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Patient Stories, Podcast

Precision Medicine & Patient Advocacy: Tiffany’s Story

January 10, 2022
50 min read
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Tiffany Westrich-Robertson shares her long journey to a diagnosis of non-radiographic axial spondyloarthritis, and how that led her to form her nonprofit: the International Foundation for Autoimmune & Autoinflammatory Arthritis. She and Cheryl discuss the importance of patient advocacy and precision medicine.  

Episode at a glance:

  • Tiffany’s diagnosis journey: from initial diagnosis of RA to eventual diagnosis of non-radiographic axial spondyloarthritis
  • How Tiffany learned the importance of patient advocacy 
  • Why Tiffany formed AiARTHRITIS –  International Foundation for Autoimmune & Autoinflammatory Arthritis”
  • What is precision medicine and why is it important? 
  • Tiffany’s best advice to newly diagnosed patients
  • How you can get involved in patient advocacy and volunteer work at her organization

Speaker Bios:

Tiffany Westrich-Robertson

I am the CEO of the International Foundation for Autoimmune & Autoinflammatory Arthritis, “AiArthritis” for short. I am also a person living with non-radiographic axial spondyloarthritis, after originally being diagnosed with rheumatoid arthritis (RA). I dedicate my time to running the organization, which has a unique mission to help other patients have a voice, alongside all other stakeholders, as equals. Together, we can solve problems and develop innovative solutions that positively impact education, advocacy, and research.

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 Sponsors

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

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

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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 links:

Arthritis Life Program Links

Rheum to THRIVE, 6-month education and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. The next group starts in Spring 2022!

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

Full Episode Transcript

Interview between Speaker 1 (Cheryl Crow) and Speaker 2 (Tiffany Westrich-Robertson)

Episode 54

[Introductory music]

Hi! My name is Cheryl Crow, and I am passionate about helping people navigate real life with arthritis. I’ve lived with rheumatoid arthritis for 17 years and I’m also a mom, teacher, and occupational therapist. I’m so excited to share my tricks for managing the ups and downs of life with arthritis. Everything from kitchen life hacks, and how to respond when people say, “You don’t look sick”, stress, work, sex, anxiety, fatigue, pregnancy, and parenting with chronic illness — no topic will be off limits here. I’ll also talk to other patients and share their stories and advice. Think of this as your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started. 

Cheryl:    I’m so happy to have Tiffany Westrich-Robertson today on the Arthritis Life Podcast. Welcome!

Tiffany:   Hello! I’m so excited to be here.

Cheryl:    Can you just give a really quick intro to the audience? You know, who you are, where you live, and what kind of arthritis you live with?

Tiffany:   Sure. And I am tuning in from St. Louis, Missouri. And that’s right in the middle of the United States. And my current diagnosis is non-radiographic axial spondyloarthritis. So, as we talk a little bit about the journey, we’ll reveal what I mean by that.

Cheryl:    Yeah, wow. And I thought that, you know, understanding the difference between rheumatoid arthritis and osteoarthritis was difficult for some people, but learning the differences between the different spondyloarthropathies is like a whole new ballgame. So, yeah. Can you tell the audience about your diagnosis story slash journey slash saga? Yes.

Tiffany:   I can. Um, I’m going to use a term, I don’t think that’s too unfamiliar with the audience, the mystery patient. And that was my label for a good two years. So, I started having onset symptoms in 2007. So, I was in my — I was in my mid 30s, mid to late 30s. And I started with a chest pain, which was a, you know, I thought I was having a heart attack with. So, went to the ER, they couldn’t figure out what’s wrong with me, but it was paired with this just really massive fatigue and low-grade fever. And it was flaring, which of course, I didn’t know what that meant, coming and going, coming and going. And, and then it stopped after a few months, and then all of a sudden, the exact same pain happened in my foot. And I couldn’t put my shoe on. And then it was like, the whole left side of my body every few weeks, another area. And I know it went up into my finger, it was my middle finger. And I would joke and say, well, that’s appropriate. So, because nobody could figure out what this was. The primary doctor couldn’t. They sent me to a rheumatologist. 


And that first rheumatologist, and she looked at me and basically said, “Your labs are perfect. So, your blood work looks great. There’s nothing I can see wrong with you,” because I was very thin and in shape, I was an athlete. So, you couldn’t see the swelling even though I knew I couldn’t put my shoe on correctly at certain points. But she said,“I don’t see anything. Your labs all look great.” And then she took X-rays of like 30 locations, and she was like,“Well, I don’t see anything on the X-rays,” which we now know you wouldn’t, because you don’t see any radiographic change at onset, unless you’re really severe and been living with this for a long time without going in, right. So, she diagnosed me with undifferentiated connective tissue disease and said it can’t be rheumatoid arthritis because it’s all your left side. And that’s typical of spondyloarthritis. It can’t be ankylosing spondylitis, because you don’t have the HLA-B27 gene, you’re a female — at the time, it was thought to be a male dominated disease. And I just, the other diagnostic criteria, even though it was really concentrated a lot in my tailbone and my core, I mentioned my chest, and that was because back then there was no such thing as my current diagnosis. So, non-radiographic came about around 2013. So, and I can talk about that a little bit later if you’d like. 


But, essentially, she said, “There’s — I can’t figure it out. I’m not going to put you on medication, not even methotrexate, which is appropriate for undifferentiated connective tissue disease. Because I want to watch you get worse so I can figure out what this is going to end up to be.” And again, me not at the time being knowledgeable like I am today, I know now that a certain percentage of undifferentiated connective tissue disease cases never progress to full blown disease. So, at that time, you know, again, hindsight 20/20 and not knowing as a patient I should have been put on something. And, you know, so I wasn’t. And six months, eight months go by, and boy, did I progress. I ended up — it mirrored on the other side. I had, and I still have the chart today, because I was recording myself. It was like 24 different locations throughout my body. And it ended up I started having such bad fatigue, I was sleeping for about 16 hours a day, and anyone who knows me knows I am like high energy, hot energy, just like a energy magnet, you know. 


And so that was just not me. And then also, I just felt so lethargic. I was running a temperature for about three weeks straight. And I went to the primary doctors and said, “Something’s wrong. I think I have an infection in my ear,” because my whole side of my face hurt. He looked in it, he touched it. I actually grabbed his chest. Because I was so — it wasn’t on purpose. I grabbed him. And I’m like, “I’m sorry, that hurts so bad.” He said, “That’s inflammation in your jaw. I’m sending you to a new rheumatologist.” So, on an emergency basis. So, he sent me to another doctor who was one of the top in the country and this guy — can I say his name?

Cheryl:    Yes, absolutely.

Tiffany:   Okay, Dr. Orrin Troum so shout out to Dr. Orrin Troum. I lived in California in Los Angeles and he graciously took me in an appointment within a week, which is very unheard of as a first appointment. And before I left that office, he said,“Even if the blood work and everything doesn’t come back, I know you have something autoimmune arthritis related. And I’m going to start you on methotrexate. And I want you back in a week.” And I gotta say, within two days, my fever broke. I was sleeping back to normal. My energy was back. Was I 100%? No. But it was obvious that it was working. And that’s when he said, “I’m going to diagnose you with seronegative essentially, rheumatoid arthritis seronegative,” meaning my blood work was normal. And again, he tested me for ankylosing spondylitis again, but I didn’t meet the criteria. So, we went with RA. And that’s my diagnosis. 

Cheryl:    Wow. Wow, there’s so much to unpack there. But I’m really glad you got referred for that second opinion. And then, so to continue to how you have non-radiographic spon — oh, I’m gonna say it wrong. So, I’ll have you say. So, how did it —? Yeah.

Tiffany:   Non-radiographic axSpA. That works too.

Cheryl:    Yeah, yeah. Yeah. I know. There’s so many acronyms, I get confused myself. But so how did it get changed over time from seronegative rheumatoid arthritis to what it is today?

Tiffany:   Right. Well, this has to do a lot with being an educated patient. It has a lot to do because, well, I’ll tell you. I’ll tell you the story. So, and we’ll go into a little bit more but when I was going through that mystery patient, I was working as a vice president at an architectural firm in business development, marketing, project management; I was a college teacher for 10 years, and really on the go. This is what — you know, and I was so tired, I thought, “Oh, my gosh, am I going to have to give up a career,” so all of this is going through my head. I got to do something. If nothing else, nobody should wait two years to go through this. So, I created like an awareness movement with a bracelet, it was called the Buckle Me Up Movement. People long, long time ago may have may have heard of it. And it was also the time of Facebook and social media. So, people started ordering it and then we realized a need for the organization, which I’ll go into a little bit later. But because of that and talking to so many people and creating the organization, started becoming very knowledgeable and things that I didn’t know to look for in the past. So, I — our organization, International Foundation for Autoimmune and Autoinflammatory Arthritis, AiArthritis for short, it’s a lot easier than saying that whole — that whole long, long name. 


We became friends with organizations all over the world including Spondylitis Association of America and, you know, national — now it’s Axial Spondyloarthritis Society in UK, etcetera. And so, I’m talking to them and I, every time I’m hearing their stories or sharing patient stories on spondyloarthritis — that’s me! That’s what I’m living with. And I was just so determined to understand this. Well then, in about, let’s see — so, it was 2009 when I got diagnosed. I was eventually put on a biologic. Not at first, it took me a while, it was a health care — we had a different health system in the United States back then where pre-existing conditions couldn’t get medications. Yeah, I was in that that frame. So, I ended up not being able to get on biologics immediately until I joined a clinical trial. Anyway, the one that I was prescribed is indicated for — that means it went through clinical trials, been tested and approved for a disease — so, it was indicated for rheumatoid arthritis, but nothing else. And it did pretty good for a couple years. Well, then, I guess it was late 2012, early 2013, and I started getting so much pain in my spine, my low back. I kept — at first, I thought which I think a lot of us go through, was I blamed it on my bed. My mattress must be old. It must be my pillow. 

Cheryl:    Yeah, yeah. 

Tiffany:   And then, I started realizing, oh, this isn’t right. I couldn’t get out of bed. There were times that I was so stiff I thought if I even move a half of an inch, my spine is going to shatter. It felt that rigid. That’s the stiffness part of inflammatory arthritis; that’s one of the differentiation. And that’s when I knew, okay, this is arthritis related. And it got to the point where I couldn’t stand more than 5 or 10 minutes. I had to carry a barstool around with me around the house, I was hunched over on my tippy toes, I got stuck outside walking the dog because my pelvis locked and I was like, “Oh, my gosh, I can’t move!” 

Cheryl:    Oh, no.

Tiffany:   And so, I just basically demanded a different, a different view. So, I had at the time, I travelled back. I’m from St. Louis, lived in LA for over a decade. On my way back, I made a pit stop for a year and a half in Phoenix. So, at this time, I’m in Phoenix. And the rheumatologist was one of those offices where you don’t actually get to see the rheumatologist. It’s a physician assistant. Like, you see the rheumatologist and then when you come back for others visits you like, I didn’t like that, like just look at how I — I really prefer to see the doctor. Well, they decided to sort of start clean, start all over. Same thing. I didn’t test positive for ankylosing spondylitis and I could have told him that. My gene isn’t going to suddenly appear now like I’ve been cheating before. Um, but I went through all the tests and I went back to get the analysis. Mind you, barely can sit straight while I’m sitting in there. And that’s the physician assistant, the doctor did not come in on that visit. 


And she reads all my radiographics and she says the same thing, “You don’t have the gene, you’re not male, your radio — your X-rays all look great.” And I’m sitting here going, “Here it goes again. Here we go. No one’s gonna listen to me,” and she said, “So, I’m going to go ahead and just keep your diagnosis as seronegative rheumatoid arthritis and keep you on the same treatment.” And I — well. I’m trying to make — I did not accept that. Let’s put it nicely that way. Um, I basically just said, “Look, I have so much knowledge on spondyloarthritis and rheumatoid arthritis now. I am positive that it’s something in the spondyloarthritis. I don’t know what it is that you cannot keep me on the same medication because I can’t walk.” And that medication is indicated only for rheumatoid arthritis. At least I need to be on something that’s indicated for ankylosing spondylitis, and let’s just see if it helps. So, I wouldn’t let, I wouldn’t stop until she brought the doctor in. And so, he came in and he examined me and thank goodness I pressed because this was now 2013. And he said, “Oh, you’re a classic case of non-radiographic axial spondyloarthritis. I just heard about it at EULAR Congress.”

Cheryl:    And EULAR stands for European League Against Rheumatism.

Tiffany:   Well,it used to. 

Cheryl:    Used to.

Tiffany:   I think they changed their name and now, I’ve always — I can’t, I’m having trouble remembering it. I always have to pull it up when I say it. But they recently changed their name.

Cheryl:    It’s European Alliance of Associations for Rheumatology now.

Tiffany:   It’s so hard. It’s so hard after they changed it. But… 

Cheryl:    Oh, wow. 

Tiffany:   But just because they — it’s the new criteria started in Europe. And so, they heard about it there. That’s why it wasn’t prominent at the ACR, American College of Rheumatology, in the 2012 sessions. So, if I hadn’t heard about it, because I was really following spondy — SAA or the Spondylitis Association of America — and again, it hadn’t made it really to America. So, I hadn’t even heard about it. And it was — and then I thought, I’m textbook? I’m not textbook anything!

Cheryl:    Yeah. Well, and just a couple little factoids. I know you know these, but just for the audience to know that the gene we’re talking about, the HLA-B27 gene, it’s one of those ones where nine out of 10 people with ankylosing spondylitis have the gene. But also, 8 in every 100 people in the population has the gene, but most don’t have AS. So, it doesn’t mean for sure that you don’t have it just because you don’t have that gene.

Tiffany:   Correct. Also, more recently — now, remember, this is 2013, and we all can relate to this with COVID. Anytime something’s new, it takes a while to figure things out. So, they didn’t know this until a few years ago that the majority of non-radiographic spondy patients do not have the HLA-B27 gene, which differentiates us in that our disease may never progress to radiographic damage, which now is the kind of midline on if you’re going to be diagnosed non-radiographic or axial spondyloarthritis, which is the newer name for ankylosing spondylitis; I know it’s all very, very confusing. But so that’s kind of the middle line. And now they’re finding and more are female than male. So, all of the things that I didn’t tick the boxes, now it’s textbook.

Cheryl:    Yes. And for everyone listening, I’m gonna put links in the show notes to learn more about this because it is the kind of thing — for me at least — when I see it listed out visually, it’s a lot easier to understand. But when we say non-radiographic means it’s not showing up, you know, on imaging, right. And then axial is spine, right. And then spondyloarthritis. Well, arthritis is inflammation in the joint, itis is inflammation. Arthro is joint. And then I always forget what the spondy stands for.

Tiffany:   Oh, I just felt it in my heart. 

Cheryl:    Oh, sorry. No. Oh, it means spine. It just means spine. Apparently. So.

Tiffany:   Well, you know, I feel like it’s broader because there’s been a lot of — this is just, there’s been a lot of talk now in the rheumatology specific not patient community. But like, at ACR I was in the working group — again, American College of Rheumatology — I was in the working group at the conference where the doctors were sort of like picking apart spondyloarthritis thing. Well, it’s not really matching scientifically to the full disease. And I went,“Oh, no, please don’t. Please don’t do another change.”

Cheryl:    Oh, gosh.

Tiffany:   And that’s why with the spondy, there was something about it that, I don’t know, that they were they were challenging. But anyway,

Cheryl:    No, it’s hard to keep up with all the changes. And it’s, I think, one thing that a lot of us have gone through is that experience of being misdiagnosed or a separate category of being told prior to any diagnosis,“Actually, you’re not sick, you’re just anxious, you’re faking.” I was accused of that as a young skinny woman who was also very physically fit, “You’re fine. You’re just anxious,” you know. Meanwhile, I had lost 20 pounds of muscle, which I found out later is rheumatoid cachexia which is like severe muscle wasting, which can happen with uncontrolled rheumatoid arthritis activity. But anyway, so a lot of times we can feel very defensive and there’s a lot of trauma when you’ve had, when you’ve been like medically gaslit. But we also, like now that I’m 19 years into this and I kind of understand things more from a provider point of view too as an occupational therapist, we have to also recognize that these diseases are extremely complex and notoriously difficult to diagnose in the first place, so.

Tiffany:   Yes. One of the what you said about the anxious, they told me I clearly injured myself in the gym.

Cheryl:    You just forgot. You just must have forgotten how you injured yourself.

Tiffany:   That’s what I said. I kind of chuckled and I said, “And I forgot?”

Cheryl:    Well, you know — okay, I will say because those of you who’ve listened to the episodes have heard me refer to my injured, my sprained finger. So, because I had every single extra-articular symptom of rheumatoid arthritis, all of the systemic non-joint symptoms, but I only had one joint that hurt, which is very unusual initially, for the first two years that I was looking for relief. And then I woke up one morning and all of them flared up. But I had this sprained finger that wouldn’t go away. And I literally did think to myself,“I must have fallen on this at soccer practice,” and just maybe it’s the kind of thing like, where it didn’t hurt initially, and then it swelled up, and it hurt. But, you know, like, I have never had a swollen finger that lasted like, a year, you know?

Tiffany:   I don’t, you know, I don’t get too many new areas anymore. You know, there’s that journey when you’re diagnosed to whatever you get under your treatment control, or your therapeutic control, whatever that mix may be for you. And where it doesn’t progress, we’re not getting the new pop-ups. But I tell you, every time in those 24 — or now, you know, they expand or 30, or however many places, I always get tricked.“Well, maybe I hit my foot, maybe I —” again, I haven’t had a new onset for quite a while, but it does, it messes with you.

Cheryl:    Well, and it’s hard because our behaviors can trigger flare ups too. Like I know, for me, over activity or under activity can both trigger my rheumatoid arthritis. But I will say in my 19 years having rheumatoid, I’ve never had back pain or stiffness. So, you know, the fact that you were dealing with so much stiffness. And that doesn’t mean again, that’s one, that’s one case study, but it’s not typical for rheumatoid arthritis to have the severity of back pain that you’re talking about. So, I’m so glad that you got your diagnosis. And one thing that I think is I mean, you have so many amazing stories from your many years being an advocate and being, you know, the president of AiArthritis, but I know that you were personally part of the efforts to give non-radiographic axial spondyloarthritis its own disease code in 2020. Can you tell me a little more about that?

Tiffany:   So, um, the first biologic was approved, went through clinical trials and was approved for treating non-radiographic axial spondyloarthritis. Well, it was in the trials in 2013. And that’s when I was diagnosed. So, my rheum, that rheumatologist said,“Well, I gotta test this theory. There is one drug that is currently in like phase four trials or phase — it was phase three. Regardless, was incurred in clinical trials right now for non-radiographic axial spondyloarthritis. I’m going to prescribe you that. If something happens, you’re feeling better, we’re on to something,” sort of like the first rheumatologist. Which a lot times the rheumatologists, that’s how they, you know, have to get this kind of a guessing game. And again, within a month it was — I, up until more recently when that ended up failing and I had to go to actually the second treatment that’s indicated for non-radiographic AxSpA which I’m now on, um, I never had that situation with waking up with the spine and the walking hunched over. So clearly, clearly it was working. 


Well, that pharmaceutical company was the group that had filed, did all the research to say this justifies to have its own code, because you know, we have clinical trials in it, there are now medications. And I, as a person who saw this drug do miracles for me, not saying it wouldn’t for somebody with ankylosing or axial, the radiographic version. I and our organization are so invested in precision medicine, which is matching, you know, we can get into a little bit more about what that is, but generally to match the right treatment with the right patient at the right time based on our individual needs and presentation. So, as a person with that is my diagnosis and the difference of non-radiographic — it’s all on the same spectrum of spondyloarthritis. So, will I ever advanced to the radiographic? Maybe. So, the radiographic, we’re never going to go back, right. We could only go forward. And yes, that same treatment may do both. But as a person who is identifying with this gradation on a spectrum of a disease, and knowing there’s a treatment that’s been clinically tested and worked on me, I felt passionate about making sure that there was a code.


But the other reason has to do with identity. And I finally got a name for my diagnosis. And now people are telling me, “Well, it doesn’t really matter. Doesn’t matter if it’s non-radiographic, it’s still axial spondyloarthritis.” Well, if you’re thinking about precision medicine, which there’s for personalized medicine, is think about go to the doctor, what are my likes, what are my preferences, holistic, exercise, diet, I prefer pill form versus an injection. All of it is personalized; personalized to your care. Precision medicine is science-based. We’re talking about blood work; we’re talking about genetics. There are specific blood specimens and that type of thing. So, it’s like you hear going with your blood test, and I’m, you know, positive, my inflammation markers are positive. Those are all biomarkers and research is starting to show how some patients may have worse progression if they have elevated biomarkers, blood markers, and then how is that affecting the way we respond to treatments. And our organization has done a lot of projects in this space. 


Knowing that and wanting an identification, I was not willing to let the slide and just say it’s okay that we don’t have our — we don’t have our own code. Because in precision medicine, if we never, if some of us never go to the other spectrum, we need to know why and what treatments may work best for us. And maybe there’s more powerful ones that need to work for those who move forward, or combination therapy. So, thinking of the bigger picture of the needs of the community, I just — I had to do something. So, I wrote several personal letters under the AiArthritis umbrella, I mean on our letterhead, but I explained all of the stories I was telling you of my experience, and also went into identification and the importance that a patient has a name to their disease and the degree of severity of their disease. It’s important for us if we’re going to be on treatment journeys to know where we are in that spectrum. And then we kept getting pushed back. The meeting kept, “Oh, somebody else made the docket; somebody else made—” So, I booked tickets, I was ready to go and testify. And it got pushed back twice.

Cheryl:    Wait, where was the meeting — who was the meeting with?

Tiffany:   The CDC.

Cheryl:    Okay. 

Tiffany:   So, and they do, it’s like a hearing. And the pharmaceutical company who does all of the research, the clinical data, they present. And then they have other testimonies. So, Spondylitis Association of America was also going. And we were going for kind of the patient perspective. But after we got pushed back twice, I developed a social media campaign where I had post — I created posters and a hashtag for code for NR-AxSpA, and I tagged the CDC in every post and encouraged patients that had this diagnosis to weigh in. So, they were getting bombarded not only from the letter, but from social media with the importance of this. So, it was sort of creating this army of patients to have a voice around it. So, it’s not just the two organizations, you know, and in my personal efforts with the letters but opening the door so that all people who want to be at that meeting essentially can be there. And then COVID happened. We didn’t even — all of a sudden, I get this notification that they had to expedite things because of COVID. They had obviously, CDC they had to move, they had a lot to do, and they pushed through some of the, without having an in-person meeting and that was one of them. 

Cheryl:    Wow. 

Tiffany:   And then it was like, one day there it was. We had a code. And so, that was 2020.

Cheryl:    Wow. So even though the term, like your doctor in 2013 said you have non-radiographic axial spondyloarthritis, that was wasn’t actually a code that they could use in the visit. Fascinating.

Tiffany:   And as you probably — as I know you know, Cheryl, but I think it’s important for the audience to understand the importance of coding in a very general term here, especially United States. It’s a little different in your health care system, depending on where you live in the world. But in the United, you know, if we’re just talking about the United States, if your doctor matches you with a prescription, and it’s not indicated, like they can’t, if it’s not indicated for your disease, then you may not get access to it. That was a whole point of why I pushed as well. I knew this because when I had, when I was diagnosed with rheumatoid arthritis, and it was on my — they couldn’t give me one that was that was indicated for spondyloarthritis unless it also had RA under the umbrella. Because my diagnosis said rheumatoid arthritis, the insurance company could not authorize a biologic that was not indicated. So, the one that I was on, that I was given to that was in clinical trials, was not indicated for RA. So, they couldn’t just, you know, it was just a, it was a mess. And that was another big, big moment where I thought it’s really important to know what you have, to have the right diagnosis, and not, it’s not okay in my opinion for patients to — like, for me to have to go back to say I have rheumatoid arthritis just to get a prescription. 

Cheryl:    No, no.

Tiffany:   That’s not okay for me, because that’s in my medical record. 

Cheryl:    Yeah. Yeah. That’s — no, and that’s so important for people to know. Yeah. So, the diagnosis code, what you get diagnosed with, that has to — just again, to reiterate — that has to match what the prescription that you’re put on is indicated for, for the insurance to cover it. But that still doesn’t mean they’re gonna cover it, of course.

Tiffany:   Of course. And then, and then it gets really complex. As far as, you know, as we evolve; again, everything evolves. So now, I believe, like, even if — I have to ask, actually, if I was, if they just put axial spondyloarthritis instead of ankylosing spondylitis, or like that umbrella term, I believe regardless of which one, you could get the medication. Don’t quote me on that. But that’s something I think I want to look into a little bit more. But part of what insurance does is they also can prescribe something that has proven to be beneficial in similar diseases. That’s like diseases that don’t have approved biologics. They kind of borrow from, you know, other similar diseases, but we could go into a whole new show.

Cheryl:    I know. 

Tiffany:   For all of that.

Cheryl:    You know, I have been procrastinating on doing one because I always ask people, you know, let me know any topics you want me to cover. Like I want it to, you know, the podcast to cover things that people are interested in. And one of them is just — and I have it listed on my master list — it’s just demystifying insurance for biologics. And I’m like, I have to like get all of my strength to do that.

Tiffany:   And that might be a three-part show. 

Cheryl:    Yeah, yeah, that’s gonna be a lot. But I want to go back to precision medicine because this is such a exciting development. And I’ll just weave maybe a tiny bit of my personal story in to help kind of contrast. So, when I was diagnosed in 2003 with rheumatoid arthritis seropositive. There, as to my memory, unfortunately, I didn’t keep all my medical records. That’s note to everyone else, do keep all your medical records. My memory and my mom’s too is that we were told there were three biologic medicines. I believe they were the TNF inhibitors — Enbrel, Remicade, and Humira. And I don’t remember why but we started on immediately on methotrexate. I know why, because that’s the gold standard that you start on. But then I don’t know why we chose Enbrel versus the other ones, but we did choose Enbrel. And back then I was a little bit lucky in that I was early enough to where there wasn’t this fail first thing.

It was like I just got approval to get on Enbrel right away. And so again, those were the olden days. But the not good thing about the old days was that we didn’t have any data to know, you know, Cheryl is, you know, 21 years old, she has these characteristics. Like, this Enbrel may work better for her than Humira or Remicade. It was, like you said earlier, the phrase,“It’s a guessing game,” right. But now flash forward 19 years, there’s been so much more data to where we can say like, you know, science-based, “Okay, this is Cheryl’s blood markers, genetic markers. These are the past drugs she’s responded well to and not well to. This is all her different, you know, inflammation markers. X medicine is going to be more likely to work for her than others.” Is that a good summary of what —? 

Tiffany:   What a great summary.

Cheryl:    Okay. Okay, well, we covered it now.

Tiffany:   That’s a great summary. You know, the thing about precision medicine and why our organization became so highly invested in it has a lot to do with what you just said. And what I said, I don’t know, we don’t always know what’s going to work best. Even the older ones, even the ones that have been true, tried and tested, most clinical trials, here’s sort of the rub. Most clinical trials when they recruit patients, they’re recruiting what they consider a general patient population. So, you look at the inclusion criteria. And some of them have very stringent — they’ll say you must have elevated blood markers to this level, big one, you must not have any comorbidities, you know. Like, um, you know, Sjogren’s syndome.

Cheryl:    I think I know one person, I know one person who has no comorbidities

Tiffany:   Well, you know, it’s right. So, there’s those things. And there’s a — it’s very stringent to get into those. And what they’re, they need a certain amount of number, a large number in order to show that this is the numbers that we’re getting, the percentages of efficacy that this is working in the trial, and it’s safe, and it’s effective. That’s what they’re testing for. Well, what happens is those drugs get out onto the market, and then they have about a 30% to 40% rate of if they work. That’s why like you, Cheryl, Enbrel work great for you. I tried it, nothing. Nothing. And it is indicated for many, many diseases, right. I mean, nothing. And so, we went off that three months. I was like, I can’t take it anymore. And again, it’s just why? Why did it not work for me? And so, in 2015 for the organization, that was our big year. We started — we’re based on conversation. Our mission is to help other people living with these diseases, these autoimmune or autoinflammatory, both two sides of the immune system. That’s the difference between autoimmune, autoinflammatory; innate or learned side of your immune system. And so, this auto plus the inflammatory arthritis. So, help people like us to have a voice as equals next to other stakeholders — so, whoever has a stake in your healthcare — to solve problems that we as people living with the diseases have identified if we just did this, maybe there would be change. So, trying to get that patient rehabbing the‘Aha’ moment. 


And from there, we get everyone together as equals, and then we solve problems and they impact education advocacy research. Well, in 2015, we said, “Well, if we’re going to really do this, we need to create, you know, do some research, find out what the problems are, what what’s important, all different perspectives.” And what kept coming back is why doesn’t my prescription work? Why does — why does it work for Cheryl? Why doesn’t it work for Tiffany? And we started realizing this huge need if we’re really going to do treatments for all people, that we need to consider these what we were calling ‘typical atypicals’ or subgroups. And, you know, the big question, how do you get to the subgroups?

Well, it’s, you know, we’re working on it, we’re taking time — shout out to FORWARD Databank or formerly National Database of Rheumatic Diseases, because they have developed an AiArthritis databank databank to help us create those subgroups that lives in their servers. And in saying that, we also at the same time, we started recognizing this need.

We did an ethics of step therapy investigation, which is what you were talking about, Cheryl, with the fail first, where an insurance company is going to say, “Well, that’s great. You can be prescribed it but that biologic, but we have the data that says this drug needs to come first. And you fail that and then you can do — or fail two things or whatever that is,” and then we went and did an investigation with bioethicists and said, okay, is it ethical to prescribe based on cost? And what ended up happening was I had this ‘Aha’ moment that when I used to do clinical trials, I couldn’t get in them because the inclusion criteria was too stringent. So, I was not a general patient population. Yet, the insurance company is basing you have to take this largely on clinical trials that I couldn’t be in.

Cheryl:    Yes, you have hit the nail on the head. Yes. 

Tiffany:   It was like a huge ‘Aha’ breakthrough moment. So, then it was like I should, I should share it with you. I have this huge — it was a huge wall, like an FBI wall. And I, and because that’s my specialty, I solve problems and connect the dots, and that’s where I hold organizations-based problem solving. And I’m like, red lines, and whatever. And it was like this domino. I was like, oh, my gosh, oh, my gosh, I couldn’t be in them.

But the general patient population, that’s the research or I mean that the efficacy and safety doesn’t include me, then when that happens, also, the doctor is ethically obligated to treat to the individual characteristic of a patient. And in those cases where you’re atypical, it should default to the onus of the doctor to treat to the ethical obligation of the individual. So, we wrote the paper, I’ll be happy to share it. And it was that moment, that paper plus the atypical, where we realized the future of our community is in precision medicine, because we have an opportunity to look at what’s working, what’s in a post-market surveillance. So, it’s called post-market surveillance. Doing research to find out a little bit more about what’s working, what’s not working, and then using that data hopefully to influence our access to treatments. 

Because if we can show, well, so-and-so, their doctor believes they didn’t meet this inclusion criteria. So, in essence, you know, over-riding, if you will, we felt that that was a big, a big step towards it. So since then, we have invested in, you talked about in a pre-interview, shared decision making. We invested in starting a project called Preparing Patients for Precision Medicine, and then kind of a side note in clinical trials, recognizing the general patient population — me, other people who couldn’t be in a clinical trial — there are going to be a new wave of clinical trials for precision medicine. And they’re starting to be underway.

We just saw research being presented really this year, at both EULAR and ACR conferences where they’re really getting into precision medicine, testing those subgroups and sub-populations. So, we had decided, great, the research is being done. The FDA, Food and Drug Administration, and the EMA, European Medicines Agencies, the ones that review the clinical trials and set forth procedures, they’re working on a new math model so that maybe I could be in a trial, maybe somebody else who never could be in a child could be in a trial, because we’re testing these medications now for the atypicals. Who’s teaching the patients? So, we started this program to educate on current trials, future trials, and basically preparing patients who want to be in these future trials because you’re needed. You’re going to be needed so that we have that data that we can go back, right, and say, “Okay, well, we weren’t general population, but we were atypical and we, this worked for us.” So, we’re on the way. We’re on the way.

Cheryl:    That’s so exciting. And just as a reminder, every time Tiffany says, you know, her organization, it’s referring to the International Foundation for Autoimmune and Autoinflammatory Arthritis, shortened to AiArthritis. But, yeah, and I think, you know, just from my understanding from attending the ACR, American College of Rheumatology Conference this year, it can even, you know, precision medicine can apply even to some of the older medications like methotrexate.

I went to a talk that was about the, let me say this correctly, the speed at which people metabolize methotrexate relates directly to the severity of the side effects. And so, as I’ve always been like, why, you know, why is it that I don’t, I get nausea – every other medicine that says nausea as a possible side effect, I will get nausea, but not methotrexate. Like, that’s my one lucky thing because methotrexate, the most common side effect is nausea. But they figured out that people who metabolize it, of course I can’t remember throughout my head whether it was — I think it was the slower metabolizers are less likely to get nauseous because the people metabolizing it quickly, they have more of it.

You know, and it’s like, things like that and then okay, so then, how can we determine someone’s metabolism, you know, so you can say, “You know what, we can see that you’re the type — you fit in this category of patients that metabolizes it quickly, therefore maybe take — I’m going to give you Zofran like an anti-nausea med,” or, you know, that ability to really give, like you said, the right patient the right treatment at the right time. It’s really exciting.

Tiffany:   Absolutely. And historically, you know, this has been, this has really been in the forefront in the cancer community. And there is even legislation and, you know, laws and policies that are related to access to genetic testing. Think, you know, biomarker testing things that might lead you to a more precise treatment. Well, we’ve joined the one and only coalition for, it’s they say personalized medicine, but it really is precision medicine, and we’re the only arthritis as up to date, which is 2000 — at this time, it’s 2022 in early year. Because even though they don’t talk about anything in our diseases yet, we know that it’s going that way, right. So, getting versed on what is being accepted in another community in precision medicine is going to be important.

And you know, hopefully translating those issues also to the patient community, those of you who are interested in utilizing your voice and your experiences and your stories to influence laws; those are access to your treatments. And man, I’d love to be able to be go into the doctor’s office and have that covered, genetic testing and all of this, to be able to say you could possibly do better on this this medication, because then what? Better quality of life, higher percentage of, you know, chances for remission, all of that good stuff.

Cheryl:    Yeah, I think, you know, every rheumatologist going into the field is doing it because they, hopefully, because they want to, to help people and precision medicine is a tool to make them better at that. So, it’s — so, what are some ways that — you mentioned many, many different ways patients can get involved, but I want to make sure that I give a chance for you to shout out ways that they can get involved specifically like with volunteering with or just getting involved in the various many initiatives you have for AiArthritis. 

Tiffany:   I’m laughing because we really do –

Cheryl:    We’re like kindred — you and I are kindred spirits. And we’ll have a lot of ambitions of helping, yeah, the communities.

Tiffany:   You’ve just said the word. All of our funders always say, “Boy, your organization is so ambitious!” And I was like, “It’s true, but we always get it done.” So, you can be ambitious and be a dreamer, or you can be ambitious and a doer.

Cheryl:    You’re a doer. Yeah. 

Tiffany:   Yeah. And you know, I may have started this organization, but it is nowhere near just me. And we did hire a first group of employees this last year because we’re doing so much and we need the volunteers. And getting involved in our organization is I think very unique, because we always say doesn’t matter if you’re the CEO, or me, or a brand-new volunteer, you can get involved as much as you want. If you want to help brainstorm on new innovative projects, come on. I’ll invite, I’ll teach you how to brainstorm. Like, if you want to be part of conferences, while we can’t pay for everyone to go if they ever get back in person, we have a whole virtual online Grow With Us program.

Like, if we’re doing it, it can never just be our voices. Never. It always has to be as many perspectives, experiences, and opinions. So, the main way to kind of get involved and find out about all of these opportunities that involve education or awareness, advocacy which is public policy, or legislation and research, which is always patient included or patient led in our organization, we have a lot of projects we as patients have actually masterminded. Our brainchild. And we use professionals as our advisors rather than the other way around.

You can go to AiArthritis.org And you can see all of the work we’re doing. You can go to backslash /volunteer to sign up to volunteer. We’re actually hoping to recruit at least another 40 or so volunteers from around the world. We are international because we do have so many projects and so many opportunities to connect people living with our diseases and other stakeholders. So, if there’s other health professionals that are also listening, we need you at the table too. And so, we do, our mission is to connect and have conversations as equals.

And the other thing is to check out, we have a talk show as well. And that is AiArthritis Voices 360. So, wherever you do podcasts, and you can find us. And if you don’t do a lot of podcasts we have, it’s called 360. Because we take it to all of these different platforms. So, it has the audio, it can go to Facebook Live, it can be in person. It’s anywhere we can get a perspective or an opinion. And then lastly, on our website, you can you can click on the homepage to join the AiArthritis Voices Program. That is brand new based on all of the work we’ve been doing for the last five years on individualized care, making sure voices are at the table. It’s our mission in action. So, if you sign up, all stakeholders, all free, then you will be notified of any and all opportunity to be able to have your voice heard at the table. And so, that’s the website. You can also find us on social media with that@IFAiArthritis on all of our platforms, the IF standing for the International Foundation for AiArthritis.

Cheryl:    That’s so great. And I realized that I did want to take it, to go backwards for one second chronologically. When did your organization get incorporated like as a non-profit?

Tiffany:   In 2000 — well, it was in 2011, we’re 10 years old, and we got the notification in the mail on my 40th birthday. 

Cheryl:    Oh, my gosh! 

Tiffany:   I was out and I came home, I opened the mailbox and I was shaking. Because usually it takes like two or three rounds to get everything ticked off. I couldn’t believe — I tried to dial the co-founders and I was shaking so hard. I couldn’t even, it took — it just really caught me off guard. I always say, “This is the best birthday gift I ever received.” I made a personal choice in my life not to have children. And I always say, AiArthritis is my child, is my baby. And how more important, it was born on my birthday.

Cheryl:    Oh, that’s just — I can’t believe it. I just turned 40 this year. So yeah, that’s a huge — that’s a huge milestone.

Tiffany:   Oh, yeah! On Facebook, I saw, because I had turned 50. 

Cheryl:    Oh, yeah. 

Tiffany:   And I had put up, I don’t know what, a shirt or something I bought in 40.

Cheryl:    I copied you because yours, yeah, and I copied your shirt. ‘Cause it’s like, founded in 1981. Yeah. No, but that’s so great. No, I think I know that sometimes, I’ve actually had a couple people say to me, “Oh, my gosh,” you know, because I’ve had so many patient advocates, I’ve been lucky to have other patient advocates on the podcast so far. And they’re like, “I feel so like unaccomplished comparing myself to the people that you’ve had on your podcasts.” And I’m like, the goal isn’t to like, make anyone feel like you’re not doing enough because you’re not like Tiffany or Mariah, or, you know, the goal is to just take, you know, take the lessons that people are sharing, you know, on this podcast, and like, in this case, you know, about personalized medicine, about getting involved. And, you know, certainly I don’t want to make anyone feel, you know, bad about themselves.

Tiffany:   100%. And, you know, and I think that’s a really good opportunity to just reiterate, if you are one of those people and you have the passion to want to do more, I cannot express it enough. If you want to manage projects, if you want to be part of it, we let you do everything. You can be as involved or not involved as you want and it’s all flexible. So, we’ve set up, we’re open 24/7, 365 days a year, we’re all virtual, always have been because we’re led by persons living with diseases. We know we need flexibility, time for flaring and, you know, commitment issues on you know, if we’re gonna — if we’re gonna flare and I think we get a lot of patient people that are existing patient advocates, and people who just want to be able to do more because they know we will give them the platform to soar as high as they want.

Cheryl:    No, and yeah, oftentimes when people are feeling so frustrated or so let down by the healthcare system or lack of access to meds, I will say, you know, we all talk about The Spoon Theory, right, or the battery charger metaphor. It does cost energy to become involved, to become involved in non-profits and advocacy, but it also recharges you because it can make you feel more empowered.

Like, you know, I’ve been fortunate to volunteer with the Arthritis Foundation, going to conferences, speaking as a patient voice; I’ve also volunteered with the American College of Rheumatology as an occupational therapist. So, I’m kind of like wearing different hats sometimes, you know, and you know, and I’ve gone to Washington DC, with the American College of Rheumatology to meet with legislators. And I know that that’s opportunity with your organization too. And it’s just, you know, and there’s Creaky Joints. There’s a lot of non-profits, and everyone is grassroots, you know.

Everyone is just trying to do, to fill, to solve the problems, like you said, solve all these problems in our healthcare system and in our ability to competently manage our condition, you know, the best we can and then also cope. I do want to also mention, RA Guy Foundation is the only non-profit — I’m trying to get him on the podcast — he’s the only nonprofit exclusively devoted to the mental health. I don’t know if you know him, but on to the mental health aspects, which I think is so important and so dear to my heart.

So, you know, if yeah, if it’s, I don’t know if this is like a personality trait, but I used to think that like, oh, you know, like, I have to wait until I know everything till I can get involved. Like, I was scared. And I don’t get scared easily talking to people. I’m talkative, you know. But I was scared to go to my state Capitol with the Arthritis Foundation the first time because I was like, well, I don’t I don’t remember everything about how the government works. Like, I don’t know, like, I forget how a bill gets passed. And they were like, all you have to do is share your story, you know, and it’s so empowering. So anyway, preaching to the choir here.

Tiffany:   But the point being, I think, a very important point at that is there should be no fear, especially when you’re working with people like Cheryl or like most people who live with these diseases. I mean, we were all there once. We all did our first ones. And I think we’re all kind of in this together and very willing to embrace you and help you and again, be all you can be. And it’s just do it once, and then it’s not scary anymore.

Cheryl:    It’s so true. It’s so true. And the only last thing I want to make sure to ask you is one of my favorite questions to ask everyone who comes on the podcast, whether they’re a healthcare provider or a person with lived experience, you know, what message — and maybe this is already, it’s okay if you repeat yourself — but what would you say to somebody who’s newly diagnosed, like diagnosed today, you know, with non-radiographic axial spondyloarthritis or rheumatoid arthritis, so what message would you want to say to them?

Tiffany:   I’m actually going to borrow a quote from Kelly, Kelly Conway. Not the Kelly Conway of the politics but shares the same name, and who is a co-founder of our organization. I love this quote. And she says, “Being diagnosed with an AiArthritis disease isn’t the end of the world. It’s another way of living in it.” And I just love that. Because yes, there is going to be — you’re going to have to alter certain things. It is a pretty constant juggle of scheduling and trying to figure out flares. But just remember, it’s just finding the other way of living. And we’re all here to help.

Cheryl:    I love it. You’re not alone. Yeah, I love that. And no, thank you for clarifying, because I know of course, our Kelly Conway, the one in our community of rheumatic disease people. But I forgot that there’s the other Kelly Conway.

Tiffany:   There is. And they even share the same middle name. And it’s Kelly Anne Conway.

Cheryl:    No way.

Tiffany:   Oh, it is. So, she was not real thrilled about having to share names, you know. But yeah, so just to clarify for those who have been following politics the last couple of years, not the same person. That is not a co-founder of our organization.

Cheryl:    No, no, no. And so, I am going to include, you know, all the links as again, as Tiffany said on social media, she said @IFAiArthritis on all the major social media platforms. And then I’ll also link to the website. But I have a lot of other websites like the EULAR, and the Spondylitis Association of America that I’ve been taking notes on as we’ve talked, so I’ll be sure to mention those too. But thank you so much. I know you’re very, very busy with all your different initiatives and managing your own care. So, thank you so much for coming on the Arthritis Life Podcast.

Tiffany:   Oh, thank you for having me. It was fantastic. I had a great time.

Cheryl:    Yay! Okay. Bye-bye for now.

Tiffany: All right. Bye-bye!

[Ending music] 

Thank you so much for listening to today’s episode. This episode is brought to you by Rheum to THRIVE, a membership and support community where you’ll learn how to develop your own THRIVE toolbox so you can live a full life despite your rheumatic disease or chronic illness. Learn more in the show notes, or by going to www.myarthritislife.net. You can also connect with me on my social media accounts on Instagram, Facebook, Twitter, and even TikTok. Check out the links in the show notes.