Building The Noise with Tiffany Westrich-Robertson: EPISODE 020

SPEAKER_02 0:00

I was a mystery patient for about two years, very frustrated. The doctors kept saying, Well, we think it's something in this connective tissue disease realm, but we don't have enough information to diagnose you. So we're going to watch and wait for you to get worse. And that is not what you want to hear. But unfortunately, we still hear that same story today. And it devastated me because I thought, wait a minute, I'm going to get worse.

SPEAKER_03 0:30

Yeah.

SPEAKER_02 0:31

And I did get worse. It was, uh, I got to the point where I was sleeping about 16 hours a day. I remember sitting there right before getting diagnosed to myself out loud saying, I don't know what this is, but whatever it is, I will dedicate my life to making sure that people do not continue to experience these issues with the healthcare.

SPEAKER_05 0:58

Welcome to the Building the Noise Podcast.

SPEAKER_00 1:01

Ladies and gentlemen, welcome to Building the Noise. I'm Matt Cheresco, and today I'm joined by Tiffany Westrich Robertson, a patient research leader whose work sits at the intersection of lived experience, evidence, and decision making. Tiffany's career has focused on patient-facing survey design, coding, analysis, and professional focus group moderation. She served as patient research partner with OMRAC from 2015 to 2024, was a patient grant reviewer for NIAMS, and now helps work across ISER and the Each PIC coalitions focused on drug affordability and access. She's also the founder of AI Arthritis, an organization she founded 15 years ago. What makes Tiffany's perspective especially powerful is that she brings both research discipline and lived experience as someone diagnosed with non-radiographic axial spondial arthritis after years of what she calls being the mystery patient. I know that one all too well. Her work is about making sure patient-reported needs are not treated as background noise, but as evidence that can shape research, policy, access, and real-world decisions. Tiffany, it's an absolute pleasure to have you on Building the Noise. Thank you for joining us.

SPEAKER_01 2:14

Well, thank you for having me, Matt. I'm really excited about the opportunity to have this conversation with you today.

SPEAKER_00 2:21

Yeah. So my first question that I have for my guests is always the same. What is it that you do? We've heard that you're involved with a lot of groups, but how do you talk about the work that you do?

SPEAKER_02 2:32

Sure. And you did a very good job. So thank you. I'm going to take that bio and run with it. There you go. So in my background, it was before I say in my prior life. So before founding AI arthritis, as you said 15 years ago. And that is actually, that is, for those who are not familiar, that's an acronym for International Foundation, Autoimmune and Autoinflammatory Arthritis. And that's why we say AI arthritis, because that's very long. And uh we and so when I founded the organization, I was doing business development. I was a college teacher, and I being a mystery teacher.

SPEAKER_04 3:11

Where did you teach?

SPEAKER_02 3:12

I taught at a couple colleges in the Los Angeles area. Oh, okay. Yeah, I taught uh advanced commercial design and the business of design. So a lot of project management and the stuff that the other design teachers didn't want to teach, but it was always sort of business oriented. That and realizing that I had a strong knack in teaching in a way that the students really resonated with. I also was all always given the international students because they found that they were able to learn better when I was teaching them. I just had a way of translating the messages and the material in an easier, understandable way. And those two pieces really helped drive how AR arthritis was founded and even run to this day.

SPEAKER_03 4:17

That's fantastic.

SPEAKER_02 4:18

Yeah, so I was on the cusp of being a mystery patient. So with my, it was actually an awareness bracelet. So with design, I kind of dabbled in jewelry. And I was a mystery patient for about two years, very frustrated. The doctors kept saying, Well, we think it's something in this connective tissue disease realm, but we don't have enough information to diagnose you, so we're going to watch and wait for you to get worse. And that is not what you want to hear, but unfortunately, we still hear that same story today. And it devastated me because I thought, wait a minute, I'm going to get worse.

SPEAKER_03 4:59

Yeah.

SPEAKER_02 4:59

And I did get worse. It was uh I got to the point where I was sleeping about 16 hours a day. I I am a very high-energy person. It's something that a lot of people, when they meet me, well, will refer to immediately notice this energy or contagious, contagious energy. I get a lot. That was just zapped. I I had no personality, I had no energy, I had really thick brain fog. I had pain in over two dozen places of my body. And then I woke up and I had extreme pain in my ear. I thought it was an ear infection. Went to a doctor, he pressed on my ear, he said, That is your jaw joint. That's not, there's no infection. You need to get to a different rheumatologist. I was at one. So he got me in on an emergency basis, and I left with the initial diagnosis of seronegative rheumatoid arthritis, which means my blood work didn't have any of the markers, which you can be diagnosed with RA without uh positive blood work, which is another issue that leads to the mystery patient. But this doctor knew it eventually uh became non-radiographic axial spondular arthritis, but it wasn't misdiagnosed. That my current diagnosis didn't exist 15 years ago. So I just got diagnosed was something that was the closest that I could be diagnosed with.

SPEAKER_00 6:22

But so you you had to wait to get worse, and the science had to catch up with you.

SPEAKER_02 6:28

Well, that in my own persistence to just keep looking for answers, right? And so when I did get that diagnosis, something that I think a lot of people can resonate with too is this immense feeling of relief, of validation. I knew something was wrong, I needed some answers, and I really was desperate to get on some kind of therapy to help me so that I wasn't feeling this way anymore and I could be more productive. And I was, I remember sitting there right before getting diagnosed to myself out loud saying, I don't know what this is, but whatever it is, I will dedicate my life to making sure that people do not continue to experience the these issues with the health care. And when I got diagnosed, I created this awareness bracelet to try to rebrand what arthritis was because too many people, in addition to being relieved, I also got a little frustrated because people would say, Well, just go. My grandma has that, go eat ginger and your joints. And I said, Okay, well, they don't even understand this is a full-body autoimmune disease. This is not the same thing as common arthritis or osteoarthritis, and then that triggered me into this direction to try to rebrand what it could look like. Well, that was also in 2009 when Facebook was starting to emerge, and the bracelet got picked up by a blogger on Facebook, and what as viral as it could be for 2009, I started getting pictures from I mean, name a country all over the world, and my business background. I started with every email and order that came in, I replied back and I said, What's your story? This is mine. And so many people replied back with their with their story at a time where you didn't meet people from around the world, right? Social media was fairly new. And with that, we all found each other on social media, started talking and having these conversations, and it was through those conversations, which is really research or data, conversational research, we had these aha moments that said, This is so interesting. You have psoriatic arthritis, you have lupus, you have juvenile arthritis, you have Shogren's disease. However, we all have similar symptoms, similar story, similar journey, similar treatments, misdiagnosis, rediagnosis, additional diagnosis. And it was that aha moment where we all realized we do have a commonality in these umbrella of diseases, these 23 diseases. So we did look uh and into research, found the term autoimmune arthritis that was put forth in the 80s by researchers to differentiate our osteoarthritis from the full-body inflammatory arthritis diseases, and said, Well, there needs to be a nonprofit that focuses on these 23, so we can at least narrow down the hundred plus auto diseases. And so we we I said, okay, I run businesses as far as I was vice president of an architectural firm doing the project management and business development and a teacher. So I'll just teach myself how to run a nonprofit, and I already know how to do the business portion of it, so I decided to give up my corporate job, which my dad thought I was insane. They did. They're like, What are you and a non-profit on top of it? You're not even starting your own business, you're starting a nonprofit, and I just believed in it so much, and it it felt like the people, the patients, the community felt the need that I just felt driven that this was my purpose. And so I it took a couple years to really ramp it up. It took probably five or six for me to start being able to make it a job, but I had to take a lot of a lot of part-time jobs, and one of them was at uh because we were starting to emerge into research and making this lived experience driving all we do. So patient design resources, tools, guidance. Uh, and I went and worked at a qualitative research uh company so I could learn the ins and outs of the focus group moderation. I became a focus group moderator and learn how to budget and code and analyze and all of those things. So it was once I was able to do this full time, then that was a great, a great backdrop, great job of experience.

SPEAKER_00 11:27

That's amazing. So so I was gonna ask, you know, did you feel your experience as a teacher and as a business owner did that help in the nonprofit space? Because of course, a lot of folks we speak to that start nonprofits got into it very much like yourself. There was nothing else. So they felt, all right, I'm gonna do it. But there's obviously a learning curve that comes with that. How much do you think your background assisted you in that opportunity?

SPEAKER_02 11:55

Yeah, that's a really good question. And I'll say, I'm still learning also. I mean, I, you know, just constantly what's working, what's not evolving. But coming into this with the business background, I can say in the beginning, because we are peer-led and patient-led, so we didn't have employees or staff, it was a lot of myself included volunteers. And I some of the patients in the beginning didn't understand why I was calling referring to this as a business model, organizational model, because there was it, they were there for uh with passion, right? I mean, we're all passionate about this, and so I actually got a little bit of pushback in the beginning for bus being business minded, but then as started building this out, I think people a lot of people started realizing, well, this it needs a business model because otherwise it could filter out, just become become more of an awareness movement, which originated as, and there's nothing wrong with that, but we wanted to build it out as a full-fledged foundation with research and public policy and education and awareness, and that required a business model. So I didn't have to go out and get advisors, yeah, super helpful, right? It did take uh it did take education on my part to to read how to toggle a business, a for-profit business model into a non-profit business model. But I figured who better to teach me than me, because I'm a teacher.

SPEAKER_04 13:29

Yeah, sure.

SPEAKER_02 13:31

So it it really it took it took time to to understand that, but it in the essence of it all, a non-profit is still a business. You're still operating as a business, it's just a non-profit business.

SPEAKER_03 13:47

Yeah, you still need cash flow.

SPEAKER_02 13:50

You still you I you can't hire, you can't and and we're not a volunteer-only organization, some choose to be that way, but we chose from the beginning, we wanted to be a mid to large size nonprofit, and that was the model we chose, and just haven't stopped since.

SPEAKER_00 14:11

That's absol absolutely amazing to hear because as you know, in this economy, the contracting budgets of pharmaceutical companies and of just um discretionary revenue for the general individual has made things very, very difficult. Um, but I there's not a day that goes by that I don't see something from you or your group that's going on, that the work you're out in the field, your energy, as you said, not only does it come across in speaking with you, I see it every single day. You are you know somewhere doing something, and it's just impressive to watch.

SPEAKER_02 14:48

Well, thank you for that. And yeah, part of what what in the introduction we were talking, I mean, I I taught this is you know, the AR arthritis and building that, but it it was in 2024 where we also for the first time became the leader for the of our first coalition, and that has elevated our work to a next level. So it was these in the United States in particular, the a new movement into government uh drug prescription, drug affordability movement, where you have CMS or the Centers for Medicare and Medicaid Services doing uh their inflation reduction act or IRA drug negotiations, as you may uh hear them being called, where they're taking lists of drugs and negotiations. I you use that that term loosely. And then at the same time, we had prescription drug affordability boards or PDABs. Some of them are called slightly different, but they're essentially government-appointed boards. Some have stakeholder councils, one PDAB is different than every other PDAB, so there was a lot going on. What are these? What are they trying to do? Two years later, I think we're still trying to figure out what exactly they're they're trying to do, but they were marketed and promoted as helping patients put money back in their pockets. And what we and so we thought, okay, if this is about patients, patients have to be involved because everything, our model at AI arthritis is patients must be infused because we know the solutions we need better than anyone else. So at the time, also I call it a new era of patient engagement where we were being asked as patient organizations to almost step back a little and they didn't want our patient advocates, the people who usually are testifying, the people who are usually contacting their legislators. We at A arthritis call that the 5%. You've got 5% of patients. That's just, that's just they love that. And but you've got the 5% that may not know anything about any policies. They they know they're experiencing challenges, possibly affording their prescription drugs. They don't know what that's called, they don't know if it's step therapy or an accumulate. And it's okay. They don't necessarily have that. And so what AR arthritis has always done is we create these programs where patients are the teachers, and we're really just trying to gain your experience and communicate with each other. We will help you understand what that issue is, right? So we kind of do things from the ground up. So at this time, knowing that the patient organizations we were kind of questioning what is our role now? Because usually you would have an established patient organization sort of leading the way, and then you'd recruit your patients, your trip typical advocates. But this was an opposite.

SPEAKER_00 17:53

Was this at the time that everyone was throwing around the words professional patient?

SPEAKER_02 17:59

Yes, yes, yes, yes.

SPEAKER_00 18:02

As a as a negative, yes, as a negative.

SPEAKER_02 18:06

Well, there is also never been a time that any of us can remember having so much negativity around being associated with a patient advocacy organization.

SPEAKER_04 18:18

Yeah.

SPEAKER_02 18:18

And that was just a narrative that was put forth by some of the groups who ideated the entire government drug, you know, prescription drug affordability.

SPEAKER_00 18:28

And they one large nonprofit as well, right? Yes.

SPEAKER_02 18:32

Yes, and setting that narrative that no matter who comes and talks to you, if they are a patient advocacy organization and get funding in any way, shape, or form from pharmaceutical companies, you can't trust them, they're scripted. And I I can tell you, Matt, when that we decided we're gonna take on be the this coalition lead because we're patient-led, we we can be in these reviews, so then we'll figure out how the patient organization comes in. But I gotta tell you, in that beginning, probably the first uh eight months, I I just remember thinking, I can't believe that so many people are trying to negate everything I built, everything I put into my life's work, questioning my ethics. Yeah, for what? And and it was just so frustrating and eye-opening, and that actually led in part to the research that we will get to on which that the coalition side, so we we said the coalition, which is the ensuring access through collaborative health, or each, which is your tradit traditional patient organization and allied group side. And then the novel, because everything AR arthritis does has a novel, innovative, non-traditional trend, is the patient inclusion council, which is a novel patient caregiver coalition that can operate with each, but also break off and operate separately, which really focuses in addition to the 5% that want to be at the table. We also focus on finding the 95% that may or may not be affiliated with patient organizations. And we lead by just having them share their experiences.

SPEAKER_04 20:27

Sure.

SPEAKER_02 20:28

They don't need to know what a PDAV is, they don't need to know what the CMS IRA negotiations are, they don't need to know. What they need to do is share their why. Why are struggling, then let us, your peers, your patient peers, help explain to you how you can use that experience to share with others to drive reform that actually will impact you.

SPEAKER_04 20:49

Yeah.

SPEAKER_02 20:50

So that was sort of you know how we blended AR arthritis has become each pick. The model is the same. It's just a coalition that lives under an project under our organization.

SPEAKER_00 21:06

And what I love about Each PIC is that it's as a coalition, it is bringing in disease state organizations that may have never spoken with one another.

SPEAKER_04 21:17

Yes.

SPEAKER_00 21:17

And bringing together patient groups that may have been isolated from one another to all rally around the fact that we need patient voices. We need to get the word out about how this is impacting me as an individual and you as a patient in this therapeutic area and with these products. Because often, as you know, our voices are left completely out of the discussion as patients.

SPEAKER_02 21:41

Or um used as supplemental stories, and that's something that AI arthritis and each pick have really we we actually have moved away from using the term stories because of the association often. In public policy, with a patient coming to share their story, which is sentimental to data in a traditional sense. But what we've realized is our lived experience as persons affected and impacted with these conditions every day, those experiences, when logged, many, many logged, becomes data, right? And so we are more than a supplemental story. We are the driver of the solutions.

SPEAKER_00 22:37

Completely agree.

SPEAKER_02 22:38

Really focus on sharing experiences. Not that there's anything wrong with you know, share your story. It's just we're moving more away from that, just because what we're trying to achieve is having the patient experiences influence the decision making.

SPEAKER_00 22:57

Yeah. It's amazing how in violent agreement we are on this. I think you know, a lot of what I do is focused on helping everyone in the healthcare sector to recognize that more than likely they are not focused on the patient as their end user. Right? They're focused on selling from a commercial perspective. It's not the patient who's taking the medicine that they're selling to, it's the provider, it's the insurance company, or it's the hospital. It's the only economy in the United States that doesn't look at the end user as the customer. And that is the biggest problem in and of itself. So, yes, bringing the patient into it and ensuring that their experience becomes data, the moniker that I like to use is that the lived experience of patients is the most underutilized or unutilized and often ignored data set that we have.

unknown 23:54

Agreed.

SPEAKER_00 23:54

Right? Agreed. And as as you go back to your diagnosis story, and for mine as well, it wasn't until someone got me engaged and was asking my opinion or what I was feeling that anything actually changed. And I think that so few patients recognize the value that their voice still has once they get a diagnosis. So I know that you had gotten your diagnosis, was it 16 years ago, and then you start AI arthritis 15 years ago. So less than a year to get this organization off the ground. Take us back to that time period of what was it like to finally get this diagnosis? I'm sh I'm sure some fear, but at the same time, now we finally have an answer.

SPEAKER_02 24:41

Right. Right? Right.

SPEAKER_00 24:42

But then I'm gonna do something about it.

SPEAKER_02 24:45

Yeah. So, you know, I it I had known when I got an answer that I was gonna do something. What that was, that I did not know. Uh, but the other component of that is so much of my energy levels, my ability to do the jobs that I was skilled in doing. So, for example, business development, that that requires a lot of relationship building, a lot of lunches, after-hour events, a lot of talking. Talking equals energy. That when I was a teacher, which I often blended in, it wasn't kind of two different things I would also uh teach, was I never been one to just lecture, always interactive, always very um high energy.

SPEAKER_00 25:34

And that's how everyone learned from you.

SPEAKER_02 25:37

I I caught myself questioning am I gonna have to have a career change? Because how am I supposed to operate in the in this capacity anymore? So I was also dealing with this that plus a phenomenon that many could relate to when you go through these is who am I now?

SPEAKER_00 26:00

Oh, the identity shift, yes, major identity shift.

SPEAKER_02 26:04

I I I like to to share with one of the things that I always identified myself with as I know that I was the best female ever to throw a football. So I was so good. I would go to par when I lived in Los Angeles, we would be in like Santa Monica on the pier, and I would be with all the guys and like a quarterback, and I would be throwing that football through the crowd in the pier, yards, many, and I kept going, go back, go back, and stop and go, what did you and it was it was kind of my thing, and uh because it just was I love sports and everything, but having to not only give up sports, but these things that you're known for, or you know, just I know that's just that one silly example, but no still to this day, like they I dream about throwing a football, and it's just something that I'll never really be able to do again. So it's that to oh my gosh, who am I now? How do I adjust? And and that's just a whole component itself. And I think for me, the reason that I just turned around and said, okay, I'm gonna do this, is that is part of my natural, my natural personality. I I'm just a doer, always have been. But I felt like I need to rewrite who I am now. And what skills do I have that regardless of a physical limitation or emotional or mental, you know, if I brain fog or except, what could I still do with the skill set that I have and address this gap? And you know, that's part of my personality. I'm I've always been the person that connects the dots, and so kind of problem solving. So it just felt like the natural direction, and and that's why I mean I just didn't, it takes about a year to actually establish the nonprofit. So had I been able to get the paperwork through and do all of that, it probably would have taken less. I I it wouldn't have been a year. I probably would have done it the next day, but it took a little while to set that up.

SPEAKER_00 28:23

I I connect with you so much on that that um it you know identity shift, having been a collegiate athlete to then being told, okay, you can't play anymore.

SPEAKER_04 28:31

Yeah.

SPEAKER_00 28:32

What am I then? And then going from being the broken guy for 18 years that you know had to basically just walk the neighborhood as my workout to then being healthy again. Like it's a major hurdle mentally. And I see a lot of folks that get wrapped up in that identity that sometimes it even holds them back from getting healthy.

SPEAKER_05 28:55

Oh, for sure.

SPEAKER_00 28:57

Okay. Um and but but I think that that's that is the true one of the true values of a patient advocacy organization is that support. It's that support system that you can now build with others that have been through it and they may be further along in their journey, but to be able to hear those stories, and then even more powerfully, as you've been doing, you know, state policy. We hear so much discussion around federal policy, and yes, IRA is is federal, but tell us more about why you're focused on the state work rather than just the federal.

SPEAKER_02 29:31

Sure. So one of the things at AI arthritis, going going back to the uh uh the organization itself, is uh the way because we start everything with peer-to-peer conversations, it really is the in retrospect, it's on a local level. Yeah, you may not be talking up to your neighbor per se, but it's more intimate, it's more uh what's happening in my life today, my experience. And that leads to aha moments, if you will, on okay, well, if only this could happen for me. Well, it can happen for you, but that's a state level. If we're talking about policy, that's a state level usually issue. Yeah. And so as a problem-solving organization, that's really collecting lived experience and turning it into impact. Our natural evolution seemed to be more as a state level focus. So that's the first thing. The second component of that is we we started small like everyone starts small. We're still the the kind of more in the mid going into that mid-size organization now, but you have to be thrifty on person power, right? So, and we don't duplicate efforts. That's a really big part of who we are. If somebody else is doing something, we will not duplicate. Well, we may build around it, we may reference it, or we'll just send people to that organization. And most of the national organizations that focus on federal, have their DC fly-ins, have those things set, right? And we also often share patience between the multiple organizations, and they are getting that fed through those groups. We aren't focusing on a DC fly-in.

SPEAKER_04 31:28

Sure.

SPEAKER_02 31:29

They are, we don't duplicate efforts, and as a collaborative organization, and many others being collaborative as well, we have found asking organizations, can we tag along? Can we be part of this? And so why not just be stronger together? Embrace what they're great at, let us embrace what we're great at, and it really does work like a puzzle piece.

SPEAKER_00 32:00

Yeah. And it's it's I think though, at the same time, so many people think that all the answers come out of federal. Yeah. And what I find so important about what you're doing is that, you know, as we look at these state PDABs, um, and perhaps we should even start with uh an education on the PDABs, because as you said, they were quote unquote sold to the general community as being these opportunities to save money or put money back in the hands of patients. And with that comes, as you call it, the blind Plinko game. Right? So t tell us a little bit more about that.

SPEAKER_02 32:40

Okay. So, well, first the the prescription drug affordability boards or the PDABs. Uh, yes, so as you said, these the the idea is the same for the most part, even though they all ended up, they all ended up being slightly a variant of each other because they are state-level legislation, which means they're going through becoming a law. There's different statutes, different pieces or elements, so they are all slightly different. But the selling point was okay, well, have you ever stretched or skipped the dose? We're gonna do something to make sure that doesn't happen again. That sounds fantastic. Yeah, um, patients are choosing between rent or groceries. That is a real situation, right? Yeah. They're saying what they're going to do is going to fix that. So for a patient, I think for me, just as a side note, one of the most frustrating things as I started realizing a little bit more of the solutions that have to that have been created to solve this problem through these these boards or through these other government initiatives, cited hardship stories. And if you're going to reference somebody's hardship, somebody's emotional situation in life, and then turn around and find out it's not even about the patient, that's where I get a little hated. Right. Because you said it was about us, you tapped into somebody's very serious uh situation as a selling point. There that alone is is very frustrating and alarming.

SPEAKER_04 34:29

Yeah.

SPEAKER_02 34:30

In saying that, the Plinko board. So what ends up happening, and what we realized, is not all, some of these boards that have been established are really trying to understand if it's about the patient, what needs to happen with reform in order to fix this by paying rent and choices of that in the ground. Let's fix that. That's what we said we were gonna do. Let's do that. So some of them are doing that, however, they are typically the ones that do not have a predetermined solution called an upper payment limit. And the UPL was also marketed that it would put money back in patients' pockets. So we apply this UPL. Guess what? Then that is the solution to make sure that you can pay your rent and you've got more cash flow. What it really is, is as you know, Matt, is a cap on what an insurer is going to pay or you know, what what what we're paying, what what the what the we're paying, not a patient pays, it's the system. And so that's where the Plinko board comes in. So part of my role and the role associated with the Patient Inclusion Council is trying to explain this on a level that is relatable to what patients and the healthcare system in the United States is complex, it's messy, it's complicated. And so I found that let's talk about a Plinko board. Because if you think about a Plinko, for those who don't know, think about uh it's those boards that you drop a disc in and it's got pegs and it kind of filters through. And then you may have seen it on shows like The Price Is Right, or That's right, the blink one, and then you it it comes in, you you win something, right? So what I like to compare it to is the healthcare system, and uh when a retail price of the drug that is at the beginning, that's at this top, right? And then we go into what the purchasers are purchasing that for, and it gets hairy because that's when we find closed doors and there's rebates, and there's there's things, and again, patients don't need to know all of that. All they need to understand is this it comes here, the top of the blinko board, and then it's sort of even I like to even say put a piece of paper in front of the blinkable board, but thing that each of the agencies and each of the payers, they all have their own little disc, right? It's going through all of the and the patient is standing down at the bottom like this, saying, Will my medication make it as a preferred drug this year? Yes or no, and that is a reality that most of us experience every single year, and sometimes middle of the year. And that is a reality that we all that that's because that's part of the healthcare system and the out of this is at the out-of-pocket level, also, right? So if we get out, if it lands in our hands and we, okay, I get excess, what is that out-of-pocket cost? Because it could be that even though they got it on on their drug list, on their formulary, it may not be their preferred drug. I might have to fail some other drugs first to get to that. Or if I want to utilize it, it would be a higher out-of-pocket cost. So some of the things that we know just from the studies that we've been doing with patients is the same drug can cost the same patient different out-of-pocket costs year after year, not just within the calendar year, as you might suspect once insurance kicks in. We're talking, ask the same person who's been on a drug five years. Some might say it was $10 one year, it was zero, then it came up to $250, then it went down to $20. Why is it? It's the same drug. And it does did not matter what happened up here on the Plinko board, didn't matter what the retail price was, it didn't matter any. What mattered is what happened when it went through the Plinko board, how it fell into the preferred drug list, and that is what determines your out-of-pocket cost. So any solutions with these government reforms that happened above the Plinko board, which is where these upper payment limits are, is not going to impact them.

SPEAKER_04 39:06

Sure.

SPEAKER_02 39:07

And it could it could, it's not going to impact like the out-of-pocket cost. It can impact the access, it can impact what's going to fall at the bottom of the Plinko board. It's uh if you get access to it because of other factors like the doctor or the infusion centers, that they're getting enough in in rebates so that they can afford to prescribe or stock, all of those things matter in this blinko board, right? But what but the big point for patients is what's happening down here, your reality needs to be addressed here and in the Plinko board.

SPEAKER_04 39:44

Yeah.

SPEAKER_02 39:45

Right? And so that's where the big disconnect is in now.

SPEAKER_00 39:51

And what we're also seeing, right, is is the fear of um what happens in this Plinko board, so to speak, of future product development. How are we impacting the ability to create new products by putting these uh really at times at a thin air number caps on what we're willing to pay for these products by folks, let's face it, who do not understand this market. Right? And I mean, if I have to hear some of our federal legislators not know the difference between PBM and pharma, that's concerning.

SPEAKER_05 40:37

That is concerning. Right?

SPEAKER_00 40:40

I mean, I think it's Josh Howley who will say pharma when he's speaking to PBM executives. And those, you know, are two very different people. But the fact of the matter is, is that can we then trust that they're going to know what's going to impact the patient at the end of the day?

SPEAKER_02 40:58

Absolutely. And if if we go back, and it's something that the the PIC, the Patient Inclusion Council, is working on right now, is going back to 2018, 2019, 2022, etc., when these legislative efforts and calls to establish these prescription drug affordability boards were happening. And the legislators are saying, I'm doing this for you, my constituents. And we're going to come back now and we're going to hold those legislators accountable. Because you said it about the patient. Now the direction has shifted again in most of the states that have this UPL authority for the most part that are focusing on that one tool that they have the authority to use. But side note, they also have the authority to choose not to do it. So they have to do it, uh, contrary to what they they may say. Um, but we want to make sure that it the the shift is starting to come out a little bit more where these boards are are starting to cite the healthcare system savings. And it was in reality, was always about the healthcare system savings if you're talking about a UPL, right? So you know, now we're a few years into this and patients haven't forgotten. We haven't forgotten what was promised. Yeah. So we're gonna come back and and we're we're actually calling it the patient truth campaign.

SPEAKER_00 42:30

That's fantastic. Yeah, I mean, that's really what it comes down to is if you think you're going to do something and it's going to impact us at the end of the day, the folks that are your constituents that are going to vote or not vote for you, then it you should be held accountable for those things. If you're telling us one thing, which is it's going to cost us less out of pocket, but in reality, all that it's doing, it's not costing us any less, it's just causing more hurdles for us as patients. But yeah, it's driving healthcare costs for the system or reducing those costs for the system. But you as a patient, you're not getting any benefit of that. In fact, it's probably hurting you more, then no, that that doesn't work. And if I'm not mistaken, right, it was New Hampshire that had their PDAB, I think first. Um, and it's gone now, correct?

SPEAKER_02 43:22

Uh well, we also the first one to sort of go on uh dis disband, if you will, was uh I believe Ohio. Ah and so um we had uh but and I know that that there had been talked about, and then yes, New Hampshire then was abolished, and and so we we kind of went on that track and thinking maybe that will be the path, right? People are being we're not we're not saving anything, we're spending a lot of money for these boards and

SPEAKER_00 44:00

I don't think people recognize that. That there's mu there's money that needs to be spent to even do this, right?

SPEAKER_02 44:06

A lot, millions, right? And and so we are seeing more shifts into potentially, oh, we'll just skip the board or we won't give the board any authority, we'll switch over to reference the maximum fair price of CMS, which opens a whole other can of worms.

SPEAKER_04 44:22

Yes.

SPEAKER_02 44:22

For for another for another show, for part two. Yes. But but in saying all of that, uh yes. So, you know, there but when things started to close or shut down or abolished or disbanded, that's also where we started seeing that narrative change because I've seen that from the beginning. Every time we get close to making sense or make you know making a breakthrough, it's like the narrative changes. Like all of a sudden, oh well, now we're gonna focus on not having the board have as much or it's just it's a it's like we're something and uh don't worry, this one will be different. So we're just the narrative has just constantly bounced around.

SPEAKER_00 45:10

And yeah, um, but I and when you're over the target, you're taking the heat too.

SPEAKER_02 45:15

Oh my goodness, absolutely. And and like I like I had said earlier, this I I can't believe that the that a part of that narrative that still exists today is don't trust what she, he, they say, yes, if they have any any tie to pharmaceutical companies, and and the fact that people believe that, that yeah, also is mind-blowing to me.

SPEAKER_00 45:42

Well, in in a political sense, if someone in a political seat is telling you or telling anyone, listen, they're getting money and they're getting funding from pharma, they can't be trusted to make their own decisions that are in the best impact of the patient population. What does that say about them as politicians who are also getting funds from everybody?

SPEAKER_02 46:07

Mm-hmm.

SPEAKER_00 46:09

That's where it just doesn't make sense to me.

SPEAKER_02 46:11

Yeah, that's why I'm so surprised. That's one of the reasons I'm so surprised that this narrative still has legs.

SPEAKER_04 46:18

Yes.

SPEAKER_02 46:19

It keeps coming up, and I don't understand how because the people who do put the narrative forward also get funding from places.

SPEAKER_00 46:30

Yeah.

SPEAKER_02 46:31

Right?

SPEAKER_00 46:31

Typically from the payers and the PPMs.

SPEAKER_02 46:33

Right, who are potentially benefiting from the solution.

SPEAKER_00 46:37

So how that isn't But the people who represent the patients that are educating the patients that want the general population to, as our founders said, to be educated, that we needed to have have an educated populace to keep our republic. You are the bad people. Yes. That's that's when you know it's wrong to begin with. If you're not allowed to know about it, then it shouldn't be done.

SPEAKER_02 47:04

And there is also a piece of you know being at being educated and and really, I mean, uh, not as I mentioned earlier, it it's okay if you're a patient who who is sharing your experiences and you don't know the ins and outs. You don't have to, but there are some that do. And those who do, like myself, are also often being the what are being labeled as is not trustworthy, or you know, it's like because I know too much. Like, what I know forbid work?

SPEAKER_00 47:40

Yeah. Because I did I did my research because I looked into it, I looked at how other states have done it, I've seen that it hasn't worked. I mean, if you keep coming back with the same idea that's failed before, that's insanity, right? Uh, but we just saw it, Illinois just passed it theirs, uh passed theirs this past week, if I'm not mistaken.

SPEAKER_02 48:03

That uh PDAB. They did not pass a PDAB, no. No. Um I do I would have to refer to because I Mark's the one who is following. Sure. Did not pass they didn't they are not they did not pass a PDAB, no.

SPEAKER_00 48:18

Okay. Well, that's good to hear. I know states like what New Jersey, Maryland, and plenty of others are are trying to do what they can. Um oh, it was a uh I believe it was a 340B uh bill that was passed in Illinois.

SPEAKER_02 48:34

That very well could be.

SPEAKER_00 48:36

That very well could be uh which is uh you know a whole nother show, as you said before, right? What's interesting to me though is it doesn't matter what the statute is or what the bill is or what the push is, it's always being framed in we're we're doing X because it's in the best interest of patients. And then once patients get educated about it and realize that there are a lot of bad things that could happen if that takes place, you're the evil one.

SPEAKER_02 49:09

Yes, that that is that is the narrative. And I'll add to to that uh what what you just said is the many different things that could happen and becoming more educated. And it also ties back to the the uh the power of patients communicating with each other for experience and how we drive these aha moments. So it was part of attending many of these prescription drug affordability reviews and uh and also CMS, the CMS IRA, and referring to the therapeutic alternatives. And what that there so to preface, a therapeutic alternative would be considered something in the same drug class, but not necessarily even the same mechanism of action, meaning um it might treat the same disease, it be a biologic or whatever that, but it might target something different. So maybe differently targets a different molecule, right? But they're calling it in this in the same class of of drugs. So they're in a cost review, which is really what these are, and in a cost review, there has to be a comparator. That that's how a cost review, that's just part of cost review 101. You must have uh one originator, so in this case, it would be the drug under review, and then you have to have a comparator. And usually that happens uh at the level of a what's called a health technology assessment or an HTA value assessment, you may have heard it called. Some some uh patients refer to it as that, but that's at a different life cycle, that's at a different time of the drug's life cycle. That is when uh right at the FDA, the Food and Drug Administration, their approval of a drug, and then it would go to being reviewed. Okay, this is the novel one, this is an existing one, and then the goal is to choose the how is this the new drug more valuable to justify a cost, right? So it has to have a comparator. Well, in the beginning of the prescription drug affordability boards, a lot of the groups who have uh who do HTA or or understand the whole cost effectiveness review model were the ones teaching the PDAVs about how to conduct reviews. So that that's that's important to understand here as well. Yeah. Fast forward, and we're so we're we're at the patient where patients were participating in these reviews or or at least listening to them, even if they're not our drugs, and keep hearing the therapeutic alternative. And of course, the each pick coalition, the patient organizations, we are obviously saying making sure that they are clear that therapeutic alternative does not mean equivalent, they are not interchangeable. And I think we're we were pretty successful on at least educating on that. But here's the aha moment. So we're we're watching all of these, and as patients, including myself, we're talking about, okay, so they're saying that if they put an upper payment limit on let's say drug A, we'll just say it's it's drug A, and they're saying that patients it it'll nobody will lose, uh like hypothetically, like their best case scenario is we would like we were trying to do scenario mapping.

SPEAKER_04 52:37

Yes.

SPEAKER_02 52:37

And let's say that what they're saying would be the best case scenario, how would it affect me? So drug A, which in my case, in the case uh is is a rheumatoid is a rheumatologist, a rheumatology drug, and so may treat rheumatoid arthritis, axiosponylitis, psoriatic arthritis, crohn's uh an array of uh different diagnoses, but the same drug. So let's say drug A is gets a UPL applied. Let's say, hypothetically, every single one of the payers and insurance companies, it works out where everybody gets reimbursed and there are no access issues. It goes it's on your formulary, and you're you're on drug A and you're at the bottom of the Plinko board and it falls in your hand. And you won zero and everybody wins, right? Okay, that is what I'm saying. Well, first of all, there's many things dropping in the Plinko board. So the chances of every single insurance plank are all ending up there. Well, I mean, there's that. But let's just say, all right, so I I I win. But what if I am on the therapeutic alternative drug B? I'm gonna get non-medically switched to drug A. So all of the people with all of the other diseases and my own diagnosis, who is on drug B, was gonna get that letter from their insurance company saying, we're gonna ask you to move to drug A because it is more cost effective for our plan. And it works patients who have that aha moment.

unknown 54:18

Yeah.

SPEAKER_02 54:19

That's reality. And that's the power of a patient. Because nobody else doing these reviews, talking about therapeutic alternatives, did that ever come up? But it's the patient experience and reality to say, Well, hold on. What if I'm not on drug A? What if I'm one of those other five that you're comparing? What does that do for me? Nobody asked that question. And so that is a whole other piece. If you're doing this for the patient, that you can't ignore that piece either, right?

SPEAKER_00 54:52

But they do, right?

SPEAKER_02 54:54

They they have actually started to recognize that could be a threat because patients and the pick, we did start telling all of the each and patient organizations and please consider putting this point in your speaking points because this is a re and oh, yeah, you're right, it is a reality, right? And it was we have had some of the boards acknowledge that that is a possibility, and unfortunately, the recommendation was yes, you are right, that is a high likelihood that that could happen. So, our suggestion is for all of you to go lobby to legislation to make sure that non-medical switching can't happen. So instead of just choosing to halt or pause or or something, they instead said, Well, you all go and and try to divert bill. You go and divert our our that so that what what we put forth does that so that doesn't actually happen. You guys go do more work on your side.

SPEAKER_00 55:57

Oh my goodness. I can't say I'm surprised. I mean, uh I think non-med switching was only extremely successful for diabetes. Right? Um, and that was technically, I guess, before coalitions were really a big thing. Um, but this is why I'm such a big proponent of coalitions. No one gets left out if a coalition is doing it, because you're thinking about all of the patients. But when the diabetes groups ran ahead for non-med switching of diabetes patients, so that if a patient was, you know, managed well, they did the the HUR data to recognize that it takes about two and a half years to get a patient who's switched re-established and stable again. So you can't switch a diabetic. But that doesn't now block anyone else outside of diabetes from being blocked because it wasn't done through coalition. And this is truly the value of what you do. And um for those who may not be aware, the each pick coalition um the your Slack channel is an unbelievable resource of information for anyone who's interested in looking at what's happening, what the dialogue is, to hear from other patients about how they've been impacted impacted by it. But how else can a patient outside of the 5% find you to learn how to use their testimony, use their story?

SPEAKER_02 57:23

Sure. So the website is eachpick.org. So that's all one word, and pick is PIC. And so p eachpick.org, there is a tab to get involved, and then for a patient, you would choose the patient inclusion council drop-down. And there's a very simple form, asks a couple questions where you live, uh, you know, diagnosis, and uh your start if you want to share an experience with us, and it gives you a couple other options. Oh, I might be involved in learning more about this type of thing. So it puts you on a list that gets notified to Vanessa. Vanessa is a person living with undifferentiated connective tissue disease. So you are a patient that is actually on the other side, and that is name on the AR arthritis side, and so then it goes directly to our team, and somebody reaches out and starts to give you opportunities first and foremost to share your lived experiences with drug affordability. Why is it affordable? When hasn't it been? Why hasn't it been? What's made it affordable? All of those things, because that is those are the missing pieces that we need a lot of because that's what data is. The more you get, one story is very powerful. Many stories together is is what is data, and it's very hard to argue data.

SPEAKER_04 58:53

Yes.

SPEAKER_02 58:53

You can say, Oh, you're a one-off. Oh, that doesn't happen to everybody. Because unfortunately, as patients, we often get dismissed, right? Yes. Oh, you're that doesn't have you're that doesn't happen to everyone.

SPEAKER_03 59:04

You're a one-off case, yes.

SPEAKER_02 59:05

It happens because they can do that, that they can say that with with oh with a one-off, but you get enough people, and then plus it is a bit kind of to your point you said a little earlier, there is something about knowing you're not alone. Your story isn't necessarily unique, it is frustrating, it deserves solutions, and you're not alone. There are probably dozens, if not hundreds, of other people experiences the same thing, and if we all share, that's how solutions happen.

SPEAKER_04 59:36

Yes.

SPEAKER_02 59:36

So it doesn't matter if you know what a PDAP is, it doesn't matter if you know what you know what the insurance term is that you're experiencing, or you know, it doesn't, it's okay because you have people on the other side who are going to help you understand where your your experience can uh be collected. And if you so choose, we will help you to either write a letter or testify on, you know, you don't need to. I mean, we're not we're not doing that with the with the goal saying, okay, haha, we got your contact. Uh, now we're gonna no, that's not what this is. This is first and foremost experience collection, understanding how your experience actually can impact change. And we give oper options of opportunities to get more involved if you so choose. And if you need guidance or help, we do not train, we we do not script same on the AR arthritis side as on the pick side. We are people who have conversations with you. We talk, we listen, and from that, we will help you pull those pieces out and say, this is something that you could share. This makes a lot of sense to share. So we can help with that. It takes a lot longer than having an education on a specific topic and then trying to match the story. We go the opposite. So everything is in these open conversations, and then based on those, where does it go to? And even with that, uh in the in the pick, we are uh naturally and organically also identifying step therapy, non-medical switching, accumulating alternative funding programs. So I've often said to patient organizations too, because there is the each side, and that is that is participation only. We don't, you know, you don't require membership, there's no fee. And for the the patient organizations, uh, I think that that's really, really good, you know, to understand as well. That it's it's really about just coming forward, understanding what's happening and your your experiences and understanding where everybody else is is also vitally important. And I don't want to scare organizations off by talking about how patient organizations have uh not been viewed in the best light because the I know it's an old saying, but but now I don't even know what it really means. The proof is in the pudding, but you know, that but I always like to say watch us like we're if you can watch how we move and you'll see how authentic we are, and the other we are stronger. So, you know, the the more we show our value in that we're not scripted, where you know we're speaking from the heart, we're speaking authentically, it really there's a there is a place for the patient organizations, and uh and let us help you all, you know, also uh be able to find the voice.

SPEAKER_00 1:02:54

What we've heard from far too many disease state advocacy organizations is we don't know where to get involved.

unknown 1:03:01

Yeah.

SPEAKER_00 1:03:01

But as you're saying, share the story, allow others to share their story, and your organization can help point them in the right direction.

SPEAKER_01 1:03:10

Exactly.

SPEAKER_00 1:03:10

Based off of that. You know, you you you've referenced that you guys are obviously under a lot of heat. Um, it's not easy the work that you do. What inspires you to keep fighting?

SPEAKER_02 1:03:25

Making sure that the that that the patient experience is the it is driving the solution. I mean, that my I mean you look on my LinkedIn profile, it just says patients first. I mean, that's my my little little tagline, but that's what that's what you know drives me. That's what drives no matter, you know, yeah, have I had moments where I where I've been a little rattled with some of these comments and you know, questioning my ethics, that that doesn't feel good. But at the end of the day, it I know that what I and others are doing in this in this is for patient access and affordability. And prove it every day by collecting the lived experience, letting people speak in open-ended boxes, not in a box that says choose yes or no. Did cost impact your your ability to take something? That is that is a loaded question. Sure, you can say yes, but why did it cost that? Why did it cost you this amount this year, but it cost you zero the year before? And it got it's because of out-of-pocket cost shifting that is directly related to insurance plan design. If you don't ask if you don't bother to ask the why, yes, then that I know that, and and so you know, I'll just kind of close it.

SPEAKER_00 1:04:49

And that full experience, as you said though, too, it's not just today, it's been what have you seen historically, right, as well.

SPEAKER_02 1:04:57

Yeah, and so, you know, just to kind of wrap that up, the why and and keep going with all of this, even when uh the the PIC led this two-year study that is on our website and and talk to over 500 patients, caregivers, etc., let them talk in open-ended responses to really understand uh to understand their why. In the beginning, I did have some people like, are you sure you want to go down this route? Like, what if the data shows you know something you didn't intend? And and I and I just remember just going, it's going to show the truth. Yeah, it it I'm not worried about what like if you let a place your experience, it's going to show truth, and nothing to hide when you're when if you're being truthful, you have nothing to hide.

SPEAKER_00 1:05:54

Yeah, right. That's fantastic, fantastic approach.

SPEAKER_02 1:05:57

I had absolutely no worries. At all about you know, you just let patients open up and share their their truth.

SPEAKER_03 1:06:06

Yeah.

SPEAKER_02 1:06:07

And and let that guide.

SPEAKER_03 1:06:08

Only good can come.

SPEAKER_02 1:06:10

Let that guide. And so that is what keeps me going every day is making sure that we let patients and give them the opportunity to see how their experiences can actually not only improve their lives, but improve the lives of other people. That you know, going back to the very beginning of this conversation and why, you know, why I even got into this in the first place, is I sat there and I said, I don't want this to ever happen to another person. And I think we all have that insight of us. Something really horrible happens, we can't access our treatments, we can't afford them, all of those things. Share your experience not only to help change what your was happening pop possibly to you today, you have the you have the power collectively to change what happens to your peers tomorrow.

SPEAKER_00 1:07:02

Yeah.

SPEAKER_02 1:07:03

And I think powerful.

SPEAKER_00 1:07:05

We we have so much in common. You know, my biggest belief is that the people we are today were built to help the people we once were. Right. And that's in violent agreement with everything that you just said. It's you can only you can you can not only help yourself today, but you can help your peers tomorrow, as you referenced. And your story, it only happens if you're willing to share what you've been through. That's and your experience.

SPEAKER_02 1:07:32

That is absolutely true. You share your experience, what however that feels comfortable. Survey, like, and that's why at the Patient Inclusion Council, we have many, a variety of ways. Survey, one you know, focus group, discussion. Yeah. So there is different ways. Is everybody is everyone's different, right? And so making sure that um people have the ability to share their experience in the way they feel comfortable too.

SPEAKER_00 1:07:56

That's fantastic. My last question for you, same question I have for all my guests. If you could go back 16 years ago, to when you got diagnosed, uh-huh, what would you tell that person, that Tiffany?

SPEAKER_02 1:08:10

You are going to be so amazed in what you were able to achieve over the next 15 years. Don't stop. Because there were times that I questioned, can I do this? Will the it can I do this? But I would I would say just no matter those ups and downs, keep going because um because good it's worth it. It's worth it. It all that is worth it.

SPEAKER_00 1:08:36

Well, Tiffany, it's been an absolute privilege and a pleasure to have you join us today. I will make sure that uh all the listeners will get access to the show notes, in which we'll have access to eachpick.org, uh, the get involved piece as well. Um, but any closing words from you?

SPEAKER_02 1:08:55

Um, I just will just thank you so much for the opportunity. Uh it's been a pleasure as always to talk to you. And just remember, if you're out there and you're listening, you obviously are passionate about these topics and and just as I just said, just keep keep moving forward. Is the the making sure that patients have the play their place at the table and experiences counted is really what's going to drive the needle towards change.

SPEAKER_00 1:09:26

Hell yes, we deserve it. We deserve it, we deserve to do it together. So thank you so much, Tiffany. Bye bye.

SPEAKER_02 1:09:32

Thank you.

unknown 1:09:33

Bye.