2022 Arthritis Research Highlights | Ep. 69

Host Rebecca Gillett talks to some of the rheumatologists and scientists about their work and presentations, as well as to other patients who participated. Hear about some of the research, treatments and trends that have emerged in 2022. Scroll down for show notes and full transcript.

Show Notes

The American College of Rheumatology’s annual scientific meeting attracts rheumatology practitioners and scientists from around the world to hear about the latest research, treatments and trends. Podcast host Rebecca Gillett was among the health care professionals and patients who attended. She spoke to a number of rheumatologists and others — including several who have been on this podcast before — who shared their insights on the year’s most impactful news in the field of rheumatology. 

In this episode, you’ll hear her discussions with updates about new ways of viewing and defining osteoarthritis (OA) that could help standardize research for new treatments. OA experts also talk about a new Arthritis Foundation trial aimed at helping prevent OA as well as studies exploring pain in OA and other medical conditions, like diabetes, that many people with OA also have.

Doctors and scientists she spoke with also talked about studies into why it takes to long for some types of arthritis to be diagnosed, how laws and court decisions can affect people with rheumatic diseases, reproductive guidelines for people with rheumatic conditions, and variables that may make some cases of rheumatoid arthritis (RA) not respond to multiple treatments, which is a focus on the Arthritis Foundation.

Rebecca also shares thoughts about the conference and some personal highlights with another occupational therapist/patient who attended and presented. And she describes presentations by a couple of patients who are also dedicated patient advocates and Arthritis Foundation supporters. 

About the Guests

Cheryl Crow, MOT, OTR/L (Bellevue, WA)
Read More About Cheryl Crow

Daniel H. Solomon, MD, MPH (Boston, MA)
Read More About Dr. Solomon

David T. Felson, MD, MPH (Boston, MA)
Read More About Dr. Felson

Jean Liew, MD, MS (Boston, MA)
Read More About Dr. Liew

Megan E.B. Clowse, MD, MPH (Durham, NC)
Read More About Dr. Clowse

About The Host

Rebecca Gillett was diagnosed with rheumatoid arthritis at age 26 — and later with osteoarthritis and degenerative disc disease. Rebecca is the Arthritis Foundation’s director of content strategy and planning, helping ensure that our resources are centered on patients’ needs and concerns, from her perspectives as both a patient and as a health care provider. She earned her Bachelor of Science in telecommunication from the University of Florida and her Master of Science in occupational therapy from Colorado State University.

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Full Transcript:
Released on December 6, 2022 
 

PODCAST OPEN:                   

You’re listening to the Live Yes! With Arthritis podcast, created by the Arthritis Foundation to help people with arthritis — and the people who love them — live their best lives. If you’re dealing with chronic pain, this podcast is for you. You may have arthritis, but it doesn’t have you. Here, learn how you can take control. Our host is Rebecca Gillett, an arthritis patient and occupational therapist, who is joined by others to help you live your Yes.    
 

MUSIC BRIDGE  
 

Rebecca Gillett:  

Thanks for joining us on this episode of the Live Yes! With Arthritis podcast. In November each year, the best of the best brilliant minds in the world of rheumatology converge to share their research and findings and discuss new projects, treatments and guidelines to treat the various forms of rheumatic diseases. This year was the first time this conference was held in person since 2019 and I was fortunate enough to attend.  
 

It's called the American College of Rheumatology conference. The ACR, as it's known, is who sets guidelines and guidance for rheumatologists in treating the various rheumatic diseases that we all might face. So, as an occupational therapist, it provides me with a great opportunity to learn the latest in treatment and research that's happening right now or coming down the pipeline. But also as a patient. I said this before and it does bear repeating. To me, research means hope. And we could all use a little hope when we live with arthritis.  
 

The pod has celebrated its third year of production and I can say that we have been so fortunate to have had some of the best guest experts we could ask for. At this conference, I was able to meet some of those experts who have been on the podcast live and in person for the first time, so that was pretty cool. And I was able to catch up with some other experts to share their thoughts on the latest research.  
 

There were hundreds of sessions and presentations over this conference in Philadelphia, converging all of the rheumatologists and physician scientists from around the world to learn about the latest research and treatments. So, in today's episode, we're going to share some of the highlights presented and just some research that is happening now to give you an update on where we are in arthritis research this year.  
 

First, we're gonna start off with the latest on what's happening in the world of osteoarthritis research. My first guest is David Felson, he is a professor of medicine and epidemiology at Boston University's Schools of Medicine and Public Health. Dr. Felson is the Arthritis Foundation's Osteoarthritis Clinical Network lead, former co-chair of our Osteoarthritis Clinical Studies Forum series, and a two-time winner of the foundation's Lee. C. Howley Sr. Prize for arthritis science service.  
 

Thanks for joining me, Dr. Felson.  

 

Dr. David Felson:   

My pleasure. 


Rebecca Gillett:  

So, I know you were also in attendance at, ACR conference what did you take away mostly from it?  


Dr. David Felson:  

Well, I thought there wasn't a lot of new osteoarthritis insight, to be honest with you, I think the focus was on many other, important and sometimes disabling rheumatic diseases where there's been some progress, but I'd love there to be more progress in osteoarthritis, I think there was a very large, important study on exercise and weight loss and, uh, which, uh, was attempted in a community setting in North Carolina and suggested that there's a modest effect over 18 months of community-based weight loss and exercise programs, which was very nice and reassuring.  

 

Rebecca Gillett:  

That's good news, so, for osteoarthritis, the benefits of weight loss, alleviating symptoms, is that what the research was focused on?  

 

Dr. David Felson:  

The treatment was a combined regimen of exercise and weight loss they had a modest effect, but the patient seemed to lose a pretty good amount of weight, so I think that it was probably the weight loss that was the main actor here.  

 

Rebecca Gillett:  

That's interesting. I didn't get to attend that one, so thanks for sharing that.  
 

Dr. David Felson:  

Mm-hmm.  

 

Rebecca Gillett:  

While you do say, at this big conference there wasn't as much shared on osteoarthritis, I do know that there is a lot of research happening, right? You are a big part of that, there was one session, that we will talk to Dr. Liew a little bit about later, about the MRI definition or outcome of osteoarthritis. Can you explain a little bit about what that is?  

 

Dr. David Felson:  

Well, up until now, we've really been using X-rays to evaluate and diagnose osteoarthritis. And X -rays aren't terribly good at looking inside of the joint to figure out how much cartilage is lost, whether bone has been damaged, and whether other structures within the joint are preserved. And MRI is much better for that. So increasingly, we've been using MRIs in research studies and even clinically to figure out what's going on with patients.  
 

But we've not had a definition of osteoarthritis using MRI, we have historically old and well-used definitions using X-rays. But as I said, X-rays really aren't so accurate anymore, we don't trust a lot of times what they show. So, we've developed, with Dr. Liew's help, um, a new definition of osteoarthritis using MRI that is pretty simple to apply and should be widely usable.  
 

And that'll help with our research, 'cause now we have a target that we might wanna prevent patients from developing.  

 

Rebecca Gillett:  

So, now, is that something that is going to be, because of this research you’ve done, more widely used throughout imaging when somebody thinks, you know-  

 

Dr. David Felson:  

Right, I hope so. I think we, it'll give us a standard language to use. And that's, a lot of times, helped with progress toward treatment, because now we all speak the same language, we're all looking for the same outcomes and it helps us all coordinate and harmonize our treatments and our results better.  

 

Rebecca Gillett:  

Historically, people often have thought of osteoarthritis as a wear and tear disease, but with the use of MRI and more research showing that there is an inflammatory process, an X-ray wouldn't really capture that as much as an MRI, is that correct?  

 

Dr. David Felson:  

You're right, all the X-ray really tells us about is, is bone and bone response to the disease. And you're absolutely right, we've seen a lot of inflammation within the joint when we started to get MRIs in patients with osteoarthritis and it varies, some patients have a lot and others have only a little bit or maybe none at all.  
 

And so, that's been helpful because we found that inflammation in the synovium, the lining of the joint, often is correlated with pain. The more you have, the more pain you have. And it also causes damage over time, that the inflammation that's part of that synovium, is destructive to cartilage and other structures within the joint. So, it's an important insight.  

 

Rebecca Gillett:  

Thank you forex plaining all of that and for your research and your involvement in that. I know there's another project that you are working on, PIKASO project. Can you tell us what that means and what this project is all about?  

 

Dr. David Felson:  

I'm not sure I remember the whole acronym, but I think it means preventing, injured knees from developing structural osteoarthritis. I think that gets out all of the letters in PIKASO.   

 

Rebecca Gillett:  

(laughs)  

 

Dr. David Felson:  

It's about taking young people who had injures, injuries to their knees, usually anterior cruciate ligament tears when they're playing sports or meniscal tears when they're playing sports, and evaluating whether treatments might prevent their developing osteoarthritis at a young age. So, what happens after you get an ACL tear, or a meniscal tear, is your chance of getting osteoarthritis later in life just goes skyward. So, that the majority of people with those injuries later, eventually, develop osteoarthritis, but it takes 20 or 30 years, maybe longer, for them to get disease.  

 

We've developed a program that identifies a small group of people with those injuries who are at very high risk of getting osteoarthritis fast. And we're going to test treatments on them in a timeframe when we can actually see whether they develop osteoarthritis or not.  

there are some other small trials that are not as definitive as this one. So it's the first large-scale trial that the Arthritis Foundation has funded.  

 

Rebecca Gillett:  

That's great.  

 

Dr. David Felson:  

We don't have effective treatments for osteoarthritis, that's one of the reasons why it's causing such an increase in knee and hip replacements and why it's causing so much disability and young people who get osteoarthritis are disabled for a long time before they're eligible to get any kind of knee replacements or hip replacement, so they often suffer for many years. And knee replacements sometimes aren't so effective.  

 

So, some patients who get ACL tears or meniscal tears, who get these injuries, they'll get osteoarthritis early. They may get a knee replacement in their 50s and they'll still have pain because the knee replacement didn't work very well. So, they spend most of their adult lives with disabling knee pain. And that's not a good picture. So, our goal is to try to find treatments that prevent that.  

 

Rebecca Gillett:  

Right. I think it's important, I think there is a trend of more and more people, like you were saying, developing it earlier because of sports injuries or repetitive injuries or overuse of a joint causing, injury to the joint. Thank you for pulling together this project and working on it I know it's a big team effort.  

 

Dr. David Felson:  

It is a big team effort. And the Arthritis Foundation has mobilized wonderfully to help address it. It's challenging. attempts to develop treatments for osteoarthritis have not been terribly successful. And this is a, a new direction. A new idea and a new way of, of thinking about prevention that might help us take a group of people we know are at high risk and are likely to suffer from this disease and prevent them from getting it.  

 

Rebecca Gillett:  

That's awesome. One thing that we also are involved in is nominating patient advocates to be part of research application reviews for the Department of Defense, which I don't think a lot of people know that. a lot of the budgets for, um, funding research for different diseases and chronic diseases does come through the Department of Defense and I had the pleasure and honor of serving on one of those and it was specific to musculoskeletal disorders and osteoarthritis.  

 

Different programs of research that all interconnect in trying to get at the root of the inflammation of osteoarthritis and, and trying to figure out, eventually, really can there be a biologic that can help change the course of osteoarthritis? So, as a nerdy (laughs) occupational therapist and patient, it was really cool to see all the great minds that are out there coming up with ways to identify, even at the molecular level, like, how we can make change, and try to work toward coming up with some treatment.  

 

I know you've been heavily involved in working with the FDA over the years, as it relates to osteoarthritis and there was a workshop in the recent past about that. Can you tell us about your work involved with the FDA as it relates to osteoarthritis?  

 

Dr. David Felson:   

I've been trying to help them figure out how to measure outcomes in trials testing new treatments for osteoarthritis. They're not sure how to measure outcomes. For one, we know that pain is a terribly important outcome for patients with osteoarthritis, the most important outcome, the main reason they seek care.  

 

But... as scientists who do research in the structure of the joint, we wanna prevent that joint from deteriorating and from experiencing more cartilage loss. And measuring that outcome is very challenging. And so, the FDA has not been willing yet to figure out and instruct companies developing treatments on how they want that outcome to be measured. And in many ways, that's held back our progress for coming up with new treatments for osteoarthritis. And they're struggling, they want some guidance from the community and we're trying to provide them with that guidance, both patients and researchers.  

 

Rebecca Gillett:  

That's great. I mean, and that's the biggest part of any experiment or any project, right? How do you measure success? So, unless you have a way to measure it, how are they gonna know that a treatment works, right? So, it's groundwork, really, right? We're still working at the ground level of, of creating a foundation so that we can have some treatments developed.  

 

Dr. David Felson:  

Right. That's right. 

  

Rebecca Gillett:  

My last question for you, was there any other research that you were excited to hear about that was presented at ACR or any highlights of, of what's up and coming, that maybe our listeners who are, are patients and have any form of arthritis might be interested in hearing?  

 

Dr. David Felson:  

I think one of the important patient-related papers that was presented was, a paper about, the cost of copay and whether they influence whether people fill their prescriptions or not. And what it suggested was that if your copay was greater than $10, you were less likely to fill your prescriptions. This wasn't a study of patients with osteoarthritis, it was a study of patients with lupus who have insurance.  
 

But it was, I think, probably relevant to practice and to patients and I think it needs to be confirmed by other studies, but I hope, that some work in that area is done and that if it does influence whether patients fill their prescriptions, that we can influence, somehow, insurers so that copays can be lower.  

 

Rebecca Gillett:  

Yeah, you have to be able to afford the medication to make any gains, right? So, it is a barrier for many communities and for many people especially when you might have multiple medications you're taking on a daily basis. That makes sense to me, if you had $40 copay on just one medication, but you had five other medications to fill, that's, that's somebody's grocery bill, right?   

 

Dr. David Felson:  

That's right.  

 

Rebecca Gillett:  

That's interesting. So, thank you for sharing that.  

 

Rebecca Gillett:  

Thank you so much, Dr. Felson, for giving us the time.  

 

Dr. David Felson:  

All right. Take care now.  

 

Rebecca Gillett:  

So, Dr. Felson mentioned Dr. Jean Liew, one of his colleagues. She's currently an assistant professor of medicine in the Section of Rheumatology at Boston University, where her clinical research currently focuses on knee osteoarthritis and axial spondyloarthritis. Additionally, she's a member of the COVID-19 Global Rheumatology Alliance, and a member of its steering committee. She has led multiple projects relating to data collection, analysis and dissemination of the impact of the COVID-19 pandemic on individuals with rheumatic disease. Dr. Liew, thanks for joining me.  

 

Dr. Jean Liew:  

Thanks for having me.  

 

Rebecca Gillett:  

So, before we get started, can you tell us a little bit about your background and why you've chosen rheumatology in research?  

 

Dr. Jean Liew:  

Thank you for asking that question. So, I, sort of had an inkling that I wanted to go into rheumatology since before medical school, I had a friend who has a rheumatologic condition and she suggested that it was a good fit for me based on my personality. That's been 12, 13 years now since she said that. It’s been totally spot on. She was totally right.  

 

I started getting into rheumatology early on in med school, found one of my first mentors, who is a clinician. And then discovered research, specifically clinical research, a little bit later on in residency and found that that melded together my strengths, my interests, and that's where I find myself now.  

 

Rebecca Gillett:  

I think it's great. The field of rheumatology is ever-changing if there's anything that I appreciate,  it's the science and advancements that are happening because of research and people like you who want to do that research, so thank you. Before we dive into some of your latest research, let's level set with our listeners and help them understand some of the terms that we might hear, so, what is an osteophyte?  

 

Dr. Jean Liew:  

Okay. So, an osteophyte is the scientific term for what is colloquially called a bone spur, so it's a new bone formation at the joint, so it's just extra bone that's formed, at your knee joint, for example. we think it's a response to stress, instability. It's an attempt of the joint to repair itself. But what exactly an osteophyte really, really means becomes, kind of, a philosophical discussion because we don't really, really know. The presence of a clear osteophyte on an X-ray is when we define someone or call someone as having radiographic osteoarthritis or OA. It's a sign of the disease on X-ray.  

 

Rebecca Gillett:  

Okay. And, so, how is it different from regular bone or regular joint?  

 

Dr. Jean Liew:  

It's just bone that shouldn't be there. it's not bone that you had in the beginning, like, when you were a young adult, it's just extra.  

 

Rebecca Gillett:  

Okay. I know a lot of people, when they go to their doctor and find out after having imaging, they'll, they'll see that on, on the results doctors will refer it, to it as a bone spur, so thank you for explaining that. I know ACR, at the conference, you presented your research related to an MRI definition of osteoarthritis. Can you tell us about that?  

 

Dr. Jean Liew:  

Yeah. So, that's part of my work with Dr. Felson and where that comes from is that MRIs are increasingly used in clinical research and in clinical trials for identifying and defining people with knee OA. And we don't have a consensus on what is the best definition for knee OA when we look at an MRI because a lot of people who don't have knee OA have some changes on MRI in the knee. So, this is a study where we used this large cohort of people with or at risk for knee OA, who had MRIs done of their knees, when we tried to test different combinations of features, including osteophytes, and see how they perform, if we look at what we call a gold standard as our usual definition of knee OA on, on X-ray. And ultimately, we, found that we had a few combinations of these features, these potential definitions, having, like, good performance, meaning that they were pretty accurate when you compare it to defining knee OA on X-ray. But we are still trying to figure out what is the best definition that we would recommend, because there wasn't one that came out clearly ahead.  

 

Rebecca Gillett:  

So, right now, what is the best way to diagnose knee osteoarthritis?  

 

Dr. Jean Liew:  

There's not a best way on imaging. So, currently, in clinical practice, so that's not the research setting, it's a combination of clinical and sometimes imaging, we don't always use imaging like X-rays or MRIs to make a diagnosis of knee OA, so it's, it's a combination of symptoms, history, exam and if there happens to be imaging, we use that as well. If you went to a clinic, that would be how a doctor would diagnose you with knee OA. But the question here is, in research and in trials how should we use MRI to define knee OA?  

 

Rebecca Gillett:  

Yeah, MRI and ultrasound and, you know, all the imaging, they're really trying to better define, how we use it as a tool for, for diagnosis and monitoring. why is it important to diagnose early osteoarthritis?  

 

Dr. Jean Liew:  

This question has slightly different answers whether you're talking about diagnosis in the clinic setting, like, you're a patient and you're seeing a doctor and you're trying to figure out why you're having knee pain. And then there's the other studying, which is in, in research, like, in a clinical trial. In the clinical trial area at least, we're struggling to find therapies that are effective for preventing, progression of knee OA and preventing symptoms from getting worse.  

 

Maybe because we're studying people who are too late in their disease course, in the course of their illness. So if we are able to identify people who truly do have knee OA, but an earlier stage, then maybe we can actually prevent some of these things from happening. So, that's why in the research setting, in the clinical studies, clinical trial setting, it's important to, to make a definition to identify people with early-stage knee OA.  

 

Rebecca Gillett:  

And that's one of the first steps to get to treatments because, as we know, with OA, there aren't a whole lot of treatments, so we need to get to the root of the problem to figure out, right? So, thank you for explaining all of that. There are a lot of stages to get through to understand what the body is doing before we can get to that treatment. And so, thank you for all of your work in that area. In osteoarthritis first, what research excited you to hear about?   

 

Dr. Jean Liew:  

In OA, I think there, there were two, like, types of research that I really enjoyed and both of these are clinical research, so, as opposed to things that are done on animals or things that are done in a lab. One kind of study, is looking at trajectories of symptoms or pain over time. So, there was a study that came out of our group, which looked at pain sensitization or central sensitization and how those trajectories looked over a time and in men and women, in our cohort, with or at risk of knee OA. And really identified three trajectories that were pretty stable over time, so some people just have very low pain sensitization, so they're not predisposed to developing chronic pain through, these changes in the way that pain signals are processed in the body. Whereas there's another group that just always has a lot of it.  

 

So, because these trajectories are pretty stable over time, it seems like it might be an underlying trait that is inherent to these people, rather than something that really, changes a response to things over time. That's, kind of, important to know when we're addressing, chronic pain in people with OA.  

 

And then there was a study that looked at people with hand OA, so not knee, but hand, and they looked at pain scores over time, over many visits and, again, they just found that pain scores are pretty stable, for people over a time and there are three groups, and, again, there was one that just had stably high pain scores over time and one that had stably low pain scores over time.  

 

The takeaway there is that it seems like whatever you start with when you're diagnosed, if you are lucky to have low pain scores then, you shouldn't fear that things are going to drastically change over time, things are generally pretty stable over years.   

 

Rebecca Gillett:  

That's interesting.  

 

Dr. Jean Liew:  

Yeah.  

 

Rebecca Gillett:  

Especially with the hand OA. Yeah.  

 

Dr. Jean Liew:  

Yeah. And then, the other category in OA is, is the study of comorbidity, so other medical conditions that you might have, like diabetes, in addition to your OA, and how that affects just the management and just addressing the OA. So, that's work, out of Toronto for my colleague, Lauren King, who looks at people with both diabetes and OA and just under treatment of the OA,  because the diabetes takes precedence and just understanding how these two conditions that are really common can just, interact with each other. So, I thought highlighting that was really interesting.  

 

Rebecca Gillett:  

Yeah, it's common for people with, um, diabetes to also have osteoarthritis or vice versa, right? So-  

 

Dr. Jean Liew:  

Mm-hmm.  

 

Rebecca Gillett:  

I attended a session about that as well and I was surprised by the comorbidity rate. I know that you did, participate in a community hub with discussions around spondyloarthritis, which is arthritis of the spine, for those that don't know, and psoriatic arthritis.  

 

Is there anything more promising in that area that you heard about? I know sometimes it can be a long journey to get a diagnosis of axial spondyloarthritis or even psoriatic arthritis. Is there anything that was exciting to hear about?  

 

Dr. Jean Liew:  

In contrast to OA, in spondyloarthritis, which is inflammatory arthritis that can affect the spine, we have a lot of effective therapies that can halt or slow progression, can improve symptoms, a very different field, but the studies that I, I like highlight, are, again, addressing the comorbidities and addressing how those might change how someone's symptoms progress or they experience their disease. We're having more of these studies come out of ACR now in the spondyloarthritis, psoriatic arthritis space.  

 

Despite having all these available therapies that are pretty effective, there's still this long diagnostic delay that sometimes, in some people, could be over a decade, which is a very long time when you're having inflammation that can affect your function, can cause pain, can affect your quality of life. People are starting to really study what are the factors that are associated with this longer diagnostic delay. And there was one interesting study, from colleagues in the Boston area, looking at, basically, social vulnerability index, which is a, kind of, neighborhood derived measure saying how socially vulnerable are you? So, it's sort of, like, social economic status.  

 

Rebecca Gillett:  

Mm-hmm.  

 

Dr. Jean Liew:  

it's a measure of, like, access to healthcare and, and things that are kind of, tied in there. So, addressing those, inequities and barriers to care that is one thing that needs to be done in terms of reducing this delay to diagnosis in spondyloarthritis field.  

 

Rebecca Gillett:  

Yeah, I kind of heard a similar theme in a lot of sessions, how social determinants should really become a factor when you're looking at if somebody is having a variety of symptoms, what are their social determinants as well? So, taking a look at the whole person so that you don't miss a diagnosis like spondyloarthritis. Is that something that you would echo too that you heard more of?  

 

Dr. Jean Liew:  

Yeah, since, uh, my group is also doing this kind of work, in this area as well, so, because there's some things that are not changeable that are risk factors, like your age, your sex, but, there are other things that may be on the structural level, societal level, that we could address that have to do with social determinants of health.  

 

Rebecca Gillett:  

Thank you for your work, Dr. Liew, and thank you for your time, we appreciate it.  

 

Dr. Jean Liew:  

Thanks for having me.  

  

Music  

 

Promotion: You’re experience with arthritis can help researchers zero in on the kind of treatment options needed the most. And a great way to contribute is by participating in a clinical trial. Be part of the solution. Check out ways you may be able to help at arthritis.org/clinicaltrials.  

 

Rebecca Gillett:  

So, access to methotrexate, a common disease-modifying drug for the treatment of rheumatoid arthritis and lupus and other rheumatic diseases became an issue this year in 2022. The Supreme Court's ruling this year caused many issues for patients in accessing this medication in certain states. I was able to catch up with Dr. Megan Clowse to discuss a session focused on how legislation can affect patients with rheumatic diseases. Here's our conversation.  

 

Dr. Clowse, this session is a very important session at ACR, in discussing how legislative decisions can affect reproductive medicine and I know that we are still hearing some patients with rheumatic diseases having access to methotrexate. What advice do you have and what's the latest?  

 

Dr. Megan Clowse:  

Yeah, so, definitely, we've heard a lot of reports of women having some decreased access to methotrexate for a range of different reasons, it sounds like sometimes it's starting at their prescribing physician who is worried either about their physician's own legal risk or even just the actual situation of a patient conceiving on methotrexate, which can be a very challenging situation. It can also be happening at the standpoint of the pharmacist, or I've even heard perhaps from the insurers.  

 

I think there's a couple ways to think about it. I definitely think that, the changes in abortion law, I think, have brought to doctors', sort of, consciousness a little bit more, the risks that we're putting some of our patients in and the risks that some of our patients are, are sort of taking by, if they are on a medication that causes major birth defects, in particular, methotrexate is most common for patients with arthritis, but in our lupus patients, a lot of them are on mycophenolate, which causes one out of four live births to have a major birth defect so it's, like, a really toxic medicine.  

 

We've historically, kind of, just let women, sort of, live in the situation of taking those medicines but not really using effective contraception because of side effects or desire or whatever. And I think a lot of rheumatologists are more uncomfortable with that now, both because of legal situations, but also just realizing the humanistic, kind of, aspect here, right? I've seen a lot of patients in very complicated pregnancy situations, and I don't wish that on any patient.  

 

Rebecca Gillett:  

Right.  

 

Dr. Megan Clowse:  

So, taking steps to really plan pregnancy effectively and time it to go along with disease activity that's quiet and pregnancy-compatible medicines, like, dramatically improves people's lives forever. (laughs) And so, I think people are getting a little hesitant, so I think that might be some of the doctors' hesitancy-  

 

Rebecca Gillett:  

Yeah.  

 

Dr. Megan Clowse:  

... is not, because they're trying to steal medicines away, but because they're really trying to, live into that, sort of, reality of, like, let's all have the safest situations possible. I think, also, some of the concerns by doctors and pharmacists in particular, from a legal standpoint are definitely overblown.  

 

So, I think we just heard from a great lawyer who's really involved in this, who really was trying to de-emphasize our risks as rheumatologists, that our chances of actually getting sued, are really quite low in this situation, um, because the, the doctor's intent for giving out a medicine really is what matters. And so, if we're prescribing methotrexate because we're trying to end a pregnancy, yes, we can get in really big trouble for that in some states.  

 

If we're prescribing methotrexate to treat rheumatoid arthritis and we have that well-documented, I don't think our doctors are actually at risk, and similarly, for pharmacists. It covers the same way, the pharmacist, it's all the same, by intent. The pharmacist is giving you methotrexate with the intention of you using it to treat your rheumatoid arthritis, then they are not at risk.  

 

Rebecca Gillett:  

Yeah.  

 

Dr. Megan Clowse:  

If the pharmacist is giving you the methotrexate with the intention that you're gonna go end a pregnancy, then the pharmacist is at risk. So, I would take their questions from that standpoint, right? I would try to live into their experience a little. They are afraid. And they want your reassurance that you're not gonna use this to cause an abortion.  

I also am gonna add that I think we can imagine that there are probably some places and some groups that are interested in accessing methotrexate to help other women have pregnancy terminations and that they are worried that they are fueling that and could get caught into it.  

 

There undoubtedly will be a few more hoops for some women, but they should be able to be overcome.  

 

Rebecca Gillett:  

So, what advice do you have to those who are experiencing difficulty accessing?  

 

Dr. Megan Clowse:  

I think making sure you're on effective contraception. If you are on methotrexate, you should be on highly effective contraception to strongly avoid pregnancy and if you need documentation of that, then maybe go back to the doctor who put your IUD in or did your sterilization or something like that to be able to prove to everybody that you actually have it. that should help you get past this.  

 

Having your rheumatologist put your diagnosis on the prescription, we do that for other prescriptions sometimes, but putting your diagnosis of rheumatoid or et cetera on your methotrexate prescription, I would expect should help that as well.  

 

Rebecca Gillett:  

The guidelines for, um, people with rheumatic diseases when it comes to pregnancy are fairly new. A year old, right? I know there's, there's still a lot of disinformation out there and maybe some rheumatologists don't realize that that came out. Primary care physicians, of course, don't know. What is the best way as a patient to advocate for yourself?  

 

Dr. Megan Clowse:  

That's a great question. I think that there are some really good resources that are available to help, patients but, in particular, help doctors translate the reproductive health guidelines into reality. We made a pregnancy, website for lupus a couple of years ago called lupuspregnancy.org. We just released a new website, it's reprorheum.duke.edu, that's really focused on doctors, right?  

 

So, it's not focused on patients, it's not designed to have a lot of content that's patients, 'cause people like the-  

 

Rebecca Gillett:  

Right.  

 

Dr. Megan Clowse:  

... Arthritis Foundation, to be honest, do a better job of that. We're focused on doctors being able to provide better care. So, we actually have some really nice discussion guides in there-  

 

Rebecca Gillett:  

Mm-hmm.  

 

Dr. Megan Clowse:  

... that have the information the doctor needs to actually help personalize the information to you. I suspect a lot of patients find that they go to a doctor and the doctor really isn't confident in what they know.  

 

Rebecca Gillett:  

Right.  

 

Dr. Megan Clowse:  

They actually might know the right answers, I think most of them actually do know the right answers, but they don't, they're not sure they know the right answers and so they give you a really hedgey, nervous-sounding answer, which, of course, is not gonna feel good, right?  

 

Rebecca Gillett:  

Right.  

 

Dr. Megan Clowse:  

Nobody's gonna feel good about those conversations. So, even printing out and taking discussion guides, they're based on the American College of Rheumatology guidelines-  

 

Rebecca Gillett:  

Okay.  

 

Dr. Megan Clowse:  

... you can say, like, "Oh, I found this and it's based on the guidelines and, like, can you help me make decisions, you know, based on me? Like, which category do I fall in?"  

 

Rebecca Gillett:  

Right.  

 

Dr. Megan Clowse:  

And that kinda thing, to be able to really help the doctor have the answers.  

 

Rebecca Gillett:  

Yeah.  

 

Dr. Megan Clowse:  

the adage, like, just ask your doctor-  

 

Rebecca Gillett:  

Yes.  

 

Dr. Megan Clowse:  

... is, like, just not effective-  

 

Rebecca Gillett:  

Right.  

 

Dr. Megan Clowse:  

... because the doctor doesn't know the answer. (laughs)  

 

Rebecca Gillett:  

Well, and it's hard to know everything. Yeah, and it's-  

 

Dr. Megan Clowse:  

Yes.  

 

Rebecca Gillett:  

... ever changing, so-  

 

Dr. Megan Clowse:  

It is, and, and I'll say that rheumatologists, particularly, in the community tend to see, like, one to three pregnant patients a year.  

 

Rebecca Gillett:  

Right.  

 

Dr. Megan Clowse:  

So, it's really not that many.  

 

Rebecca Gillett:  

Right.  

 

Dr. Megan Clowse:  

being able to keep up with all the guidelines and, which medicines are safe and which medicines aren't is just too much for a lot of them when they, most of the time, are worried about much different things. So, helping them get to the easy answers in a way that is not, like, too pushy, but is actually, like, "Here's the answers."  

 

Rebecca Gillett:  

Right.  

 

Dr. Megan Clowse:  

I think can be really helpful.  

 

Rebecca Gillett:  

Awesome. Well, thank you.  

 

Dr. Megan Clowse:  

Absolutely.  

 

Music   

 

Promo: If you’re family planning, pregnant or parenting with arthritis, you know that there are unique challenges that can arise during any of these phases. Check out a new Arthritis Foundation resource for anyone at any of these stages of life, with new guidelines, resources and tips as well as a new virtual connect group. Visit arthritis.org/family-planning for more information.  

 

Rebecca Gillett:  

So, some good news is that... rheumatoid arthritis treatments have come a very long way since I was diagnosed 21 years ago. There are so many classes of drugs available, and even more being researched. We've learned so much about the immune system function and continue to learn more every year. The Arthritis Foundation recently awarded $1.1 million dollars toward refractory rheumatoid arthritis.  

 

That's a new term, I hadn't heard of it either, so, I caught up with Dr. Daniel Solomon with Brigham and Women's Hospital, who is one of the four researchers... who is one of the four researchers being funded. Dr. Solomon is with me. We just announced some funding for something called refractory rheumatoid arthritis. What is that?  

 

Dr. Daniel Solomon:  

Yeah, it's a good question. in the United States, there's about 3,000,000 people with rheumatoid arthritis and about 20 to 30% of them, so, let's say, you know, upwards of 1,000,000 people have rheumatoid arthritis that, despite multiple different treatments including biologic treatments, their disease doesn't really come under great control. So, they continue to have active disease with pain and disability, often on a daily basis.  

And so, this is, kind of, an emerging area of research, um, refractory or difficult to treat RA, when, rheumatoid arthritis remains active despite multiple treatments.  

 

Rebecca Gillett:  

And so, this research that you're doing, How is it, going to help with moving some treatments along?  

 

Dr. Daniel Solomon:  

My colleagues at Brigham and Women's and Kevin Way and I are using from a trial that was an NIH-funded trial that I was, ran with Joan Bathon, we recruited patients, in that trial who had moderate disease activity despite being on methotrexate, so they're, kind of, the group of patients that we refer to as methotrexate inadequate responders.  

 

Rebecca Gillett:  

Okay.  

 

Dr. Daniel Solomon:  

And those patients were then randomized to receive either a TNF or triple therapy, that's a collection of pills, adding sulfasalazine and hydroxychloroquine to methotrexate. So, the pill arm and the shot arm-  

 

Rebecca Gillett:  

Mm-hmm.  

 

Dr. Daniel Solomon:  

...were compared with respect to how they impact cardiovascular risk.  

 

Rebecca Gillett:  

Mm.  

 

Dr. Daniel Solomon:  

That was a different trial called the target trial. But we were able to collect a very robust set of specimens and characterize the patients very carefully over the course of six months to see which patients respond and which patients don't respond. And so, then, using that information, the clinical information, and about specimens, we then can study a question like refractory RA.  

 

And, and so, that's really the topic of our, Arthritis Foundation.  

 

Rebecca Gillett:  

Well, that's cool. So, do you know much about the other researchers who are funded? Are you guys working on different aspects-  

 

Dr. Daniel Solomon:  

Mm-hmm.  

 

Rebecca Gillett:  

... of approaching it?  

 

Dr. Daniel Solomon:  

Yeah. So, we're, we're really focused on the biology of-  

 

Rebecca Gillett:  

Mm-hmm.  

 

Dr. Daniel Solomon:  

...refractory RA, but there's other studies that are looking at some of the sociodemographic issues and healthcare disparities and how those might impact refractory to treatment RA. Ours is really more about understanding the cell populations.  

 

Rebecca Gillett:  

Mm-hmm.  

 

Dr. Daniel Solomon:  

So, during the target trial, which we'll be leveraging to study, to do the study we collected, whole blood, so we have all the white blood cells-  

 

Rebecca Gillett:  

Mm.  

 

Dr. Daniel Solomon:  

... and all the other types of cells and we can characterize the cell populations before treatment, during treatment, at the end of treatment. comparing patients who did respond to a treatment, like versus those who did not. And that comparison is very important in trying to understand-  

 

... which cell populations have most impacted or, or least impacted and how other sorts of functional studies, not just which cells there are, but how the cells react to other stimulation. so, the two aims are cell populations and functional testing of those cells and that'll give us a lot of information about what kinds of pathways might be targeting in patients who have refractory rheumatoid arthritis.  

 

Rebecca Gillett:  

Wow. So, this, to me, sounds like, we've heard the term and, maybe some listeners don't know it, but precision medicine, where we're learning more about the different, genetic makeups of who's responding to which type of medicine, am I on the right line-  

 

Dr. Daniel Solomon:  

Yeah.  

 

Rebecca Gillett:  

... there? Yeah?  

 

Dr. Daniel Solomon:  

Yeah, no, definitely. We're trying to characterize patients at a cellular level, as opposed to just characterizing patients, what's their background? What's their occupation? What's their sex? What's their age? We're trying to say, what cells are active in their blood and how are they active?  

 

Dr. Daniel Solomon:  

And that gives us we think, gives us insights that are a bit deeper. They should give us clues to better therapies for these types of conditions.  

 

Rebecca Gillett:  

So, somebody who's had rheumatoid arthritis for 21 years. I've been on all the TNF inhibitors-  

 

Dr. Daniel Solomon:  

Yeah.  

 

Rebecca Gillett:  

... and I'm on, Orencia now. but after a while, as a long-term patient, it seems like there are things that don't work anymore, so would this help address that maybe?  

 

Dr. Daniel Solomon:  

Yeah, exactly. So someone like yourself who's had experience with rheumatoid arthritis, sounds like you've gotten a lot of good treatment and a lot of good care, which is great, but sometimes, based on people's genetics, based on other aspects of their disease, they don't respond as well. And so, over time, patients might go through different therapies and they will be defined as difficult to treat or refractory RA.  

 

Rebecca Gillett:  

Okay.  

 

Dr. Daniel Solomon:  

And taking out their blood and looking at the cells that are active in different phases of RA, and how they're active, we think, will give us insights into new therapies. Again, we have great therapies for RA.  

 

Rebecca Gillett:  

Yes.  

 

Dr. Daniel Solomon:  

We really do.  

 

Rebecca Gillett:  

We do.  

 

Dr. Daniel Solomon:  

70 to 80% of patients do very well, but that still leaves a sizeable group of patients, who don't do as well. The beauty of it, and I think, part of the reason why the Arthritis Foundation probably funded us, is that we're leveraging specimens and information that we've collected from another trial.  

 

Rebecca Gillett:  

Uh-huh.  

 

Dr. Daniel Solomon:  

This is a secondary analysis of those data, but it's really well-collected information in a prospective randomized trial really gives you great insights, so, we're able to do it relatively quickly at an efficient budget.   

 

Rebecca Gillett:  

Wow. That's awesome. Well, thank you so much, I appreciate the conversation.  

 

Dr. Daniel Solomon:  

Thank you.  

 

Music  

 

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Rebecca Gillett:  

Some other news related to rheumatoid arthritis as far as research is concerned, new guidelines from the American College of Rheumatology were released for non-medical treatments for rheumatoid arthritis, and overwhelmingly, the strongest evidence shown that is a non-medical treatment for managing rheumatoid arthritis is, no surprise, exercise.  

 

Basically, it says that exercise is one of the best ways to treat your rheumatoid arthritis, without using medications. So, I know this is a hard thing to do sometimes, but just remember there are resources to help you get started, the Arthritis Foundation has Your Exercise Solution on our website.  

 

So, go to arthritis.org/yourexercisesolution and you can find videos with different modifications depending on the joint, for you to try to get moving. So, once you can do some exercises that fit you, then you can work toward perhaps putting together a walking program, which is another great program that has evidence behind it called the Walk With Ease program, offered by the Arthritis Foundation.  

 

So, look that information up on our website at arthritis.org, but the best thing for you to do to manage your RA is to get moving. That's what the research is continuing to tell us. We'll have more details on these guidelines, and will share links in the show notes.  

 

Rebecca Gillett:   

Normally... we talk about some questions people might have posted or tips they've shared from social media, but for this research highlights episode, I wanted to share a conversation I was able to have with one of our amazing arthritis patient advocates, Cheryl Crow. She is also an occupational therapist who has rheumatoid arthritis. Cheryl and I have known each other for a number of years, but she's been a long-time advocate and volunteer for the Arthritis Foundation. So, listen in to a little bit of our conversation.  

 

I am with Cheryl Crow, patient advocate extraordinaire and-  

 

Cheryl Crow:  

(laughs)  

 

Rebecca Gillett:  

... creator and owner of Arthritis Life. She has presented a poster here at the American College of Rheumatology conference. And actually, has a couple presentations, how are you doing?  

 

Cheryl Crow:  

(laughs) It's been great. Really inspirational to be here in person, But it's so good to see people like you in person who I haven't seen in three years  


Rebecca Gillett:  

you are doing a special lecture.  

 

Cheryl Crow:  

Yes.  

 

Rebecca Gillett:  

So, tell me about what that is and what you're talking about.  

 

Cheryl Crow:  

I'm gonna be sharing some tips for how health professionals can harness the power of social media for effective patient education, while also, kind of, avoiding some of the common pitfalls of social media.  

 

'Cause, as we all know, social media, it has amazing aspects like patient connections and social support and information sharing, but also, there are some real downsides and in the talk, I'll be blending my personal patient experience along with what some of the data says about the benefits and drawbacks of social media, specific for chronic healthcare patients.  

 

Rebecca Gillett:  

Yeah. I think we have a lot of great social support groups and there are a lot of patient advocates out there doing stuff like you. But different is that you're an occupational therapist.  

 

Cheryl Crow:  

Mm.  

 

Rebecca Gillett:  

So, what is that like for you to be doing these awesome TikTok reels that you do-  

 

Cheryl Crow:  

(laughs)  

 

Rebecca Gillett:  

... and stuff like that to educate others?  

 

Cheryl Crow:  

Yeah, for me, honestly, the biggest benefit as an occupational therapist is being able to take all of my, my training and see immediate benefits to the patients who are learning these life hacks, so in, in occupational therapy, we would call them, like, adaptations or daily living modifications, but I usually just lump them in the category of life hacks. If I could show someone in a quick video, oh, you can hold your pencil a different way and that can decrease the strain on your finger joints and, as a bonus, you might look like Taylor Swift while you're doing it.  

 

Rebecca Gillett:  

Yeah.  

 

Cheryl Crow:  

(laughs) 'Cause that's how she holds her pen, it's, like, seeing the comments roll in and the likes, not just from a self-centered standpoint, like, I want people to like me.  

 

Rebecca Gillett:  

Right.  

 

Cheryl Crow:  

Professionally, um, it makes me feel really gratified because it makes me feel like I can have an impact on a lot of people rather than the traditional occupation therapy job, which I know both of us have had, where you're with one person at a time.  

 

Rebecca Gillett:  

Right.  

 

Cheryl Crow:  

I'm sure, in your experience, you know, with the Arthritis Foundation, now you're able to have an impact and bring your occupational therapy perspective to such a large population, that's pretty exciting.  

 

Rebecca Gillett:  

Yeah. We have a bigger reach when you can get to people through other channels than just a direct patient contact. What's it like for you to be here at a giant-  

 

Cheryl Crow:  

(laughs)  

 

Rebecca Gillett:  

... rheumatology conference filled with physicians, scientists and clinicians?  

 

Cheryl Crow:  

It's really exciting, it's really overwhelming, I'm a huge extrovert, so I get really energized when I'm with people, but because of my chronic illness, I mean, and just being a human, there is a point where I get completely exhausted.  

 

Rebecca Gillett:  

Mm.  

 

Cheryl Crow :  

I think I have to manage my stress at events like this. it's work in progress,   

But it's very exciting to see the latest and greatest developments in rheumatology as well and it gives you hope as a patient. You know, wow, there's new therapies on the horizon.  

 

Rebecca Gillett:  

Right.  

 

Cheryl Crow:  

Not just for rheumatoid, but my friends, you know, with lupus, with psoriatic arthritis, other... conditions, you know, there's definitely, I think, a sense of hope at these conferences and, from my experience.  

 

Rebecca Gillett:  

Yeah. I equate research to hope, so-  

 

Cheryl Crow:  

Yeah. (laughs)  

 

Rebecca Gillett:  

... it's perfect. so far in everything that you've attended, what has been, the most exciting research that you've heard about?  

 

Cheryl Crow:  

Yeah. I think, honestly, what I've been most excited about but is seeing young people get involved in research, so-  

 

Rebecca Gillett:  

Yeah.  

 

Cheryl Crow:  

... I'm going to two different talks that, um, talked about young adults and how they're often, like, forgotten in research. I've seen young adults like Natasha from Take a Pain Check or others who are, you know, participating in research and, and showing that young people have a who have rheumatic diseases have something to offer back to researchers, they're not just passive-  

 

Rebecca Gillett:  

Right.  

 

Cheryl Crow:  

... participants. So, that's, kind of, been the thing that stands out to me right now, is, elevating the voices of the patients and the younger people.  

 

Rebecca Gillett:  

Yeah. I think it's true because you know, very vocal generation of younger people with arthritis too, and they can help insert the things that we need for better treatments, right?  

 

Cheryl Crow:  

Yes. Yeah.  

 

Rebecca Gillett:  

There's a theme I keep hearing, so I just wanna get your thoughts on it. And probably, I think it was three different sessions I heard a similar phrase echoed from three different presenters. And it was, opening presentation, Dr. Abraham Verghese said, "They can heal even though they cannot cure."  

 

Cheryl Crow:  

Oh, I did see that one. Sorry. (laughs)  

 

Rebecca Gillett:  

Yes. Yeah.  

 

Cheryl Crow:  

Yes.  

 

Rebecca Gillett:  

And then I went to another session where, they were talking about how “we can heal in our treatment and examinations of our patients."  

 

Cheryl Crow:  

Mm.  

 

Rebecca Gillett:  

And that has really struck me... to hear that in three different sessions-  

 

Cheryl Crow:  

Mm.  

 

Rebecca Gillett:  

... and hear how patient-centered a lot of these rheumatologists are-  

 

Cheryl Crow:  

Yes.  

Rebecca Gillett:  

... are talking about best practice.  

 

Cheryl Crow:  

Yeah. I mean, I think rheumatologists are in general, I find them to be, like, they've self-selected into rheumatology 'cause they really like working with patients over the long-term and, you know, getting to actually know their patients, not just, kind of, in and out, like, maybe, I don't know, surgery or something, not to knock surgeons, but, you know-  

 

Rebecca Gillett:  

Right.  

 

Cheryl Crow:  

... they have long-term relationships, but, yeah, that really struck me as well in, the healing without curing, I think, the distinction is more like that you can feel whole. You know, that's what healing means, feeling whole again and feeling, like, a sense of hope that you're a full person who can still have a full, vibrant life. Even if you have this disease, you don't have to cure it before having a wonderful life. Not to say that your life wouldn't be easier if you didn't have rheumatoid arthritis, I think we can both say-  

 

Rebecca Gillett:  

Right.  

 

Cheryl Crow:  

... my life would be easier if I didn't have rheumatoid arthritis, but can I still see myself as a whole human-  

 

Rebecca Gillett:  

Right.  

 

Cheryl Crow:  

... a worthy person? and I think that the doctor, the first person you hear about your diagnosis from, in, you know, in this case, a rheumatologist is the first one who sets the tone for that, for you.  

 

Rebecca Gillett:  

Right.  

 

Cheryl Crow:  

So, I think that's beautiful that you've heard it in multiple sessions.  

 

Rebecca Gillett:  

Yeah. it makes me think about what we always preach, you do on your podcast, we do, and all the education that you do, is communication is key and I know a lot of people are intimidated with communicating with their doctor, but that's what I'm hearing a lot from-  

 

Cheryl Crow:  

Yeah.  

 

Rebecca Gillett:  

... people presenting here, is, "Please, tell us and tell us the truth and tell us how you're really doing." And it's okay if it's not a right fit, to find somebody else, but how important that relationship is.  

 

Cheryl Crow:  

Yeah. The other theme, adjacent to this, I've heard, is a lot of people expressing, like, frustration at the limited time they get with their providers.  

 

Rebecca Gillett:  

Yeah.  

 

Cheryl Crow:  

So, you know, 20 minutes every three months, every six months, is such a small amount of time no matter how wonderful and patient-centered your provider is, so there's these, kind of, systemic issues, why are patients not being given either longer appointments with a rheumatologist or more referrals to multidisciplinary specialists like occupational therapists, physical therapists, social workers, psychologists, they can help patients really work through their activities of daily living, their ability to self-manage their condition on a daily basis. The analogy that, actually, I've made with a couple people on my soapbox is diabetes. If you get diagnosed with diabetes, we've had this-  

 

Rebecca Gillett:  

Yep.  

 

Cheryl Crow:  

... previously, but you get a certified diabetes educator. Where's the certified, autoimmune educator? Or arthritis educator, I think that would be my huge dream or hope in the next, like, 10 years, would be can we, as a health system, just, or health profession, provide patients with really more rigorous support? I think, when I've talked to rheumatologists, sometimes they've said, "Well, the reason we don't do that is because a lot of the patients do so well in the biologics." I'm like, and my first-  

 

Rebecca Gillett:  

No.  

 

Cheryl Crow:  

first of all, until 100% of them are in full remission or there's a cure, there's a huge need and the, I-  

 

Rebecca Gillett:  

Yeah.  

 

Cheryl Crow:  

... most, like, I did great on biologics until I didn't.  

 

Rebecca Gillett:  

Exactly.  

 

Cheryl Crow:  

... that's no reason to at least try giving patients more education and support.  

 

Rebecca Gillett:  

Yeah. And my argument to rheumatologists then is also, yeah, but they still need to know how to protect their joints and take care of themselves.   

 

Cheryl Crow:  

Yeah.  

 

Rebecca Gillett:  

... for preventative measures.  

 

Cheryl Crow:  

Exactly.  

 

Rebecca Gillett:  

And so that if they do another flare and come out of remission, they know how to take care of themself. I know that the biologics have made a difference but they've made our disease invisible and there's so many aspects of dealing with it, like the fatigue-  

 

Cheryl Crow:  

Mm-hmm.  

 

Rebecca Gillett:  

... that OT and PT can help with, right?  

 

Cheryl Crow:  

Yeah.  

 

Rebecca Gillett:  

We still need to teach patients how to self-manage, in that there are things you can do,  

right? So-  

 

Cheryl Crow:  

Exactly. Exactly.  

 

Rebecca Gillett:  

Well, thank you so much for-  

 

Cheryl Crow:  

Oh, thank you.  

 

Rebecca Gillett:  

... the time. I appreciate it.  


Cheryl Crow:  

Thank you for having me, keep up the great work.  

  

Rebecca Gillett  

So, one of the great things about this conference is more and more, the patient voice is being inserted. So, the Arthritis Foundation sponsored two patient leadership council members, Tonya Horton and Laura Genoves, to share their experiences at patients living with a form of arthritis.  

 

Tonya Horton has osteoarthritis and presented a poster about, um, why diversity, equity and inclusion matter for healthcare providers, and for her, it was a matter of life and death, so she shared her experiences in getting her diagnosis and just the differences in care and assumptions and stereotypes that could be out there that probably affected her journey.  

 

She is a researcher herself and she shared why it helped her to become a patient advocate. She saw the need and she saw that there is a need to... broadcast the patient voice when it comes to getting equal care. So, Tonya Horton shared her experiences and then Laura Genoves was focused on the coordination of care by a healthcare team for unexpected and unusual side effects that happened during the pandemic.  

 

So, she had to rely on TeleHealth to be able to coordinate some of her care because you couldn't go into the doctor early on in the pandemic and she had some other issues arise, related to her rheumatoid arthritis and other diagnoses that she had and just shared her perspective.  

 

There is a lot of research happening all around the world as it related to arthritis, the different forms of arthritis and finding better treatments. So, I think, really... I'll say it again. To me, research is hope. And if you have opportunities to participate in any clinical trials in your area, I highly encourage it.  

 

A lot of the research out there is pretty skewed to, to white males. We need more diversity in our research because, as you all know, one treatment might not work well for you, but it works well for the next person. And so, having a good, diverse group of people participating in research is really important.  

 

The other takeaway that I would say I have is that there is hope when it comes to osteoarthritis research. As Dr. Felson mentioned, I know from research I've reviewed and the research that he's embarking on, and the PIKASO project along with the Arthritis Foundation, that there is a lot of good stuff happening to hopefully come up with more answers in diagnosing osteoarthritis early and finding treatments that work to help decrease pain.  

 

The last takeaway that I would say that I have, from being able to attend the conference in person, but also just hearing some of the latest and greatest that's happening, is how important it is as a patient to advocate for yourself, so communicating with your doctor and all of your healthcare team about what's really happening and being honest about what's happening to you and your journey with your diagnosis is so important.  

 

There's advocating for yourself, so self-advocacy, but then there's Advocacy. So, we learned this year, like, as we talk about access issues to methotrexate and some other issues we've come across during the pandemic with being able to access medications for treating various forms of arthritis, that advocacy efforts are important so that we can all have access and affordability to medication and treatments that we need.  

So, as a patient, your voice matters, whether you're self-advocating with your own healthcare team or advocacy efforts as it relates to legislation, laws and insurance coverage.  

 

If you would like to read more on some more highlights from this conference, go to our website at arthritis.org/news. We have a highlights article that shows more information on various topics that we covered at the conference.    

 

Thanks for tuning into this episode and I hope you’re left with a little bit of hope. Take care.  

  

PODCAST CLOSE:             

The Live Yes! With Arthritis podcast is independently produced by the Arthritis Foundation, to help people living with arthritis and chronic pain live their best life. People like you. For a transcript and show notes, go to https://www.arthritis.org/liveyes/podcast. Subscribe and rate us wherever you get your podcasts. And stay in touch!    

  

 

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