And so I like to make sure that everyone is aware that HS is more, it's more again of that occlusion of the hair follicle or, inflammation of the hair follicle, followed by that immune system dysregulation and systemic inflammation. What I hope that we can take away from the panel today is that HS is not something because the patient's hygiene practices. It is not something that is contagious or something that the patients did to themselves, and that is oftentimes what patients may be told early in their diagnosis or before they even reach a formal diagnosis. it can be associated with other, metabolic conditions that we're gonna talk about on the panel.

And as such, because it can lead to chronic disfigured scarring, and it can have such an impact on a patient's quality of life, it really requires a comprehensive approach that is very compassionate for any patient that comes to us seeking care. Absolutely. Oh, absolutely. And thank you so much for sharing that insight. And so I know a lot of women or, or people with living with HS actually live with HS for a bit longer without even knowing it, right? And so I wanna lean into Jasmine and, and your story and what your journey has been like, both emotionally and physically, and when did you realize that maybe something wasn't right, and what was that experience like?

Yeah. well, my name is Jasmine Abana-Espey, and I'm the founder and CEO of a nonprofit organization, helping people living with HS and inflammatory diseases reclaim their lives.

and so I was diagnosed with it when I was in high school, but I developed it when I was 13. so if you can imagine, just from the description of HS, I had stage III, so it was very severe, and it progressed rapidly. So any semblance of a childhood was, extracted from me because of this disease. I was in and out of the doctor's office. I was poked and prodded. You know, that was my life. and even before that, I was still chronically ill. I was chronically ill out my mom's womb, which was great. but, it really impacted a lot of my, social relationships, my relationship with my own body.

I just, was talking to my therapist about the grief that I've had to experience dealing with a chronic illness like HS. I think anybody with a chronic illness can relate to that, grieving the body that we have before the body we have now, and then, okay, what does treatment look like, you know, in that body? You know what I mean? So there's just so many stages of grief that I've experienced, and that I've had to work through, as an adult because as a kid, I didn't have the language of what I was dealing with. I didn't know how to articulate it to my parents. I acted out.

I put them through so much, you know? But, I, I've grown to really find tools, beyond talk therapy. Like, I definitely do talk therapy for sure, but things like EMDR, things like somatic healing, sound bowl healing, reiki healing, so many things that deal with trauma in the body and energy work and things of that nature that have helped me to deal with it emotionally and mentally.

And then, of course, the treatment aspect of it and just going to, you know, dermatologists, physicians, things of that nature to get, my body and inflammation under control. So, you know, I'm in remission now, which is a blessing, and I definitely don't take it for granted. well, what I consider remission, I'll say it like that. but it's been a tumultuous journey getting to this point and being able to, like, even sit here, even being able to start a nonprofit, being able to talk, you know, publicly because there's so much shame and isolation that is experienced. And for me personally, I felt like if I came out and said I had this debilitating condition that disfigured my body, that I would ostracize myself from or be ostracized from my community.

But so many of my friends, whether they're in the community like Imani or whether, you know, my friends back at home who don't have any relationship to the disease beyond me, you know, they have been a great support system, and I honestly wouldn't trade, you know, not speaking about my condition for the world. You know? I'm really grateful that I was able to talk and be at this point because advocacy, this work really saved my life, to be truthfully honest. Absolutely, and thank you so much for, for sharing that experience. You know, HS is a, a condition that really shows up physically, but I love that you spoke on how mentally it impacts you, the isolation, the shame, and things like that.

And so, Imani, I would love to, to ping that over to you to talk about some of your experiences, how it's infected your, your self-esteem, and maybe even some of the things that you have done to help get through some of those challenging moments.

Yeah. Hi, everyone. My name is Imani Futrell. I've been living with HS for about ten plus years. I got diagnosed a week before my birthday. I was like, "Oh, man." So but at that point, I didn't know what was really going on. But it kind of started around eleven. I just noticed, like, a lot of stuff was happening, like, in my groin area, and I was like, "Ma, what's going on?" And we just thought it was because I wasn't cleaning properly, so I was like, "Okay, I gotta scrub better. Okay, I gotta keep myself clean." But it kinda chilled out for a few years, I would say. And then, when we noticed, I guess, it coming back, it was under my arms because I was trying to shave, and I was trying to wear a tank top.

I was trying to be outside. But, um-I ended up shaving and there was this huge, like, reoccurring boil, like abscess under there. And my mom was like, "We need to go to the doctor's and just get this figured out." So my primary doctor, she diagnosed me with HS, and she was like, "Yeah, this is what you have." And I was like, "Okay, what's that?" Like, what Like, you know, I didn't have the knowledge on it. So I didn't start seeing a dermatologist until, like, two years later because I had to go to the emergency room for another one that I had. And she ended up kind of cutting into it, and I was bleeding out all over the, What's the thing that you sit on?

The, um- Exam table. What's that thing called? Exam table. The exam table. Yeah, yeah, yeah, yeah, yeah. I've been there so many times, I should already know.

Jesus. but yeah, and from that point, it was just like, oh my goodness, like, I need to go see someone. So I didn't know too much about HS at the time. I didn't know about it affecting me mentally, and I didn't know about it affecting me emotionally. I only knew the physical, 'cause you see the scars, you see the drainage coming out, you see it in those uncomfortable places, those tender Like, to the point of where it's just so draining. But I, I didn't see it 'cause I was so focused on, you know, bandaging, bandaging myself and, you know, getting myself together. And I would say, like, recently after finding my community and really learning more about my HS, it made me tap into that, you know, mental side of it because there's a lot of things that have changed in my daily life because of my HS.

Like, I see things through a different lens, but as I continue with my journey forward, I redirect myself. So there have been times where, with my HS, I'm like, "Imani, you can't cry. Like, you gotta, you gotta get this done," and everything like that. But now I've changed that to be like, "I gotta let this out." Crying is, like, an emotional release. I was like And I'm a Pisces too, so I gotta, I gotta let it out, yeah. I gotta let it out. So, but it doesn't make me weak. That just means I'm just releasing it, I'm tapping into my emotions. And then after that, I'm like, "All right.

What we gotta do? The bandage is right here. Ooh, that means I could do a little self-care. I can get in the shower, I could chill out, I could do some flare care, I could watch a movie." You know, I had to really sit down and redirect it because my mindset plays a huge role in how I got confident in my journey.

And my community as well, too, because I just saw so many people talking about it when I first posted about it. Like, everyone was like, "I got this, I got this." I'm like, "Wait a minute." So just seeing that and knowing that there needed to be space for us to be in those spaces, I was like, "Yeah, let me tap into this." And ever since then, I've been growing on my self-love journey, I've been growing on my self-care journey, and learning more about HS and raising awareness with so many people and it's just been a blessing. It's been awesome. Absolutely. I actually love that you touched on the emphasis of community, right?

And so I know, I think Jasmine and I were on a panel maybe two years ago talking about this exact topic and how much having community can make such a great impact on your overall condition and your overall wellbeing, and hearing what other people are going through and helping it helping you get through what you're going through as well. And so I know with having community, it can also help those who are kind of just now getting into it or just now finding out or day one just diagnosed, right? And so, Dr. Guies, I kind of want to talk to you about the importance, right? Our theme today is generational health.

So the importance of making those changes so the next generation doesn't have to deal with some of the challenges that these ladies have dealt with, right? So what are some of those changes that could be made right now that could improve the outcomes for those who are to be diagnosed in the future?

Absolutely. hi, everyone. I'm, Dr. Manda Guies. I'm a board-certified dermatologist, and I'm also the co-founder and chief medical officer at Tono Health. and so I think this is an incredibly important and impactful time in HS because even looking back into the, last 10 years when I first started in this condition, just the magnitude of knowledge, science, and treatment options that we have today was not available. And so I think that building some of the systems and community and processes to be able to support our patients with, with these new tools makes such a big difference.

some of the ways that I think we really need to prioritize are, one is early diagnosis. I mean, the current delay to diagnosis, which you touched on, is currently seven to 10 years, which is crazy. I mean, that is half a generation. It's already gone by the time you get your diagnosis. and so how are we bridging that gap? How are we increasing awareness of this condition? By, Imani, Jasmine, and everyone sharing their stories, I think it's expediting that path because I see patients every day who are coming in sooner and sooner, because of that increased awareness. another one I think is getting access to specialists who understand your condition and who you trust and who you can build rapport with because, like Dr.

Davis said, it's a chronic condition and it's a little bit more of a journey rather than, you know, a one-off. And so establishing rapport and trust with someone over time really makes a difference as well.

and finally, just...Getting treatment, I think shifting from more of a reactive approach that was previously used for HS towards, proactive care because we want to prevent some of the irreversible scarring and damage that can occur. those are some of the ways that I think we can, help the next generation. Absolutely. And, and Dr. Davis, I would love for you to follow up with that, and I know that you touched on some of the access, but are-- Dr. Davis, are there any other systemic barriers that are, I guess, particularly impacting Black patients or patients in general? Like, what can we do to see an improvement in these overall outcomes?

For sure. I would say, you know, one of the things that we really need to recognize is that there is still structural and interpersonal bias, especially when it comes to HS. And so I think, you know, really looking at the systems that we're working within, the ecosystems that our patients are going into when they're seeking their care, really making sure that we're listening to the patients' stories. We are not minimizing their pain. We are validating their pain. I want everyone to have a little bit of a clear picture with HS. As I previously said, you know, it's not just a simple boil or a small skin infection.

That we can do some warm compresses. You can do a little topical antibiotic. It will heal. With HS, you have to think about this is a chronic boil that will recur in this same place. A second one will recur next to it. A third, you know, possible lesion will recur next to it, and then you create this tunnel track underneath that can lead to scarring.

For some HS patients, the scarring is so severe they start to lose their mobility. I have had to write, disability papers for patients who cannot lift their arms, patients who are unable to do their job because their, you know, their lower extremities are affected by the degree of inflammation and swelling that they have. So t-you know, to then come in for someone, you know, for a possible practitioner to then minimize their pain or give them an antibiotic and tell them, "Well, try this and see if it works," not, you know, look further into what is going on, why is this recurring?

Again, it comes back to that early diagnosis. These are the things that we need to make sure that we are discussing in these open forums so that more patients can be aware of it but for-- but practitioners as well. I think we also have to think about the limited access to care to dermatologists. You know, part of that is because of either insurance barriers, the wait time to see a dermatologist, you know, the cost it is to see a dermatologist. I mean, this is something that I know that we are very aware of as we practice. so trying to make sure that we are not only increasing access to care, whether that's gonna be via telemedicine or creating some open forums or panels where we can have these discussions, and also being aware of the cultural competency.

S- HS disproportionately affects Black patients and, in particular, Black women. So it may be that, again, being comfortable going to speak to that practitioner who looks like you, who understands some of our skincare practices that we may do that are different.

So I think just working to also increase the number of minority dermatologists. You know, that's another, you know, barrier that we have. And then also just remembering it is not just a dermatologist or that ER physician or that urgent care practitioner that needs to take care of our HS patients. You need that mental health specialist. You sometimes need to bring in the OBGYN because there is a hormonal component sometimes. You need that endocrinologist because sometimes there is, again, a hormone component from that perspective. Or do we need to look at some other things that are going on?

So making sure that when we do diagnose these patients, we coordinate them with a team so that they can have the best outcomes is what really is gonna be that change that we need. Absolutely. And I love that you touched on some of those day-to-day challenges because, as you mentioned, it's not just something that you experience on your body, it's something you can experience in your body, and, and have challenges, as you said, raising your arms. I have a friend who also is living with severe HS. She has three children, and some days it's so severe and so painful she can't even pick up her kids.

So it's, it's, it's really hard hearing those stories, especially from her, but I can only imagine the other stories that we aren't hearing. And so as we speak about those, some of those day-to-day challenges, Jovette, do you care to, to chime in and, and speak on some of those things? Good afternoon, everyone.

my name's Jovette Simmons. I've had HS since I was 11, diagnosed at 13, stage III. and with relationships and confidence, right, at such a young age, I had a stor-distorted image of myself, so that carried on into romantic relationships, the way I handled just being in relationships, right? For there's a lot of shame and fear attached to HS. I spent so much time trying to hide the pain. I'm an assistant controller and accountant, so there were a lot of times I would-- was in board meetings, right, just sitting like this, right? I don't want people to see that I'm in pain.

I don't want, if they see it, for them to ask me where the pain is. People are nosy, right? Like, they'll start asking you. And so, like, I don't even want that conversation to happen. And so spent a lot of energy in just having this put together persona. And so also I'm a type A personality, so I tend, my husband will attest, I like to control ev- things because HS is one thing you cannot control. and also there-- if, if we were the healthiest people, like, ever, I'm not saying I'm the healthiest, but if, if we were the healthiest, you would still have HS, right? Like, sometimes I used to say to myself it felt like a curse, 'cause I'm like, "Is there something I could have done differently?" And literally, like, there's nothing I could have done differently.

And so I had to settle that within myself and accept HS, right? But it does-I came to this point that it did not define me. and so I came re- like, relentless in my search of finding the professionals that will see and hear me.

And so I met Dr. Guillias just in a search of, a Facebook post. You know, I found out about her practice, and it's completely telehealth, right? So I just met Dr. Guillias within the last year, but she's been treating me for years. And once I got good treatment, it's no coming back from that. Like, it just was empowering. I went almost a year without any flares. And the one key thing I will say I don't know if I'm answering the question. You are. Okay. the one thing I will say is a patient that knows their doctor sees and hears them, it produces hope. Mm-hmm. And hope produces empowerment.

And then mentally, your mind now says, "I don't, I don't deserve to be in this pain, this much pain. I deserve adequate care, care." Yes. So I've had to become a advocate for myself. Even in a doctor's roo- room, even in an emergency room- Mm-hmm I had to stop the doctor as- assertively and nicely and tell them, "Listen to me." So when Dr. Guillias met me, I, I was on I was ready. But then I seen, like, she knows what she's talking about. Yeah. And so I was empowered. Mm-hmm. And so we need that. Absolutely. We just need to be seen and heard, and that encouragement, it does something in you.

Absolutely. and my whole quality of life changed. I love that. I love that. And, and I love that you emphasized Dr. Guillias. I've heard incredible stories about Dr. Guillias with similar stories to yours, right? But I also wanna acknowledge you three ladies as well to stand up here- Yes or to sit up here and tell your stories and be brave enough and allow other people to see you, allow other people who are living with something similar to as what you are living with to be seen and feel seen and know that they are not alone.

And so with that, Jasmine, I kinda wanna pass it off to you, because that is something that you have emphasized or, or made a part of your career or part of your, your What is the word I'm looking for? A part of your purpose, right? And so I would love for you to speak a little bit more about your ability to create these stories, these documentaries, to record people in their day-to-day lives and to help them feel seen with HS. What inspired you to do that? Yeah. so my background is in journalism. I got my master's and bachelor's in journalism. and I always say nonprofit work found me, 'cause I definitely was not looking for it.

it just so happened to be the right place, right time, and I, like, kind of pivoted my career. but, because of my background in journalism, I had always been covering, marginalized stories and stories that were often, either not talked about enough or not highlighted enough. And, you know, based in Detroit, there are a lot of those stories, you know? So it was across tech, business, art, culture, music, everything. And so from that, I had opportunities and access, you know, to newsrooms or magazine publications where I was just able to share my personal story. And so, as I started to do that more and just wanting to, like, e- elevate HS in, f- publications, you know, any publication I could touch or, like, talk to or pitch to, I saw just, like, a bigger purpose.

And I personally wanted to, like, elevate my career as a journalist, 'cause I felt like I hit a wall in Detroit.

and so I applied to the University of Southern California. I got in on a scholarship. And, for my master's thesis, I did a documentary on Black women living with HS, specifically because I'm a Black woman living with the condition, but also because at the time there weren't a lot of stories that centrali- like, focused on our stories. You know, a lot of us were telling our stories online, on YouTube, and things like that. Like, Black women really pioneered awareness for HS, if you really look at, like, the, the timeline. there are a lot of Black women who pioneered a lot of the conversations that are happening now.

and so I just knew that I wanted to use what skills I had to just elevate that a bit more. And so, that documentary, you know, because of my scholarship and things like that, with Sony Pictures Entertainment, I was able to, like, premiere the documentary on their lot, and, that segued into just me being able to do more advocacy work, and then that snowballed into nonprofit work. And so for me, I don't, I don't like to pe- see people suffer. since I was a kid, like, I used to wanna be an oncologist when I was a kid. I wanted to cure cancer. then I found out that I should not be trusted with somebody's life like that.

So I was like, you know, let me not do that. and so I chose something else that was a little bit better, which was storytelling. I, I realized that I was pretty good at it, and so I just really wanted to make sure that other people, if they are suffering, that they have a space to feel seen and to feel heard.

Like, we've said that a few times here today, and, I think it's used a lot, but I don't think I think we should not us- underestimate how much, it means for people to be able to tell their stories, and to own their stories. And so for me, as a, as a journalist, as a nonprofit founder, as a storyteller, as a filmmaker, it's important for people to be able to, you know, live in their authenticity, without barriers. And so for me, journalism, documentary work is about that. It's really about just kind of, like, allowing for people to be themselves authentically, and then for the audience to take away what they will, 'cause that's the job of a journalist.

At least that's what I got taught in J school. So yeah, I, um-I, I make sure that I incorporate that in my nonprofit work now, and we're That same documentary I did in grad school, I'm-- I got funding to kind of like recut it, so we're in the process of recutting it now. And I'm really excited about that, and it's I don't know when it's gonna come out, but we're working on it for sure. and then there's another documentary I'm a part of with, Insight that's coming out, that's Naked Truths. and it's, it's an amazing, doc. I didn't film that, but I was a part of it. but yeah, that work is incredible, and I think, if you look at history too, journalism and film have changed systems.

And I think that that is why I wanna do this work too is because I wanna make systemic and generational change. Absolutely, and congratulations. Can we get a round of applause for that?

Yes, ma'am. Absolutely. And you know, I will, I will never downplay the ability or the magic of storytelling. Even in my day-to-day, I put out information about, you know, how to make, you know, health and wellness more accessible, easier to understand, but nothing is more impactful to our audience at Black Doctor than those personal stories. Nothing. Nothing gets that amount of reach like the personal stories do, so it truly makes an impact. And so, Dr. Ghias, I would love to-- for you to speak on the importance again of personal stories, but also how damaging, not just personal stories, but of sharing your story, sharing your experience with those around you, and then also how damaging it could be to not talk about what you're going through.

Yeah. I mean, I think that when it comes to sharing stories, it's also about increasing awareness because I think as we've discussed, HS can be an incredibly isolating condition, and it's also a condition that can stay hidden for a very long time. you know, not easily, but, but still, given the sensitive areas, I think that a lot of people carry that with them and can almost like retreat a bit more or feel very isolated or a-alone. And, that by sharing stories and by getting patients to a place where they're living their best lives, they are able to, you know, do all these incredible things and, where HS, yes, is a-- it's a part of their lives, but it's not their entire life, by getting the condition under control.

And I think that that makes a huge difference because it really reinstates a sense of hope for patients.

Absolutely. And, and speaking of hope, I wanna refer back to my patient advocates. and I know we touched a little bit on some of the things that help you feel like your best, but I feel like that's kinda what I want you three to leave us with, are what are some of those things, whether you live with HS, whether someone doesn't live with HS, what are some of those things that make you feel powerful or feel like your best self every day? I think definitely giving yourself grace. I was talking to my therapist about that. She was like, "We need to work on that." And I was like, "Yeah." I was like, "You're right." Because it's so hard.

You always wanna show up for people. You always wanna put your best foot forward. You always wanna do the best that you can, but every day isn't gonna be sunshines and rainbow. We wish it could be. But, you know, there's gonna be days where you have those cloudy days. There's gonna be days where, you know, it feels like you, you can't do it, but you have to really look forward. There's so much light at the end of the tunnel, and what I think about now is like we're all here sitting in this room today. We made it. We're here. Like, we're really We showed up for ourselves.

We took the time to get here, to talk to everyone, to listen to stories and everything like that, and that's something to be so proud of. So when it comes to telling your story or just anything with HS, it's a really big thing of just giving yourself that grace, showing yourself that same kindness that you show to so many other people, and it really does make an impact on your life, and it makes an impact on your journey.

So And to also remember that there's so many other people going through th- different things. Everybody always got something going on. Somebody, somebody may not have HS, but they may have another condition or just different things that they're going through. So that's why it's so important, again, to show yourself that compassion and to show p- other people around you that same compassion as well, 'cause we never know what people are going through. So I think that's definitely a thing that keeps me going is just to know that I'm showing myself that love, I'm showing myself that care, so that I can feel good and make sure that I'm putting myself out there to help others and h-help them help others and just keep that chain going within this journey and in life.

Absolutely. Yovette? I would say just being here, right? This awareness, it shows my eleven-year-old self or another eleven-year-old, another twelve-year-old that they will not have to go through what we went through. Seven to ten years of not being diagnosed is crazy, right? And so I'll be honest, I know it's a room of doctors, but I'm gonna be honest with y'all. I lost hope in the medical. Like, I was just over it. And a lot of the times where people will start, going to other ch-- like, chat rooms, other places to find their care, that can be helpful, it can be hurtful, right?

And so it just takes that one doctor, that one doctor to show that they care about you. And for a HS person, I will say, like, help If I was talking to someone, help is here.Right?

Like, help is here. You do not have to suffer anymore in silence. And don't settle. Please don't settle. If there's a doctor that you're just like Because you get to a point where you're in debilitating pain, you just wanna get out of the pain. You don't care who it is, you don't care if the doctor don't like you, just help me get out the pain, you know? But that becomes a reactive treatment, where there were so many doctors that were treating the symptoms of HS, but my girl, Dr. Ghias, she got it. She got it. I'm like, "I don't wanna have to wait until the flare is horrible." She understood.

Sh- it became proactive treatment. And so I think we're living testimonies, liv- that evidence that it is real. and now it's a re- it's a proactive treatment where we're, we're trying to minimize the flares. Like for example, knowing I know, I've learned to know my body. I'm an accountant, right? I'm studying for my CPS, CPA. Stress is one of my triggers, so I've had to learn how to s- "You need to stop. You need to go get your nails done." "You need to just, like, your husband can feed himself." "Your son can feed himself. Just leave." I've learned to choose me. Yeah. So in HS, choose you.

I love that. I love that. Jasmine? Yeah. I think hope for me is, like, building community. and I, like, I'd, I'd used to think that there was no one else living with HS. Oh. I thought I had a rare disease, you know? And, you know, as we know, it's not rare. But I definitely thought when I was a kid, I was like, "I must be one in 10 people who are living with this condition.

I wish I could meet the other 10. That'd be great." but as an adult, you know, instead of, like, longing for finding people, I found those people and built spaces for people to be able to be themselves. Like, I'm really excited about Like we, we, my nonprofit, Acid, we host a summit every single year. it's the I Reclaim HS summit, and it's for people living with HS. There are other conferences that talk about HS, but they're for medical professionals. There's no spaces for HS patients and caregivers to be in a room and learn about the disease and be with people who are living with it.

And so I was like, "Why not we, why not create that space," you know what I mean? "That I wanna see." You know, create the change that you wanna see in the world is what I keep at the back of my head. You know, if I don't see something that I like, I change it, 'cause I have that power. You know what I mean? and so that, and then just personally for me, I've had to learn to pour back into myself because nonprofit work, advocacy work, you pour from your vessel constantly helping people, and so it gets draining. And at the beginning of this year, I was like, "I don't know if I wanna do this stuff anymore," because it was, I was not taking care of myself.

And so I had to sit down and really have a conversation, like internally, and say, "You need to create systems for yourself," you know? And so I had to restore hope within myself for this work just in general. And so a lot of that looked like, you know, what Jovette was saying, like getting my nails done, like making sure that if I have a panel, like I'm putting on clothes that make me feel confident.

I'm, you know, doing my hair however I want to. I'm You know what I mean? I'm just presenting myself how I feel like I wanna present myself, and I'm living in my authenticity because I've lived in shame and silence for so long. I'm like, "You're gonna see me, and if you don't like it, I don't care." Yeah. So that's, that's my hope. I love that. That, that right there is Black girl magic. That's what I'm talking about. Do we still say that? We do. And so with that, my experts, if there were, if there was one thing that you wanted our audience to leave with, Dr. Davis, Dr.

Ghias, what would that be? Dr. Ghias, I wanna start with you. I would say that it's, you know, it's never a great time to have HS, but if, but I just think that this is an absolutely incredible time for HS for the magnitude of new treatments and options that we have at our disposal. And so I think it's just, yeah, I mean, hope inspiring and, reclaiming, reclaiming your life, and for a better future for the next generation- Mm-hmm and the current one. Yeah. Yes. Dr. Davis? I would say it's, it's about ti- it, the time factor. And, you know, if you know someone or if someone comes to you and they are mentioning these symptoms, that's the time to say, "Let's get you connected with care." Or for that patient that's listening, if you have something that continues to recur or it is something that is affecting you, go seek out that help.

And if you do not feel like you are getting that answer, it is okay to go get a second opinion or ask for a referral to a proper source.

Don't ever feel like If you don't feel confident in that relationship like we've just seen here, you know, with Jovette and Dr. Ghias, then seek that out because we are out here. We wanna help you, and we wanna make sure that you are educated so that you can make the best decisions. So I really think that it is about there's no better time to ask those questions and get that proper care. And you do not have to wait, you do not have to suffer, and it is an exciting time to see what is coming down the pipeline to bring more hope to our patients. Mm-hmm. Absolutely. Well, ladies, thank you so much.

As you can see, HS is in a great place. We have the advocates, we have the experts, we have the people doing the work. You guys are raising the awareness. So thank you guys so much, and thank you all for sticking around. And, get ready for the next panel. Good afternoon. Good afternoon. Can I ask the audience a question? Hi, I'm Shari, head of policy and advocacy at Black Doctors. So grateful to have you here. Has anyone heard of three forty B? Raise of hands for three forty B. Well, that's what we're gonna be talking about now. We're so grateful. we have a reporter from USA Today, consumer health reporter, and, I'm gonna pass it on to you, Ken, to take it over.

Thank you so much, and thank you for being here. Great. hello, everyone. Hope- hopefully your afternoon is going well. A lot of, lot of exciting panels, so glad we're able to, add to that hopefully with the three forty B transparency panel.

just a little bit of background. Three forty B is a federal drug pricing program to expand access for low income and uninsured patients. It allows safety net hospitals and clinics to buy outpatient drugs at discounted prices. But is the program meeting intended objectives? For example, one news report focused on a New Mexico hospital clinic that billed a woman twenty-two thousand seven hundred for a drug that carried a list price of just twenty-seven hundred dollars. The woman's insurance company paid ten thousand, but the hospital wanted more. They charged the patient another twenty-five hundred.

How is this possible? Three forty B is meant to help safety net providers improve care for underserved communities. Yet in many settings, three forty B savings don't reduce costs or expand access for patients. We have an exciting panel of experts today who will share their thoughts on what's missing and what could be done to improve this very pivotal program. Today, our experts include Dr. Sharon Alston, a health strategist and CEO of Caraldyn Inc.Reverend Kimberly Williams, CEO of Choose Healthy Life, William Smith, a senior fellow at Pioneer Institute, and Pamela Barnes, a health policy and three forty B expert.

So I'd like to start it off with some questions. panelists, we'll start with you, Dr. Sharon. What is the current structure of the three forty B program, and how does it impact patient access and affordability to medications, particularly in communities with high burdens of chronic disease?

Hi. Thank you. Hello, everyone. one question is, what is the structure on paper versus what is the structure in reality? And if three forty B worked as it should on paper, we would have little to say. As a person that's committed my life to health equity and making sure, that persons, that need health care, I'm an internist and geriatrician by training. I am a health strategist and consultant. so the structure is that federally qualified centers as well as hospitals are able to purchase drugs at a significant discount and pass that on to the patient, as well as making sure that you're able to provide other services to patients that need it.

That is what is supposed to happen. But however, how do we know? The greatest place-- Someone said once, "If you want to hide something, put it in a book." Right? So what some of the opponents to transparency, and I'm all about the transparency, are saying, "Well, we don't have to tell you what happened to those rebates. We can now go open a center. We can go open a fee-for-service pharmacy in an affluent neighborhood," when this is supposed to be a safety net, position. And then you gave one of the egregious examples of how three forty B is not working. and then I will end it by saying there are cases, particularly with federally qualified health centers, that it is so important.

So we don't want to throw the baby out with the bathwater. We just want tell the truth, take the covers off, show us what you're doing. Okay. Pamela, I'd like to go on to you.

what do you think is the disconnect between three forty B savings and how patients may or may not be benefiting? Sure. Thank you for that question. so I like to start off by just looking at the numbers and the data. I, I know it was mentioned earlier about the gaps in life expectancy. So if we look at the nation's capital specifically, we can compare Southeast in Washington D-DC and look at the Barry Farms neighborhood, where the life expectancy is sixty-three years, and let's compare that with Northwest, the more affordable, a more affluent neighborhood, where the life expectancy there is ninety-six years.

So that's a thirty-three-year gap. in our nation's capital within the Beltway, both of these communities are served by three forty B hospitals. And so if you think about what patients are benefiting and what patients are not benefiting and look at chronic diseases, communities like Barry Farms have a higher rate of chronic diseases. Let's look at asthma, hypertension, diabetes, right? And all of these can be managed by medication. But unfortunately, these communities are not reaping the benefits of three forty B, and so they run into medical debt. a lot of people go into foreclosures.

And so we have this thirty-three-year life expectancy gap in the nation's capital, right? And the people are still suffering from chronic diseases, partly because they can't access the medication, and the medication is not affordable to them. And so that's what the problem of the three forty B program is.

It's beautiful by, you know, the spirit of the law, right? It's to make sure patients have access to the medications. But when you have such a disparity of gap in DC is a very small district, right? When you have such a huge disparity of life expectancy within the nation's capital, something's wrong with the program. Thank you. That's, that's a very jarring example, thirty-three-year gap, and that's something we need to address. Reverend Kimberly, what do you think are the long-term generational consequences of inadequate access to these essential medicines? Good afternoon.

Thank you for that question. So, as the president and CEO of Choose Healthy Life, we see, I would say, generational cycles, right? when our elders grow old, what tends to happen is that the family jumps in and provides that care. And, when there are challenges, within that home in order to be able to purchase medication for those family members who have illnesses, that starts to create, I would say, a pain effect. along with when you have maybe a father in that home who has some type of chronic illness or disease and they have to purchase medication, and then they cannot work to get the medication that they need.

They're missing work, and that becomes a family burden. And so with three forty B-What was supposed to be able to provide the cushion for families to be able to purchase medication, what we find is another big gap is that the community doesn't even have knowledge that the 340B program even exists and so they find that they are in a, in a real, difficult situation where I need a medication to help, with my life and with my, my health and wellness, but the funds that were supposed to go to me tend to go back into the system that was supposed to provide it.

And it impacts generations because then the generation who is normally given care, I've seen the generation below die before the person who needed the medication, when that medication could have become affordable to them. And so health and economic mobility are not separate issues. They're one in the same. You need your health, and you need the ability to be able to get the medication that you need for your family. And so the only way to break that cycle is to be able to see 340B reform happen so that the funding actually goes to the patient that's in need and not to the system, that has the paperwork in front of them.

So thank you. Great answers. Great answers. Thanks for, thanks for that. And William, there's a -- in the news we, we talk a lot about pharmacy benefit managers, some called -- sometimes called PBMs for short. how are, how are PBMs profiting off of the 340B discounts given and, and who tracks that spending? Well, PBMs are making a lot of money off the 340B program. They own pharmacies. Optum and, CVS are very prominent players in the 340B program, and they have contracts with hospitals, and s- their contracts are enormously generous compared to a regular retail pharmacy where you might get a twenty dollar filling fee or something.

The PBM-owned pharmacies can pocket a percent of the spread that the, the hospital is making on the medication and i-it's, it's billions of billions of dollars. That's a, that's an awful lot of amount that, perhaps patients could benefit from.

Dr. Sharon, hospitals are buying independent medical practices and specialties, and it's suspected that this is a strategy to gain 340B profits in part as well as overall market share. what are your thoughts on this? Well, I'm known as Dr. Sharon, let's keep it real. So I, I'm not-- I'm gonna keep it real. Before the Affordable Care Act, we knew that, and I know my colleagues, many are in the room, in a lot of the underrepresented communities, you had Black doctors in private or group practices providing care. Then all of a sudden it became a little bit more attractive for hospitals to come into our community.

They didn't want anything to do with us. They didn't want us to do anything with us before, but now that there was money to be made in our communities, and this is not to villainize anyone, this is just the truth, now you come in and say, "We're gonna buy practices, but you have to have these criteria. We're gonna put academic centers and into areas." So Dr. Jones was taking care of patients, doing fee for service, doing, okay, bring some chicken in and, and we gonna work this out. I'm gonna see you. Now it became that we had, a way for larger centers to come into the community with or without culturally appropriate, and that does not mean minority, and I, I'll say that.

I've said this publicly. Just because you're a Black doctor does not mean that you're culturally appropriate, right? Ouch. Right? But everyone needs to have training in cultural appropriateness in patient care.

So what do we think about the hospitals coming in? Great. If we're gonna take care of patients and look at patient care versus profit. Now the other part, specifically related to 340B, don't put a center in the hood, right, that will see ten patients, and say that I'm now providing care, but then you take and put the money for development of the larger centers. The larger and affluent areas, you take that profit and dump it into an area that does not need your help. That's why we need transparency. If you're in the underrepresented minority community, put those funds back to patients and back to centers, back to testing that will offset the cost for the people that need it versus building another ivory tower for people that don't necessarily need the help.

Can I ask one follow-up there? you raise a really good point on transparency and investing minimally in communities that need the help, in terms of diverting money to more affluent communities. how, how would we track that? How would we make that more transparent? What, what would you like to see? I love, love history, and I love being practical. When you go to the doctor right now, and we can ask the people in the room, in about two weeks you'll get something called an EOB. You, you see that, right? It's I saw you, I took your blood pressure, I charge you this, your insurance paid this, and your copay was this.

We're just asking-For you that get the discount, the hospital centers to say, "Hey, we got X medication for two dollars." Of the two dollars we charged the patient or we charged the healthcare program ten dollars, that eight dollar profit, we put it back into the community.

That's it, and I challenge anyone that says, "Well, I don't have to tell you how I use the profits." What are you hiding? Tell us. I want you to scream from the mountaintop, "I am helping," right, "underrepresented, minorities, I'm helping our rural communities, and I'm giving access." What is there to hide? If I could follow up to, to, Dr. Sharon's point there. I think it's important to look at who benefits from the lack of transparency and follow the money there, because it's a billion, sixty-one, eight-eighty-six billion dollar, right, industry. Second to Medicare Part D.

Someone's benefiting. If it's not the patients, then who? And so there are groups and entities who are fighting and, and suing the government, because they don't want to be transparent. So we need to look at, you know, stop asking whether or not the program is broken, but ask who benefits from the program being broken, because it's not the patients. Great answers. Reverend Kimberly, can you shed some light on how strengthening transparency, accountability, and community reinvestment within the program could help generations, in terms of health equity and outcomes? and any impact on faith-based, underserved, historically marginalized populations, please.

Well, we are, at Choose Healthy Life, we fund, train, and deploy health navigators into the community to provide health literacy, and access to care. And so from a transparency, accountability, and investment, perspective, the transparency goes beyond the dollars, right?

most people in our communities have never heard about 340B. If I haven't heard about a thing, how do I know about a thing, right? and so reform really means making sure that 340B is used to provide funding for organizations that are in the community, who know the community, who work with the community, who see the community day in and day out, and provide that, that, I would say, support, to the community through this particular policy. And in most instances, I mean, for example, cancer impacts our communities in a huge way. There are medications for cancer patients that the hospital gets, and the price, the cost impact is three to four times the cost.

And so how am I to already deal with a condition that is already heavy for my family, but then the medication is priced at a price point where I can't even get what I need. and so the squeeze is real, right? and so the ability to be in the community as a grassroots organization and provide that support helps us to be able to make sure that as we're working with people in the community, and particularly our clergy, our clergy has helped to support, Just recently, we wrote letters, to, to the Michigan, legislature to say, "Hey, we support 340B reform." And our clergy members have supported us by being on the front line, basically working with their representatives in Congress to say, "We will not allow our community to not see the dollars that were meant for them." and so it, it, it impacts form is what not only serve the generation that needs it now, but protect the generation that's coming behind it.

Because if we don't see the medications at a cost, at a price point that allows them to be able to get that through 340B reform, then we will not see the generations be- behind this current generation. So that is what we're doing within the community through our model to ensure that, that, one, we're advocating for the transparency. What are we What's happening, with these funds? And we need to hold our people accountable. we have to put the message out that we will not allow for these dollars to be, to come into our community and not be used by our community. And I think Dr.

Sharon said it right. Don't let the, don't let the face or the color on the face fool you. Everybody knows and understands the cost of medication, right? And so the accountability is necessary. We have to hold folks accountable, and then we have to ensure that those investment dollars are b- being put back into the community where they're most needed, so that we can create pathways, for better health in our community. Health is a right. It is not, a privilege, and we need to make that very clear through 340B reform. That's, that's a great example of what's happening in Michigan.

open it up for the entire panel. Can you think of any state-based pressure, state-based reforms that might be a model for the nation? Is that a question for me? Mm-hmm. Anybody. So just one thing, since we And, I'll add. I think one thing, we talked about transparency and accountability. another thing to think about is fixing loopholes within the 340B program.

So there are large urban centers that are being classified as rural locations, and are gaming the system, right? So obviously, downtown Chicago is not a rural location, right? Down- you know, downtown inner city, New York City, that's not a rural location. But they're gaming the system, very smart. And so when we think about transparency and accountability, we have to close some of these obvious gaping loopholes, that the money's just being funneled through.Great answers. And, and I'll open this up for the entire panel, if each of you could say what, what's one thing we could do to fix 340B, so the program can live up to what it is supposed to help the communities it's supposed to help?

Well, Teddy Pendergrass said take off turn off the lights. Turn on the lights. Well, now. Turn on the lights, and let's make sure- that we, again, tell the story. I'm doing a wonderful job with these rebates, I'm doing a wonderful job with these profit margins, and giving back to what was designed with the legislation in nineteen ninety-two to help, areas with persons in lower socioeconomic areas and rural areas. Just tell us what you're doing. and I go back to what one of the panelists say, "Why would you not want to?" Mm-hmm. And who is benefiting? So you cannot come against and say, "Well, we don't want transparency." What?

We're in medicine, how can we not be transparent? I think the one thing that we're looking for is to ensure that the 340B, policy li- li- lives up to its promise. It was created as a generational promise to help people to be able to, to basically afford their medication.

And so when a family has the ability, a mother for pers- for, for, for instance with a child, when she can afford her medication, she can care for her family in better ways, right? when we can meet our physical needs, then we can consider how we can help our families move forward. And so I think we're looking for the, the policy to live up to the promise that it was designed for, and we're doing that in our churches. We're making sure that we're out there, that we're addressing social determinants of health, so that people have at least some window, to say, "Now that my basic needs are met, I can focus on my medication." but we're asking that the, the policy lives up to its promise, so then that way those dollars can indeed be reinvested into the community.

So I would just say we need the transparency. We need to ensure that there's full accountability for those dollars and lastly, that they're reinvested into our communities for the people they were meant for. That's right. yeah, let me say the, the program needs a lot more transparency. I was in Illinois last week, and I, I make it a habit when I visit a city to look at the 340B hospitals and how much charity care they give out. Cook County Hospital gives out eleven percent of their operating revenue in charity care. That's over a hundred million dollars a year in charity care.

That's five times the national average. So there are good players in the system, which is why I wouldn't wanna cut this program. However, we don't know There are, there are also academic medical centers in Chicago that give less than one percent of their operating revenue in charity care.

So there are good actors and bad actors, and I think a little transparency so that the program is not so opaque. How much money are you taking in from the program, and where exactly are you spending it? They can just tell us that. and there are states that have moved towards these reforms. Minnesota now requires a certain transparency. Indiana's coming up and will require some transparency. It- it's not unusual for states to require nonprofits to disclose what their revenues are and, and for tax reasons. So I- I think a little transparency would go a long way. So for me, the, the answer to the question, is, is simple.

Thirty-three years later, the program started in nineteen ninety-two, so thirty-three year la- later, the gap in life expectancy in Washington, D.C. between Barry Farms in the Southeast and Friendship Heights in Northwest is still thirty-three years. Nine mile distance in the nation's capital, both of the populations are being served by 340B hospitals. So when we think about how can we align the program back to its original intent, I would say prove the patient. Prove that the patient is benefiting from the program. You, you mentioned some interesting points here, like the idea of more transparency and the, the example of what Cook County delivers.

do you think that there needs to be more oversight just by and large for nonprofit hospital systems and, the amount of community benefit, they provide to maintain their nonprofit status, and is 340B a key component of that, or can it be a key component of that when you're looking at things like mergers w- through physician and specialty a- acquisitions?

Absolutely, period. I mean, that's why we were all quiet. Yeah. A- absolutely. Mm-hmm. Again, what are you hiding? And why don't you tell the great stories that are going on? I-- because I don't wanna be negative. There are great stories- That's right about reinvestment into communities, about families that are having an impact because they are being, are being impacted because they are able to afford medications more and it's working correctly. It is important for us not to throw the baby out with the bathwater. But for goodness sake, put some lotion on that baby, shine them up- and take a picture and say, "This is what we're doing." And that's all we ask.

And, and for me, I don't know about the rest of the panelists, if you do that, that's one step in the right direction. Yeah. But when you now say, "I don't really wanna tell you"- Mm-hmm that's like a cheating husband. Well, well, why don't you wanna tell me where you at? Right?I think we have a good baby, though, in New Jersey. Yes, that's right. New Jersey is one of the few states, that I would say does three forty B reform very well. and so I would say if you're looking for a good baby, one that's healthy- Cute round, plump cheeks, you would come to the state of New Jersey because that is the state, that really has done well with three forty B reform.

And they've been very successful at, at ensuring that the medication is at a price point where the community can afford it and the dollars are being reinvested back into the community.

Yeah. What you see in New Jersey is that, in most states that have expanded Medicaid, they give out less charity care in the hospitals for obvious reasons. They have more insured patients coming in. In, in a state like Texas, where they haven't expanded Medicaid, hospitals give out a lot of charity care because they have to. and New Jersey, despite the fact that they've expanded Medicaid, still gives above the national average in charity care. It's, it's really an, an anomaly. and the people of New Jersey should be commended for that. Thank you. I'm from New Jersey. And, and you raise a good point.

We, we should highlight the, the, all the positives that are happening in these programs. So thank you, Reverend, for, for bringing that up. is it a You know, we're, we're coming at a time where we have- we're staring down potential Medicaid cuts. we've already been through the Affordable Care Act, enhanced premium tax credits that went away and made policies a lot more expensive for a lot of Americans. is, is it important to, to tell, tell the public when, when this program works, and how can we better do that? Absolutely. I think today's panel is a demonstration of how to do that and do that well, thanks to blackdoctors.org.

And I think the other thing that we need to prepare for is be on the end of more preventative care. when we find ourselves in life needing that medication, it's because we've been reactive, not proactive. and so the work that I do, we provide an at-no-cost full blood panel, within our communities through our Black churches to ensure that they're on the front end, not on the back end when they've been re-reactive and in- and endured, I would say medical debt.

And so it's important, that we continue to have these conversations, that we pay attention to the policies and how they're moving within each of our individual states, and that we, I say, make some noise. I'm proud of the clergy members that I work with day in and day out because they are on the ground doing the work, not just behind their pulpits, but they are on the front lines making sure that there's letters, there's information, that they're in contact with their Congress folks to ensure that this three forty B reform happens not just for them, but for their congregations, for their community, and all that is inv-involved in that.

So I think that this is a great, demonstration of what's taking place, and it's an important conversation to continue. Okay. I think we're at about time. So appreciate all the expertise. You provided a great overview of this program and pointed out some of its areas of improvement, as well as highlighted some successes. So I thank you very much. Thank you. All right. We are heading to our second to last panel. This panel is called Claim Your Numbers. Whoo. Protect Our Legacy. Coming up is Claim Your Numbers, Protect Our Legacy. Shall we get started? Hello? Is the mic on?

Great. Oh, good. Okay, great. good afternoon, everyone, and, welcome to this panel, which we've entitled our LDL Cholesterol as and a Generational Risk Marker, Rewriting Your Family History. So I'm Dr. Luther Clark. I'm a cardiologist, and I currently am an executive director in our Patient Innovation Engagement Group at Merck Pharmaceuticals.

Now, we have a very distinguished panel here today, but before we move into our panel discussion, I'd like to do two things. First of all, this is my first time at this summit, so I really wanna congratulate the team at Black Doctor for really an amazing, program today. Thank you. The second, if I could, I'd like to ask all of you in the audience, if you have a family member or someone close to you that you know has elevated cholesterol or perhaps has had a heart attack, a stroke, or a difficulty with circulation in their lower extremities. How many of you, have know someone?

Okay. Wow. One there. Okay. So I think that's really sends an important message, and I think that as we've heard several times, during the day, cardiovascular disease, in particular atherosclerotic cardiovascular disease, is the leading cause of death and disability, not only in this country, but worldwide. And LDL cholesterol, sometimes referred to as bad cholesterol, is the leading driver and modifiable risk factor for this cardiovascular, epidemic. Now, we've also heard today that there's a treatment gap, and that gap is not due to an absence of scientific evidence, but is largely due to clinical inertia and barriers to systemic implementation of management strategies that we know work.

So we're gonna dive into that today, but before doing so, I'm gonna ask each of my panel members to introduce themselves, tell us who you are, and also maybe, give us your why as to why you agreed to be on this particular panel or, what, led you to agree to, have this discussion with us today.

So let's start with my left here, Celina. Thanks so much, Luther, and thank you, to Black Doctor for having Women Heart, at this event again. I'm Celina Gore. I am the CEO at Women Heart. and gosh, my why? Well, I think it really starts with, having lost our mother, at an early age of thir-- she was thirty-nine. and she didn't die of heart disease. She died of cancer, but the loss of my mom when I was eighteen, I mean, you can imagine what that was like for me, for my younger sisters, and for the family. She was, the, the linchpin for the entire extended family. She was the counselor.

She was the mediator. she was the letter writer. I mean, she was so many things to our family, and I would say that even to this day, we haven't recovered as a family. So when I, And I was a freshman going through my first quarter of finals when she died. so when I think about what led me to this moment, sitting next to Luther and Terra and, and this great panel, it is because I don't want other families to unnecessarily lose mothers at such an early age. And heart disease being the number one killer of men and women, is a great place to start, and which is why I've devoted my career to this topic and why I take every opportunity to have these conversations.

Thank you. Terra. Hi, everyone. Can you all hear me? Okay. thank you, Black Doctor, for having me. I would say my why is Well, first, I'm Terra Robinson, co-founder of Black Heart Association, but most importantly, a three-time heart attack survivor.

my why is simply beyond me now. I almost lost my life at forty, so I do feel your pain having children of my own. I would say my why is my community. heart disease has taught me that it's beyond me, but I am capable of helping. And so I feel like we're just a small piece in the, of the puzzle, unfortunately. But what we do is, mighty work in our community and saving lives and making sure no one else has to wear that black suit to a funeral unnecessarily. And so if we can stop that pain, that's the goal. And so that's why I agreed to be here. Thank you. Dr. Rios. I'm Dr.

Elena Rios, president of the National Hispanic Health Foundation, and I think I'm, I'm re- I'm really here because I've been passionate about advocacy for our communities, Black and Brown, Native American, Asian, all of our communities that are not the golden standard white sixty kilogram male that I learned about in medical school. we all have our distinct needsCultural values. and I really believe that, and I'll talk more about this, about the importance of getting together and, and building a, a, a stronger voice for health, the healthcare delivery system. And our NHHF is, is, kind of in a startup phase.

I left the National Hispanic Medical Association June of twenty-twenty-four, and we decided to shift our foundation to a mission to transform the healthcare system instead of just talking with each other, right? And we're now a, a coalition of all the national Hispanic health professional associations who all have conferences, all believe in caring for their patients and improving the quality of care for underserved, whether they're nurses or doctors or pharmacists or PAs or, the doctors, NHMA is a part of the group too, but they all talk they only talk to each other.

And if we're ever gonna build, advocacy for our communities, I think we need to all work together. And that's why I'm here. And I think the heart disease is the number one killer of the United States, and we're a bigger and bigger part of the United States. We need to be at the table on how we make changes in healthcare and for heart disease patients especially. Great. Great. And Derek, you've been up here multiple times today, so how did we get you on this panel? hi again, Derek Lane, chief marketing officer at Black Doctor, and, I'm honored to be up here with these esteemed panelists.

And I believe, you know, why I'm up here is also personal. You know, when I was sixteen years old, my mother, had a septuple, I'm trying to say that correctly, bypass surgery, where it was seven times, seven bypasses. and now, as she is entering her seventy-fifth year, living with us now, you know, I'm seeing just the health challenges and just living through that. Also, I'm turning fifty this year, so then, you know, you start to look at your health as well. So it's a whole, like, you know, circle moment. You know, I heard when, when Tara mentioned that she was a three-time heart attack survivor, heard somebody in the audience say, "Dang!" Like- Like, how can that be?

so being able to just arm myself, but also while arming myself, help others as well. So that's why I'm here. Great. Well, thank you. And I guess I would just add to that my own why as moderator of this panel. It, it's an opportunity really to show that the company that I'm currently working for is committed to, generational health and to listening to patients, you know, lived experiences and using that to contribute to solutions.

So I'm looking to take back, you know, input that's gonna help guide us, you know, as we move forward. So Tara, three times heart attack survival. So if we think of generational health as the blueprint, I mean, how do you think of cholesterol, you know, and its measurement, and something that should be thought about not only at the individual level, but, more broadly? Yes. We have this saying in my f-family, w- and I say it to my children often. I say, "You know, every choice you make impacts the entire family, not just yourself." And so that's kinda how I think about generational health.

Every choice we make as individuals impact us as, a family and then as a ecosystem, if you think about the entire community. And then you look at the fact that many of us don't know our numbers. Well, our, you know, don't know our numbers or don't understand our numbers after we leave the doctor's office, it becomes a issue. And so when we talk about generational health, we're looking at a multilayered issue here. I think from, especially in our culture, like how we engage our stress, how we engage how we eat, we're talking about habits, that go from one generation to the next generation.

And so I think we have to start much earlier in life having these conversations, with our children about, about health, about cholesterol, when to get checked, and I think that's another issue that we have, is when. Some doctors believe it's later on, but I believe it's way younger. You know, I heard a doctor, at a panel say that you should get your child's cholesterol checked at twelve.

And but then a, a mother was also on that panel speaking about how her child was born with elevated, LDL, and I'm like, "Okay, he must have missed what I just heard." So this is the issues that we're having. So when we're talking about generational health, we have to come to a conclusion or be o- at least on the same page with the doctors and with policymakers and all these other people on when. When do we start to have this conversation? W- when we take our kids to the doctor is a great start, right? To have this begin to talk about generational health. It starts the minute we take-- our kids are born, and then we, we get in these deep conversations because this is not, it's not just about the numbers.

It signals a conversation about how we engage each other from one generation to the next generation and to the next generation. And, and also, when we think about generational health, it's not just the generations that follow- Right but in a, a particular family, there could be several generations living at that moment in time. I mean, as you mentioned, children, you know, parents, you know, grandparents, so it's really a, a broad, concept to, to think about. It really is because I think about my grandmother, who has now passed, but I think about the lessons that she taught us.

I remember it's, it's, it, it might sound minute to someone else, but I remember me saying that, "Oh, when I eat pork-It makes my head hurt. And I just remember her telling me, "Stop eating pork." You know, just as simple as that.

And guess what? I haven't touched it in over thirty years because she was saying it's having an impact on your body. But just having a c-- we didn't have a conversation about hypertension at that point, but it was just, "Stop doing that," you know, "Stop eating it. I don't care who makes it." So I think it's just we-- you have to assign someone in your family that talks, that's not afraid to talk about health, and, we have done that in our family. Like, we have appointed a person to keep a record of what has happened in the family, keeping the history of our health. So I think it's impo-- we can add that to the conversation.

Yeah, absolutely. And Dr. Rios, we know that, the effects of lada-- LDL cholesterol is cumulative over years or decades. So could you tell us and the audience, I mean, what science has taught us about the cumulative effect of LDL over decades, perhaps silently, and then the impact on events, and, and particularly how that might, impact, you know, Black and Hispanic communities? Well, I think, just like Tyra was saying, we have to start younger with understanding that heart disease does start with, elevated LDLs and, and, and having not only the, the measurement, but the treatment.

And I think that's the biggest problem we have with underserved communities that don't have Black and brown doctors and nurses and PAs and, and then we don't have insurance to get in the healthcare system. So we really need to focus on media and education with campaigns to our communities.

And I think, you know, the, the TV ads that, that have been direct to consumer have really done wonders to educate people about the importance of diseases. But they don't talk about, well, go to your doctor. They talk about the drug. And we need to, we need to change the conversation. So I think that's part of the biggest problem is that we don't have access. We don't have as much access as we need, to be able to have proper treatment. So I, I think Hispanics, right now about thirty-five percent of Hispanics have high cholesterol n-numbers, you know, bad cholesterol numbers, LDL numbers.

But, most of those people don't even know. And, or, and then you have less people that get treated because of the barriers. And it could be as simple as not, having, an application that's simple to apply for a clinic or for a hospital, a lab, you know, or, or, as h-hard as not having the, the money to pay for going to the doctor. Great. Thank you. You know, one of the things that makes, this particular panel so timely, and, I don't know if this was part of the black doctor planning, but, five days ago, the American Heart Association and the American College of Cardiology, along with a group of nine other, major organizations, really came up with new guidelines for managing cholesterol and there are recommendations in there that do go across the generations from the very young to teenagers to young adults to, to older.

So, Selena, I mean, given the work that y-you do, I mean, cholesterol is measurable, it's manageable.

So why are we falling short? I mean, what's been the, the difficulty, and what kind of supports do you think are needed to sort of change, you know, the trajectory here? Yeah, that's a great question, Lenjamin. I, I think about, the evolution that's happening on a number of fronts. we are starting to talk about prevention of heart disease earlier and earlier. It used to be that we were working on a ten-year risk model, so if you were not imminently at risk of having a heart attack in the next ten years or a heart event in the next ten years, you-- your doctor wouldn't really have any reason to address it.

So as we move earlier and earlier, you know, the, the advocacy that we've been doing at Women Heart is really trying to say, "Look, we should be talking about lifetime risk. Why are we talking only about ten-year risk?" and I think, you know, whether it's guidelines like this or, the work that we have been doing to, to not move away from disease-specific, advocacy and outreach, but thinking about risk factors, right? Cholesterol, blood pressure, other types of risk factors. The earlier, the better is the motto that we have around prevention. The earlier, the better. As early as possible, right?

Because the earlier you can do something about it, the less likely it's gonna be that you're gonna have that heart attack. And in the public hea-health space, all those of us who are all very nerdy public health people, the challenge is when we try to prevent something, it's really hard to say that you prevented that thing because you didn't do-- because you did or didn't do X, right?

So that's a really big challenge for us, but that doesn't mean that we should stop trying. I guess the, the other thing to say is we also know that high levels of cholesterol could be genetic. So we should be looking at cholesterol levels, again, as early as possible, right? It's not just what we eat. In fact, what we eat is less than thirty percent of what impacts our cholesterol level.Right? So it's not just pork that Terry ate thirty years ago, right? It's what our genetics sort of m- what our genetic makeup is that determines our cholesterol level. and for that reason, I think, you know, I'm, I'm glad to see AHA, ACC, and others sort of getting on board with more I don't want to say aggressive, but more proactive recommendations.

and at the same time, we, as advocacy organizations, need to take that up to do as, as we've just heard from Dr. Rios, we need to get it, get the word out there. These guidelines are no good if they just sit on a shelf, right? We've got to get out there. We've got to talk about this. We've got to engage our communities. Yeah. Well, that's really important. And I think, you know, this panel is focused on, LDL cholesterol, but, throughout the day, we've heard the importance of knowing your numbers and how often, individuals don't know their numbers, either because they don't appreciate the importance of it, they don't have access to screening or monitoring, or don't trust, you know, the providers or individuals that they're, they're working with.

But, And, and, and we've called this panel Claiming Your Number, but is that a term that will resonate with women heart?

Or should it be owning or knowing or- I don't know I mean, which of these phrases are you going to take, Beth? We, we had a very lively debate about what, what word to use. and I'm going to go with owning. Owning. Yes. Yes. Okay. For a hundred points, owning is my- Okay final answer. Okay. So knowing, claiming, but owning is important. Okay. thank you for that. Uh- Can I add to that? Sure. Absolutely. I'm not sure if knowing, claiming, owning matters. I think understanding, uh- Mm-hmm what your numbers matter the most- Okay and how it impacts your, your heart health or whatever's going on in your body.

I think when we go out into the community, I know I spoke to a gentleman, happened to be Hispanic, for forty-five minutes convincing him to get a screening just because of his bad experience with the healthcare system, and his wife was in tears. So when it comes to know, owning, claiming, what is it doing to make sure that I'm here with my family? It's a story. It begins, your numbers begin to tell a story about you and, and your legacy. And I think we just have to be careful, period, across the line, how we engage our community and treat them with care. but I do believe that once they leave the doctor's office, we're missing a opportunity, or once they're in the doctor's office, we're missing a opportunity to make sure they understand what their LDL-C means to their health.

Yeah. And I think all that's important because if you don't understand why it's important, you may not get it measured.

So if you don't get it measured, there's no way to know what it is, and if you don't know what it is, of course, there's little that one can, can do about it. so Derek, you mentioned that your mother had seven bypass grafts. So in the context of generational health, I mean, as a son, as a father, I mean, how, how do you think about generational health and, what, what are you doing for your own kids in, in terms of education and awareness? Ah, that's a great, great question. So when the panelists were talking about starting early, that's what we're doing. We're starting early.

We're talking about not just food, but what other factors contribute to your health condition. Also, another thing that I admonish everybody with aging parents to do is to go with them to the doctor's office. Now, I'm going with my mom to every appointment. She's asking, "Okay, how does this..." You know, trying to understand the numbers. but also being an advocate for her as well. Because there was one doctor, one of her heart doctors probably about five years ago, where they would always, it would take maybe almost an hour when we got there to actually see the doctor for five minutes, and they were in and out.

You know, so we've got, we got to find somebody else, somebody else that is more invested in their health. So being able to say, "Okay, I do have the power to be an advocate for myself and my family," and teaching them, okay, some right ways and some negative ways to avoid in order to make sure that your heart health, your cholesterol numbers, and everything like that are good, but it starts off with saying, "This is what I'm going to do." You've got to see it before you see it.

That's what we say in our house. You got to see it in your mind before you actually see it come to reality. So what is it you want? We all want to be healthy, right? So you got to imagine that, see that, and then say, "Okay, well, what does it take?" It takes doing this, learning about this, going here to talk to this doctor, to talk to this specialist. All of those things in concert together is what we're doing now in order to change the generational health from my family's past moving on to the future. So, so was the wake-up call for you at the time of the procedure that your mom had, or had there been discussions prior to that or?

Great. it actually was. That was a wake-up call. Because, you know, my mom was like many Black moms back in the '80s, working hard. We were latchkey kids. Coming home, we were cooking ourselves. So she was busy at work. So then there came a time when she had to have this surgery where it just literally everything stopped. So she had to be in the hospital for a, a number of weeks. And then so I would go to school, come visit her after school. So it was this whole thing that we weren't used to before, and I said, "Okay, there's got to be something different."We've got to have a different life than this.

This can't be normal, so let's change that. Let's do something about it. So yeah, that was my, my wake-up call. Great. And, and so Selena, coming back to you and your work with, Women Heart, I mean the question-- I mean, where does the system breakdown occur, and what's the most important?

Because often, you know, y-young women, even when there's a family history of high cholesterol and heart disease, or they go and they're told, "I mean, you're young, you're thin, you're active, don't worry about it." I mean, h-is, is that real? Is there something that can be done about it or? I, I mean, I think there's, m-I mean, like any complex system, there's multiple breakdowns, right? There's at the family level d- you know, I, I really love sort of Derek inviting us into his home, sort of imagining what that looked like, when his mother had to go through that procedure.

I think that for many of us, for example, talking about heart health or health in general in families is difficult for one reason or another. But I, I heard a different framing of this to say each and every one of us is the accumulation of everything that came before us. That's such -- I mean, when somebody said that to me, I just thought, "That is so powerful, and that's such a different way to approach this conversation with families." So I think that's the first thing that just has to happen, and I love appointing a chief health officer as Tara has in, in her family.

I j- I just love that idea. so that's sort of at the family level. The next, y-you know, the, the HS, panel earlier, I took so many notes. That was such a powerful panel. and partly because so much of what is they experienced in their journeys happens in just about any condition that women have to face the healthcare system about, even heart disease, right?

As, the commonest condition we've got out there, and women are facing challenges of being believed, of being ignored. It took me two years to get a heart disease diagnosis and ten ER visits to finally arrive at a diagnosis. So, you know, these are, these are inefficiencies in the system, if you want, o-on the one hand, and also they're societal and they're structural, right? You know, when somebody says to me, "Why do you think it is that a woman, takes so long to get a diagnosis for heart disease when they show up with chest pain?" And I'll say, "Well, w-why is it that women have har-a hard time in society, period?" That, like, you can't isolate healthcare from society and what's happening out there.

What's happening out there is happening in the, the medical system as well. it's just a, you know, one lens through which we can see what's happening in society. But bringing our voices together, knowing we're not alone, again going back to the HS panel, knowing we're not alone. My doctor when he diagnosed me actually said, "Happy birthday, you're not crazy." So knowing we're not crazy is actually really important in this journey. and I think, Luther, to, to really, you know, put a fine point on what Dr. Rios said earlier, it matters to have women cardiologists. Right now, only fifteen percent of cardiologists are women.

One five. So it's probably irresponsible of me to tell women, "Go find yourself a female cardiologist," because setting themselves up for failure, right? But the fact is, women cardiologists have better patient outcomes, whether their patient is a man or a woman.

So I'm, I'm gonna say, like, if, if it's somebody who, you know, is in my close circle, I'm gonna hunt for the right female cardiologist for them. So I, I mean, I'm sorry I'm not answering your question. I'm just showing, like, there's so many different entry points to addressing the many challenges that we're finding ourselves in. But the fact that we're having this conversation, the fact that we're sitting on a panel, and we're talking to a, a broad audience out there, the fact that women's health in general is having a moment, the fact that now we're talking about menopause and heart disease, right?

Th-like this is, it's, it's a true, it, it feels different, I'll just say, to seven years ago when I first joined Women Heart. And, and I wouldn't worry about the questions that I'm asking, I mean, because we're, we're here to, we're looking for solutions, and those problems that you think are, important to, to be solved are points you'd like to make, in addition to the one we'll ask in, in just a couple of minutes on. Do so. But before we start to wrap up, I don't know, Tara, you've had three heart attacks. I mean, when you look back, I mean, is there something that should've been done differently in terms of your own care and given what we've just heard?

Oh, yeah. I don't even know where I'd get started. I was listening to her talk about, the women cardiovascular doctors. I would have to say we s- even in that, we have a problem. I would like to have went in, as a White woman, and maybe I wouldn't have had three heart attacks or been sent home twice, un- and I was facing a White cardiovascular female doctor.

So I would say that we just need people to care, and that's the problem with the entire system. It's, it's American, and unfortunately, based on that, it, it impacts us in a nev-negative way, especially as Black and brown people. So, for me, the lack of care that I received was irresponsible. it lacked integrity, it lacked love, and it lacked care. So, and it almost cost me my life. And so for that, I'm very passionate about how Black Heart Association navigates, when we're out in the community.And it, it, it bothers me. You know, I, I was so mad listening to the kidney panel about all their ex- their experiences, and having a nine-year-old granddaughter right now that is in double kidney heart, you know, kidney failure, because of blood pressure issues.

Nine years old, and this is what we're dealing with still in America, where healthcare should not be-- sick care, should not be optional for anyone. And so I just have a problem with it all, and don't get me s- that's why I said, "Don't you." I might not be the one for this panel, because, really we have to wake up, and we keep expecting this system to help us. In reality, it needs to be burnt down to the ground and rebuilt and, and, and, and that's the only way I can put it. Right. Ex- e- e- exactly. Well, okay. Thank you. I knew it. So, so Doctor, Doctor Rios. Uh- Yeah.

I just need to echo that so, so, so, so you've, you've had all the issues posed and, teed up, and, and even though we're focusing on cholesterol, we're really thinking about cardiovascular disease and the SCVD, prevention.

So, so how do you change that from maybe a one-time measurement or prior? I mean, patients do have multiple issues and problems, but how, how, how do you prioritize- Well, I think, I think, I think the priority- this? just like has been said, is that we need to have a system that represents us, and that-- and representation matters. And, y- with our National Hispanic Health Foundation, we have a health careers program, we have a scholarship program. We, we are focused on workforce development among our communities, which are Black, brown, Native American. But we very much think that we need to change the discussion about treatment.

You can't get treatment without having the numbers, a- and that was the whole focus of this panel. And there's new treatment now for, for the, LDL cholesterol problem, and I think that not only that, there's, there's legislation in Congress to have more increased access, with the three forty-B program. I know that was discussed earlier. but also the Mini Act for the genetically, targeted medications, and I know that these medications are targeting cholesterol and heart disease. So there's a real, opportunity and a turning point in this, in this country right now, but our communities aren't gonna hear about it if our doctors aren't there learning about it, the doctors that we go to, the clinics, the primary care doctors.

It's not just the cardiologists. And I think we need to expand the discussion since heart disease is the number one killer. You know, we were always taught in medical school that hypertension is the silent killer.

Like, "Oh, yeah, you have hypertension, but you don't have that much." You- Until you start having, you know, angina and an elephant on top of my chest, and then, "Oh, you might stroke out now. We better take care of you." So I think the attitude about treatment needs to be earlier too- Yeah not just the numbers, but having the numbers to get the treatment. It's, it's, it goes together, and I think that that's part of the, conversations. I mean, I grew up in the nineteen fifties and sixties, and we al- always knew, you know, our grandmothers, our mothers always taught us about how to, how to be safe and not get injured.

You know, they didn't want broken bones 'cause they didn't have money to go to the hospital. Yeah. But so you need to be able to understand, from the mothers to the children, generational, discussion about the importance of having a healthy body. And it is heart disease. I mean, you can-- I mean, diabetes is rampant in our communities, but what do we die from if you have diabetes? Heart disease. A- or it's kidney disease. But- Yeah but, I mean, honestly, I think that there's a lot more education about the importance of understanding that you can be treated, and you need to have support groups that show people that, that people do live through heart attacks and, you know.

But, you can prolong the quality of life if you take care of the, the treatment of the disease. And our-- and the disease is rampant in our communities. Can I add to that? I think we can learn a lot from the community too, especially around bad cholesterol, because one of the things I hear often is, "Oh, I have cholesterol," or, "My cholesterol has been elevated, but my doctor hasn't said that I need any treatment." So I think it's a disconnect between treatment like we talked about earlier- Yeah the care, because they, they, they-- and how it impacts heart disease down the line.

So I think it's somehow we're missing the mark when it comes to, again, how patients understand what should happen or how long should I have elevated cholesterol before something is done. Mm-hmm. So, so there, so the disease is manageable. There, it's largely preventable, and I think we've had a really wonderful discussion as to how we should begin to think about that. And I realize we're running out of time, but before we do, this has been such a robust discussion. I must ask each of you if there's one point, one message you'd like to leave our audience with that you may have stated or didn't get a chance to state, but you wanna make sure they remembered it, what would that be?

And let's start with you, Derrick. let's just go down. if there was one thing I would leave with the audience, I would say is use your resources. Use those tools that are out there. I think today, and I'm, I'm so happy I'm on a, a panel with folks that, that tell it like it is. You know? These folks tell it like it is, and I think we've had a, a full day of panels of folks that tell it like it is. So there are resources out there, just like Black Doctor, you know, where we're based on twenty years of content specifically from Black doctors and the Black community that we've aggregated together, on our site, on our platform.

So use those tools, use those resources.And understand that there is power in your voice. That you can take those resources and go to the doctor, take those resources and go to the policy maker, and then talk to them about changing, turning the tide, because your family is that important.

We've talked about data so much today, but every data point behind every data point is a name, and that person matters. So using these tools that you have at your disposal for your family, for the next generation and generations to come, I think is so important. Great. Dr. Rios. I just think we have to be more optimistic about the future and have our communities, and, and I'm talking Latino, African American, and others, that we all get more involved in our healthcare opportunities to educate the next generation. And I'm talking clinical trials, research, treatment, stories, and, and, and, and get really I think we need to get more involved with media, in terms of trusted messengers to our communities.

We have a lot of bilingual media and Spanish media in this country that doesn't look at healthcare because they don't understand it and, don't wanna talk about negatives. But we have a positive story. We have treatment. We have, we have, doctors that do care. We need more of our own doctors and pharmacists and nurses and physician asso-associates. And, and I think that we all need to be do more, to work together and with the healthcare ecosystem, pharma companies, insurance companies, everybody needs to We shouldn't be blaming each other for anything that's happening. We need to work together to make, to make the change in this country to help our communities.

Great. And Tera, I'm sure you have a list, but what's at the top of your list? I would say at Black Heart, what Black Heart Association wants you to know is that you matter, and I think, we need you to just book the bus.

We wanna show up at your house parties, your family reunions. So wherever you are, we wanna be, and we screen for free, whether that's blood pressure, kidney, lipid panel, lipoprotein A. We are here for you, and we, and we know that you matter, and we wanna show you that. So book the bus, blackheartassociation.org. Thank you. And Selina, to wrap us up. So I, my wish for everybody is that we dial down the celebration of women's suffering, women's martyrdom, and women's, sacrifice, and we dial up women, taking care of themselves. So I would say everyone needs to go to their doctor.

Book that appointment. I heard so many people today say, "I forgot to book my appointment," or, "I haven't done it in a long time." Book that appointment, understand what's going on inside your body, and then take a woman that you love to do the same. Well, with that, let's give this panel a big hand. It's terrific. Okay, wonderful. Thank you. Thank you. And thank you. All right, all right. Sorry. No, you are fine. All right, if our last panel, including Mr. Derrick, can get on. I'm just kidding. Another powerful Sorry, Tara. Another powerful panel. Another But we're almost done.

We're almost done. Last but not least. But I do wanna highlight before we go a few of the things that really stood out during this last panel. Derrick, I know you would probably wanna toot your own horn, but I love that Selina said, "Own your numbers." Own your numbers. And I actually love that Tara redefined owning your numbers with understanding your numbers, making sure you know what you're talking about, what that is, what that looks like.

So I'm gonna go ahead and move us on, 'cause they're already serving wine, and introduce our last panel. Ancestry to Innovation: A Generational Approach to Oncology. And if this group could actually take their photos first, that would be great. Yeah. So that way our photographer can leave us. Oops. I stole your mic. You guys are gonna take your photo first. Oh. Yeah. So whenever you're ready, you guys. Are we out? One, two, three. Which mic? Is Tamika Is Tamika here? Don't worry, Mrs. Webb, she's in the restroom. Oh, okay. Oh. Oh, it's the- I'll wait for her. Yeah. So we're keeping the chair, Sherry?

Yeah? Yeah, yeah. She's here. Yeah. No worries. So we're there. Just leave? Okay, sure. Okay. Well, I think we've, got the cue to go ahead and get started. this has been a full day, just wonderful. thank you again, Black Doctor, for the invitation to be with you, today. this particular panel, as we have mentioned, is going to discuss ancestry, innovation in oncology, related to generational health. many of us come to oncology from a science perspective, and research as well, but a lot of us also come to oncology due through the personal, experience with either family or friends.

I'll start by introducing myself. I'm Kerry Gober. I'm the Chief of Staff of Research for the American Cancer Society. I have the esteemed pleasure to moderate this amazing, panel. And so I'm gonna jump right in and allow them to start. Matt? Give me 30 seconds- Oh, sure 'cause our fifth is on the way. Sure.

They said it was a break. That's the fastest break I've ever seen. Thank you. Just one more time. Okay. Sure. We'll pause. Yes. Okay. So Matt, you'll kick us off with introductions. Yeah, sure. So my name is Matthew Zachary. I'm a 30-year I'm one of the few privileged people who get to say I'm a 30-year pediatric brain cancer survivor, diagnosed in 1995. Odd thing to get applause for, but thank you. You're alive. I was originally gonna be a concert pianist. I was a concert pianist. that got kind of shot to shit 'cause the brain messed everything up. Plan B became plan A when I didn't die, and I wound up working in Omnicom for about a decade, back in the fun days when there were fax machines.

And, I, I bumped into Livestrong kind of by accident in the heyday, and I met one of my best friends, Tamika, during that process. And I got, I was asked, "How would you like to be a cancer advocate?" And I said, "What the hell is a cancer advocate?" This is 2003. And they s- kind of more or less said, "You can help make the next you have a less crappier time." And I kind of accepted that. this was before the internet. Like, "All right, w- what can I do?" And in just getting to meet my tribe, getting to meet my, my gaggle, this, this Gen X crowd of sort of angry uses, it inspired me to start a nonprofit, which I don't inspire people to do these days, called Stupid Cancer, which was irreverent for 20 years ago.

Today it's fairly commonplace, but it was really this, this sort of this spark of a national, sort of a generational patient rights movement.

and it really took off, and this phenomenon, it changed the planet. It was a privilege to do that. And I was Someone, someone gave me a microphone before there was an internet and said, "Talk to the internet." I said, "Who's listening? Doesn't matter." And I'm officially the host of the world's first healthcare podcast, back in May of '07 when it was just like you had to dial up and hear that screeching sound and hope you can hear me over a 24K bit stream. I stepped down in 2019 after leaving the organization, and I'm now a n- a new author. My book's coming out, May 19th from Wiley.

It's called We the Patients: How to Understand, Navigate, and Survive America's Healthcare Nightmare, as appropriately as you'd think a patient voice would have from this perspective. And, I do a lot of talks and keynotes and consulting, but mostly I'm f- and I still do my podcast called Out of Patience now. And, I'm It's a privilege to be here, so thank you for having me. Araya? Wow. It's hard to follow that. I don't, I don't know if that's fair, really. I'm Araya Corley, the Head of People for Black Doctor. My career has been dedicated to both wellness individually and in the workplace.But my mission was built through my life as a daughter.

By the age of thirty-four, I'd buried most of my immediate family to cancer. My journey started at eight, watching my mom fight AML, acute, I'm gonna mess up the second word, myelogenous leukemia. watching her go through bone marrow biopsies and, watching her be in sterile environments and talking to her through plastic bubbles at times.

decades later on Thanksgiving Day, I found out my father was terminal with stage four lung cancer. So that is my introductory to this panel and who I am. Joy? Hi. I wanna thank, USA Today and Black Doctor for hosting this summit and for the opportunity to be part of this conversation. I'm Joy Jones. I'm, an executive director of the WIN Award program, which is a national program that was created to increase representation in clinical research to ensure better science for all. but for me, as an adoptee with no medical history, my connection to ca-- to oncology is kind of a blank slate, which became more of a personal call to action after losing, my brother-in-law to pancreatic cancer after just three months from his diagnosis.

So I think about my son, who, you know, inherits a medical history from his father, but a mystery for, from me, which makes pro-- proactive, inclusive research, kind of his, his safety net. And so through the WIN Awards, you know, we are looking to ensure that all generations, regardless of ancestry and, zip code and income, have access to and can benefit from all of the, medical breakthroughs of medical innovation. And Tamika. Thank you so much. So I'm Tamika Felder. I am a Woo. I was diagnosed with cervical cancer when I was twenty-five years old in two thousand and one, and I started an organization called Cervivor, spelled C-E-R-V-I-V-O-R.

And I wanna thank Black Doctor, USA Today, my friend Matt, for having me here. And like you heard from other panelists, I lost my dad to colon cancer, my mom to multiple myeloma, and many other family members have been touched by cancer.

So to say I have my own personal war with cancer and wanna spread awareness is a very true thing. So we're gonna jump right into our panel and ki-- and discuss a couple of different things, related to what does advocacy mean in twenty twenty-six, and beyond. also the shaping, outcomes across generations, and also just the practical, experience for patients, families, and the community in this complex healthcare environment we're in. I wanna start with, Matthew. again, you mentioned your book, We the Patients. What prompted you-- I know you shared a little bit in your introduction, but what prompted you to write the book?

what gave you that inspiration? The dimester answer is it all came from my work with Stand Up To Cancer. Stand Up To Cancer was Stand Up's like secret little brother when it got started in two thousand and eight, and we did a lot of work with them helping get Gen X to buy into what they were trying to accomplish. and then just meeting the council of founders and working with Hollywood. That sounds so cool. It wasn't that cool. I met a lot of people who live and work in entertainment, publishing, marketing, media, and they're the ones that encouraged me a couple of years ago, that I should write a book.

But I learned, like, being a theater kid, they explained it to me like I know this shit. It's not about what I wanna say, it is what does America need to feel? What does the country need to read and hear? And I wanted to build-- write a book. My, my writer, my, my collaborative writer, she-- Her-- Jen, where are you?

Shout out to Jen Singer. Hey. Fellow rock star, cancer survivor, award-winning ghostwriter, and author. like, I think America's first mommy blogger, if that's correct too. Yeah, so lots of pedigree there. We wanted to write a book that I think told our story, like the collective story of the angry cancer patient, of the angry American patient. And not that American healthcare is broken, but it was built this way. And there's a historical component going back to the nineteen tens about where it all started with Teddy Roosevelt, takes us through civil rights and the Orphan Drug Act and the HMO Act, and it's a bit of a history.

It's a dark, sardonic, Gen X funny comedy book, if you can try to figure out how that gets funny. But, there, there were no patient books on the shelves about the story of us on the receiving end of care, getting mostly disabused by a private sector system where, yes, profits over people. This isn't an anti-capitalist strategy. It's really giving everyone permission to be pissed about what it is here. But I always felt like there was a separate call to action, going back to where I wanna hear what everyone else thinks about the word advocacy, that we've done plenty of advocacy.

No one doesn't know cancer exists. No one doesn't know, right? I hate double negatives.Where I feel we're at a point in this country, tipping point-wise, especially since as we wrote the book before all the terrible things that have been going on, we had to like constantly adapt the book to the moment to moment, is I feel it's time for the country to organize the cancer community not as a PAC, but a voter bloc.

So I'm on a mission now for the next four years to build America's first cancer patients' rights voter bloc, and that's the purpose of the book. Awesome. I think that's worthy of That is really awesome. we know that our cancer experience, looks different for all of us from generation to generation. and this question is for, Tamika. You sitting in a seat as an advocacy leader, what guidance or what, what things do you think that can impact the future? Well, I think especially with our community, we have to share. We heard it earlier today, share. If someone asks me, you know, did I have breast cancer in my family, I think, "I know I have a cousin, but I know maybe somebody else," because we don't talk about it.

We grew up saying the C word or, you know, whispering it and mouthing it, and generationally, that's still going on. So we have to talk about it. We also have another hard truth in this country, that until we, not for, you know, anyone in this room, but people outside of here who do not acknowledge systematic racism and slavery and how it's played a role generationally to where health is in this country, until we acknowledge that and talk about it, we're still gonna be stuck in the same places. So it's twofold. I think a lot of times it's us being able to share in safe spaces, not only with our family and friends, but also collectively, but also in this country acknowledging so many wrongs that have been done, and it's been a domino effect generationally.

That's really good.

we wanna get a, a little bit personal with our, experience. I too-- This, this, and I'm gonna tell you a little bit of background about this particular panel. before we were doing our rehearsal, there was just a wonderful connection between this group. so if you, you're gonna see that exude through our discussion as well. but for Araya, we all have experience and know that, cancer is a family story. Yeah. From where you sit, as an employee of blackdoctor.org, tell us about your experience and, how it also is gonna help move, you know, the needle with health and gen-generational health.

When I think about my role at Black Doctor, I think about awareness for health for the next generation and the legacy I wanna leave. I wanna build for my son, AKA my assistant Taylor, that's what I call him, a culture where we aren't afraid to talk to each other. Does he need to worry about cancer? Do I? You know, my mom was incredibly fit, and she took a two-year prognosis and stretched it out to six because she took really good care of herself. I wanna institute new rituals. You know, I wanna, instead of people just saying grace, let's start asking each other questions.

"Did you get your mammogram? Did you get your colonoscopy? What are your numbers?" And really start normalizing those conversations at the dinner table, especially around holiday time, which is when most Black families come together. Let's just not eat. Let's just not give thanks. Let's talk about these things. Too many people are not living long enough to tell their story, especially people of color.

We're living sick, and we're dying young. I'll just, make a quick data update. as you mentioned, we are dying young. the American Cancer Society, we just posted or published our colorectal cancer statistics, and one thing y- if-- that you'll notice in that report is that, colorectal cancer for aging or older adults is decreasing, while younger adults it's increasing. So as many of the other panels talked about, it really starts generational health. We need to be talking about our-- talking to our children now about health, having those conversations in every facet. They're not being taught, complete public health and the things that we're talking today-- about today in their schools.

So we really, it, it really does need to start at home and with our families. Joy, my next question, we're, we're gonna come to you. I know that, again, many of the pa-panels have been talking about access to care, treatment, and things, but tell us a little bit more about what you're doing, in the, in your program with Wi- with WIN Clinical, Pathways Program. Right. So with the WIN Awards, we're actually trying to break the cycle of, of exclusion, with the, I'm sorry, through the Career Development Award for Early Stage Investigator Physicians and the Clinical Investigator Pathway Program for medical students.

We're creating a new generation of what we're calling community-oriented clinical trialists who are changing the way that science comes to communities. so we're teaching them, or they're learning how toAddress the, or how to close the trust gap and the data gap, by building partnerships with communities and understandings, the communities that they serve so that they become participants in the research.

And we're showing some early success from, from the program where some of our scholars', data show that they are recruiting or they're leading trials that are recruiting more inclusive patients or more representative patients than the industry standard. and so with, with that, we are hoping to, you know, set a course for the future where by investing and ensuring that research is inclusive today, it's going to support, better health outcomes for generations to come. Thank you so much. you-- Both Matthew and Tamika, you've already talked about the advocacy, piece in, in depth, but is there anything else, that individually that we can take from this conversation regarding advocacy?

Like the-- what is one thing that you think the people in the room and beyond, that are watching I, I, I-- Through the lens of history, okay, advocacy is now a very user-defined term. I feel like from a per- maybe not a semi-controversial, it's been become bastardized like the word patient. It doesn't really mean anything anymore 'cause we all feel so powerless and hopeless most of the time, which is unfortunate. But there is always gonna be a need to help the next you have a less crappier time, and if that is the baseline definition that we can all live with to sleep at three in the morning, then that's what I would stand by.

That would hopefully give us meaning and purpose in our lives. No one asks to be sick, but the least we can do in our own way of recompense with the universe is help others. That's the basic tenet of Judaism, tzedakah, giving back.

Like, there's nothing better than that as a human being. I'm taking the position in the book and in my talks that activism is collectivism versus advocacy, which is individualism and communityism. I made a word up. Where collectivism is the new advocacy in my mind, and until we organize, and this is America, and this is love it or hate it, and this is democracy, and this is whatever it is. Until we all organize under one, I almost say single issue purple umbrella, that we have the right to be protected from harm regardless of our skin color, regardless of our race or religion.

We have the right to be protected from the harm. The over- the overarching narrative is that indi-individualism and community, I'm just gonna say communityism, you know what I'm saying? Versus collectivism. The barrier that every single human faces, and this is a very American answer, is that no one cares how great things are if your insurance says no. That is the single most defining common denominator of every American, I won't say it in this country, every American, that your insurance should not determine your outcome, and we are not considering that as an upstream beyond our traditional determinants.

Your zip code only matters if your insurance says yes, and that's my interpretation and where I'm taking my thought leadership. Awesome. as you were talking, it, it made me reflect back on blackdoctor.org, their launch brand event, and I may have the, the term of, of that event wrong. But, there was one image, that I remember seeing on the wall that says, "Health is personal." And so when I reflect back over the other panels, you really have to understand and have a good, strong support care team, and sometimes that care team is going to be your oncologist, doctors, but it's also friends and family and, and coworkers.

And just like in many of our relationships, we have to hire and fire sometimes, depending on, you know, who needs to be on your journey. But with that, Araya, the question is, give us some insight on how we share with others how to navigate, how to navigate in the healthcare system. Yes, yes. at Black Doctor, we are truly focused on closing the health equity gap, and that starts with self-advocacy, although it's still communal. We'll use your word. healthcare, like you said, is a complex system. My mother's doctor was incredible. He had to fight insurance companies tooth and nail to get her experimental treatments approved.

But not every patient knows how to navigate that system. Many people in our community, the Black and brown community, are intimidated by these systems because they weren't necessarily built for us, and they're afraid to ask questions. They're afraid to ask for those second opinions. They don't understand their coverage. They don't understand how to find a specialist, especially if they live in a specialist desert. My advice, bring that pushy cousin with you. If you're overwhelmed by a diagnosis, bring the person in your family who isn't afraid to ask those hard questions, who isn't afraid to ruffle feathers.

Demand a referral or a follow-up. Ask questions about your bill. We call this the chief health officer of the family. It's about being an active partner in your own care and not just the passenger. Don't be afraid to ask for the clarity you need. It's your health.It's the difference between being a fatality and being a survivor.

Thank you so much. before-- I'm gonna ask one last question of everyone on the panel, but before I go into that, I'll just t- a short snippet of my own personal story d- which I didn't mention earlier. both my parents, did not survive their cancer journeys. so, and I, I think everybody takes a personal thing that they do, and one thing that I'm doing, I have actually, entered our own study, Voices of Black Women. And so that's how I'm, And if you are eligible for that study, please go on cancer.org for more information. Just a plug there, because we are still looking for other Black women to join, and enroll into that study.

also, one thing that you, each of you, would leave with the au-au-audience now that all the pa-panels are finished and everything that we've collectively heard today, what is one thing that you would like to share, with the audience? Tamika. That individually, collectively, every single story matters, no matter how big, how small. And even when it seems hopeless, you know, identify someone to help you fight. Identify someone to help you get there. When I was diagnosed and my fertility wasn't covered, I ended up fighting the state of Maryland and my insurers, and I got denied.

But a decade later, I changed the law in my state, and I'm helping to change the law others. So it's bittersweet because it won't help me. Thank you. But it'll help generations to come. So also think that what you're doing, unfortunately, may not help you, but it may help the next generation and the generation afterwards.

It matters. Yeah, and that speaks to, how I've defined advocacy, which is if you do it right, no one knows. No one knows that you fought for these rights. No one knows that I built Stupid Cancer so young adults can have a voice. I don't-- We don't do it for guts and glory. We do it for the downstream. please buy my book. I'd be- Buy my book. I, I, I would be excoriated for not demanding that I would, would say that to you. But in all seriousness, please start paying attention to the narrative around patients organizing in America. There are PACs, there are lobby groups, there's no voter block, and we care about one thing: Your insurance shouldn't determine your outcome.

Man, I, I wanna leave with a couple of different things. Thank you. number one, take care of yourselves. If there is a yearly annual, take it. Go get it checked. Ask your mom, ask your dad, ask your cousin, your best friend, your sister, everybody. We need to make sure that we're taking our health seriously. You're gonna have to spend on your health. If we can spend on so many other things, we can spend on our health. So I wanna make sure that people are clear. Get your test taken. Secondly, if you are unable to advocate for yourself, bring that person who can do it for you.

Bring the person who's not afraid to throw a couple of chairs in the doctor's office. Wow. You know? Like, that is really able to ask those questions because those are the differences between life and death. I, I really think it's important that we have to ask those tough questions.

We have to ask for second opinions, and we need to advocate for ourselves because no one is going to save you. Say that we're in a time where the possibilities for medical, breakthroughs in science is incredible, but that's only, that's only gonna have so much impact if it's effective and accessible to all communities. And so we wanna get to a time where, you know, our slogan for WIN Awards is "Better Science for All." But that's not just a slogan, that it becomes the standard of care for all communities. Thank you so much. insurance nor zip code, as we say, should affect your health.

We appreciate you, and thank you, panelists. Thank you. Thank you. Thank you. Testing. All right, everyone. You made it. You made it to the end. All right. As we close today, and before we go into our networking hour, I would just please ask everyone to stand up. Please, let's gather close in the middle. Come on, you've been with each other all day. All day. Y'all can come close to each other like you, like you know each other. Come on, bring it in, bring it in, bring it in like family. All right, the left side knows what to do. Come on, come on over here. Come on, come on.

Yes. Yes. All right. As we close out today, there have been many words, many phrases, many tools that have come across this platform today of things that we can use. But there has been one overarching theme through it all that could be summed up in one word. That word is together. There has been a spirit of togetherness that we've had today, so we wanna keep that going.

So a- can everybody say that, together? Together. People in the back, say it together. Together. Together. So how do we do this thing? We do it Together. Oh, man. Now we talking. Yes, yes. How do we build healthier families? Together. How do we move forward? Together. How do we change laws? Together. How do we make patient stories stronger? Together. How do we build a better community? Together. Remember that as you go into your respective jobs, your respective communities. We do this thing together. Remember, today is not an end. It's a start of some beautiful relationships where we will build some incredible things together.

Thank you. You are dismissed into our reception hour. Thank you for coming out.