Building The Noise with Shay Webb: EPISODE 012

SPEAKER_00 0:00

What it comes down to is your disease does not define you.

SPEAKER_01 0:04

Absolutely. It is a word, not a sentence.

SPEAKER_00 0:07

Oh, I love that. It is a word, not a sentence. So, so, so true. Because, you know, when we get that diagnosis, whatever it is, it feels like it it eats us. That it becomes who we are when that's not the case.

SPEAKER_01 0:24

Welcome to the Building the Noise Podcast.

SPEAKER_00 0:27

Hi, ladies and gentlemen. Welcome to the Building the Noise Podcast. My name is Matt Teresco, and with me today is an unbelievable patient advocate, but also brand new doctoral. Well, you completed your doctorate uh dissertation and defense. So PhD coming soon. Shay Webb. Shay, thank you so much for joining us today. Uh, I'm sure the work that you've been putting in at Campbell University has been difficult, but also very important for you. So before we go any further, what I'd love to understand and to give our audience a sense of is what do you do and why do you do what you do?

SPEAKER_01 1:08

Sure. So I'm Shay. I've had type 1 diabetes the last almost 20 years, and I've had rheumatoid arthritis the last approximately 10 years, and that really fueled me to pursue clinical research when I got to undergrad. So ultimately, I'm a clinical researcher by day, but I'm also a patient advocate, and I love focusing in on policy. So the best way to describe me is, you know, policy-focused scientist or researcher.

SPEAKER_00 1:42

That's unbelievable. I mean, we've been doing this research with our LOVA report for the last 12 years, and to watch the work done uh and not done ultimately by the nonprofit community on behalf of patients in policy has been difficult to observe. Um we went from 76% of disease state organizations doing policy work, and then when COVID hit, we dropped to 22%. And now as of this year, we're up to 46%. So we're getting some ground back, but what in your mind is so important about doing policy advocacy for patients?

SPEAKER_01 2:24

It's so important because it touches so many different things. You can't have policy advocacy and just talk about policy. You have to talk about the person, you have to talk about the research, the science that's behind it, and most importantly, the patient voices. Because whatever policy that we advocate for that gets passed or doesn't get passed, there's a patient voice behind it. So having that policy piece in there, it touches everything. You cannot get around anything that you are passionate about without talking about policy.

SPEAKER_00 2:59

Yeah. And it's it's you're speaking my language because when it comes to patient voices, that's what we're all about is ensuring that patients A know that they have a voice, and B, that we can get them to use it if they feel confident, comfortable, and educated. How do we get more patients to recognize that their voice is vitally important in this world we call healthcare?

SPEAKER_01 3:23

We first have to show them how to do it. You can't tell someone how vital their voice is if they don't know how to use their voice in ways that are effective and in the ways that would be vital for them. So, for example, there's a lot of people who, not to say it's not a big thing, but they probably don't understand that they are able to talk to their policymakers. They're able to arrange meetings with them to tell them what their concerns are, what their needs and wants may be. It might not all get addressed, you know, overnight, but this is something that's possible for any of our patients or any of our community members to do. So I think really establishing what it means to use that patient voice before just like putting the pressure on to go use their patient voice is really important because all of them have voices. And one thing that I've loved seeing, especially being an advocate, is everyone has so many different personalities and that they have different ways that they advocate. For me, I get adrenaline going to the hill or going to General Assembly and getting to share the perspective of the state. Some people are not like that, some people would rather do the research, work in the background, send a letter. And those are really effective ways. You're just not as vocal, but you're still being seen and you're still being heard, but you literally don't have to say anything.

SPEAKER_00 4:53

Yeah. And I know that you're part you're co-chair of the type 1 diabetes trends and needs working group for the was it, the North Carolina Diabetes Advocacy Council?

SPEAKER_01 5:02

Yes, the advisory council for the state of North Carolina.

SPEAKER_00 5:06

So tell us more about that work and how you learned to share your voice.

SPEAKER_01 5:12

Sure. So with the North Carolina Diabetes Advisory Council, we're all everything diabetes for the state of North Carolina. So we have different work groups focused on different areas. Mine specifically is type one, and we're working with a lot of the patient advocacy groups, healthcare providers, endocrinologists, the people who are boots on the ground, working with patients, working with the community to help improve diabetes across the state. And something that I got into, it was at an early age because when you're diagnosed with diabetes, it's I don't want to say sink or swim, but sometimes it can be sink or swim. So I was eight years old when I was diagnosed, and my mom exposed me to a lot of advocacy opportunities, and it all started with breakthrough T1D, which when I joined, it was JDRF, the Juvenile Diabetes Research Foundation. So going to these different events, being vocal about okay, what does it feel like to have diabetes at such a young age? And then as I got older, it wasn't just about having diabetes as a youth, it was having diabetes as a black youth, as a female. And now it's as a young adult black woman who has it, but still is underrepresented. So the more that I grew in my own disease and began to accept here are the statistics, here's what it looks like. It gave me fuel to say that this is what I don't want to see and what I want to change. And going along ever since. Yes.

SPEAKER_00 7:00

Eight years old. Oh how what were you experiencing at that time? And I understand that you went through some difficulty getting a diagnosis, as so many of us do, unfortunately. But I think in uh particularly as we think about uh type 1 diabetes in the African-American population, that's something that I had not heard many people talk about. Um, and I believe in our initial conversation you had laid out that people didn't believe that you could have type 1 diabetes.

SPEAKER_01 7:32

Yeah, it's true. One thing I can definitely say is I think I had the most issue with a diagnosis with my rheumatoid. But because I had such an aviga-heavy family, especially mom and mom, and because diabetes ran so rapidly in our family, they were able to catch it really early. So I started showing symptoms like going to the bathroom a lot, drinking hot water, I was tired all the time, I was losing weight, and my mom just caught on like this looks really familiar because to her it looked like migration was her grandfather. So the the plan was to go to the pediatrician to go to the doctor that week and to see what was going on, but they didn't want to see me until Thursday. But with diabetes, we know you cannot last that long. So she pushed and they were able to see me that Monday morning because she called on I think it was like a Sunday afternoon. They could tell me Monday morning, my blood sugar was almost 600. So we had to literally speed to the um hospital across town and go to the 10th floor, which was the pediatric floor. And honestly, if we if you don't have that understanding or if you don't have that advocacy and that support system, yeah, things can take a really hard turn. And then the other side of that is an issue that we have, especially when youth are diagnosed. The first day it's like getting information from a fire hose. So you're trying to digest something's wrong. And sometimes we're too young to digest that something's wrong, but your family is also experiencing that transition. Like, okay, we have to change gears.

SPEAKER_00 9:23

Yeah. Especially with Thanksgiving, two days away.

SPEAKER_01 9:26

Exactly. It was two weeks, so it was a little time.

SPEAKER_00 9:29

Oh, two weeks, okay.

SPEAKER_01 9:31

Still, it was definitely a time, but I think that time that we were there and just getting that information right when you walk in, very overwhelming. Yeah, you don't know, you know, you have diabetes, you don't know what type until maybe about mid through the week sometimes. At least it was during that time. So all of that happens, and then I'm discharged, and after like the week after, my mom teaches me everything about the disease and what I need to do. And thank you for mom. Literally, yeah. The thing is though, it was the social part that people don't always tell you about. And because I had type one, going back to your point, it was something unbeknownst to me, especially down here. Type one was known as type white. So I would go a lot of places and I would be the only black good black girl there with type one, or it would be a situation where it's the continuous correction for people to say, okay, I have diabetes. It's like, oh yeah, just you know, eat less sugar, exercise more. And it's like, no, I don't have that type, I have that type. Sure. So because we're in the black community, and it's a higher rate of type two, we're automatically categorized as having type two. And all I can say is I'm really glad that I wasn't diagnosed when I was older, because that categorization goes up a lot to say that there have been many times and many diagnoses, misdiagnoses, I should say, where people feel that they were aged out and they had type one, but they were diagnosed with type two because they're like, you're too old to have type one, or based on your background, quote unquote, you should have type two. It's not the case. And then they go years with uncontrolled diabetes because they have the wrong diagnosis.

SPEAKER_00 11:27

And the damage that can be done in that in that weight. Um, I mean, I don't have to tell you, but uh South Charleston, not Charleston, but Columbia, South Carolina has the highest rate of diabetic amputation in the country. And a lot of it is due to, again, that I don't want to skip over what you said with regards to type white, to be clear. Type white is the perception here in the South of type 1 diabetes, and that is not the case, right? It it is an equal opportunity attacker. Um and the perception and the mindset of the provider was that no, no, no, you're a type 2 diabetic. This should probably be diet and exercise, when in fact, no, your body's not making insulin at all.

SPEAKER_01 12:22

Right. I'm very fortunate that you know my provider did not go straight to type 2, especially because of my age. But being in the environment, I've seen that happen countless times to a lot of people. But that's why it's so important that you know we get the full background, we see what the biomarkers are, what everything looks like, because you know, one thing can change a whole situation.

SPEAKER_00 12:50

Yeah. And I think that brings into account, as you said before, why it's so important for a patient to share their voice and to speak up. So many times patients, you know, may look at their provider as a parental like figure where oh, I can't challenge them or I can't ask questions because you don't want to feel stupid. How did you yourself? Obviously, mom was a big help. How have you learned to overcome that and speak for yourself?

SPEAKER_01 13:21

It definitely took years of practice, and I'm glad I got practice at a young age because the more that I did it, and especially the more that I was involved on these type of levels, especially dealing with policy, it really made me put things into perspective to say, you know what, if I can do this for other patients, there's no reason why I cannot do this for myself. And it wasn't until I got into college that if I didn't feel that a provider was a good fit, I would just say, like, okay, I think I need to switch. And I would look for someone else until I found someone who was able to fit my needs. But that took a lot of practice and it'll took a lot of self-examination to see what exactly is it that I need. And I think a lot of times we go into situations when we really don't know what we need yet. So we don't know what to ask for. So something that for me is just one, having a really great support system and not only allies, but person that we're living with my condition, but also really doing that self-examination and asking what is going to make me the healthiest and the happiest, and who is able to give that to me. And is that here, or do I need to even look to another part of the state? Which had to do a few times, especially when I was younger, because this area in South Pete, North Carolina, didn't have any pediatric endocrinologist. And to this day, this has almost been 20 years later, we only have one. So wow.

SPEAKER_00 14:55

So you, as we were talking about with um an advocate earlier in the week, sometimes you gotta vote with your feet. May that be in in politics or that be in medicine. And you did what was right for you by going somewhere else.

SPEAKER_03 15:10

Yes, absolutely.

SPEAKER_00 15:12

How did you find those providers for yourself? What did that work look like?

SPEAKER_01 15:18

A lot of trial and error, and then also just asking around and also remembering that especially with these patient advocacy groups that we're working in, a lot of times we're working with these providers, we just see them in a different light. So, for example, whether that's breakthrough T1D or um the DAC, we have providers that are there. When I meet with them, they're more like council members. But lo and behold, you know, after everything is done, they're still a healthcare provider. So using those as a resource instead of just kind of doing your job and getting off the phone, it's really helpful.

SPEAKER_00 16:01

I applaud you for not just doing the work for you, but then for turning around and doing that same work for others. How did you get into advocacy itself and realize that your voice can be used for more?

SPEAKER_01 16:17

Honestly, I really don't think I even noticed it was advocacy when I started.

SPEAKER_00 16:21

Of course.

SPEAKER_01 16:23

I was just someone who enjoyed writing. And when I was younger, I loved speech writing because I enjoyed doing debate, I enjoyed like learning about civic engagements and policy. And then I just thought, like, okay, I'm doing the research part of this stuff, but is there any connection to patient advocacy groups or policy with clinical research? And the more I dug into it, the more that I just found more and more resources. But if I really go back to when advocacy started, I have to say it started in the classroom when I was eight years old, because my mom would give me a script and it was how to talk to my teachers and what to tell them my disease was, what devices I used, what to look out for in case an emergency happened, or if I started like passing out, or you know, started zoning out in class, what was really going on. And then the more I did that, I remember when I got to middle school, there was actually another person with diabetes. And it was the first time I had been in an area or a school where they were I was not the only you weren't the only one, yeah, right, but also not only being the only one, but there were two other black girls who had it, which was super exciting to me. Yes, and it's like we just kind of flung together. One was a grade ahead of me, and one was a grade under me. Sure. And I remember, especially for the one that was under me, she would come in, but how I was prepped and like getting everything done, it was the complete opposite. So I found myself like coming to the nurse's advocating for her, pretty much like, hey, did you do this today? Did you do this? And of course, we're in middle school, so she's like sick of it already. Like, yes, I did it. Okay. Thanks for it. It was like a simply relationship anyway, so it was great.

SPEAKER_00 18:28

That's fantastic. Now, you've been doing individual and independent patient advocacy, you've been doing policy work, and you also find yourself in industry. Um tell me more about your work in the industry, and let's be honest and and and frank here. The industry has been doing advocacy for a long time. They've been doing issues and policy advocacy, they've been doing disease state work in a non-branded fashion. But sometimes and most of the time, they still have no idea what they're doing.

SPEAKER_01 19:00

Yeah.

SPEAKER_00 19:02

What have you seen, and what's been your experience in advocacy in the industry?

SPEAKER_01 19:06

One thing I've noticed, and I will start off like sandwich, is that I'm glad that it's at least being done and that it's being addressed and that there are resources being put to it. Where I see improvements could be made, is that a lot of times there's not enough patient interaction. And what I'm saying is there are those of us who have the disease, who have the education, who have the interest to support and to advocate, but we're not always in these rooms. We're not holding these roles. So what's being produced is by someone who may not have any direct um interaction with the disease or the ailment at hand. And it's not always hitting everything on the head that we need it to. So, what I would say for industry, from what I've seen, is that including the patient externally is one piece, but we also need to look to include them internally, whether that be through our EVRGs or different acronym?

SPEAKER_00 20:19

I'm sorry.

SPEAKER_01 20:20

Employee resource groups. So used to acronyms.

SPEAKER_00 20:25

No worries. Yeah, that's the industry for you, right? Is acronym together.

SPEAKER_01 20:28

Oh my goodness, so many acronyms. So just finding ways to make sure we are tapping the resources that are at our fingertips and are actually within our reach within our companies, I think we will see a load of difference.

SPEAKER_00 20:44

And let's go a little bit deeper because I'm I'm sure there are plenty of listeners who don't even know that pharma and biotech companies do any work outside of their products. Right. So it's one thing to hear from me, but to hear from you, what type of work a pharma or biotech company actually does to help patients.

SPEAKER_01 21:07

Sure. So a lot of times what we don't know, and especially what when we're coming into the advocacy space, a lot of times we think that just means going to the hill, talking to policymakers, talking to your doctors. There are patient advocacy roles within the pharma and the drug development spaces. And what these do is they make sure that you're able to get the medications that you need, the devices that you need. And they actually have patient advocacy hotlines to help you advocate for yourself. Maybe it's to a healthcare provider. But then also, if you are experiencing insecurity or you are experiencing a life change that you know you didn't expect, and you need to make sure you get your ultra expensive medication. They're there to help you. So another part of the advocacy piece is that the provider piece, providing information that people know where to go and know how to get these resources, but also being able to provide those resources. And that's what a lot of the um those of us who are on the pharma side and focused on that area, that's what we provide to people. And then also just partnerships with the different patient advocacy groups. So sometimes it may not be direct consumer advocacy, but we're giving the resources to the advocacy groups to make sure patients are taken care of.

SPEAKER_00 22:43

As we try to tell industry all the time, listen, you may not have the trust of the patient community, but that doesn't mean you stop, right? There are plenty of organizations out there that do have the trust of the patient community, as you referenced the disease state nonprofits, the uh beyond type ones, the uh as you referenced, which was Juvenile Diabetes Foundation, they have the trust of the patients, but they don't oftentimes have the funds or or the knowledge, sometimes, especially in policy advocacy, to do some of the things that patients need. And that's where industry can really step in and help.

SPEAKER_01 23:22

Absolutely. I think that not only through funding, but then also through partnership. So encourage and engage with your employees to allow them to advocate, to be with the patients, to not just go when we need something, you know, like we've seen in past events that have not been so far away.

SPEAKER_00 23:46

Sure.

SPEAKER_01 23:47

Actually engage with them on Were You Were you there? Yeah. No, not at the that way, unfortunately. I was supposed I think I was supposed to be, but I I was not there, unfortunately.

SPEAKER_00 24:04

And and for those of you who are wondering, what is the secret conversation that we're having? Uh ultimately I was an attendee at the um American Diabetes Association's annual conference. And it's a wonderful conference that's put on that does a lot of educating of both the industry itself and of patients on all that's taking place in innovation and new things that are coming, but also the day-to-day lives of patients with diabetes. And unfortunately, there was a uh shenanigan, let's call it that, that took place in which a couple of the um key scientists for the ADA were kicked out of their own meeting because of a political stance that they took during the meeting in which uh someone from the CDC or or CMS was in attendance to speak, and all that they were doing was was handing out a flyer um calling attention to an article that they had published in the ADA's own magazine. So this was something that had been approved and published by the ADA. They were handing that out at that time. The ADA knew about this weeks in advance, and they still chose to have those individuals arrested and removed from the meeting. It caused a massive uproar, still is having fallout uh as we speak. Um, but nonetheless, let's not detract from the importance of a meeting like that in an organization like the ADA, in which it has done such amazing work for the patient population as a whole, especially those with diabetes, both type 1, type 2, and now moving into just the obesity space as well. Um, but that's where obviously we had a number of folks from industry in attendance. Um, as you think back in the work that you've done in industry, where do you see organizations like that and their opportunities to engage with patients uh when, as I referenced, you might not have the trust of the community that you're going into?

SPEAKER_01 26:08

Right. I think from what I've seen, especially with the ADA, because I've actually been able to participate even when I was working on that side of things, is that they actually have councils and they have boards for persons with diabetes. So being able to be there and to give your perspective of what it's like and what you would like to see research on and what you think there needs to be a focus on, and actually give them to leadership directly, I think those are super helpful because not only are you sharing information with one organization, we're able to share information across the industry as a whole. And the sharing of information is gonna create diversity of thought, and diversity of thought is gonna create innovation.

SPEAKER_02 26:58

Yes.

SPEAKER_01 26:59

And that's what's going to help us get to the next area where we need in disease advancement and um therapy advancement to make things a lot better for patients.

SPEAKER_00 27:10

Yeah. Could not agree more. As you referenced, and this is something that uh if I go all the way back to one of our first episodes with Brandon Moxata out of the HIV AIDS community, nothing without nothing about us without us. Right? And we hear so many patient communities trying to get those same words out, but I think it's so simply and eloquently and and impactfully put. That's really the standard. That that should be the standard. But uh to put a little bit of pressure on the industry, it's something that if you're in advocacy, you recognize. If you've never been in advocacy, the common uh common phrase is if you've never been in advocacy, there's no amount of slides that will tell you its impact. If you've been in advocacy, none are necessary. Right? So with that comes changes in the uh in the roles and the size of teams and the budgeting. Um, what do you feel that industry executives need to really understand about that advocacy function?

SPEAKER_01 28:19

Honestly, I think that advocacy is not something that is always taught, it is something that's felt. And you have to really have that heart to advocate effectively because a lot of times, you know, if we have our degrees, that's super helpful. But you cannot get a degree in diabetes, you can't get a degree in rheumatoid arthritis. I mean, you can, but it won't be the patient degree.

SPEAKER_02 28:48

Exactly.

SPEAKER_01 28:51

So to be able to advocate from personal experience, from lived experience, whether it's as an ally or a patient, that's something that's not made onto slides, and it's not something that's taught in a handbook or textbook. And I think the more communication that we have, and you know, rather than just having a store of something that we've heard, but actually having those people there at the table to explain the importance of this, that's where it lies. Rather than we can take trainings all day, and it'll be great. What would be even better is to take a training, but then have a panel so colleagues are who are affected. How does this affect their workday? How can we support them as employers, as leadership, even as coworkers? Because that changes the the conversation. Not only are you showing support, but now most likely you're gonna be engaged even more to say, wait a minute, my colleague is affected by this. I want to learn more about this. I'm able to advocate on a different level because I know so much more than I would if I was just given a slide deck.

SPEAKER_00 30:04

Yes. Yep. And that's going back to as you referenced in policy too. There's one way you can go about trying to explain what a patient feels or tell stories that you've heard, but there's nothing that replaces that patient giving their own testimony, their own story.

SPEAKER_01 30:22

If anything, I think it's the very opposite. I think it's when patients have their stories and they're able to add in the data, that is something that really sticks heavily. I can be completely relatable on that because I know one of my best approaches that I always try to adhere to when I'm advocating policy is I tell my story, but then I also tie in to put in perspective, if we're thinking about one state, this is costing us $406 billion or million dollars. Wow.

SPEAKER_03 30:59

Yeah.

SPEAKER_01 31:00

Just take that amount of money and think about everything else we could be doing if we were healthy. And here's how you can help us do the things that we need to so that we remain healthy and that we're able to live high quality of life lives as patients.

SPEAKER_00 31:20

Yes. Yep. And I mean, if you think about the amount of money that's spent, for example, on uh commercials, right, in the pharmaceutical space. Just imagine if we took that uh and and based off the market research that I run, if you were to take the 18% of the average budget that is spent on commercials, and take the patient advocacy budget, which is usually about 1.3 to 1.6% of an annual budget, and just flip the two, imagine the differences that we'd see.

SPEAKER_01 31:55

Oh, it would be it would be phenomenal.

SPEAKER_00 31:58

I mean it would be life-changing for patients.

SPEAKER_01 32:01

Absolutely. And most importantly, with that, it would give an opportunity for the patient to actually feel seen. Because a lot of times, even with pharma and different areas of healthcare, they're starting to do narratives, they're starting to do patient groups where they come and they actually talk about their experiences. But the flip side of that that we're running into is that not everyone knows it's available. They don't know how to even get involved. They don't know that you can go and talk about your life with diabetes, two diabetes advocacy companies, or diabetes pharma companies, or talk about your experience living as a student with a phepatoid or a student athlete and how that affects everything. So I think just letting them know we want to hear from you and to show that we want to hear from you, that's really what's going to make things different.

SPEAKER_00 33:04

What's interesting is I I remember an anecdote, and this is not to fly in the face of what I said about uh you know having the patients tell their story, but I I just love this story uh in the uh rheumatoid arthritis space, in which a company was bringing a product to market and it was going to be an auto-injectable pen, right? And they opted to bring patients in at the 11th hour um to just get some feedback. Not even the development phase, not in early research to try to figure out what patients needed or figure out what their lives are like. No, no, no. Feedback on the naming and the colors of the pens and those sorts of things. They were launching this product in in about a couple of weeks, and when they brought this group together, it was then and then only that they realized that the amount of pressure it took to activate the pen was too much for patients for patients with rheumatoid arthritis. And just think about the billions of dollars that were wasted because they didn't engage patients early in that process. Right? And and it's it sounds laughable, but it's almost industry standard at this point. I would say that the majority of companies that I work with, if you leave the advocacy function and you go to marketing, or you go to market access, or you go to policy, they may not even be aware that there is an advocacy team.

SPEAKER_01 34:40

Yes. I've seen that a lot.

SPEAKER_00 34:43

And and see, and a lot of it's due to the fact that the legal folks that be within those companies try to keep advocacy in a silo. Right? There's this weird way that we treat advocacy because you're dealing with patients and we can't have you talk about our products, which you're not, right? But why is it that we can't share the patient's story outside of a feel good Friday? It's so frustrating.

SPEAKER_01 35:12

Just like you were saying, it's also a thing of morale as well. If we're looking at employees, all day that you're working in research or working behind the scenes of different studies, of different innovations, it's very easy to forget why I am here. And the real reason we're all here is because of the patient. So to have that patient voice, whether that be written form, whether that be audio, whatever that looks like, it's impactful because that's the reminder. This is what we're working for. I mean, of course, we're getting paid, we're getting everything, we're getting visibility, but it's all going to be affecting someone's life. And I just think of it from a perspective because I didn't really get to work on the diabetes side within industry, but the therapeutic area that I worked in, this is affecting someone's family. And I would just think it's my own experience to say, oh my goodness, what if one of the diabetes companies stopped making formulas for insulin? I am in trouble. And I just have that perspective and think of it for what I'm working on. Yeah. You know what, someone else is feeling this way for their parent, for their child, for whoever it is.

SPEAKER_00 36:35

And I and I would add, uh, you bring up a great point, which is the care partners of the patient, right? And how important it is to make sure that voice is at the table too. Tell us a little bit about maybe where you are had the opportunity to work both with patients, but maybe even the care partners as well.

SPEAKER_01 36:53

Sure. So I've had the opportunity to do that on a lot of different scales. One of my first ones was when I was on campus at UNCW, University of North Carolina, Wilmington. We started a chapter, go Seahawks. We started a chapter of the diabetes. Um, at the time it was the College Diabetes Network. Now it's the Diabetes Link, but our name for our club was Dubs for Diabetes, hence play on UNCW and Diabetes. And what we did is we opened it to students who were living with diabetes, especially type one, but we also expanded it to the allies. So we started reaching out to the health science organizations, to the nursing departments, clinical research, and all these other areas. And then we expanded it, you know, beyond that. So then significant others started coming. Parents started coming, our professors who were living with it or had a spouse or a child or a parent living with it, they started coming. So what it ended up being was a huge support group, not only for patients, but for allies. And they could hear how we think of different perspectives. Perfect example. I remember there was one time, and I'm glad she asked me this, but I had a friend, well, we were advocating, and she became a friend, and they she was telling me about her significant other and how he was the one who had diabetes. However, she couldn't understand his annoyance when she was just trying to help in different ways. And I was able to give a perspective. I'm like, okay, well, here is how it looks for a person with diabetes, and here's how it feels different compared to a person who's healthy. So working with allies and caregivers and having that literal allyship is all about conversation and seeing not only how does it feel from our perspective, but how can we support you? And one of those biggest things for me is making sure allies know who their allies are. So who are the other caregivers in the group? How can you lean on one another? And how can you just get a break for I mean, you cannot get the mental break, especially I've seen it with you know parents, and I have not been there yet. I cannot relate. I am not a parent.

SPEAKER_03 39:21

Yep.

SPEAKER_01 39:22

But one thing I do know, once you have a chronically ill kid, they're always going to be on your mind. So I try to make it. So I'm like, you know, I'm I'm not doing anything crazy.

SPEAKER_03 39:34

Yeah.

SPEAKER_01 39:35

So even if you do or you don't, it's always going to be in the mind of a caregiver. So also giving this.

SPEAKER_00 39:42

That's that's fantastic. And and yes, the the mental break, or at least as you said even earlier, with regards to yourself as a patient, to know that you're not the only one. Right? It's it's such a uh even for me when when I was going through you know 18 years of opiates and feeling like I was at the end and there was no one that can there be that there's even possible to help me, to know that I wasn't the only one meant the world to me. And and to find those those people, it shouldn't be so difficult, but sometimes it is.

SPEAKER_01 40:15

Um that is what we have to remember is you are not always going to find your people or support group in the doctor's office. It's not gonna be in a patient advocacy group sometimes. It might not even be in a classroom, but it can be in so many other places that you probably wouldn't think of. Perfect example. I call her my diabetesie, but we were actually doing, lo and behold, we were doing a patient advocacy group event when we were in high school, and that's how we met. But when we went to college, we both did Greek life, and that's something that made us closer. So sometimes it's looking in different organizations that actually have nothing to do with your disease or advocacy or anything in the mix, and finding your support and finding people who can relate to you who may not always be talking about it, but yeah, you know, you have something in common.

SPEAKER_00 41:16

What I love so much about what you're saying, and really what it comes down to is your disease does not define you.

SPEAKER_01 41:23

Absolutely, it is a word, not a sentence.

SPEAKER_00 41:26

Oh, I love that. It is a word, not a sentence. So, so, so true. Because you know, when we get that diagnosis, whatever it is, it feels like it it eats us, that it becomes who we are when that's not the case.

SPEAKER_01 41:43

Absolutely, and there are so many things a lot of times we don't even think about it when we're diagnosed, but there are good things that can come out of it. I always say, like the friends I have now, I probably would not be talking to you all if I did not have this disease. And that, you know, we don't like each other, but it's a thing we probably wouldn't be in the same spaces. We wouldn't have each other. Or even finding your passion, I wouldn't probably think about diabetes as something that I'm passionate about if I hadn't been diagnosed so long and seeing the evolution and seeing those around me affected, not only, you know, my friends who have it or my family who has it, but then also the caregivers who have it. Because I mean, I think my mom's perspective is completely different than my perspective. Yes, than a different patient's especially or then a different caregivers. One reason being is because she was a single mom and she was racing. So not only do you have to deal with the disease itself, but then you have to deal with the statistics, you have to deal with the stigma, you have to deal with making sure they are just a kid. So that's a lot that goes into it. And I think that's another thing, like you were saying, is the disease isn't just us, especially when you're diagnosed younger. We have to remember we are still kids.

SPEAKER_03 43:08

You're still kids, yeah.

SPEAKER_01 43:09

Even if you're diagnosed in your 20s, like listen, you're still going to have fun. Like you're still a young adult. Exactly. There's still things for you to do. Like, your life isn't gonna end there. Like the world's gonna keep on turning. You can turn with it, or you know, you can just let it pass.

SPEAKER_00 43:27

That's an unbelievable statement. You know, it's it brings back for me a question I had for you, which was how did you find the advocacy organizations that may have been out there to support you?

SPEAKER_01 43:40

Honestly, I'm glad I started early because I feel like it's almost like a running joke, but JDRF or Breakthrough C1D now, it was everyone's launch pad into advocacy, into getting things done. But for me, I just came to a day when I was in undergrad, I was about To graduate and I said, I want to get into advocacy. So I went onto Google and I just typed in diabetes patient advocacy groups. And I went to almost every link and signed up. And I said, I don't know what this means, I don't know what's going to stick, but I will see what happens. And the first one that came back was the diabetes patient advocacy council. And it's funny because it was almost like a perfect storm because a few months later, COVID hit. And when COVID hit, that was completely different because my worry was that okay, I have diabetes, I'm also trying to do school, I'm trying to work an intern, I have all this stuff on my plate. I can't just pick up, drop everything, pick up and go to DC or Raleigh or wherever our comrades is or wherever we're advocating because I have so much on my plate. But because of COVID, we were able to do everything virtually for that year. So that's how I got to start practicing. Well, I was actually doing it, but I feel like it was practicing before I went in person, which I eventually did. And I was able, you know, to lead my state. And it was just so exciting because you see how everyone is thinking about things, how everyone is pretty much on the same playing field to say we're here to advocate for this. These are our three or four asks, and that we're here to share our stories. Yeah. And being able to do that with people who I've grown to work really closely with, it was one of the most exciting experiences I've ever had.

SPEAKER_00 45:39

I love it. I love it. So, Shay, thus far, you you've told us a lot about your past about tackling type 1 diabetes and rheumatoid arthritis. And you've done so with grace, and the passion has just built to ensure that you're not leaving anyone behind, that you're able to pull your community up and you continue to do that work as the co-chair of the T1D Trends and Needs working group there in North Carolina, part of the North Carolina Diabetes Advisory Council. Uh, you just finished your PhD, right? Which is an unbelievable thing. I'm sure that's a breath of fresh air for you. Uh, I know you got to get till what, August, if I'm not mistaken, right?

SPEAKER_01 46:15

Yes, yes. Officially August, I will have my Doctor of Health Science degree.

SPEAKER_00 46:20

There we go.

SPEAKER_01 46:21

I've focused in on interprofessional education for this reason exactly.

SPEAKER_00 46:26

So you are lined up perfectly for all of our listeners from industry. I could not recommend a better advocate who not only understands the power of patient advocacy, but can do the work and knows how the work needs to be done and can represent that back to leadership, which is a shortcoming, I would say, for most organizations that I've worked with over the last 12 years. So, Shay, if if you uh are looking at the industry right now, what are some of your must-haves as you think about the companies that you're looking at joining today?

SPEAKER_01 47:02

Definitely. You must have a desire to improve patient life. That is the foundation of everything that we are looking at. Everything else is important, but the patient is the end game. And what does that look like? That looks like improving that communication that makes looks like thinking outside of the box. How are we representing the multi-cultured, the understood patients, those who are not seen in the data? How are we getting their perspectives? How are we getting the data that we need from their end so that we can produce products that we are able to give them to help improve their health?

SPEAKER_00 47:44

Because if we can actually say it will work for them, right?

SPEAKER_01 47:48

Yes, yes, yes, because if we look historically, there are not there's not a lot of data on underrepresented communities.

SPEAKER_00 47:56

Let's be honest, Shay. Let's be honest.

SPEAKER_01 48:03

Absolutely.

unknown 48:04

Right?

SPEAKER_00 48:05

And that that's not general population.

SPEAKER_01 48:07

No, not at all. Not at all. When it comes to women, when it comes to people of color, especially when it comes to African Americans, we are historically underrepresented.

SPEAKER_03 48:17

Yes.

SPEAKER_01 48:17

Especially if we're looking at pregnant women.

SPEAKER_03 48:19

Yeah.

SPEAKER_01 48:20

That is super important.

SPEAKER_00 48:22

For example, which is why we have the issues that we have, right? With African American women and pregnancy and still leading, I would say almost if you're in the United States, maternal health should not be a problem. But it still is a major problem for African American women, correct?

SPEAKER_01 48:39

It is huge. And it's to the point I actually have a really good friend, and she did her capstone on maternal health because she had a really bad experience. And it's not to say like it's socioeconomic or education, it's across the board, and it affects everyone, especially the black community. Black women have such a higher chance of having some type of complication or even just death from childbirth. And that shouldn't be the case.

SPEAKER_00 49:13

Not in 2026.

SPEAKER_01 49:15

Too much technology in 2026.

SPEAKER_00 49:18

Yeah. So as you look towards your future, you know, you have an unbelievable amount of experience, you've got some great education, and you're still doing the work of advocacy on a day-to-day basis and policy, which is such a, in my opinion, a rare breed. Because there are so many folks that I work with in the industry that know advocacy but don't know policy, or know policy, but don't know advocacy. And to do both well, you have to understand both, right? So as you look towards the industry, obviously it's not just those that say they want to do what's right for the patient, it's those that actually do, right? I think every company will say we are patient-centric. Of course you are, to an extent, right? And there's a difference. Shoshana Lipson, who's a patient advocate in the migraine space in chronic pain world, has said, listen, you're patient-centric when a patient says you are. Not when you say you are, right?

unknown 50:19

Exactly.

SPEAKER_00 50:20

So if you were to land at a company tomorrow, what are some of the tactics that you think you need to establish very quickly to make sure that that is a function that is going to have lasting impact?

SPEAKER_01 50:31

I think we need to establish talk spaces and safe spaces within the communities. We've done that somewhat within our own communities, within the industry, where we're able to talk as employees, but we need to take that energy and we need to share it with the patients. We need to go out into the different, you know, non-advocacy groups. If we're looking at the Black community, we need to be connecting with the divine nine and the black Greeks. We need to be connecting with the churches, we need to be connecting with the different HBO CUs and educational institutions. Because if we continue to go in the same traditional ways, we're going to get the same results. So I think that we need to be creative and give them a place that they will have enjoy coming to and that they will feel seen. They will feel like we as the industry, we're not just a resource, but we're actually a part of the community.

SPEAKER_00 51:29

So and we're not we're not gonna show up when we need something.

SPEAKER_01 51:33

Exactly. Exactly. If we're already there, yeah, well, we're not coming just because we want something, because we're we've been here.

SPEAKER_00 51:42

That's right.

SPEAKER_01 51:43

It's almost like, you know, coming home. It's not like you're going to your friend's house and saying, Hey, could I get dinner? You're coming home. So of course you're gonna get dinner. Like you're already here. So that's that's what we really need. We need to establish those hubs within the community. And my biggest thing that I think is very important is we need to bring the resources to the community rather than send the community to the resources. I think it was the State Baptist Convention down here in Wilmington. And uh, one of the things they did is they incorporated a portion about clinical trials and organ donation within the during the worship service.

SPEAKER_00 52:33

Brilliant.

SPEAKER_01 52:34

These are the times that we need to do that when we are engaged. Now, of course, there's a time and place for everything, yeah, but send someone when we you have our attention. We want to know the options that are open for us.

SPEAKER_03 52:49

Yeah.

SPEAKER_01 52:50

But if we're saying, like, hey, there's a flyer in the lobby, go pick it up, and you can go to such and such place, that's not always the way to do it.

SPEAKER_03 52:58

Yeah.

SPEAKER_01 52:59

So I would definitely bring in a new and a fresh perspective of how we can attract more data, but let me fix that, more patients, because that is the another issue that we see within the patient community. We're seen as data. We're seen as numbers. And uh I honestly, my capstone was named Beyond Glucose. I'm actually looking at it, but I almost named it more than numbers because we are more than so I think making sure that we are articulating things in the way that patients understand, but then also acknowledging who are the people on our teams, whether that's in the patient advocacy team, whether that's in operations, how can they connect with this community? And it's not to say, you know, we're we're cherry-picking, but I would more so talk to someone who can connect with me rather than someone random, and they don't always understand the culture of the community or how we do things and they look uncomfortable, and then that's a whole different situation we have to fix.

SPEAKER_00 54:07

When you have to spend more time explaining yourself than actually talking about the problem, there's not a benefit there. Not at all. And I would say, in my experience and working with industry, uh, like you talked about, coming home, industry is never set up home within communities of color or within minority communities in general. And that's why it's oftentimes such a battle to get people to see the value of clinical research or to be part of a clinical trial. You know, it's it's one thing to say, listen, at some point a clinical trial is considered standard of care, especially in the oncology space. It's another to get people to actually believe it when their community has been used and abused in the clinical research space. So it takes showing up and living there and doing that hard work and having those difficult conversations.

unknown 55:06

Absolutely.

SPEAKER_01 55:07

One thing that I always say, and it's been my mantra since college, in order to represent patients on the patient end, we have to start at the student end. So when we're looking at our STEM careers, we're looking at clinical research majors, we really need to pack in those classrooms, especially if we're talking about the curriculum and what they're being taught. Cultural competency is absolutely crucial. You have to explain that and not just in a chapter or two, there should be some way to actually practice that within the community and it be a requirement. Because once we have students who then become professionals and increase professional representation, then of course we can expect patient representation because they see themselves working in it and they have that trust that my community is not going to harm me.

SPEAKER_00 56:11

Yes. See, and Shay, I want to leave it there because that is such a pivotal statement. What I love about you is that you're not afraid to think outside the box. You're not afraid to see the big picture and see where we've been, but where we can go if we're willing to do the work. And you've done it, you've proven it, you've shown it time and time again that it can be done. It can be done exceptionally well. Um, as we a call yesterday with someone who had said, I want everyone to have access. No, I don't want everyone to have access. I want everyone to have excellent access to excellent care. Right? That should be the standard. And what I'm hearing from you is exactly the same, is setting those standards, but also doing that hard work of let's not wait until they're adults. Let's go into the curriculum. Let's ensure that we are supporting individuals in their own journeys to ensure that they can support their communities.

SPEAKER_01 57:11

Exactly. We're not looking at equality, we are looking at equity.

SPEAKER_02 57:15

Yes.

SPEAKER_01 57:16

Because it cannot have patient advocacy without patient equity, because not every patient is going to need the same thing. For example, if you give a patient a course on patient advocacy, completely help them. You give me the course, I probably teach it. Maybe.

SPEAKER_00 57:31

That's right. That's right. Yeah. See, and and that that's you know, in the industry, we've seen so many people run away from diversity and health equity with a new administration. It's not like it's been fixed.

SPEAKER_03 57:44

Yep.

SPEAKER_00 57:45

By any means, right? And I don't care if you gotta rename it. We as an organization renamed it. We continue to do the work. Okay, so we can't say D E I. All right, we've re we renamed it Rise, which is reach, include, support, and educate. Because at the end of the day, it's exactly the same thing that we were doing under a different name. Right? We have to have diverse voices and and faces in the room to share their stories and feedback to know how we all get better.

SPEAKER_01 58:16

Exactly if we don't have diversity of thought, we have inclusion of thought, which we want inclusion, but we have stagnation of ideas.

SPEAKER_00 58:28

Amen. Amen. Stagnation of ideas. I love it. Shay, this is why I added you to the board for the uh advocate bridge to ensure that we do not have stagnation of ideas. And yes, people, I saw her light and the value that she could add and jumped all over it. So if you are part of an pharmaceutical organization or biotech company that's looking to add a bright light into your advocacy and true clinical excellence, look no further than Shay. Shay, my last question for you before I let you go. If you could go back not too long ago, but if you could go back to well, let's let's flip it up. I usually ask when they're 20. But if if we could go back to when you were 10 years old, two years out after being diagnosed, what would you have told that little girl at that point?

SPEAKER_01 59:25

Wow. Honestly, this is going to sound very interesting, but I will definitely tell her to keep her head up. And it's funny because I probably would have said, you know, listen to mommy because the things that my mom said did come to pass. Like, damn every time. I know every time they it's like magic or something.

SPEAKER_00 59:50

But um well, hey, you said you don't have kids yet, but you got good education for when you do.

SPEAKER_01 59:56

No, oh my gosh. It's crazy when what she was talking about with diabetes technology, when it came to the advancements, when it came to seeing more people that look like me, she's like, they're going to come, just give the time. And I did, and I just look at now, and I would have never believed this when I was eight years old, or even just like the degrees that I've done, the areas that I've done in them, I would have never believed it because I was a person, I didn't think I liked science, and it was because I was wasn't around people who really explained the death of what that looked like. And I'm like, Well, I like research and I like you know health and nutrition. I didn't understand that that was science until I got to high school, and it was actually my NAACP president. She's like, Oh, well, that's STEM, so you're gonna compete here. And I'm like, I didn't know that. So I was doing it the entire time, didn't know it. Yeah, but on the flip side of that is that I would definitely honestly, there's so many things I probably would tell her because there are so many things coming down the pipeline. Like one day you're not going to have to pick up an insulin pen or a syringe, you're gonna do this from your phone. And yes, you will get an iPhone, you will very badly, but you will get that, and then also, you know, one thing I always say, especially when it comes to advocacy, behind every successful and passionate advocate was once that kid or that teenager who wanted to rebel out against diabetes who was completely burned out, and like it was just spiraling. And I would definitely embrace that and learn it. Be safe, but understand that the experience you're going through now is going to be a testimony for someone in 10 years, in five years, in 20 years. Okay, we haven't gotten to the 20 yet, we're almost there. But I think there's a reason why you're going through it, and I would really encourage her to write down everything she is feeling so she could show it to another 10-year-old in 10 years and let her understand like I understand, understood, understand what you're going through because I was there and I've seen it. And there are so many people rooting for you, and she knew that, but you know, to the death that I see it now, it's just completely different. So I will definitely proud of her.

SPEAKER_00 1:02:39

Oh, that's there you go. I'm proud of I'm proud of you too, Shay. I really am. The the work that you've done, the fight that you have gone through from eight years old on in a society that didn't want to see you as a type two, a type one diabetic, wanted to isolate you as type two, but then also the fight that you are are mounting on behalf of patients all over this country, especially in North Carolina, it's a testament to the strength that your parents instilled in you, your mom, um and and the education that she pushed on you, but also your willingness to listen and really truly embrace listening, not just listen to hear what you can respond with.

SPEAKER_01 1:03:22

Exactly. I always tell people I feel like one, I couldn't have gotten here without the grace of God.

SPEAKER_03 1:03:29

Yes.

SPEAKER_01 1:03:30

No way possible. Like Jesus Christ is my savior. Yeah, but I feel like this is another version of ministry that beyond the four walls, and it's something I would have never imagined doing. I would have never seen myself as an advocate of this magnitude when I was younger, to the point where it's like, oh yeah, you do advocacy, and I'm like, how do you know what I do? And one, how do you know my name? And how do you find it?

SPEAKER_00 1:03:57

Yep. I I'm a big believer that God puts people in our lives for a reason. And I know He put us together because we are on the same mission. We're creating disciples just in a different way, and we are ensuring that everyone has the best life that they can. Uh the other statement I live my life on is your mess becomes your message.

SPEAKER_01 1:04:19

Yes.

SPEAKER_00 1:04:21

And it's so true for me, it's true for you, and now we are using those messages to empower others, to change companies, to shape the way that business gets done, but most importantly, ensure that that patient voice is respected and utilized.

SPEAKER_01 1:04:38

Exactly. I mean, when it comes to diagnosis, I always live by every curse in bad situation has a silver lining, which is insane, but there is always something that's going to come out of it.

SPEAKER_00 1:04:50

That's right. He will always use it for his glory, right?

SPEAKER_01 1:04:54

Amen.

SPEAKER_00 1:04:54

That's right. Well, Jay, it's been an absolute privilege. I appreciate your time today. And we'll continue to keep the word out, and you'll see all of the wonderful clips of this episode. Um, so please share it with your your friends and followers, and we look forward to keeping in touch and continuing to build some amazing tools for patients.

SPEAKER_01 1:05:15

Sounds good. Thank you for having me, Matt.

SPEAKER_00 1:05:18

Thank you.