Building The Noise with Bridget Dandaraw-Seritt: EPISODE 016

SPEAKER_01 0:00

It took me four years to get somebody to even consider that something was wrong. And by the time I found a doctor willing to listen, there was a screw embedded in my cerebellum and another one working its way in.

SPEAKER_00 0:21

Ladies and gentlemen, welcome to the Building the Noise Podcast. Today I'm thrilled to be joined by a relentless champion for patient advocacy, Bridget Dandrausarrett. With over two decades of experience spanning public policy, community building, and education, Bridget truly embodies what it means to make some noise for those who need it most. She is the founder of Advocates for Compassionate Therapy Now, an organization dedicated to connecting, educating, and supporting Colorado's patient community. And she goes a lot wider than Colorado, I will say that. And she recently took on a new role as the community impact manager at Lupus Colorado. From analyzing complex healthcare policies and expanding right to try freedoms to mobilizing grassroots efforts to protect vital disability rights and home and community-based compassionate care services, Bridget is truly on the front lines fighting for patience and for systemic change. Bridget, welcome to the show.

SPEAKER_01 1:22

Thank you very much. It's an honor to be here.

SPEAKER_00 1:25

Honor is all ours. We are so happy to have you. You know, I don't think I can go a day on LinkedIn without seeing something that you've put out or that others are sharing of you because you are just that on fire for what you do. So I have to always ask my first question: why do you do what you do? Why patient advocacy? Why this focus on ensuring patients have what they need?

SPEAKER_01 1:52

Well, I think the the first and foremost reason is because I'm a patient. I have rheumatoid arthritis, lupus, chogrin's, I have ailers, danlos, uh, a rare version of that. And uh I also have mast cell activation syndrome, but I also have everything that comes with that, all of the sub-diseases and complications. Um, but then I also um moving here to Colorado, I have no other family, and so I connected with our community, and they are the reason I do everything that I do. You would be amazed at just the quality of people that you meet in the special needs and disability community, and you get to meet the best people, and so they are worth fighting for, and that's why I do everything that I do.

SPEAKER_00 2:48

That's fantastic. And yes, I would say that Colorado has some of the strongest patient advocates that I have found. Um and specifically, those of y'all in lupus, I don't know why, but you have some rock stars that not only understand what it means to be a patient, but understand the legislation that's coming, may that be federally or at the state level, and take action on it. Can you tell me a little bit about how you got into healthcare policy work and why?

SPEAKER_01 3:19

Well, um, I started off, I cut my teeth here in Colorado on medical marijuana policy, um, but then I moved into healthcare policy because I saw so many of my neighbors, my friends, the people that I care about impacted by things that were coming down from the legislature that they had no idea were happening. Um when you're sick, you're overwhelmed. It's really hard, especially if you're a caregiver taking care of a loved one. It's not like you have the bandwidth to, you know, keep up with legislation and policy. And I figured this was a service I could offer.

SPEAKER_00 4:00

Sure. Now, it's not an easy ask to jump into healthcare policy. So, you know, how did you hone those skills? And what is it that you found to be some of the most important, let's say, skills to bring with you as you're navigating legislative tasks and the folks that line the halls of state capitals and federal buildings?

SPEAKER_01 4:23

Um, I think one of the most important skills to bring is patience and humor and determination. Um, those are the things I see that actually will make a difference up at the state capitol. And I developed those skills. I got really good at reading legislation. Um, you know, I I have trouble sleeping, and I can tell you that reading policy is way better than Ambient. Um, so so I started reading policy. Um, I was able to kind of look to see how that policy was implemented to make sure that I'm noticing trends, but I also try to keep up with what is going on in the community at the ground level. So I try to stay in the trenches so that I can marry the two.

SPEAKER_00 5:14

Sure. The reality that is the legislation and and the impact that it's going to have on patients. I know specifically lately you've been doing a lot of work in Colorado with prescription drug advisory boards. And for the audience member that may not be aware of it, uh, what are prescription drug advisory boards and what is Colorado trying to do?

SPEAKER_01 5:37

Prescription drug advisory boards were a policy that um has been promoted by some elite groups. Um, and so what happens is A V. Yeah, Arnold Ventures. I wasn't gonna mention the A V name, but um yes, uh Arnold Ventures has come in. They have paid uh consumer groups to promote this legislation as a way to lower prescription drug costs, and so the prescription drug affordability board here in Colorado, because they're all different, um has upper payment limit authority, and an upper payment limit is a cap on what the pharmacy or infusion center can be reimbursed for your drug. And unfortunately, if you put the upper payment limit concept in with the drug supply chain, uh things actually have a greater chance of going haywire than they do of actually lowering drug costs. Um so I have been incredibly active.

SPEAKER_00 6:46

It's amazing that people think you can just say you can't get paid more than X, and it will have no downstream effect.

SPEAKER_01 6:55

Exactly. Exactly.

SPEAKER_00 6:57

I think that seems to be the problem for you know, not here to play politics, but socialism in general. It sounds great in premise, but the actual execution of it is where we see all of the problems come into play. Now, as you think about the PDAB in Colorado, what are some of the risks that you see for patients? Again, as you said, when you add the UPL into the supply chain, things can go awry.

SPEAKER_01 7:24

Well, Colorado is a very small market, and so we don't really have the market share to be able to negotiate a price and have no consequences. So I think the biggest concern that I have is patient access, because if you take a drug that um its formulary placement is decided based on rebates and PBM negotiations, and you say, Oh, well, you can only get reimbursed the maximum amount. Um, for example, embrills is $600 uh dollars per 50 milligrams, and Amgen can no longer say, okay, well, we'll provide you rebates to be on your formulary. Sure, we'll save money, but because the formularies no longer cover the drug. And so the people who have one working drug, um, like Enbril or Cosentix, which is the next one that they're doing currently, um, they could lose access to that drug and that can be devastating for patients.

SPEAKER_00 8:31

Yeah. I you know, again, it's the mindset that we can as a state limit what can be paid for a prescription, but at the same time telling a you know multinational organization that they can't uh there's nothing they can do about it, they have to accept that price. And even as we've seen with some companies and CMS, where I believe if I'm not mistaken, it may have been Bausch, um, maybe even Vertex, if I'm not mistaken, but there are companies that have opted out of dealing with CMS altogether. Um that doesn't help anybody.

SPEAKER_01 9:15

No, it doesn't. It just makes needed medication harder to get for everybody.

SPEAKER_00 9:21

Yeah, exactly. So let's go back. You had you gave us a ton of diagnoses, and I'm sorry to hear that. Um, but what was where when was your first diagnosis?

SPEAKER_01 9:37

Um, I was a child, actually, when I was diagnosed with rheumatoid arthritis, and that was my primary diagnosis for some years, and as the years went on, um, you know, they're like Pokemon. You you collect them all. Um so you know, I ended up with uh several more diagnoses, and then when I was in my mid-40s, I had complications uh with my spine and my C-spine, and uh we realized I had a rare form of ailers danlos.

SPEAKER_00 10:09

Wow.

SPEAKER_01 10:11

Yes.

SPEAKER_00 10:11

So made all of these conditions difficult to diagnose in the first place, and I'm sure difficult to find a true expert as well. What was that uh diagnostic odyssey like for you and your family?

SPEAKER_01 10:28

Oh my, um this has been quite the journey. Um it's it's been like a crackhouse merry-go-round, if we will. Um, you know, trying to figure out what I have. Um and we probably have not figured out everything at this point either. But, you know, way back when I was diagnosed with RA, kids didn't get stuff like this, at least, you know, not that doctor saw, even though we really did get this. Um so you're not believed. You are thought it's thought that you're making it up or that you have mental health issues and you're just or you're just doing this for attention.

SPEAKER_00 11:09

Attention. Yeah. You want medication, you want pain meds.

SPEAKER_01 11:13

Yeah, exactly. And um so it's been very difficult. Uh when I was first diagnosed with RA, my doctors refused to believe it and put me through some pretty intensive PT, despite me being a tracker and being in very good physical health. Um, and that ended up causing quite a uh significant amount of damage to my wrists and my hands. Um, because they they just refused to first do no harm. Yeah.

SPEAKER_00 11:44

But here we are because you were not believed as a patient, and this is what I I try to speak out about the value of the patient voice. Yes. And the fact that a doctor doesn't know what the patient doesn't tell them. And I and what I've struggled uh to try to help many patients understand is that their voice is valuable. When did you recognize that your voice was valuable in this healthcare world?

SPEAKER_01 12:12

Um, I think about 14 years old. Um, because I was I was fighting. Uh I was fighting my school system, I was fighting my parents, I was fighting the doctors, and I knew what I felt. I knew what was I mean, you could see what was happening. I ended up with my first deformity around that time. And so I just decided that I wasn't gonna pay a lot for that muffler, and I was going to tell, you know, I was going to use my voice in the best way I possibly could.

SPEAKER_00 12:44

That's amazing that at 14, I take it you were a fighter.

SPEAKER_01 12:49

Yes. I have always been one of those scrappy people.

SPEAKER_00 12:54

So now, you know, I'm sure you've you also as an advocate speak with many patients. You learned early the value of your voice. What's some of the advice that you give to patients that you come across these days?

SPEAKER_01 13:09

Be determined. You know, if you are a patient and you are on this journey, you know what you are feeling and don't take no for an answer. The other thing that I tell patients all the time is do not isolate. I know when you were first diagnosed, um, you probably don't know anybody with these illnesses, but you're you're not alone and you're not a burden. And it's important to connect with your peers and your community so that you can get the support you need to continue this journey because it's not easy.

SPEAKER_00 13:43

How how did you find support at that young if if it if you did?

SPEAKER_01 13:49

Yeah, I I didn't actually find support until probably in my 30s.

SPEAKER_00 13:55

Really? Yeah.

SPEAKER_01 13:57

I was the only person in my school with an issue. I was, you know, I would go to support groups and they would all be osteoarthritis folks who were way older than I was.

SPEAKER_02 14:08

Yeah.

SPEAKER_01 14:09

Um, and you know, my my family was not as supportive as they probably should have been. Um, so it was just me kinda raw dogging life, you know, going through this.

SPEAKER_00 14:25

And now being on the, you know, I would say not the other side of it, because you still live it every day, you just know better.

SPEAKER_01 14:32

Yes.

SPEAKER_00 14:33

And you're able to use that.

SPEAKER_01 14:35

Yes, and I have gone out of my way to make sure that our community is connected, that they know that they are not alone, and that they know that they should be using their voice. And so I try to create the support that I didn't have.

SPEAKER_00 14:53

That's amazing. And that's, you know, where I find myself doing the same, you know, as you know, in the RA space and and with all that you're dealing with, the pain world, chronic pain world, has not been a fun place to be for the last 10 years. Um, it's like the government thinks that people in pain either don't exist or they're making it up, as you said, uh, and you know, we get isolated and told what to do and are not part of the discussion. But as you referenced, you can't stay quiet. You have a right for your to yourself to not stay quiet.

SPEAKER_01 15:30

Yeah, it is so important. Otherwise, your care is just gonna be the bare minimum if you get care at all. And so you do have to stand up for yourself if you want to thrive in this this situation.

SPEAKER_00 15:45

Yeah. I mean, I I try to help patients recognize that if they're not getting the help that they think they need, because at the end of the day, healthcare is just an economic, it's just an economy in itself, right? If you as the patient aren't getting what you think you need, fire that one and go find another one.

SPEAKER_01 16:02

Exactly.

SPEAKER_00 16:04

Right? Exactly.

SPEAKER_01 16:05

People are afraid to fire their doctors.

SPEAKER_00 16:08

And uh it's it, you know, for for some, we may be saying things that just aren't possible, right? In some specialties. And I know that uh for you with Ellers Danlow, that can't be an easy one to find experts, right? Uh but they're out there. Yes. Right. Now you're in Colorado, but you just recently got to Colorado, right?

SPEAKER_01 16:33

Uh 2013. So I've been here a little bit.

SPEAKER_00 16:37

So what was it? Was it lupus? Was it just wanting to get go to Colorado? I mean, why Colorado? Because I've spoken with many folks with lupus, and they talk about the impacts of the sun and a hot climate and how terrible that is on uh for folks with lupus, and I see you're you're you're agreeing. I don't think many people recognize or understand that that has an impact on those fighting with lupus.

SPEAKER_01 17:02

Oh, yes. If I had stayed in Atlanta because I had lived there for 26 years, um, I would not be able to function. There would be no way that I would be able to do what I'm doing now. So we moved to Colorado for the weather. Um, which, you know, it's funny. I know that meme where it says, oh, nobody ever retires and moves north. Yes, we do. So the the humidity here is almost non-existent. I can go outside year-round, even if it's cold, even if it's hot. Um, and I just feel so much better here.

SPEAKER_00 17:43

That's amazing. And I see, and and I think we, if I'm not mistaken, economists just began seeing people move for healthcare reasons, um, usually negatively, right? They don't have the care that they need, or a hospital system isn't good. So they were picking up and moving as as early as 2020, 2021 with COVID. But I think the folks in the lupus community have known this for a very long time that you have to do what's right for your body.

SPEAKER_01 18:11

Yes, yes, because it it really is the difference between me still being able to work or me sitting on a couch at home because I cannot function because my body has reacted so poorly to the heat and the humidity.

SPEAKER_00 18:27

Wow. So the work that you're doing today with regards to uh advocates for compassionate therapy now. Tell me a bit about that organization and what your mission is there.

SPEAKER_01 18:39

Um with with Act Now, um, we started off now. I like that. Yeah, yeah, that's um actually why I named it what I did, so I could shorten it down really nicely. Um yeah, so uh we do a lot of education, we provide a lot of um advocacy tips, we teach people how to use their voice. Um I have mentored several uh other advocates in the community because my job is not to go and represent people, my job is to teach you how to do this yourself because your story is way better than anything I can say. It is so important for them to use their voices, and so I teach them how to look up, you know, um how to look up legislation, how to testify, how to sign up for testimony. I've taught folks that they can go to the state capitol and just walk in somebody's office, you know, or send a card with the sergeant at arms and say, hey, I want to speak with ex-representative. A lot of people don't understand you can do those things.

SPEAKER_03 19:47

Yeah.

SPEAKER_01 19:47

But we also do a lot to try to connect the community. We do um we'll rent uh a room at the local library and then you know, have a movie like Crip Camp or um Complicated or something like that, just to get people out of that isolation, uh, get them meeting others like them. And then um we do provide a lot of edic education as far as this policy can impact you this way. And this is why, you know, it's important that you use your voice. We've been focusing a lot in the last little bit on Medicaid and home and community-based services.

SPEAKER_02 20:28

Yeah.

SPEAKER_01 20:28

Um, and just yesterday I facilitated a call between our federal uh district representative and families in our district because they have never heard from caregivers. You know, they're hearing all of this rhetoric um that, oh, you know, family paid family caregivers are fraud and waste and you know, all of that. And that's not the case. And I think, you know, a legislator or elected official doesn't know unless they actually speak to the families impacted.

SPEAKER_00 21:00

Just like we said with regards to your doctor doesn't know what you don't tell them, your legislator doesn't know what you don't tell them either, and it's shocking how little they know about healthcare.

SPEAKER_01 21:11

Yes, yes, that people assume that they know these things, that you know they're they're very versed in it, but they they don't, you know, half of the legislators we talk to don't even know that there are caregivers. So it's it's definitely been a learning experience for everybody.

SPEAKER_00 21:32

So as as you think about legislative opportunities that are out there, and you know, obviously a lot of the I would say the majority of the patient community looks at federal, right? Federal statutes and and laws, hoping that there will be a fix there. Um what value do you see in the states that has you focusing on Colorado rather than going to DC?

SPEAKER_01 21:57

Absolutely. I think you are way. More impacted by what happens at the state level than you are the federal level. You know, the federal level, it does have impact, but at the state level, you have the regulatory authorities that implement a lot of programs like Medicaid. They decide a lot of the minutiae. Um, and so uh just for example, you you had cuts from HR1 um that are going into effect, and at the state level, Colorado decided that that money was gonna come out of home and community-based services. And yeah, so it's the most disabled, the adults with intellectual disabilities, um those folks who are being impacted the most on the state level. And so it's way more important to be involved with what's happening at the state level. Um, just as another example, Colorado last year passed a law to codify Olmsted um into the state law and make sure that those uh inclusion protections are there. And as we see now, there's a big fight at the at the federal level. There's a lawsuit, lawsuit out in Texas versus Kennedy. There's that new Justice Department opinion that kind of gives the federal uh government the leeway not to enforce Olmstead.

SPEAKER_00 23:26

And um for the audience that doesn't know Olmstead, give them a brief overview.

SPEAKER_01 23:31

Olmstead is a case that was brought to the Supreme Court that said if a person can safely live in their community with supports, they should not be institutionalized.

SPEAKER_00 23:45

So it's so as you said, the execution of that is still up to the states.

SPEAKER_01 23:51

Absolutely.

SPEAKER_00 23:52

And I think we're seeing the same, if I'm not mistaken, with uh the Medicaid job requirements, or at least the uh government needing to collect uh information on the citizens that are seeking Medicaid uh, you know, status. Um and that is still, I think there's 26 states, if I'm not mistaken, are fighting the federal government right now on that.

SPEAKER_01 24:14

Yes, yeah, we are one of those.

SPEAKER_00 24:16

See, and that's where I think so many people look to the federal government as an opportunity to just knock things out in one Falco, but that usually will take a decade.

SPEAKER_01 24:28

Yeah, if if it's that soon. I mean the government moves at a pace that's like a sloth on Ambient. Um so I think it took, you know, decades for 504 to even be signed and passed. Um, and then we had to get into IDEA um and the ADA simply because 504 didn't go far enough.

SPEAKER_02 24:50

Yeah.

SPEAKER_01 24:51

So, you know, decades of work by advocates fighting.

SPEAKER_00 24:56

Yeah, which can all be undone and can all be doubled down at the state level. And I think that's where, you know, at the same time I've heard from legislative experts that listen, the federal government just takes the best test cases from the states and then decides what they're gonna do, which, you know, is uh go back to ACA. The model was Massachusetts, right? And we have 50 labs, so to speak, to to check out how the policy is going to work. Why not get involved and share your voice on what you think is right for you as a citizen of the state that you're a part of?

SPEAKER_01 25:34

Absolutely. You know, each state also has its own unique challenges. You know, Colorado, we are a very rural state, our entire state has fewer people than most East Coast or West Coast metropolitan areas. Sure. Um, and then we have geographical challenges that make it very hard to get care. Um, so we have a very different landscape than say someplace like Massachusetts.

SPEAKER_00 25:59

Yeah. So you have a couple of mountains.

SPEAKER_01 26:03

Yeah, just a couple.

SPEAKER_00 26:04

Yeah, if I'm not mistaken, I I was in Telluride, I actually had to go to Telluride for a patient advocacy summit, and that is probably the scariest airport I've ever seen in my life. There is a cliff at the end of the runway.

SPEAKER_01 26:18

Yeah.

SPEAKER_00 26:20

Yeah, that's definitely not fun to fly in or fly out of there. But as you take a look at the current legislative environment in Colorado, where do you think patients in Colorado, but and also in other states? Because we see with PDABs, they're prop popping up everywhere. The wonderful people at Arnold Ventures that um let's be reminded, John Arnold was a part of Enron. Yes. Uh, and somehow he came out unscathed from that one and seems to be on the wrong side of every health policy issue from a patient perspective in the last 10 years.

SPEAKER_01 26:57

Yes, yes, he is. Um, you know, with with Colorado, he donated quite a bit of money to the state.

SPEAKER_00 27:05

So we were talking about the uh legislative opportunities of where you think patients should be looking. Um and before we even jump there, I want to see if I can share my screen with you. I just built this and I doubt it is covering all of the legislative issues that are there. Um but let me see if I can open it. So this is uh just showing health legislation, health policy at a state level.

SPEAKER_03 27:34

Nice, yeah.

SPEAKER_00 27:35

So you have the PBM compensation delinking, you have healthcare non-compete limitations, and the prescription drug UPL for embril. Right? So you can go straight to the official bill, but you can also see who is who are the sponsors and who are the leads on it, um, and also find your uh state legislator as well.

SPEAKER_01 27:58

Ah, fantastic.

SPEAKER_00 28:00

So we're we're I'm adding this to um my website at arco.io. Um, but again, I'm I'm a big believer that the state is a major opportunity, but most people don't know what's happening and when it's happening. So just being in the know that there's an opportunity is a big deal.

SPEAKER_01 28:20

Yes. Yeah, I I think just even understanding what legislation you need to watch for. Um last year, I think we passed PBM reform. Um, it wasn't quite the bill that we wanted, but we we tried for that. We also looked at 340B transparency, um, because that impacts our hospitals, that impacts um what medications we can access. So there are a lot of different things that patients can look at. And I think for each patient, it's it's a little different what they what their needs are. Um but you know, PBM reform here is a big, big deal. Um, you know, especially when you're trying to lower drug costs and you're trying to say what parts of the system are being abused, what's working, what's not working, um that sort of thing.

SPEAKER_00 29:16

You mean that you mean the people that just sit in the middle of the insurance company and you getting access to your drugs are not necessary?

SPEAKER_01 29:24

Yeah, exactly. It's it's it's like the middlemen have middlemen, you know. That's right.

SPEAKER_00 29:30

Yeah, that's so and now they're part of the you know the insurance company as a whole.

SPEAKER_01 29:35

Yeah, absolutely. I mean, you've got PBMs that you know, the big three own 80% of the market, but they also own the pharmacies, they're buying clinics, they're even getting into their own, you know, white-labeled drugs.

SPEAKER_00 29:49

And um, you know it's amazing to watch the biosimilars just now take off as they've white-labeled the biosimilars.

SPEAKER_01 29:58

Exactly. And I don't think a lot of people realize that the PBM owns the insurance company, owns the pharmacy, owns the practice, and so it's just a big shell game of where to put the profits.

SPEAKER_00 30:10

That's right, right? Because by law, an insurance company has to, but based off of ACA, prove that 85% of the dollars that it made went towards patient care. Yes. But if you have these other uh ways of or places to put the money, it makes that much easier. So the PBMs, the wholesalers, the as you've said, the the now new manufacturing arms that are popping up in all of all places, the Cayman Islands, uh, as where those companies are based, those are now all your insurance company.

SPEAKER_01 30:46

Exactly. It's it's just one big shell game.

SPEAKER_00 30:49

Yep. And that's where patients can have an opportunity to build noise, as we we call this podcast, to share their voice on what they feel is right for them or not.

SPEAKER_01 31:01

Absolutely, and it's so important that they do because if we don't, you end up with a situation like the big three, um, you know, where it's it's they hold the entire market, basically. You know, they really do. And it's it's sad because the PBMs are like, oh, but the drug companies, and then, you know, but the insurance companies, and it's like, but you own all of it.

SPEAKER_00 31:26

Yeah, exactly. I uh you gotta love that when um PCMA, right, who is the lobbying group for for the uh PBMs, when they come out and point the finger at the insurance company or laughable, yes, right? It's like okay, would you guys get together in a back room and say, we'll take the heat right now, but then we're gonna pass it over to you again in a month? Like that's exactly what happens. Yes, yes. So how would your husband describe what you do for a living?

SPEAKER_01 31:57

Um my my husband would probably describe what I do for a living as controlled chaos. Why so? Um, because I I wear a lot of different hats. Um, you know, my my hands are in a lot of different things here in Colorado. Um, and there always seems to be some new thing that has popped up, whether it's PBMs through the PDAB or you know, getting families together, or um, like this new role that I have with Lupus Colorado, I get to increase community engagement. So I'm always doing some sort of nutty thing. Oh, yeah, she's amazing. So I'm excited for that opportunity just so I can harass her.

SPEAKER_00 32:43

So, you know, you had you you when you talked about finding your voice at 14. You talked about your diagnoses, but how did you get into the nonprofit space doing that work?

SPEAKER_01 32:53

Um honestly, it just kind of happened. There it it again, the controlled chaos. There was no plan to do this. Um, you know, I had never thought in a million years that I would be doing this at all. And sure, it just sort of all organically happened. So we ended up needing the nonprofit, and I actually have um Colorado Rare Disease Coalition. So we do the rare fair every year as well. Um and it it just ended up working out that way. I kind of I have a philosophy of just riding the wave because it shows you where you need to go. Um yeah, and when that happens, when I don't try to push my will on things, I find that whatever needs to happen will just organically happen.

SPEAKER_00 33:45

Sure. What would you say people most misunderstand about the work that you do?

SPEAKER_01 33:53

Um, I think the biggest thing people misunderstand is they they don't realize that I'm not paid by pharmaceutical companies, that I'm not, you know, trying to build a brand or or you know, get out there and you know, I don't want power, things like that. Um, I think they they misunderstand why I do what I do. Um, for example, I had worked with a caregiver group this past year, and they did not realize that I was profoundly disabled until I told them, and then it was like, oh, I thought you were a lobbyist. Like, no. Um, no, I I do a lot of active patient. Yes, exactly. And and I do this because this is my world. And um, I think that's the biggest thing people don't understand until they meet me, and then they're like, Oh you live it every day. Yes, yeah.

SPEAKER_00 34:51

Now you mentioned that you uh people misunderstand or think that you are being paid by pharma companies. Um, do you work alongside of them? Do you find in yourself doing any of that?

SPEAKER_01 35:01

Oh, yeah, um, absolutely. I do work alongside pharmaceutical companies when we have issues we can come together on.

SPEAKER_00 35:09

That's that's what I found to be the most A concerning and B sometimes frustrating conversations I have is when you see nonprofits, no matter who they be, that you know get money from industry and are then having to defend the fact that no, we still have our own ideas and opinions.

SPEAKER_01 35:30

Absolutely, absolutely. I actually at this point don't get money from the pharmaceutical industry. Everything I do is very self-funded. Uh right now, I have a I I make homemade vanilla and I have a sale uh for bake sale every year um at the you know beginning of holiday season to kind of fund what I do. But I do partner with pharmaceutical companies when we agree on things. Um and honestly, with the Colorado Rare Disease Fair, we probably will start taking pharmaceutical money, but that doesn't mean that my motives have changed or that what happens changes.

SPEAKER_00 36:13

It's it's a conversation that I had with Brandon Moxada on this show, in which he said the words um parental ableism or paternalistic ableism, right? In which you think that because we're in partnership, I can't act on my own, that I am you know sovereign to them when that is not the case. But as you've referenced, there are many places that the industry, pharmaceutical companies, biotech companies, med device companies are in violent agreement with the patient community. Absolutely. And do and want to work together.

SPEAKER_01 36:48

Absolutely, and they can be great partners, you know, especially when it comes to things like PDAB. Um, I think that's actually why people think I am funded by pharmaceutical companies, is because the the group lobbying for the PDAB spread the rumor that I was just a pharmaceutical shell company because I had concerns. And it's like, no, I actually read the policy, I did the research, and I have these concerns because I have these concerns.

SPEAKER_00 37:18

Exactly.

SPEAKER_01 37:18

You know?

SPEAKER_00 37:19

Yet they are backed themselves, right? And so are the congressmen and women, right? But for some reason, only your uh position is under question.

SPEAKER_01 37:32

Yes, yes, because there's no way a patient could have concerns. Apparently, we're not smart enough for that.

SPEAKER_00 37:39

Right. And and that's that's the most frustrating point of it, is is that thought that that's all that it could be, is that, well, you know, you don't know enough to know how to how to have an opinion here, yet we've seen it in Congress all the time. If I have to see Josh Howley say pharma, when he's talking about PBMs one more time, I'm gonna you know jump through the screen. The the guy knows the difference, I think, but can't mouth the words appropriately. Those are two very different stakeholders.

SPEAKER_01 38:10

Oh, yes, yeah, absolutely.

SPEAKER_00 38:13

The PBMs are in fact setting the price, pharma companies are not.

SPEAKER_01 38:18

Exactly. And farmer companies have to adjust their pricing based on PBM competition. Yeah, otherwise they don't get put on the formulary in the tier that they need to be in.

SPEAKER_00 38:30

That's right. And this is where, you know, as you talked about before, with regards to the PBMs and them now white labeling their own products, um, where it really becomes a shell game in that the PBMs were pushing the products that they were making the most money off of, not the products that were best for the patient. Absolutely. And the prices were strictly set by how much money they made, not what the impact was to the patient or the employer. Yes. Yes. But now we all have to pretend that that's not the case.

SPEAKER_01 39:05

Absolutely, and even our own data through Civic shows that of the top 11 drugs utilized, nine of them had cheaper generics or biosimilars out there. And so they came out and said utilization is being driven by rebates, not the price, not the list price. And it's still almost like, no, we're just gonna pretend that's not the case.

SPEAKER_00 39:31

You and those are key words there. Utilization is being driven by rebate. And for those of you who don't know what those words mean, that means the product that's being selected is being driven by the amount of money the PBM makes. The only legal kickback in all of healthcare uh is this PBM payment to play and be able to get access to a patient population. Absolutely.

SPEAKER_01 39:59

We've even had PBMs testify in our state house saying, Oh, part of what we do is we we pull out drugs that you know meet all of these different um criteria, and then we negotiate rebates, and that's how we decide if they are on our formulary.

SPEAKER_00 40:17

And where do those rebate dollars go, sir?

SPEAKER_01 40:21

Exactly.

SPEAKER_00 40:22

Right? Yes, and they can't they can't tell you that or they don't want to tell you that.

SPEAKER_01 40:26

It's proprietary.

SPEAKER_00 40:28

That's right. In fact, if I'm not mistaken, by arguing for transparency in those, they said that you would kill market competition.

SPEAKER_01 40:36

Yes, yeah, because if we knew what was going on, the market couldn't compete. That's not free market, and it's like it's the same thing with hospitals, right? Oh, yes, yes, exactly. If we knew what they were charging and and where that money went, yeah, you know, it would just collapse everything.

SPEAKER_00 40:55

God forbid, you know, and and it's it's funny, I've been been having lots of conversations about this, and and the transparency piece always comes up with, well, the market can't handle it. Well, maybe the market shouldn't exist.

SPEAKER_01 41:07

Exactly. Maybe the market needs to be restructured.

SPEAKER_00 41:11

That's right. And everyone says, well, then what, you want it to collapse? If it can't stand under its own weight, then sh if that's what happens, then that's what happens. We're facing the same thing right now in in higher education. Yes, uh where universities are having to employ recruiters to go out to convince kids to go to college in this new age of AI. Yes. Right? Well, maybe your your school should not cost nearly a hundred thousand dollars a year.

SPEAKER_01 41:41

Yeah, exactly. Maybe I shouldn't have to pay eight thousand dollars a course.

SPEAKER_00 41:45

Right? And it's it it it just becomes this uh as you've referenced here, this no notion that if we were just all educated on the topic, right? If our if we go back to as we come into Fourth of July weekend, our founding fathers who said we will have a republic for as long as we can keep it, and that our republic depends upon an educated populace. Well, so does healthcare. The problem is that we've been kept in the dark.

SPEAKER_01 42:14

Yes, absolutely. Everything has become very opaque, and you don't know what who's doing what where the money is going, who's making X amount of money, and you have all these people pointing fingers at each other, but then nobody is actually nobody does anything. Yeah, nobody does anything, nobody's being transparent about anything. Or held accountable, yes, and that's a big thing, yes.

SPEAKER_00 42:40

Yeah, and it's it's it's terrible that as patients, we are held accountable. Yes, we are we have to remain compliant and we have to do what we're told, but they don't.

SPEAKER_01 42:53

Yes, it's always the patient that suffers in any of this. It's not going to be the healthcare company, it's not gonna be the insurance company, it's not gonna be anybody else except the patient who needs the care and the medication.

SPEAKER_00 43:07

That's right. Now, uh my mindset, and I would love to hear yours, that these organizations, these uh insurance companies, PBMs, GPOs, wholesalers, you name it, the system's not broken, but they're all doing their job, which is ultimately to increase their value to shareholders. But the patient is nowhere in that mix.

SPEAKER_01 43:32

Correct. That is my observation as well. How do we change that? I think to change that, patients have to get louder. They have to say, we are the end result of this, we are the consumer of the world.

SPEAKER_00 43:47

We're the only reason.

SPEAKER_01 43:48

Yes, we're the only reason you exist, and we need to stop letting ourselves be taken advantage of. And until we do that in mass, you know, it makes it very easy for the system. To kind of, you know, push us aside and focus on shareholders versus us.

SPEAKER_00 44:06

Yeah. I could not agree more. In fact, I have a white paper coming out about this. If we even look back, for example, at this whole quality movement, it was just taking the eye off the ball what really mattered, right? We we have not improved quality at all in the last 20 years. But we've increased the number of quality metrics by 3,000 X. Yes. Right? And it's done nothing for us. So why are we just continuing to do that?

SPEAKER_01 44:34

Exactly. It's somebody is benefiting somewhere from it. And it's definitely not us. And we need to change that. Everything, as far as healthcare goes, needs to take a deep breath, step back, and refocus on the patient.

SPEAKER_00 44:52

Amen. See, and this is why when people uh step back and look at well, why is pharma giving their money to this nonprofit? They must be trying to get drug utilization out of it. No, from my understanding, having worked in the industry for the last with the industry for the last 20 years, they want the decision to be made by the doctor and the patient. Exactly. That's it. And guess what? Most patients want that too.

SPEAKER_01 45:19

Yeah, most of us do, because we go into our doctors trusting that they're going to give us what is best for us, not necessarily what's best for the PBM, what's best for their employers. Um, yes, you know, because even the doctor practices, they have metrics that they have to abide by. They're they're timed. It's very much a managed business.

SPEAKER_03 45:45

Yes.

SPEAKER_01 45:46

Yeah. And and so we have to really get loud and say, don't forget, we're here. You know, this is why you have a job. This is why you can make money. Yes.

SPEAKER_00 45:59

It's so it's so vitally true for patients to recognize that. And, you know, as you think about being a patient yourself, what are some of the best practices that you perform for yourself to ensure that you're getting the best out of your care?

SPEAKER_01 46:14

I I actually um I have a habit of firing bad doctors. Um uh just as an example, I had to have uh neck my neck fused, and the first fusion failed. And it took me four years um to get somebody to even consider that something was wrong. And by the time I found a doctor willing to listen, yeah, there was a screw embedded in my cerebellum and another one working its way in. Um, but up until that point, every doctor was like, oh, you're fine. This looks stable. And you could see on the x-rays it wasn't. Um, you know, and yeah, I, you know, sometimes it's been very frustrating. I've had to take breaks, but I think the biggest thing that I've done is I have been determined and persistent.

SPEAKER_00 47:07

Yep.

SPEAKER_01 47:08

So just like back pain.

SPEAKER_00 47:10

Smoke up for you. I love that. What you know, I mean, obviously, this can be daunting work, right? And it can feel like you're never getting anywhere. But what inspires you to continue to go every day?

SPEAKER_01 47:23

Oh my gosh, I know so many amazing people. And I look at my community and they inspire me to keep going every day. It's it's not about me because I know my voice is loud. That is one of the working things I still have left in my body. But I see the struggles my entire community has, whether it's getting care, whether it's finding respite, whether it's, you know, trying to keep up with legislation and changes that keep coming one after another. And I just they're amazing people. You get to meet the best people doing this, and that just keeps you going.

SPEAKER_00 48:05

I I love that. As you think about the this work that you've been at for a number of decades, ultimately, what is the best piece of advice that you've ever received?

SPEAKER_01 48:16

Oh, that's a hard one. Um, the best piece of advice I've ever received, um, you know, it's it's a combination of two things. One, be persistent like back panter Ebola. Um, and then the other one is take breaks. It's okay to take a break and and get your mental health in order because sometimes it's just really hard. Um, but but just keep going. You know, you take a break, you don't stop.

SPEAKER_00 48:45

Yeah, I I I love that because as you said before, the best work happens when you're riding the wave.

SPEAKER_03 48:52

Yes, right?

SPEAKER_00 48:52

Not not when you're trying to force something or make force others to see it your way, but rather when the when the tide's moving in the right direction, that's when you tr you drop your pole. Yes. Right? And and it's something that I've continued to see you do online in in when you're allowed and what you're loud about is as as it needs to happen, you're there. Yes. And when it when it when the tide goes out, you'll quiet down when necessary. But if you see something that needs to take action for a patient, you're still there.

SPEAKER_01 49:26

Yes. Yes.

SPEAKER_00 49:27

Right. So if you don't mind, if you could go back to that 14-year-old that you once were with an RA diagnosis, what would you tell her?

SPEAKER_01 49:40

Trust yourself. Trust yourself more because I did go through a long period of time where you know I I did not have support and my family was not supportive. And so I started doubting myself and my ability to advocate for myself. And I think that confidence there is incredibly important. You have to trust in yourself, otherwise it's just gonna get too overwhelming, and a lot of people just give up.

SPEAKER_00 50:12

Yeah, I it's it's funny you say that because uh it's what I find myself telling every patient is trust their gut. Exactly. And it's it's it's a funny thing to tell people to trust this thing that you don't know why it's there or what it's for, but you know it when you feel it. Yes, you just have to learn to trust it.

SPEAKER_01 50:30

Yes, yes, you do, and you have to learn that other people don't ha feel what you're feeling, and so they're going to tell you, you're making it up, or you're being too dramatic, or you know, do you really need all those medications? kind of thing. And you know, you have to be strong, you have to trust yourself and say, Yes, you know, my bones are being eaten, my soft tissue is dissolving, you know, I'm not making this up.

SPEAKER_00 50:59

It's okay for you to be you.

SPEAKER_01 51:01

Yes.

SPEAKER_00 51:02

And and it doesn't define you. As I can tell. You're your your diagnoses are just a part of you, they don't define you.

SPEAKER_01 51:10

Exactly.

SPEAKER_00 51:11

You are the voice, not the body.

SPEAKER_01 51:14

Exactly. I am so much more than my diagnoses, and it's okay to to accept that you have those limitations and move forward, but you also have to understand, you know, don't hyperfocus on all of the things you're losing because then you forget to see all of the things you still have.

SPEAKER_00 51:35

So true. You know, before we close out, I I do want to go back to industry because we do have a large portion of our audience that is in the industry. Is there any guidance or advice that you would give to industry advocates that are coming into many states now and and don't know where to start or seeking coalitions that you have already built? Um what advice would you have for them?

SPEAKER_01 52:03

I the advice that I would have for them is work with your patient, support your patient, and understand they are coming from a perspective you may not have. And that's a very valuable perspective. So, you know, um, for example, if you have patients that are working to improve a policy, don't get in their way. You know, don't come in and think, oh, well, we're industry, we can do this better. Work with them and amplify their voices because that's really how we make change for the better.

SPEAKER_00 52:39

And you are the one out there doing the work of ensuring folks with a voice are using it.

SPEAKER_01 52:46

Yes.

SPEAKER_00 52:47

Right? And that is such a vital component. You are truly building an army of patients that can use their own voice.

SPEAKER_01 52:54

Oh, yes, much to the dismay of our legislature. Yes.

SPEAKER_00 52:59

They should be afraid. Yes, honestly, that that should be exactly where we have them. That's the way our government was built. They should answer to you.

SPEAKER_01 53:09

Yes, this is this is a government for us. It's not uh there to govern us and what we do. We are there to put handcuffs on the government to say this is not helping our community. We need to do better.

SPEAKER_00 53:24

And only you know what's how it impacts your community. So you have to step up, you have to take a stand. Bridget, this has been an amazing conversation. I really appreciate all the work that you're doing. Where can patients find more information about you if they want to learn how to develop that voice?

SPEAKER_01 53:42

Um, Facebook right now is the medium we use the most. Um, but um, you can get on Facebook, you can message me, you can send me an email, um, or even text me if you have to. Um, because I'm always in endless meetings, phone calls are a little difficult. But um yeah, LinkedIn, Facebook.

SPEAKER_00 54:05

And we'll make sure we'll also link to Advocates for Compassionate Therapy Now as well, Act Now, um, so that folks can find find that organization as well as Lupus Colorado uh in the show notes so that anyone that needs to find you or the organizations that you help serve in, they can do so.

SPEAKER_01 54:23

Excellent. Thank you so much. It has been such a pleasure.

SPEAKER_00 54:26

Thank you.