Tiffany, why don't we start with you? can you talk to us a little about what is health equity in dermatology, as especially relates to-- I mean, obviously I focus a lot on HS. I, I don't wanna throw shade on psoriasis, as that's an extremely disabling condition as well, and certainly near and dear to your heart too. but we talk about it from the framework of those conditions, especially again, when we think about, Black patients, Hispanic patients, and, and what do we need to think about? Yes. first off, it's important that we ensure that there's a pathway to access, but also a pathway to elevated care.

So how do we do that? Number one, within the Black and brown community, as you may know, dermatologist clinicians, we don't go there. So the first thing is to educate these populations on the importance of dermatology. It's not just so that you look good. There is a reason, to deep clinical care within dermatology. The second thing is to teach patients to advocate for themselves. and we have, an amazing example here on this panel. And when I say advocate for yourselves, yes, understanding the disease. And this is something I do not mean to disparage the clinicians in the audience, but one thing that I share within my family, just because there's the white coat doesn't mean that the clinician is right.

Push back. Ask the right questions. If they're speaking a language that you do not understand, ask the questions. so we have to teach that. And then lastly, at UCB, under the direction of, Charity and her team, it's all about empowering.

Teaching, especially with HS, that this is not a condition to be ashamed of. This is not a condition that you cause. And even though that there's history, because there is mistrust because these patients have gone to a plethora of clinicians that have told them that it was their fault, and that they did not do the necessary, steps that has caused this disease. So teaching them to empower themselves so that they can get the appropriate proper care. I wanna echo something you said. It, you know, one, as a patient, being an advocate for yourself. But actually question, by a show of hands, who here is a physician in the room?

Okay. So I think it is also inherent that we need to teach our residents or medical students that it's okay for patients to be advocates for themselves. That I think one of the reasons why maybe people shy away is that we tend to get defensive, and that we feel like we're being challenged. And so I think in order to really truly meet someone where they are, we have to be fragile and open to accepting that feedback because we only know what we know, and I think we have to be okay with it. And that has to start from day one in training or else this will perpetuate. So I think that's a very, very important point.

so shifting gears a little bit, and I'll, I'll call on Sydney and even Jeremy for this. we are so fortunate to have those who have experienced this firsthand to really give us the lived ex-experience. Can you talk about some of the challenges you faced, and I'll start with Sydney, early in your journey with HS?

Yeah, for sure. So I think my journey started with HS around eleven, twelve years old is when I started getting the boil-like abscesses in between my thighs. And, you know, I had played sports my whole life. I played sports since third grade through high school. And so I thought maybe because I played volleyball, like it was maybe from my spandex, or I did a lot of self-blame because I had, like, sexual trauma from child issues, and thought maybe that was what was going on. Like, obviously I wasn't sexually active at my own, like, on my own accord. And so I, from a very early age, blamed why I was getting HS, symptoms on myself, which made me, like, not wanna talk to my parents about it, not wanna talk to my mom about it.

She at the time was a medical assistant even, so, like, even though I knew maybe she could help me, there was not that correlation of, like, this is okay to talk to her about until it started impacting the way, like, I physically could walk, and she was like, "Well, what's going on?" and so then at that point, like, I would, I would let her know, and she just didn't know what I was dealing with. And so that was really disheartening. There's like strikes, right, that happen in your adolescence age of like, okay, like, if my mom doesn't know what's going on, like, nobody's gonna know.

then when it got so bad to where it was so inflamed I needed to go to the emergency room. And like, you go to the emergency room, and your mom doesn't know what it is, and the doctor's like, "Well, how do you I don't, I don't, I don't, I don't know what this is either.

Let's just, let's just drain it, pack it, send you on your way." and so that was my journey with HS for a long time until I was in high school. I happened to be doing a internship through a dermatologist office, and that's when I put two and two together that dermatology means skin, and they take care of skin and that. I left that internship making my own appointment at the same dermatologist office, and I went back a few weeks later to my appointment. She said, "Hey, this is, you have HS." she gave me some antiseptic wash to go on about my way. And at that time of diagnosis, there was no treatment options available.

So even though I left with an answer and I had something to go home and Google, I still very much so felt, like, defeated and that there was not a lot of options for me living with a chronic disease at seven- seventeen. Tha-thank you for so much sharing that. And I think the word defeated is one I think a lot of patients feel, and I'm hoping we're changing that in, in modern- rare, but for too long, that was often the case. And I think when you throw a condition in terms of what it looks like and where it occurs, assumptions are made. and I think that's one of the struggles, that it looks like an infection even though it's not, but that's the path of least resistance.

So, "Oh, it's an infection. Let's cut open and drain it. Go about your merry way. You're not my problem anymore." And I think a lot of patients feel that way. Jeremy, what about you? my experience was a little bit different than Sydney's.

mine came on when I was about 32 years old, and it, it started as just a little bump like most people starts, just one little bump. You think it's an ingrown hair or something like that, a pimple. I didn't really think anything of it. I just thought, "Okay, ingrown hair. I'm a guy." I'm like, "Whatever. I'll deal with it later," which is terrible, when you, when you think about it. But it wasn't until a few la- years later, and I was diagnosed by a nurse by accident. I went to see my doctor about asthma refills, and I had trouble sitting down 'cause I have a big bump on my waist, and she was like, "What's, what's going on?" I said, "Oh, I just have this big bump," and I showed her, and she's like, "Oh, that looks like HS." "Okay.

Thanks. Can I get my asthma medicine?" And then I left. Fast-forward a couple years, and, now it's appearing in both armpits, and I can't take my shirt off or put my shirt on, and I'm on the couch for a couple weeks. That's when I started to get seen by a dermatologist. And in hindsight now, that's way too late because when these bumps start happening, if you don't get seen, they develop tracks. If you're taking medicine to help control this, those might not appear. But if you don't get seen and you develop tracks, now you have surgery. There's not another-- medicines aren't fixing the tracks.

So I just let it go, and, it got really bad. I was on, you know, different biologics, trying to navigate it. And eventually, fast-forward a few more years, I was ended up being bedridden, for about nine months.

And a lot of stigma is about weight, smoking, things like this. I know so many skinny people that have HS. It's not weight, and I've had doctors even tell me, "Oh, you gotta lose some weight." Okay, so when I was bedridden, I went from weighing 250 pounds down to 165 pounds. Wow. And I was at my worst, and it didn't stop. It's not weight. I was skinny. I, I can't even look at myself like that. So there's a lot of stigmas, and, advocating for yourself is one thing, that I'm very big about. I just had a doctor's appointment, not too long ago, a week ago, and I asked my doctor, "What new medicines are coming out?

I know there's about 10 or so, maybe more in the pipeline. Do you know anything about what's coming out? 'Cause what I'm on right now is, is not really managing." "Oh, I'm not really sure what, what's all coming out. You know, I, I haven't had the chance to look." And I'm getting that kind of response from a lot of people. It's like, how are we supposed to move forward if your doctors don't have the time to research what's destroying you? So it's been difficult. Thank you so much for sharing that. I wish we had three hours to kind of dissect- Yeah all the things you said, 'cause there are so many important teaching points.

You know, you bring up about misperceptions and, and weight, and I think that there are so many pieces. One is I, I teach all of my residents, you don't talk about weight in the first visit, first of all. but two, there is this blame piece to it, right?

And I think that goes to the kind of infectious appearance of like, well, this is an infectious disease. It's you did something wrong, which adds to that burden of disease, which absolutely you're right. You could be stick thin and still have rip-roaring disease, and I think that's a very im- important point. And, you know, I, I'm, I'm sorry also that you had that experience in the healthcare system where someone's response really said to you, "I don't care enough about this to know." That's really what they say. It's like say, or someone saying like, "Oh, I'm gonna send you to someone else 'cause I don't know how to take care of it." It's also, it's a, it's a way of saying, "Well, I don't care enough to know," and, and that's You're very fragile and open in a physician office, so I'm sorry that you experienced that.

I appreciate that, but I'm not sorry, because, because of that, I'm able to speak about it and educate more people not to do that. Yeah. So I'm not sorry. Thank you. All right, I'm gonna turn it over to the award-winning Charity. I know you've worked with Sydney for some time, and I know you've heard many stories, interfaced with in- many incredible patients with HS. How have those experiences shaped your experience and your drive and what you do at UCB? Yeah, no, thank you for the question. Sydney, we were talking when she came in. I was like, "When did we start working together?" And I think it was January of 2022 we realized.

and I think what we uniquely did, and, you know, when I started this work, I realized I don't know enough about this condition, one.

We were still very much learning. But no matter how much knowledge that I was able to retain and learn and understand, I knew that no one would know it better, be able to teach it better, be able to talk about it better, represent it better than people living with it. And so, that's kind of how this work started with Sydney, who, who kind of helped us create our campaign from the very beginning. I mean, for us marketers in the room, literally looking at, like, talking to an agency and saying, "That's not gonna work. That, that doesn't work." And it was bringing people into the fold to tell their stories, to hear their stories, which I, I think is so critical.

And we've built a great relationship since then. I've, I've been so fortunate to watch her grow. I've worked with Jeremy since then, and, and they've been such an asset to us as an organization, transparently, because I think the only reason that we have been successful is because we've told the story, but not from us, but from them, and to their peers, so. Thank you. And, and along those lines, you know, throwing it back to Tiffany, from your vantage point, what do you think some of the biggest systemic, maybe informational gaps that we really need to address in partnership?

I think that's-- this is such a great representation of partnership. You can't do it on your own island. You gotta do it together. How can we work together to address some of the gaps that you're seeing? Yeah. I think that is an important, um-Question, and to build on some of the things that we've said already, you know, the education, that's a huge gap.

you mentioned an important one of teaching future clinicians how to engage with these patients and engage in a way that's meaningful but does not defeat them. I think the, the second thing, that is a gap that Charity, you hit on in terms of the creation of the stories. We need more stories. not stories that are generated from marketing, but stories that are generated from real patients. And the reason why that is important is that those stories will trigger a couple of things in the patient that, "Hey, it's not me, and I'm not alone." and the second thing is the caregivers.

I struggle because I think about adolescents. I think about kids that are suffering with HS. And, you know, in many Black and brown communities, if you get a boil in certain places, can you imagine that conversation with that parent? and so those adolescents become withdrawn, and they keep the disease to themselves, and to your point, it worsens. So educating caregivers, so that they know, how to approach, children or adolescents and the right discussions to have with them, I think that is-- those are the two major gaps that we have. Yeah, I, I agree. I think the greatest educational opportunities are through cases or stories.

and along those lines, not to take away your shine, Charity, but we do have a TV star in our midst. so I know-- I said I know you were, you were part of the, the HisStory campaign for HS, part of the, you know, UCB campaign on the commercial. I would love to hear what that experience was like for you, being someone who has had a journey where you've been bouncing around, uncomfortable to even bring it up, let alone not gain the right diagnosis.

How did this complete 180 of being in prime time, being able to talk about this to a lot of people and a very large audience, but also recognizing that this opportunity even exists for someone with HS? It's what dreams are made of. Not Disneyland. Every single day, I, I'm very grateful, and I'm very fortunate to do what I do to advocate on-- at the lengths that I do-- I'm able to bring HS awareness. I mean, they had me on a Times Square billboard. Like, it was, like, bigger than life, you know? Excuse me. and it's, it's completely changed my life and the way I view myself, the way I show up for myself, and the way I show up for my children and my family.

whoever had the idea earlier about the cookout cards, I'm like, "Let's just add a little box on there that says, 'Do you also have HS, or have you gotten two or more boil-like abscesses in the last six months?'" Because so many people in the Black community are not talking about HS because it's correlated to maybe you have chronic boils, or maybe it's an STD, or maybe they think it's contagious, and there's a lot of shame rooted in the stigma of that. And so to be able to show up on social media the way I do, show my skin, be confident in myself, learning to grow confidence every single day, I'm showing the adolescents who are on social media inevitably that it's okay to It's okay to have scars.

It's okay to not have a perfect aesthetic body that society pushes onto us, and it's okay that even if you have HS because, one, we're making sure that if they don't know anything about HS, that they know that it's not their fault.

And so being able to be a part of the Make History campaign and, and be I mean, it's, it's not, it's just not about me, so I try not to-- I don't like to make it about me. It makes me really uncomfortable. but I love that God has been able to use me in this way and turn my pain into purpose and help other people know that they're not alone. That was amazing. And, and Jeremy, I love what you said about not being sorry because each of these in-interactions and experience fuels your desire to advocate on behalf of yourself and others suffering. You, could you maybe speak a little bit to that?

Like, what was your aha moment in terms of really being an advocate for those who maybe don't have a voice, and in parallel maybe how that then translates to partnering with those engaged like UCB and others to really make sure that voice is amplified? Oh, it's been amazing partnering with UCB. Like, they have been so amazing just spreading awareness and helping us because we're only so big as individuals. You know, we only have so much money. They've got budget to do things, to put on things like this, you know? We can't do that. We can't go buy a billboard. We don't have that kind of money.

We gotta pay bills, you know? So that, it's very important. also about advocating, for me, when I was at my lowest point, I was bedridden for nine months. I was 165 pounds. I had it in both armpits, my groin, my butt, my waist. I, I had to think how to reach for a glass of water the least painful way. Nine months of that, dark things go through your mind, and I honestly don't think I would be here if it wasn't for my wife, my caretaker, holding me up 'cause that was a dark time.

And so when I was going through that time, I was on Facebook and looking at all the groups, and it was just despair. And when I came out of it, I said, "You know what? I don't want anybody to feel like that." I travel all the time. I play guitar. I shoot, you know, camera. I'm a, a ph-photographer. I don't want anybody to feel like how I feel. So we dec- we decided to start Warrior Stories, and we travel the world and interview other HS warriors. But instead of just having them tell their story, want-- we wanna inspire people. We say, "Tell your story. How did it start?

What are you using to treat it?" And then we focus on, "Who are you? What inspires you?" And then we'll video them doing their, their passions, whether they're cooking or playing basketball or singing.We wanna inspire people, and that's, that's really where Warrior Stories came from. We just did a, did one in, in Japan not too long ago. We interviewed the leading dermatologist in Japan, to get his ideas about HS, interviewed another warrior. So it's just all about spreading awareness. We just wanna inspire people. And, and another thing that's crazy is a lot of people don't realize how many people have HS.

You guys probably have never heard of it, and what's crazy is, on the low end, 80 million people in this country have it. 80 million. That's a lot. And if you look at, we've heard, clinical trials being talked about too. If you look at some Not that I'm comparing, but, like, IBD or Crohn's disease, right? 7 million people affected, 1,500 clinical trials.

HS on the low level, 80 million, less than 300 clinical trials, and this is a devastating disease. So it's all about inspiration, getting people to talk, getting people to realize that you're fine. A lot of us go through the same stuff, and we're here, and we're still rocking it, and you can too. So that's what we're trying to do, is just get people to understand that and tell their story. That's awesome. Something, something you said, which I think often is underestimated, is the impact on the network and the family, and I love that you gave your partner a shout-out, and I think we often underestimate the impact of this disease.

So when I see patients here, they're rarely by themselves. They're usually with a family member because of mobility issues, just even emotional support, and so I think we need to also acknowledge those that care for HS patients but are really in the trenches too, and they need a round of applause. Sid's husband. Yes, yes. Also, shout out. You're killing it. so the next question is for both Tiffany and Charity. In thinking about what we've heard and the initiatives that, two incredible, patients who are definitely not afraid to share their voices, with, the world, how is UCB gonna measure success?

Like, how are you going to really appreciate, is everything you're doing, which we are so thankful in every community, how are you gonna measure success, and how is that gonna direct what you do in the future? Maybe, Tiffany, you wanna start. Thank you. that's a great question.

I think the first thing that Charity and I both have to do is, and we've, we've been along this journey, is educate the organization that measuring, measuring the success of the initiatives that her team comes out with is different. Typically, within business, and the marketers that are here, they know it's about share, it's about revenue, and it's about the number of patients that you bring, into the fold. but when you talk about initiatives that affect, Black and brown individuals, the success looks a li- a little different, especially some of the things that we've shared up here about lack of education and working to, get individuals to, advocate more for themselves.

So what that looks like is how many, patients can we drive into an office to advocate for themselves? how many more real stories, can we create and partner, with individuals like Jeremy and Sydney so that we are getting the education and making those connections, in the market? And then lastly, I would say, is how can we, educate more clinicians so that they understand what they are seeing when the patient walks in the first time, and if they're not apt to treat the condition, that they have the know-how to refer to a dermatologist clinician that knows how to treat, HS effectively.

That's what success will look like for us at UCB. Sounds good to me. Yeah, I, I agree with everything Tiffany said. I think the one thing that I also would like to add is we talk so often, and you mentioned this, about return on investment, return on investment, but there's an element that we should all be thinking about is the return on equity.

How great is it that I can pick up the phone or text either one of these individuals and say, "Does this sound right? How is this working?" And I before I've invested thousands or millions of dollars into the market for something, right? And then it doesn't work, and I've got these people that I can call. So there's equity in some of these re- relationships that is not measurable quantifiably, right? I ca- I can't count that, but I know that there's value in that. I, I can't see where the dollars are saved, but I know that they are. and so I think that's one thing. How can we really, train and help our organizations understand, like, not everything is, a, a return on investment in the same way that we're used to thinking about it.

It, it's really an equity play, and that's important because, we have these deep relationships with general market for, for decades and decades and hundreds of years, and so we need to invest in the same way, in populations and communities of color specifically. and so to me, like, it's the return on equity that I think is really critical, and I, I think the idea that, anyone can look at one of our campaigns and say, "That got me to a doctor," or, "That enabled me to have a conversation," or, "I finally saw someone talking about HS. HS, I never thought I would see that." Like, those are the things that I think bring us the value and know that we're doing the right things, and that is success for us.

And it's happening all the time. And I, I wanted to piggyback on that- I'm at the airport and somebody's like, "Oh my God, I follow you.

I saw you on the commercial." And it's like, it's, it's happening every single day, and it's happening in my comments section. It's happening in the DMs. It's happening in real life. It's happening in real time. So we appreciate you guys for your partnership. If I could quickly piggyback on that and say it's, it's already, the success is there. You can see it. Back when Sydney was one of the first advocates, there, there were no other people really doing that. Now there's a ton of people telling their stories. There's the sisterhood, there's the teens', forums, there's the HS brotherhood.

There-- The success is already shown. It's just getting bigger and bigger with all the helpAnd it can't slow down. No question. It, it won't slow down. Can't stop, won't stop. Yeah. All right, we're gonna wrap this up. Some rapid fire last questions. So first, Tiffany, on the chopping block. One action a healthcare leader can take tomorrow to advance dermatology equity. Rapid fire. Um- You have 10 seconds. I'm just kidding. 10 seconds. No, that's hard for me. listening. Yeah. Listening to your patient. That's I, I can't compete with that. I like it. Charity, one misconception or misperception about HFS, especially in patients with skin of color, that needs to be corrected yesterday.

I think someone said it earlier. pray, but also go to the doctor. Those two things are not mutually exclusive in our compu- our community. And then for both Sydney and Jeremy, one word that captures what this initiative means to you.

Empowerment. It's given It's crazy. Something that took, made me feel powerless for so long, has given me purpose and brought power back into my life. So I love, I love empowerment. I would go with inspiration. because being a part of things like this and seeing people that actually care and working with industry people that actually care, it's inspiring to get out and talk more about it and invite other people and say, "Look, these people really care about us. Tell your story." So inspiring is what I would say. Well, thank you all so incredibly much. you know, when I, when I was a resident working, at Einstein in the Bronx, I would never, ever have expected to have a panel with patients, industry, physicians talking about HS.

it was one of the greatest challenges, as you know, for so many different reasons. So even in just two years, 'cause I just graduated two years ago, clearly. In a very short while, I'll say, the landscape has changed so dramatically, and we owe it to everybody. We owe it to our incredible patient advocates. We owe it to our industry partners. We owe it to the physicians on the front lines, even before it was cool to be into HS. and I think I-- everyone here has really gotten a, just a small taste, but an incredibly tasty taste of what it means to adequately and effectively talk about this disease, but also ensure that patients are being diagnosed in an appropriate and timely manner and getting on the right treatments.

so thank you so much, everyone, for your attention.

I don't know if we have time for Q&A. We have time for Q&A. Dr. Carter says so. Don't fight with her. We have five minutes for Q&A. Any, any questions from the audience? Yes, please. So my question is actually for you, Jeremy, and- There also for Sydney. Looking at you guys today, you look like you're very comfortable. You don't look like you're in pain right now. But you mentioned, Jeremy, that you were looking for, updated treatments, the new technology that was out there. Where are you guys today in your level of health, if you don't mind speaking on it? and where is the direction of treatment going today in HS?

Are you finding what you need? Ladies first. I am coming out of my, you know, childbearing era. So I just had, like, three kids in the last five years. It's fine. So I am- I am looking now for I'm excited for what's on the horizon when it comes to HS treatments because I know postpartum can be really hard living with HS. I have, like, a flare on my butt cheeks right now and one on my thigh, and that's really hard with travel, but I would never miss anything to bring awareness, you know? So it's all worth it at the end of the day. But definitely excited for what's on the horizon, and it's, it's never good to have H-HS, but, like, it's a good time right now to have HS, is what we say.

So really grateful for where it's going. Yeah. For me, I just had wide excision surgery on both my armpits in January, so I, And unfortunately, it was done an old school way, which isn't necessarily bad, but there's new, better practices that heal better.

I hoped for it to be left open, so he could take out a lot, and he closed it, which means he didn't take out very much. So literally four weeks after getting out of surgery, I have HS all around both, both surg- surgical wounds. So my journey is I, I'm gonna have to get more surgery again, maybe next year, hopefully for CO2 laser, laser, and leave it open. Take out my whole armpits. Don't leave anything. but I've also been on just about every biologic as well as infusions for rheumatology that would help HS. the current biologic that I'm on right now, has been keeping things at bay, but I'm getting a side effect of folliculitis, and it has grown a lot, and it's all over.

So I just saw my-- what I was talking about, seeing my dermatologist last week, asking him if, if there's anything new, and he didn't really know. And so that's where I'm at. I'm, I'm hoping for whatever's coming out. I know there's a bunch, ten, fifteen maybe, drugs in the pipeline, so I'm looking forward to that and then looking forward to CO2 laser and taking my armpits out again. Hi. More or less a statement than a question. I just wanna thank you. I have HS myself, and honestly, I have never acknowledged it really until this point because I was so ashamed of it. So Thank you.

There's always one in the crowd. She got a whole family. Yes. She got a whole family. I received some barbaric treatment in my days. you know, cutting abscess, not even giving me, anesthesia or anything to numb it. I've had doctors tell me to shut up and just take it.

I've had some truly horrible instances with it, but I'm just happy to see that it's being acknowledged and being addressed. I just wanna thank you. Thank you. You're not alone, girl. You're not alone. And I h-I hope you're, being treated. Thank you so much for sharing with us. I hope you're being treated and feeling okay. They try. It's tough. Like, like, they-- you know, like- I may know a guy. Yeah. Yeah. HS Connect approved, by the way. He is HS Connect approved. Ac-actually- Please check out our resources on hsconnect.org. I, I'm glad, I'm glad you brought that up. So HS Connect is a wonderful patient-run organization that has, in just a few years, become literally ubiquitous with advocacy, HS, and patient empowerment.

so if you're not familiar and if you have HS, absolutely you gotta check it out because who better to hear from than someone experiencing similar things to you? And also I wanna throw in AHSSID as well. I, I love HS Connect. I work with them a lot, and they're all amazing. But also Jasmine, has, has founded AHSSID, Association of Hidradenitis Suppurativa and Inflammatory Diseases. Amazing resources. Agreed. Questions. In the last sixty seconds, anyone? Going once, twice. Sold. Sold to the man with HS. Thank you, guys. Amazing. Thank you. Can I give it back? Yeah. You got it from me.

Fair enough. Oh, sorry. Just, just getting Oh. Yeah, of course.