Building The Noise with Shelley Gerson: EPISODE 006

SPEAKER_00 0:00

I had a lot of people mad at me when I moved into industry. I have people who are still mad at me.

SPEAKER_03 0:05

But I think it's important for people direct to know why you made the move.

SPEAKER_00 0:10

Yeah, I made the move because I really I wanted to be the mole, right? I wanted to be the one to tell on these people that might do this bad stuff again. And uh I said that when I was doing my interview, I I really took the interview sort of nonchalantly because I thought they're never gonna hire me because I'm gonna tell them exactly what I think. And I did. And I said, Well, you know, if anything goes wrong, I'm gonna tell everyone, right? I said, I don't need the job that much. I can always get a job. But uh uh, and they said, Well, that's why we want you. And that was a great answer.

SPEAKER_02 0:56

Welcome to the Building the Noise Podcast.

SPEAKER_03 1:00

Ladies and gentlemen, welcome to the Building the Noise Podcast. I'm Matt Teresco, and joining me today is a patient advocate from a mid-sized biotech organization, Shelly Gerson. Shelly, thank you for joining us today.

SPEAKER_00 1:13

Oh, my pleasure. Thank you for inviting me.

SPEAKER_03 1:15

Yeah, so as we had previously discussed, and for the audience members that have seen some of our other episodes, our goal with building the noise is to ensure that patients know that throughout our country, there are individuals out there in the industry or in disease state nonprofits that are doing work every day to support patients. What I'd love to understand from you, Shelly, is what does that work look like for you?

SPEAKER_00 1:43

Oh. That's a big, big question, actually. Uh, right at the moment, I do work for a mid-size, closer small biotech company, and I lead uh several development programs for people that have autoimmune illness as we do trials to see if our medicines could potentially change uh treatment options for people. And then I also work with communities of people who currently do take one of the medicines that we have and support those communities with um education, uh support, conversation about how to manage living with whatever chronic illness they're dealing with every day in between those big moments of diagnosis and treatment decisions and every other big moment, and dealing with how do you just live your life all of the new challenges.

SPEAKER_03 2:53

I love how you you put that, that you know, it's really more a focus on the day-to-day, not the big moments. Because I I would say that most of the industry is always focused on the the big moments, the diagnosis, the the treatment decision, the appointments. Tell me more about the the you know, I would I would say the small moments is wrong. Um tell me more about that.

SPEAKER_00 3:20

Well, I I can tell you, uh it's without a doubt, people typically do not understand their insurance until they need to, right? And understanding your insurance for, you know, strep throat or COVID is you know, is one thing, but to understand your insurance when you have a chronic illness potentially needing or wanting the best treatments that may be uh not on formulary or too expensive according to the insurance companies, how do you manage that? Because there's just so much, as you know very well, that we don't know uh when we've signed up for our insurance plan or when our employers give us the insurance plan as part of our compensation. So when you're not feeling well, you're faced with those typically that's the diagnosis time and the treatment decision time, and uh you're trying to figure that out at the same time. And you may be being told, sorry, we're not gonna cover this, or no, you can't see Dr. A, but you have to go to Dr. Z when really you want to go to Dr. A. How do you get through that?

SPEAKER_02 4:32

So networks, right?

SPEAKER_00 4:34

Yeah, right. So it's and that's like more of a big thing, but but other things could be um, you know, how do I talk to my family or my friends about the fact that my energy levels are depleted by noon or by two, and then I'm not gonna come out every night or even once a week, and that I'm not not wanting to be with them, but I just can't.

SPEAKER_03 5:02

Yeah. What's this I would imagine there's there's obviously patients the stigma that they feel. Oh yeah, or or even maybe it's a bias in their own mind that they feel people will perceive them in a certain way, so they they isolate themselves. And from my understanding, a lot of the work that you're doing is helping those patients to to recognize that no, this doesn't define them, uh, but we can we can work best together.

SPEAKER_00 5:28

Absolutely. I mean, that's that's one of the things that I love doing when I'm out and doing patient education is first to ask people to tell me who they are, yeah, outside of their condition, because that's not who they are at all.

SPEAKER_02 5:43

I love that. Yeah.

SPEAKER_00 5:44

Yeah. So tell me who are you? What do you do? What's important to you? Uh, who are the people that are important to you? And remember that those things about you, the skills that you have, haven't gone away now that you have a new diagnosis, and you can rely on those skills still.

SPEAKER_03 6:02

Yep. Fantastic. So, with that said, you you break up bring up a great segue segue with who are you? Uh and really what I what I want to get a sense of from you, but my question is more um, how did you get into your role? Uh, I believe by you know taking a look at your LinkedIn and having some discussions with you previously, you came through from the nonprofit side. But tell tell us more about that.

SPEAKER_00 6:30

Well, uh my father had a genetic condition called hemophilia A, which is typically passed, uh the the actual clinical condition is passed from mother to son. Fathers pass the trait or the mutation to their daughters, who often don't have clinical symptoms, although we're we do recognize that many people do, many women do. Uh I happen to be lucky in that a genetic uh anomaly happened where uh I happened to be born with a severe form of this hemophilia A.

SPEAKER_03 7:14

And it was lucky is an interesting word, yes.

SPEAKER_00 7:17

Yeah, lucky. Uh uh, it was discovered at age three months uh when I went in. My parents took me in for my three months' injections and bloodly in my thigh. And luckily, my father, knowing what hemophilia looks like, uh he was able to get connected to the right physicians very quickly and right away because he had formed, I wouldn't say an official uh nonprofit organization, but a group, a community of other people, other men at the time with hemophilia. So he connected me right away, and then that reinvigorated him to stay more involved in the community, and he served on the board of the Hemophilia Foundation of Michigan uh in its iterations and helped to start the camp. Some of the board meetings were actually in uh our dining room, and I'd sit under the table while they were having the board meetings and I'd listen to what was going on, didn't understand any of it. So I was brought through the patient organization uh through their camping program all the way through teenage hood. And I worked uh every job except for cook and and lifeguard. Uh I was camp director for for many years of of the camp, which changed my life and hopefully changed other people's lives. And then I went on the board of directors uh of the organization. Uh I was on the board for nine years. I was president for four, and then worked with the national organization. I was co-chair of the national meetings for two years, and uh that's that was my four way for foray into nonprofit.

SPEAKER_03 9:17

Sure. Yeah. So you found your way over to industry on the nonprofit side.

SPEAKER_00 9:24

Which is really a surprising thing. Uh yeah, many people don't remember this history. It's a history that people in the world of hemophilia can't forget. But uh back in the 70s and the 80s, we took prep plasma-derived treatments. Uh so treatments coming from donated blood. And uh the manufacturers um chose to continue to sell these treatments, even though they were aware that hepatitis C and HIV were in those treatments. So as a result, we had many people pass away and die uh and who were infected, and we were raging against industry.

SPEAKER_03 10:11

Sure.

SPEAKER_00 10:12

And I was I was part of that. I was part of that rage.

SPEAKER_03 10:17

I would imagine so.

SPEAKER_00 10:18

And then as the president of the organization, I one of my jobs was to make sure that the the current industry, the people that weren't necessarily part of the the bad decisions that they made early in the 80s, um, but who were who were industry represent representing those bad guys, right? And I really wasn't very nice to them. Holding them to very much higher standards than anything else or anybody else, and uh really putting my foot down quite firmly about what they could say and what they couldn't say and do at our events. Um but interestingly, because of that work, I did have a company who had an interesting new innovation um for treating people with hemophilia A and hemophilia B come to me. They were not part of the original group of industry partners who are part of all of that history. And they asked me to come in and help to set up the patient engagement plan with a few other people from the community. And they selected us not just because we had hemophilia, we were nurses, I was a teacher and a therapist. We had uh we even had some nonprofit directors come on board. So we had solid professionals but with patient experience who came in.

SPEAKER_02 11:51

Yep.

SPEAKER_00 11:52

And that was just a beautiful, unique experience, and they listened to us, and we were able to influence from within, and they operated in a completely different way.

SPEAKER_03 12:04

That's fantastic. You know, to take us back, uh, you had referenced that CAMP changed your life. Tell me a bit more about Camp, about the pro about how it was developed, obviously for children with hemophilia, I would imagine. Yes. But I I think that a lot of people suffer, uh, no matter what their disease state is, with feeling isolated. Yes. I don't know about these types of resources. I would love to hear uh how camp changed your life.

SPEAKER_00 12:34

Well, interestingly, the camp was established by a well-known hematologist from Michigan State, and he said it wasn't for the kids, it was for the parents to get a break from kids with hemophilia because uh, you know, the way the treatment was it was all reactive. So there was a lot of trips to the hospital, a lot of bleeding to address, and parents were generally very uh on edge all of the time, which is different from now. But so he he helped start this camp so that the parents could get a break and that we could all get together as kids. And I remember yeah, and to be kids, and I remember pulling up and um seeing other kids uh on crutches, we bleed internally into our joints, yeah, and it causes uh uh swelling and it's very painful. You can't bear weight on your ankles or knees if you have that going on, and or in your elbows, you can't do anything. And pulled up, and I see all these kids in wheelchairs and on crutches, and my dad said, uh, you know, all of those kids they take shots like you do, because my medicine came through a shot or an IV, and said they do, and and he said, Yeah, they all have hemophilia like you. Now it was a little bit interesting because I was the only girl. Uh there were two other girls there, but they had different bleeding disorders. So what happened was uh those boys uh actually created a situation where it made me want to be the best leader on the in the history of the of the planet. That's fantastic. So uh I can bleed just as much as you, and I show up and do my infusions when I was supposed to, and like see the same medicine as you, and uh and then I became lifelong friends with them. Uh they were my brothers, and you know, we could share our war stories and do silly things, uh, you know, have infusion races and things that nurses don't like bad.

SPEAKER_03 15:00

A nurse can't like that. It's it's it's it's impressive though. Yeah, I have daughters, I have young daughters as we've discussed, and they make me better. Um but at the same time, I have nephews that are little boys, and they're harder. But so to to really get access to them and to um get them, you know, to see you differently, um is not an easy feat. Um so I commend you on that.

SPEAKER_00 15:32

Yeah, I mean, and it's still the case uh that women who um carry the condition, meaning they have one copy of the mutation. They aren't being seen even by the medical community very well, even today. Uh, because uh, you know, for a lot of reasons where doctors aren't staying up with the new information and new research. So it's still kind of an issue in the wider community of people with hemophilia that women don't aren't always recognized as being some people that bleed.

SPEAKER_03 16:10

Sure. Is it a you know a set misconception, so to speak, that oh, you're female, that that won't impact you.

SPEAKER_00 16:18

Exactly. And that's just you know, with rare conditions, uh medical students get like a paragraph, if any, about rare conditions. Right. And they did not learn about you know, skewed X inactivation, which explains my genetics and why I am X Skewed X inactivation, God.

SPEAKER_03 16:40

Yes, yes.

SPEAKER_00 16:42

So, you know, what I learned then was like I have to be able to talk about this in an intelligent way, so that every time I go to the doctor, which would happen, or go to the hospital for whatever reason, that they I mean, many doctors said you can't possibly have hemophilia, you must have something else.

SPEAKER_03 17:04

Yeah.

SPEAKER_00 17:05

Well, let me teach you a few things.

SPEAKER_03 17:08

How did that how did that make you feel when your physician was trying to gaslight you, so to speak, and tell you that you didn't have what you said you had?

SPEAKER_00 17:18

Well, it was just amazing that they would number one, I this was happening when I was a kid, a teenager. Often my parents were right there with me. And uh I'll never forget being at a hospital while we were on vacation, doctors didn't know us, and my mother said, We need this medicine, you can call our her doctor back at home. And the doctor refused to do any of it because what he knew was what he knew, yeah, and that women don't bleed, and that I remember being in a lot of pain, yeah, and thinking, does he think I'm faking this? Like, how could I possibly be faking this? Because it was quite obvious. And that fact that he wasn't listening to my mother, and it just made me so mad. And that's when I realized I have to be smarter than them and to be able to speak intelligently about my.

SPEAKER_03 18:19

Yeah, no, I I'm uh actively developing programs for patients so that and and I know that organizations like yours do as well, because unfortunately it's unfortunate, but patients need to be their own best advocate. It's unfortunate that you learn had to learn that that young. Uh but I would say that your experience is what's allowed you to excel as an advocate both in the nonprofit world, but also in industry. Would you agree?

SPEAKER_00 18:53

Absolutely. Uh, I think what has really helped me in industry is um bring reality uh inside, internally, to a lot of really good-hearted, very smart people who really are dedicated to trying to help people. Um and they want people to feel better and to get better. Um, but if they don't have their own lived experience, they really just don't know. Yeah. So my one of my main roles is to bring in the patient voice internally and to ensure that any decisions that are being made internally that they're informed by patient experience, either through me reporting what I've heard or bringing patients in or setting up panels or advisory council, any number of ways to do that. Um, because you know, uh when a person says, well, it's only one injection a week, that's not too bad. Well, maybe for you, but have you had one injection a week? You know I actually told someone that said something like that. I said, Well, I start my own IVs every week. Do you want me to show how that what that's like? And he his eyes got big, his face got pale. Yeah, sure. Yeah, and I said, So maybe it's a bigger deal than you thought, right?

SPEAKER_03 20:34

Yeah, yeah. So yeah. And I will I will say it's something that we see in the industry all the time, where you know, oh, we we have this uh pill, or I remember very vividly in the in the case of rheumatoid arthritis product, in which they didn't check with the patient community on uh were the pens, the auto injector pens that they were using, were they usable for patients with rheumatoid arthritis? And in this case it was no. Um so you've you've spent God knows how many dollars to create this product in this form that no one can use.

SPEAKER_00 21:11

And and it's not very expensive to set up some human factor studies and give them a demo of the pen and and say, let's walk through how you would have to use this, what is this like for you, and let them talk you through it, and then you can go back without having spent all of the money to have all of them created and to fix it. Because when you invest up front and you don't get patient feedback, that's so sanely expensive for the company because they're not gonna go back and retrofit or change it, right? So let's save some money. Talking about the patient talking to the patients first, gonna save time and money.

SPEAKER_03 21:57

Yeah, and I think that's something that your organization has. That has really helped to implement within your or within your company is this let's go to the patients early and often. With that said, what do you feel you know in the industry overall is still most misunderstood about the advocacy function?

SPEAKER_00 22:20

Well, it's a real need is to better be able to um find good metrics to measure our impact. Um the impact of relationships is not easy to measure on the business. Like how how does having a relationship with a representative a representative of the company, how does that make things better for the company? You and I both know that if you know and trust somebody from a company, that is very valuable. Um, but I can't I can't measure what that means in terms of what the bottom line looks like. So that that is the reason why I think companies don't understand the value of in of advocacy, is they can't, you know, measure it. Yes, they can't measure always. Like we can measure the number of programs that we do, we can um even ask patients uh what was the impact of this education? Is it going to change? Have any of your intentions changed in terms of how you talk to your doctor or what resources you're going to look for? Um, but it's it's difficult. Um so I think that they just don't understand um the value of that. And and that um when I'm faced with looking at a two different products that are equal in efficacy and safety, I can tell you I look at the company who is most involved with the community and who knows me the most and demonstrates that.

SPEAKER_03 24:07

It's a fantastic point. With it, this has come up on a couple of episodes of this show, and I just had this conversation this morning. Uh I don't think the commercial leaders in industry are aware of how important patient-to-patient dialogue is in a treatment decision for patients. Maybe you can talk a little bit about that for yourself. As you said, if you have product A versus product B, and they on paper are exactly the same efficacy, you go to the one that you know is working with the community. Uh, but what might that look like for other patients?

SPEAKER_00 24:46

Well, you know, when uh when there's innovation that happens in a community where there hasn't been any, it often explodes within short order, right? Uh I know in the world of hemophilia, we only had a couple of industry companies in the business, and then all of a sudden there was this explosion of new mechanism of action and you know, different options for replacement uh factor. And what happens is you get together with your friends in the community, you're at a patient event, an educational program on Facebook and Instagram, asking, you know, uh, what do you know about Company X and their product? What was that like for you? Did you feel like it helped? Did you have any side effects? If so, what were they? Um, is it easy to take? And that's really important, but at the same time, I've seen a lot of misinformation happening in those in those places. So I think getting information from the community is really critical because it kind of points you in the right direction. Um, and you get some high-level information about how people are experiencing using the medicine. But it's really important to go find a trusted medical provider, whoever that might be, it could be, you know, a nurse. Uh, you know, some nurses are better than the doctors, right? So 100% agree. Yeah. So you go and talk to them. But um, and I know that in my community, if you have a trusted person who works for industry and you have a long-lasting relationship with that person, and that there's always been transparency and meaningful education and authenticity, then uh that information from that person is going to be more valuable than coming from someone you don't know.

SPEAKER_03 27:01

Sure. Yeah, no, it it's so vital that our commercial leaders recognize this discussion takes place, um, and that at the end of the day, the patient is the ultimate customer. Right. You know, I think there's still some companies that are locked in on the doctor as the customer. Um, but going back to your c your colleague that had said, you know, it's just one injection a week, um, they're not doing it. That's right. And the doctor's not taking the medication usually. So it's really the patient that matters.

SPEAKER_00 27:36

Yeah, it's very interesting because I I uh when I was in my former role when I was working in in the world of hemophilia, yeah. I went into uh a very well-known physician's office here where I live. Uh, there had been a new innovation where there was more time between infusions because people with hemophilia were essentially having to do IV infusions every other day, which is extremely burdensome, especially if you're a kid. And he stated that he just didn't feel like it was that much of a difference of a uh, you know, going from every other day to every four days.

SPEAKER_02 28:18

Yeah.

SPEAKER_00 28:19

And I said, Well, what have your patients said about that? He said, Well, I don't know. I he clearly hadn't asked the patient. I said, Do you want to hear a one story, just one story about a patient experience? And I the story of a mom with two boys with hemophilia that both had to be infused every other day, also had another sibling to take care of and probably pets and a spouse. And he said, Do you know what the mornings are like because you want to give it in the morning. So when you're at school, you're fully protected. And what do you think it's like when you have to get two infusions in in the morning every other day? Get them breakfast, get their bags packed, take care of the other sibling who is feeling left out, walk the dogs.

SPEAKER_03 29:12

Little boys, so to speak, in the morning to begin with.

SPEAKER_00 29:15

Right. And he just looked at me, he goes, Well, I guess I hadn't really thought about it that way.

unknown 29:20

Hmm.

SPEAKER_03 29:21

Hmm. There's the problem. Yeah, right. Exactly. That's where again the patients knowing that there are support programs out there, that there are uh voices out there fighting for them, but also a listening ear. And I know a lot of the the patient advocacy organizations that I've worked with are just unbelievable at being able to connect people so that you know there's someone else out there like you.

SPEAKER_00 29:48

Absolutely. It's so important. And I've I have met so many people just in my daily life where I learned that they've recently got diagnosed with something, or they have been diagnosed for years, and they say, Well, I've never met someone who has whatever the condition is. I said, Well, have you looked for a patient advocacy group? And they look at me like I'm speaking another language. I said, Well, you there's probably a group of people who are like you. Let's look it up. And I pull it up on my phone and I said, Why don't you call them and see? And then I'll talk to them later, and they're just flabbergasted because even doctors don't think to point them in the direction of those organizations.

SPEAKER_03 30:29

Yeah. Yeah. And yeah, difficulty finding them at times, too.

SPEAKER_00 30:34

Yeah, absolutely. And I would say to those leaders of patient advocacy groups, you you have your uh responsibility to your patients, but you also have the responsibility to inform the providers of the very important services that you provide to patients and get those providers involved as much as you can. Uh critical. Absolutely.

SPEAKER_03 30:59

Absolutely. Uh actually, one of the tools that we as an organization just built called advocatebridge.org, and it's a site that anyone can go to, put in whatever disease diagnosis they've gotten, and it will show all of the nonprofits, uh, both patient advocacy organizations, professional societies, if if anyone's trying to find a professional um for for continued uh dialogue on treatment, and community-based organizations that are aligned with that therapeutic area. Because that that is so good. If we can knock down those barriers and get patients to the right people, we know that they'll have better outcomes.

SPEAKER_00 31:38

Absolutely. And and I think the other thing about patient advocacy communities is that it kind of gives you uh permission to push back a little bit with your providers because you're new to being chronically ill, you don't always know that. And you know, you hear other people talk about their conversations with their doctors, and often people are surprised at first. Like, you said what to your doctor? Like you told the doctor what medicine you wanted to be on. Told them like, yeah, I told them, and it it allows them to see that relationship in a very different way than what society has sort of kind of set up as the doctor as God.

SPEAKER_03 32:30

A paternalistic view, right? Yeah, yes. Actually, so the the the acronym you see there, empowered, um, is a program we've developed for patients, which stands for educate, um, motivate, prepare, uh, witness, recruit, and direct. So that if we can educate the patient and motivate, I I've dealt with, you know, when I was going through opiates and doctor making make that decision of getting off of them for six months, your identity crisis of well, this is who I've been, or now I'm aligned with this diagnosis, that might all shift. Am I comfortable with that? So the motivation piece is big. Um but then preparation for going into that appointment. How have you even thought about the last 30, 60, 90 days and questions you want to ask, knowing that you can ask them as well. Right. And then witness, we don't expect you to be an expert, but if you've been educated on the incentives in health care, now you can witness and see what's happening. And then last the last two there, recruit your care team and your support team so that you can direct your care. It's your job to get healthy. There are plenty of people out there that want to support you, it's knowing where they are and building those teams. And as you referenced with the doctors, people should know that they can fire them and get another one.

SPEAKER_00 34:00

Absolutely. I can't tell you how many hours I fired.

SPEAKER_03 34:04

I'm sure.

SPEAKER_00 34:06

I love my nurses, but yes, I can fire a few.

SPEAKER_03 34:10

So what what would you say motivates you the most to do the work that you do?

SPEAKER_00 34:16

Um honestly, my my favorite experience when I'm working is it, you know, I spend a lot of time at my computer, but I do get to go out. And it's uh on the weekends, which many people grumble about, but that's when I get to be with other people who I don't have their conditions. I work in a different community now. But we we experience the same kinds of things in managing living with a chronic illness. Yeah. Right. So being able to do a program about telling the story of your symptoms is so empowering to watch them get it when I talk about don't just list out single words or numbers if there's a rating scale. Like that's important, but now you have to tell the so what? Yeah. So what now? So I work in uh a community of people that have neuromuscular weakness, it's very significant, it's very impactful. It impacts uh, you know, some women and of childbearing age, and often being pregnant or delivery exacerbates that weakness. And uh I asked her, you know, she said, Well, I I have upper body strength weakness, and I, you know, list some things that she couldn't couldn't do. But I said, Well, what does that mean to you personally? She said, Well, I guess it means I can't hold my baby. And I said, What does that mean to you? She said, I'm a terrible mother.

SPEAKER_03 36:06

Oh man. Yeah.

SPEAKER_00 36:08

I mean, all it takes is to ask, so what does that mean to you? And so doctors don't have the time. I think doctors want to know, I really do in general. But they are in a system that they have no control over right now. And so if the doctors don't have time or can't do that, then we have to do it. And so when I was able to talk through that with her, is to say, can you come up with at least one or two sentences about what it means and how to be the mom you want to be? What does that look like? And how that's a goal, and that that's the goal you want to work on with your doctor to get back there.

SPEAKER_03 36:52

That's fantastic. That is that is advocacy in its essence ultimately of reminding folks what's possible, but also that which they're missing out on in their current state. And that that motivation of where do you want to get to? And I think that that statement of what does this mean to you works also really well as I think about the work that you do internally, right? Of here's what patients have said. Medical, regulatory, market access. What does that mean to you? How how do you best knock down silos? May it have been in your nonprofit work, may it be in in industry to ensure that that patient voice percolates and is a part of all teams.

SPEAKER_00 37:46

Well, uh the way I am doing it now, there's probably many different better ways, but is bringing those patients as much as possible into the discussions with all of those cross-functional team members and their customers.

unknown 38:03

Yeah.

SPEAKER_00 38:03

So when we have access people, I say, Do you need a patient to go with your meeting for an important payer meeting? I did that. Yeah, it's so important. I had one person who was quite a Spitfire, uh, I brought with me, brought her on purpose because she was quite a self-advocate. And one of the treatments uh for her condition was steroids. And that was the go-to. It's cheap, it's been around forever. And she put her foot down when she was told, Well, we're gonna give you steroids. She said, No, no, you're not going to give me steroids. So next, sitting next to her in this meeting was this payer, a person representing an insurance company. And he said, Well, when she said that, she said, Well, I'm not gonna take steroids. And he turned and looked at her instead, Well, I guess you're just out of luck. And I was getting ready, I was getting ready to like step in and give him a piece of my mind. But my patient did so herself, and she did it beautifully and impactfully, and talked about why steroids was not the answer for her, and that there had to be other options and a path to those options, and he was stunned and didn't speak much after. So, but bringing those real life experiences to those people who make decisions, critical.

SPEAKER_03 39:42

Yeah. I and I think that this is really important for patients to know as well is that just because they have X, Y, Z condition doesn't make them unimportant. It actually makes them even more important, and there are opportunities all over the place. You had talked about your advisory board that you you run and bringing in patients just to know that that's possible and that you can shape what's coming. Um I'm sure there's there's dialogue around clinical trials and being a part being a part of those and knowing that you're helping to advance medicine. Uh I do want to go back though around some of the mistakes that have been made. And how do we best move patients uh to understand that those have been recognized and more importantly, uh done the done away with? We're fit we fix that um so that they are more comfortable with clinical trials. What are your thoughts there?

SPEAKER_00 40:41

Yeah, uh we are in desperate need of people to join clinical trials, and and we want everybody to know that there have been, we recognize that there historically uh have been very serious errors um uh in in the way that trials in the past were done. Um, and that because of that, our government, our regulatory agencies have really put in very rigorous regulations, expectations. The number of times our team goes and has conversations with the FDA, which we bring patients to as well, uh yes, uh is is incredible. Like in a way, I'm starting to get a little frustrated, like, gosh, can't we just go and do this? And and I, you know, okay, we gotta slow, go slow to go fast, uh, to make sure that everybody is safe uh as much as possible, that if something becomes you know, something becomes uh uh uh people become aware of something that isn't safe, that there is a definite expectation and how to make everyone aware of anything. Yes, uh yes, like very stringent expectations that are really it's drilled into all of us. Um and we are just so regulated, and and it can be feel a little bit cumbersome, but we know it's there for a purpose. Um and when people do go into a clinical trial, and I can speak from experience, I was in a clinical trial. Um it's a it's a big responsibility, and it takes time. Um but without people in the trials, we wouldn't have new medicine.

SPEAKER_03 42:56

Yeah, yeah, you know, and I think that a lot of the confusion is people think you either get the medication or you get nothing.

SPEAKER_00 43:05

Right. And that is not the case. It is not the case. I mean, I can only speak for the companies that I work for, but the number one thing is we don't want people to get sicker on our trial, right? So uh we work very uh very hard to make sure that at least the standard of care is provided. So when people are perhaps in the placebo group, though you may not know that, um, you're not being left with nothing. You're given something to address your symptoms, to address your mechanism of disease while they um run the study. Now, it may not be exactly the protocol of treatment that you were on prior to the study, but that every study is different. So you'd have to go in and learn about it. What medications are allowed, uh, what aren't allowed, and um know that everybody's looking at you, you get the best care. I mean, I had the best team of hematologists in the country, perhaps the world, when I was in the study, and they were all yes.

SPEAKER_03 44:21

That's a really important point for patients to recognize is that not only do you are you getting experts or getting access to some experts that maybe you wouldn't, um, but that you're at least getting the standard of care, typically, uh, depending on the trial, you're not getting nothing, you're not getting a good old sugar pill like they did back in the day. Um But really what I want to point out for folks is that if there's anyone that would be anti anything to do with industry, it probably would be you.

SPEAKER_00 44:52

Yes, yes, yeah, because when yeah, because when the the medication that we took was infected with two viruses, I also was impacted personally. My father was impacted, and all my friends, you know, 90% of the people with severe forms of hemophilia were infected. Um, there's only about uh 1% of us left. I'm one of the long-term survivors, and uh I had a lot of people mad at me when I moved into industry.

SPEAKER_03 45:25

I have people who are still mad at me, but I think it's important for people direct to know why you made the move.

SPEAKER_00 45:32

Yeah, I made the move because I really I wanted to be the mole, right? I wanted to be the one to tell on these people that might do this bad stuff again. And uh I said that I when I was doing my interview, I I really took the interview sort of nonchalantly because I thought they're never gonna hire me because I'm gonna tell them exactly what I think. And I did. And I said, Well, you know, if anything goes wrong, I'm gonna tell everyone, right? I said, I don't need the job that much. I can always get a job. Uh uh and they said, Well, that's why we want you. And that was a great answer. And then they allowed me to see every step of the manufacturing process, like from the tiny little cells to the bioreactors to the the uh filling the bottles and lyophilizing them in Germany. And and it I got to see just all of the things that are put in place to keep these products safe during the manufacturing process. You know, all of the steps that it takes to just do that is remarkable. So uh I also realized that as the president of the board I had uh of the of the organization, yeah, I had a really hard time getting movement with the industry partners to do what I thought would be helpful for our community. Uh I had much better luck influencing from within. So if somebody thought, I don't know, doing some kind of marketing event or educational event, they thought it was a great idea. And I realized because of my own personal experience, like that's not the best idea of with this community, you know. So we would talk about it and we'd say, you know, this particular way of doing this educational event is not gonna resonate. And I can tell you from personal experience and tell you from the community experience. And we could change things so that we would go out with something that was meaningful.

SPEAKER_03 47:53

And and we had prefaced it with all of the trouble that you ran into, and then the hiring, and then going through the hiring process and letting them know that you're gonna tell everyone.

SPEAKER_00 48:03

Right, right, yeah. So actually, that was for me to be hired into the the company that wanted me to do the patient engagement planning. And um uh what what I was able to do then, uh they said, that's why we want to hire you, is we know you're gonna do that. And I thought, well, that's pretty remarkable. And what happened was is exactly, you know, I felt like everybody has to look at us because there were other people from the community, a handful of us, that were working on it. And I said, Well, you have to look at us every day uh while we're working on things, so you can't really forget about us. And you know, we were able to be very honest when whoever it would be, there's all sorts of functions that try to put together really good education and programming for people to learn more about their condition. And uh, you know, some ideas are really good, and some ideas just don't make sense for that community. And so we were able to go in and influence from within and say, you know, for people living with a bleeding disorder, this isn't gonna make a lot of sense. You know, we may need to change that. Uh I think I told you that one company sent uh the summer camp that I was running at the time, a hundred frisbees to camp.

SPEAKER_02 49:33

Yeah, yeah.

SPEAKER_00 49:34

It's like, what are we gonna do with a hundred frisbees? Like maybe three or four, maybe, but a hundred frisbees? Like, if you had talked to me, I could have told you what we could have done, right?

SPEAKER_03 49:46

We needed, yes, yes, and got, you know, there's probably a lot more better use for that money than a hundred frisbees, uh, you know, for for the campers. But uh to be cognizant of your time, you know, how do you describe what you do to your voice?

SPEAKER_00 50:04

Uh I describe well, the way they describe it to other people is that my mom uh works for a company that uh makes medicine for people who are sick, and she helps people to learn how to talk to their doctors, and that's kind of right.

SPEAKER_03 50:26

Pretty good. Yeah, that's I like that. I like that. Yeah. My last question for you what would you tell your 20, say 18 or 20-year-old self?

SPEAKER_00 50:39

Oh, that was in the throes of finding out about all the bad stuff that was happening in our community, and um, I was so full of anger and how how dare somebody do that to us. Um there are just a few bad people out there, is what I've decided. Uh, I don't, I don't, I see a lot of people say online, you know, they want us to be sick so that they can sell medicine to us. And I really do not believe that. There's enough, there's enough sickness out in the world that we can go on and do something else with another illness, right?

SPEAKER_02 51:20

Exactly.

SPEAKER_00 51:21

Uh so I I believe that 99% of the people who work in industry are good people and who want to use their skills and their just brilliant minds to help us. And I what I'd want to say to her is that despite all of all of these burdens that you currently have and you're overwhelmed by are really your superpowers. And you just have to learn how to use them, and you can help other people to learn theirs.

SPEAKER_03 51:55

I love that. My my my favorite quote is from Carrie Ann Lima, uh, which is your mess is your message. Yes, that's so true. And it's it's what I have seen played out with every person I've spoken to on on our show here. It's always I got here, and if you look back at everything that's happened, they were built for this role. And it's so true.

SPEAKER_00 52:22

It it is so true, and and I I think some people don't believe me when I say this. Uh I mean I am doing pretty well. I'm fairly healthy right now, but uh it might be a different story if I was sick, sick sick, not able to do anything. Uh, but I wouldn't trade it, honestly. Uh I don't know what kind of person I would have been without it. Like, you know, I I know what's important. I feel like I know what's important. I don't get I don't get wrapped up in unimportant things, and uh I like who I am, and it's because of what I've had to go through.

SPEAKER_03 53:03

It's giving you that perspective. And I tell people all the time, yep, 18 years of chronic pain, but I wouldn't change a moment of it.

SPEAKER_00 53:10

Yeah.

SPEAKER_03 53:11

Because it's what now allows me to do what I do.

SPEAKER_00 53:14

And yeah, what you're doing is amazing. Amazing. I just love everything that you're doing. I read everything that you write, so keep on doing that great work.

SPEAKER_03 53:25

We will, we will. Well, Shelly, it was an absolute privilege today. I appreciate your time and thank you for all that you've done and continue to do for patience every day.

SPEAKER_00 53:35

Well, thank you. I appreciate it. Have a good rest of your day.

SPEAKER_03 53:38

You too.

SPEAKER_00 53:39

Okay.