  52:50

Yeah, so, I think, similarly, I think part of it is when you’re telling someone that news for the first time, it can be really overwhelming, right. And so, some of it is giving yourself an opportunity to pause. But also, I do put things in a positive light. I, you know, I have had the advantage of having some of these medications while I’ve been practicing, right, so we can do things for people to make them feel better. And I think, for me, you know, James talked a lot about the partnership for research, but it’s a partnership in their clinical experience, right. It’s about what they’re even wanting to try, what side effects they may have, how we have a dynamic relationship where, you know, they’re really deciding what’s best for them, and how I can help them by providing them with the right opportunities, choices, and those sorts of things. So, I think it’s a relationship, right. And that first visit’s probably the hardest, but some of it is that you developed a relationship and you work together over time to really get them in a better place.

Cheryl:  53:53

Yeah. And I mean, I’ve gone on record saying this numerous times. My diagnosis was a gigantic relief. I mean, I was elated. So, it’s not always bad news because I had been experiencing, you know, I call it accidental medical gaslighting. I don’t think that anyone actually was like, “Muah-ha-ha, I’m going to convince her she’s not sick, but I actually think she’s sick.” They legitimately didn’t think that I was sick. They thought I was a hypochondriac. And so, they kept saying, “You’re not sick. You’re just anxious. You’re just anxious.” And so, when I got this proof that I’m sick, and then my RA factor and everything was off the charts. I was like, I literally was like, thank freakin’ God, like, now they’re actually going to believe me. Because it was a horrific. I mean, the worst part for me was being undiagnosed by far, worse than anything, anything I’ve experienced during my condition. So, I get so riled up thinking about this, too. I’ve gone to therapy, like I told you, so. It was an unimaginable nightmare to feel like no one’s taking me seriously. It’s like, your house is on fire and the firemen are like, “No, it’s not.” What do you do? Who do you call when everyone you go to says that you’re just a hypochondriac because you can’t — it’s was horrible. So, I was like, thank you, oh, my God, there’s like a doctor — it was like a whiplash. Like, it’s like, you’re faking, you’re faking… Actually, you have this serious condition, and they’re acting so serious about it. I’m like, what? Like, all I care about is that you’re telling me that you believe me. I don’t even care what I have, like, just give me the medicine. So, anyway, that’s my story. But thank you both so much for your time. I know you’re both very, very busy saving the world, saving the autoimmune world. And I will share all your social media links and for Beneroya Research Institute in the show notes, and so people can know maybe where to find you and follow up on the latest and greatest. But thank you again so, so much.

Dr. Buckner:  55:55

Thanks for giving us the opportunity to share with you what we do. And it was a pleasure to hear your story as well. 

Cheryl:  56:02

Aw, thank you.

Dr. Mikacenic:  56:03

Yeah. Thanks for having us. This was really fun. And I appreciate everything you’re doing for the community, too. It’s really important. So, thank you for having us.

Cheryl:  56:11

Thank you both. And maybe we’ll have you on, not to put pressure, but maybe later on there’ll be a follow up on, you know, what’s latest and greatest in a couple more years. So, thanks again and we’ll talk to you later. 

Dr. Buckner:  56:25

Bye.

Cheryl:  56:26

Bye.

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