Podcast - Talking Sickle Cell Trait with NFL Wide Receiver Ty Montgomery and Dr. Anjulika Chawla, MD, FAAP

Shawna Watley: So hello, everyone. Thank you for joining us. Welcome to the Holland & Knight's Public Policy and Regulatory Group Eyes On Washington Podcast in partnership with the Black Women's Health Imperative and bluebird bio. We welcome you to our third podcast in a four part series on sickle cell disease. I have my two co-pilots with me today. Sonya with bluebird bio, as well as Tammy Boyd with the Black Women's Health Imperative.

We're going to jump right in. I'm really excited about this particular podcast. I'm a huge football fan and we have a special guest with us today, a gentleman by the name of Ty Montgomery. Ty has sickle cell trait and he is a wide receiver for the New Orleans Saints of the NFL. We will also be joined by Dr. Anjulika Chawla, senior medical director of medical affairs at bluebird bio and a practicing Pediatric Hematologist Oncologist of 20 years at Hasbro Children's Hospital in Providence, Rhode Island. A professor of pediatrics at the Alpert Medical School at Brown University. Welcome to you both. Thank you, Dr. Anju and Ty for joining us today. So Ty, I would like to talk to you a little bit about sickle cell trait. What have been some of the challenges that you face playing professional football while having sickle cell trait?

Introducing Ty Montgomery and his Experience Playing Football with Sickle Cell Trait

Ty Montgomery: Hi, thank you for having me on. I guess the most apparent challenge for me is sometimes I struggle keeping up with other guys when it comes to workouts. I fatigue a lot faster and when I do reach my peak, my body shuts down quicker than everyone else's. Not only do I fatigue quicker, but once I do fatigue, my performance and my optimization levels actually drop very quickly. And that's been a challenge for me. The hardest part of my workout is actually preparing for my workout. Making sure that I have enough fluids, enough hydration and that I sleep enough. A lot of guys, you know, especially in college, they go out, they drink and they can stay up till 4:00 in the morning and then go get a workout in. It's not a big deal for them, but my body will quite literally shut down if I do those things. So for me, it's just preparing for a workout and just making sure that I don't fatigue, but it's a challenge because I will fatigue quicker and my body will shut down.

Not only do I fatigue quicker, but once I do fatigue, my performance and my optimization levels actually drop very quickly.

Shawna Watley: Wow, so can you share with us when you found out that you had sickle cell trait? I know for instance, just personally, my husband and my daughter have sickle cell trait, but it was my understanding that it didn't really mean anything. It was like, oh you have the trait, but you're good. You're good because you don't have the disease, but just hearing your story, clearly that's not the case. I would love to hear when you found out and was it through sports or when you were a child?

Ty Montgomery: It was definitely through sports and I found out when I was in college. When I found out it made sense. I was blessed to have a training staff and a team of doctors at Stanford that wanted to test the black kids on the team and educate us about what this means and what this is. When I was in high school, I was hospitalized twice for full body cramps. My body would still cramp even if I drank three or four pedialytes before the game. I mean, my pee would be clear, but my body was still cramp and I would get in trouble by my high school coaches. I just always felt like it was my fault, something I was doing wrong and I couldn't understand. But once I was told I had the trait, then it all makes sense to me. I'm extremely thankful that the people at Stanford who educated me. They really helped me a lot because it's more than just drinking enough water or making sure you're hydrated before the game and checking the color of your pee. You really have to make sure you get enough sleep and you're eating right. You really have to live a different lifestyle in order to perform consistently.

Introducing Dr. Anjulika Chawla and her Experience Treating Patients with Sickle Cell Trait

Shawna Watley: Dr. Anju, I see you shaking your head. Is this something that sounds familiar to you? You must hear a lot of this, particularly being a pediatric doctor.

Anjulika Chawla: Yeah. So especially in my earlier days when we didn't have newborn screening, many of my folks didn't know they had sickle cell trait or sickle cell disease and went off to play a sport. And again, we have stories of some of our kids who say their teammates just felt that they were weak. They didn't belong there. Why were they trying to keep up? And it's one of the questions that I actually have for Ty, which is once you found out that you had sickle cell trait, were you ever guided to not play sports or football? If so, how did you respond to that? Because my belief is everybody should have a shot and you don't know what your body can do until you try, but would love to hear what you heard and how you responded.

Ty Montgomery: I guess I'm just blessed because I never had any coaches at Stanford tell me not to play or try to limit me. The only thing that was done is they put a program in place for guys with sickle cell trait. And like I said, they educated us. So we all knew that not every case or every guy would be the same. Our triggers would be different and our body's response to exertion would be different. It was up to us to buy into the process and really listen to our bodies and do what was right for ourselves. And I did everything I could to listen because I wanted to play and I wanted to keep up. But I will say it was definitely tough and I try my best not to talk about it because I didn't want my teammates to look at me differently.

Shawna Watley: Sonya or Tammy, did you have any questions for Ty or Dr. Anju.

The Importance of Donating Blood and Bone Marrow

Tammy Boyd: Ty, can you talk to us a little bit about your work with your foundation, the Be The Match campaign and the National Donor Match Foundation. Why is it so important to you to encourage people to join the registry to help fight sickle cell disease and leukemia?

Ty Montgomery: I just want to get rid of the stigma that's behind it. I don't want any black kids to be or feel limited by anything that's going on within their body that's out of their control. On top of that, once I learned and I was educated, and I'm like beaten that word to death, but I think it's really important to be educated that black blood is good for black blood. I don't think a lot of us really understand that. I want to do my part to donate in any way I can to try to not only potentially help someone, but also encourage others to help each other.

I just want to get rid of the stigma that's behind it. I don't want any black kids to be or feel limited by anything that's going on within their body that's out of their control.

Anjulika Chawla: Thanks, Ty. And that is so true that with most blood donors, as well as bone marrow donors that are out there in the registry are of Caucasian descent. And so when trying to find a match, it makes a lot of sense to have folks of either African-American descent or of any color to really be involved in the registry to open up that pool of donors for people to have a match. That's why right now, bone marrow transplant is one of the only known cures for sickle cell disease. So having that matched pool is so important and people of color need to step up and they need to donate blood and they need to register to be able to donate marrow. It's so important.

That's why right now, bone marrow transplant is one of the only known cures for sickle cell disease.

Educating the Community

Shawna Watley: Thank you, Dr. Anju. Ty, you have colleagues in the league, and given the statistics, I would imagine there has to be other players that have sickle cell trait, or I don't know, maybe there's some with sickle cell disease? I would find that to be incredible. But do you all have a community within the NFL?

Ty Montgomery: Unfortunately, no. I wouldn't call it a community. I do know of some guys with sickle cell trait, but I don't think it would be a bad idea to create a community so that we can help one another. I had a teammate who has trait and he really struggled and he saw the way I was able to perform. So he had every question in the book on why I was able to perform and why he couldn't. He was just never educated on how he really has to live a different lifestyle. It goes beyond, you know, drinking a liter of water before practice or feeling hydrated. I mean, it even boils down to stretching, body maintenance and preparing your muscles to exert themselves. It's not enough to just think you drank enough to be hydrated. Your diet also has to be different. Most importantly, like my strength coach at Stanford used to say, "you also have to sleep hydration as well." Your body's ability to recover comes from the amount of sleep and REM sleep and all of that scientific stuff that goes into, you know, sleep studies. So any time I get the opportunity to do that, I definitely take advantage of it because there's a lot of talented individuals who either feel limited mentally or physically that just aren't able to perform because they don't know.

Shawna Watley: Wow, that would be awesome. Thank you for your leadership. It just seems to me that because it's something that is so prevalent in our community that hopefully there will be an opportunity for there to be a community and special doctors or consultants that can provide additional support for you all because your body is what allows you to do what you do at such a high level. So thank you for your willingness to get out here and educate folks, particularly young children. What kind of advice would you give a kid who is seeking to play sports and is diagnosed with sickle cell trait?

Advice for Kids Playing Sports with Sickle Cell Trait

Ty Montgomery: I would say, don't be alarmed. The way I try to explain it is... I don't even like using the word disability, but I know that's the word that they use in school. It's like the kid who has a learning disability, so he goes to the extra office hours and he gets extra assignments or extra time on a test or whatever that may be. I have to carry that over into my body. I have to take an extra 15 minutes before practice to prime my muscles and to prime my body. I have to go to bed an hour or two earlier, or I have to be sure that I take an extra nap or I have to be mindful of what I'm eating. It's just all about going the extra mile and not cutting any corners so that your performance can be optimized. We sickle-cell trait narratives do not have the luxury of, oh I pulled an all nighter last night and I didn't sleep, and it's not a big deal. I'll just go work out and I'll power through because powering through for us could be a hospitalization. It could mean rhabdomyolysis. It could mean full body cramps. It could mean pulling a hamstring that you normally wouldn't pull. So I would just say you have to be really diligent and disciplined, and that's the advice that would get give.

It's just all about going the extra mile and not cutting any corners so that your performance can be optimized.

Shawna Watley: And that's advice really that most athletes should be doing if they want to have a long career, particularly in football. Those are steps they should be taking regardless. I know Tammy wanted to follow up with a few questions as well.

Tammy Boyd: I was just going to say that's great advice, Ty. I know one of the things we are partnering with Ty in terms of educating around sickle cell is we plan to work on pulling together a sort of a resource guide for individuals playing sports around sickle cell and sickle cell trait. But Ty has just been an excellent advocate and has really been educating the community and working in partnership with Black Women's Health Imperative.

Shawna Watley: Dr. Anju, can you just break down for us a little bit the difference between sickle cell disease and sickle cell trait?

Sickle Cell Disease vs. Sickle Cell Trait

Anjulika Chawla: So with sickle cell disease, it means that you have two copies of a gene in the hemoglobin gene, which is a protein that carries oxygen through the blood. It's actually what's in red blood cells to make them red. But you have two copies of that gene, and with folks with those two copies of that gene, all the hemoglobin that they make is abnormal and it functions fine. It works well unless the oxygen levels go low and oxygen levels can go low when you're at high altitudes, if you're scuba diving, doing extreme athletics, if you are having an infection or a fever or, you actually get dehydrated. That is why we emphasize hydration so much so when the oxygen comes off, then the hemoglobin stacks on itself and causes cycling of the red cell and that cycling red cell is what can get stuck in the muscles. It can get stuck in the bone, and that's where the pain can come from. That's where cramps can come from. When you have sickle cell trait, instead of having two copies of that gene, you only have one normal copy. So with that being the case, only half of the hemoglobin in the red cell is actually sickle and the other is normal. So in that case, the amount of breakdown that those cells go through is much, much, much, much less. It used to be that we would call this a carrier state, where the gene itself didn't cause problems or disease in the person unless it was paired with another gene. So this is because it's part of the gene. Therefore, this is a genetic disease. So two people with sickle cell trait come together and if they have a child that has two copies of S genes, then that child will have sickle cell disease. If they get the copy of the normal genes. Then what you may see at that point is what they call AA or normal. However, there's a two out of four chance that the children would also carry sickle cell trait. So that's the difference. I will say that sickle cell trait is no longer being looked at as something that is completely benign and only a carrier state, because like with everything else, there's a spectrum. And most people with sickle cell trait have no problems. They don't notice anything. They they get on their lives with no problems. But when people are really pushing their hemoglobin to the limit, such as an athlete at this level, then it can cause problems. And so it's one of those things that you have to prevent those problems. You really have to take some extra steps to keep that hemoglobin oxygenated so it doesn't sickle.

Shawna Watley: Oh that's very helpful because as you just stated, I always thought it was kind of a benign state like, oh, you have that trait, but you don't have anything to worry about. And that's kind of the approach I took with my daughter like, oh, she's fine, she just has the trait. But you know, we've been fortunate enough this last year that there's been so much more education. There was a series in the New York Times about sickle cell and sickle cell disease, and that's when I realized maybe I should pay a little bit more attention to this. She's a ballerina, so I don't know if she's putting out as much exertion as you are on the field, Ty, but I will definitely continue to keep watch. Sonya, I thought you may have a question or two that you that you wanted to address?

Sonya Elling: Sure. I wanted to also compliment and give tremendous applause and praise to Ty for all that you're doing. I know one of your mottos is, as living to love or live love, and I just think all that you're doing in regards to help educate and use your voice and use your status as a tremendous football player to help educate folks on sickle cell trait and sickle cell disease really needs to be recognized. So just wanted to thank you for that and thank you for your positive life message, and I think you started your own podcast too. But I just wanted to say thank you. Anju, I also did want to ask you about the work that you're doing, obviously through bluebird bio and then as a practicing Pediatric Hematologist Oncologist, but what do you see on the horizon? I think we finally have seen there's been some improvements and some new treatments available for people with sickle cell, which are helping address their quality of life. I think there's quite a few things potentially on the horizon and potentially some curative treatments. I would love to hear a little bit more about that from the medical perspective, if you can give it to us in layman's terms.

New Treatments and Potential Cures on the Horizon

Anjulika Chawla: We're learning a lot more about sickle cell trait. It's one of those things that I want to echo what Ty is saying. As far as it's important to know that you have trait and it's important to make the changes and do what you need to do to keep yourself healthy, as well as understanding what you can pass on to your children. And just to be aware that it's not a life sentence. It's not a terrible thing to have, but there's things that you can do to make your life better for longer with sickle cell disease, where you have two copies of that S gene. Folks have a lot more difficulty and at a much younger age. And what's been really exciting that Sonia is pointing out is that there's been so many advancements over the last 10 to 15 years. They were really focused on newborn screening, education, immunizations. Then we had one drug hydroxyurea that came out to increase alternate types of hemoglobin to help dilute out that hemoglobin S. What's been really exciting is that over the last three years there's been finally new medications that really direct against different aspects of sickle cell disease that have come about. These are ongoing medications. Other advancements that are happening as well are things like bone marrow transplant. We're getting much more understanding. Many more people are undergoing bone marrow transplants. There's been advancements in preventing complications of transplants, such as Graft Versus Host Disease (GvHD). And so there's a lot more hope about using transplant for curing sickle cell disease. Then finally, again, with what bluebird bio is working on, as well as other companies as well as other academic sites, is gene therapy for sickle cell disease. In this case, what we do is we take the blood stem cells, the cells that are in the bone marrow that make red cells and actually change genes to counteract that hemoglobin S gene. When that happens, you take those stem cells, you put them back into the body and when you do that, hopefully the idea is you'll get a healthy red blood cell forming out of those blood stem cells. Hopefully with that, we can either turn people to having no sickle cell disease and maybe even shifting them into a more of a carrier state. That's kind of the hope. There's so many things that are happening for sickle. This is the right time for everybody to become more aware of both sickle cell trait and sickle cell disease and what's out there and what can be done.

What's been really exciting is that over the last three years there's been finally new medications that really direct against different aspects of sickle cell disease that have come about.

Closing Remarks

Shawna Watley: Thank you again, Ty for your partnership and collaboration. If folks want to learn more information about sickle cell and also Women's Health Imperative (WHI) you can go to www.bwhi.org.

Sonya Elling: I will triple echo everybody's praise of your Ty and your leadership because I do think it's so important, critically important, especially for young people who obviously look up to you and can see that there's all these opportunities and things they can still do despite whether they have sickle cell trait or the actual disease. I also love our partnership with BWHI and the work we're doing there and their leadership and trying to help address health inequities and particularly for people with sickle cell. If you want to learn more, I'll send you to www.sparksicklecellchange.com.

Shawna Watley: Well thank you, Sonya. Ty, since you do have a podcast, we love for you to shout it out so our listeners can go check that out when they have a free moment.

Ty Montgomery: Oh man, I was not expecting this at all, but if anybody is interested, I do have a podcast with my friend, my brother, who is also my pastor. It's called Thou Shalt Catch These Hands: What happens when I turn the other cheek. We have a lot of fun doing it. It's just normal conversations that we would have and we decided to record them. We just try to bring scripture into the everyday life into today's time and just try to make it relevant. So we talk about anything and everything, nothing is off the table. We are Christians, but we are not Jesus himself, so we talk about it because we have a life to live.

Shawna Watley: Thank you so much for all that you do and sharing your commitment to helping make sure that others live a healthy life.