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Doctor Ivy has served as the Chief Medical Officer of the Sickle Cell Disease Association of America since November 2024. After several years on the board in vice vice chief roles as a sickle cell warrior himself, he speaks openly about growing up and still living with sickle cell disease, which feels much of his advocacy, trained in medicine in East Carolina University's BRODY School of Medicine and Public Health at UNC Chapel Hill. He spent a decade directing federal hemoglobinopathy programs at H RSA coauthoring the 2014 NHL BI er Sickle Cell Disease Guidelines and later reading outreach for the Possibilities Clinic in Toronto as the Sickle Cell Disease Association of America's Chief Medical Officer. He is a prominent voice on emerging therapies and he oversees initiatives in newborn screening, mental health support, community health worker training and federal policy advocacy. Uh Doctor Ivy, it is a real pleasure to join you today and thank you so much for sharing a little bit about your story. Uh A little bit about your journey and you bring a really unique perspective and I'd love to hear just a little bit about your journey if that's ok, perhaps what it's been like living with sickle cell disease, maybe how that's shaped the person, the physician that you are today and the advocate that you've become. Uh Yes, thank you so much for allowing me this opportunity to um talk to you about the importance of uh sickle cell disease and improving sickle cell disease care. Uh So, you know, as you know, sickle cell disease is a genetic disorder. So I was born with it and it was very difficult uh for me as a child. Um I know I had frequent crises. Um and you know, even as a, a young child, I would be hospitalized for days, weeks, uh some, sometimes even months um with pain crises and, you know, you grow up in a, a family, I had uh three brothers that were very active. Um and when you're not able to be as active or when you have these pain crises that interfere um with participating in activities as a young child. Um It can be very challenging. Um and it can be difficult and it can make you question early on, you know, what am I gonna do with life or, or where is my place? Um in life? I do remember as a young child and I was born in the um early 19 seventies, you know, learning and hearing that individuals with sickle cell disease have a very shortened life expectancy and, and I did have those periods where, you know, I would read or I would hear that individuals with sickle cell disease don't live into adulthood. Um, so if you can imagine the impact that they're being told you won't be able to live into adulthood can have on you. Um, that can make life very challenging. Um, you add on to that the pain crises that I would have. Um, the small stature that I had through, uh, most of my elementary and high school. Um you know, and then I started walking with a limp uh due to avascular necrosis, uh when I was about eight years old and, and the limp became more severe. Um you know, my um the avascular necrosis became more severe. I didn't get it treated uh when I was um in my childhood and, but you can imagine if, if you can, what that does walking with a limp, um can do uh to, you know, your social interactions um as a young child. So, so sickle son has always had a, a great impact on my life um from a very early age. Um you're asking as, as I grew older, you know, it did help me to focus on things I could do as a very uh um as opposed to what I couldn't do. Uh So I recognized early on that um there are certain jobs there are certain careers I cannot pursue or I shouldn't pursue because they require a certain uh physical ability. Um a certain ability to be able to do it with my avascular necrosis with uh my small stature, uh with other um um results of sickle cell disease. I recognize that the, it was impossible to have a career um in certain fields. So it did kind of focus me on, hey, I need to uh do what I can academically. Um If I'm gonna have a career, I need to focus on um achieving um in the classroom. Um I, if you will, I II do think that what having sickle cell disease has given me um as a provider, as a doctor. Um And as someone that has worked in public health, uh that impact that um your social determinants of health can have on your ability to deal with disease. Now, uh if I may, you know, sickle cell disease um does have a lot of stigma um associated with it. Um I have had incidences where I have been accused of drug seeking. Um And it wasn't always a direct accusation that, oh he's here drug seeking, but it was sort of you could kind of feel uh the tension um of getting certain medications provided to you or getting uh certain treatments and therapies. And then there was always that underlying aspect of, well, you know, this community is already disenfranchised and this disease primarily affects this community. Um So having access to resources or ensuring that the resources are available for this community and this disease state um present a lot of challenges also. Um So growing up as an African American and I did grow up um in a family that we were very poor, um We depended on uh governmental assistance. Um You know, you, it allowed me ha having this disease allowed me to see uh the impact or the, the interplay between having a chronic disease and having um certain environmental aspects um and how those things happen. So it, it gave me that, that view, that we can't just address the disease alone. We have to figure out how do we break down barriers that exist to? Yes, we address the disease, but we also address the individual with the disease. Um If I may say, you know, um when I was born in the early 19 seventies, life expectancy uh for a child born in the United States um was 8 to 10 with sickle cell disease, was 8 to 10 years. Uh individuals now live well into their forties and fifties. And if we look at what has allowed individuals to have AAA longer life expectancy, it's, it's um access to um penicillin, prophylaxis, it's access to um uh transcranial Doppler, ultrasound to screen for stroke risk. It's access to drugs like hydroxyurea. Um But as we're allowing individuals to gain access to those therapies um and live longer are we also um looking at what we have available for that individual in terms of career uh development in terms of um if I may say living the American dream. Uh And so we often focus so hard on, hey, I wanna make sure I'm treating the disease that we then fail to treat the individual. And I think that having sickle cell disease, living with sickle cell disease and the stigmas that come with it have allowed me to really take a view that it's important to make sure that we're not just addressing the disease, but we're also addressing the individual. I mean, that's so important, isn't it? And, um, and you have had an in, you know, an incredible journey and, um, and, and you're able to articulate a really unique position, um kind of on that point, you, you, you can you recall a, a kind of pain crisis or a clinical milestone that has, you know, cos that's the disease, right? It, pain, pain, pain, crisis, clinical milestone, that's redirected your career path. Yes. And, and there is one that I always, um really go back to. So, um I, II if, if I may, I'm gonna mention too, um the, the first one was that, you know, very young in, um, in my very early years. Um I lived with my stepfather who was in the Air Force, um, and during my um younger life with my stepfather and my mother, um I would seek care, you know, at the hospital, uh, when I got sick, um my stepfather and mother divorced, I went to live with my grandmother um in North Carolina and she grew up with a different world view. Uh She grew up um in a segregated South where individual African Americans were not allowed to go to the local hospital. Um if they got sick, um they have to, you know, they, of course they were doctors um in the black community but, you know, the hos going to the hospital was not an option. Um And so she can WW, while I was living with her, I didn't really go to the hospital as, as, as I should, I didn't really seek out that care and, and she would take kind of take care of me at home.