Like in US, UK, we aim to push survival chance of sickle cell carriers in Africa to 90% —Sickle cell survivor/US-based medical doctor, Titilope Fasipe

•Speaks on her team being among top five finalists for MacArthur Foundation’s $100 million grant

Nigeria-born Dr. Titilope Fasipe and her team at Texas Children’s Hospital, United States, are working to integrate sickle cell disease care into Africa’s primary health care systems to save millions of children. Their project was recently named a top five finalist for the MacArthur Foundation’s $100 million 100&Change grant. In this interview, she discusses the achievement and sickle cell issues with LASISI OLAGUNJU, SADE OGUNTOLA and TAOHEED ADEGBITE.

Congratulations on your team being a top-five finalist in the 100 & Change Competition. How did it feel when you first got the news?

Thank you so much for this opportunity. I first want to say this is a high honour, especially. And honestly, I’m so grateful that there’s such a warm response from the Nigerian community and the Nigerian Tribune team. And so, I wanted to say personal thanks to you and also to my brother as well. I am very, very excited. In some ways, I can’t even believe it. What seems to me like a problem that has been an enormous, long standing ancient problem, something that I care about so much and that’s all I think about, suddenly, it’s raised to this attention on such a major scale. And so, I am filled with gratitude and I’m, like, also surreal. Like, I can’t even believe it at times. So, we’re just grateful for the opportunity to have made it this far.

You’ve been on this journey both personally and professionally. Can you take us back to when you were first diagnosed? What do you remember and how did this shape your early life?

Many people may be aware that in Nigeria, we don’t have universal screening for sickle cell disease. Sometimes you’ll hear of some states or local communities trying to do screening, but in general, it’s not something that’s countrywide.

I was born in Lagos in the early 1980s, and they definitely did not have newborn screening or any kind of screening to detect sickle cell in a child and a baby. So, my parents were surprised, like many other families, when their child starts getting sick. They don’t know what’s wrong with them. They take them to the hospital, and that’s when the diagnosis is made. So, because I was so young, I was one year old, I don’t have the memory of being diagnosed. I just have what my parents have told me. Now, I’m their firstborn child, and they are people of faith. My dad is a minister, a retired minister. My mom is a retired nurse. And so I think once they found the diagnosis, one that causes a lot of pain for many, they just turned it over to God.

They gave me my name Titilope (Forever grateful), because even with all that you know, they were going to use my name so they named me before they knew about sickle cell, but even afterward, I just kept on seeing my life as a testimony. And so, I would say my earliest memories with sickle cell disease involve that pain, knowing that I’m different, but then also having the physical pain that comes with the disease. And that’s just all I ever knew. So, it wasn’t abnormal to me. It was just this is my life, but I couldn’t understand why I was the only one among my siblings that had it.

But in general, I moved to the United States first when I was very young, when I was three. But then we moved back to Nigeria, to Ogbomoso when I was 11. And that was when I finally met other people like me. I finally met other people with sickle cell disease as well.

But for the first 10 years of my life, I was the only person with it and I felt isolated.

Well, that was at Ogbomoso. Are you from Ogbomoso?

Yes. My family house is in Ogbomoso. My dad was ministering in Lagos. He had been in both the Akoka area and Yaba Baptist Church at the time I was born. So, that’s why I was born in Lagos, but I claim Ogbomoso as my hometown.

My maiden name is Ishola. My dad is Reverend Dr. Solomon Ishola, who happened to be one of the Baptist denomination leaders, for a time. But before that, he was just a young pastor during those early times.

You went through medical school very quiet about your condition, then you changed. What made you decide to start speaking out about it?

There is a lot of silence, stigma and shame; all those s’s related to sickle cell disease. And I noticed in Nigeria, it has one look. In America, it has another look.

In America, sadly, the shame and silence comes from it looking like a black disease and also being associated with drug use or people misunderstanding the pain. And so, I, in my medical career, didn’t want anybody to ever think I was a drug abuser or that something was wrong with me. So, I had never been ashamed of having sickle cell disease until I entered medical school and saw how people were treated when you have sickle cell disease. It’s not good.

And so, when I saw that, I told myself, from now on, you only tell very few people because you don’t want people to make assumptions about you or your life and how I get my treatment. In Nigeria, the shame and stigma is of a different caliber, and is not related to racism. It’s related to just the sadness of having a child that you’re worried may die young. And then you also don’t want your family to be associated with that stigma that, oh, this family has sickle cell disease, so their children will die young or this person is going to die young.

And I think people become silent about it because there’s so much pain associated with it. So, the stigma comes from different angles and then the stigma of being sick as well. It took me time to realise, to find my voice again because it’s like I cannot stop being myself. I have sickle cell disease. I can’t change that fact. So, how do I have that and still do my career and still be who I am? And I slowly learned the power of advocacy by meeting individuals in the community who were sharing their stories and why it was important for them to share their story. But in short, I developed the shame because society was the one that promoted the shame to me. And then I had to find my voice by going into a community of people who understood me. And that’s when I realised that there’s a power to telling one’s story.

Let’s talk about the $100 million grant and the vision ahead. Doctor, if your team wins this grant, what happens next? What will be the first big step?

Let me start by giving a little bit of some history. As you may be aware, there are several projects in Sub-Saharan Africa related to infection, like malaria, HIV and tuberculosis (TB).

And that’s wonderful. But there’s fewer support for chronic diseases, such as sickle cell disease. And so there have been groups that have tried to do sickle cell projects and in fact, there’s many, but most of those are focused on research questions, very limited scope projects. So, I was talking to my brother earlier that basically you form an oasis in a desert, but only people who go to the oasis get support. It’s not something that’s sustainable.

It’s not something that the whole community can benefit from. So, I will say that the most important thing about any project is: are the people that you’re serving represented at the table? I think our institution’s focus on sickle cell and other conditions changed when they had Africans at the table. Because, the leader of this effort is a man who was born and raised in Uganda. I’m from Nigeria.

There’s another gentleman on our team from Nigeria as well. And we knew the difference between going and building an oasis like, you know, a European, an American going and saying, oh, we want to help Africa, as opposed to saying Africans want to help Africa. We thought about the problem differently and they had already started doing some work to try to ingrain the community in the efforts for sickle cell and not just build an oasis or a castle and say, okay, we’re helping you, but actually go into the community. And that effort involves understanding that Nigeria’s healthcare system and also, many of the countries in Sub-Saharan Africa, have a primary, secondary and tertiary viewpoint of health care. Primary: where your local communities get support, vaccines, medication and general care. Secondary: maybe a bigger area that’s a regional or to the city. And then tertiary is maybe a place like in Abuja or Lagos or a big city that can do the sub-specialised care. You cannot expect somebody who lives in a small town or small village to get tertiary care every week or every day, but they can meaningfully get care from their primary side. So, that’s what this project is all about. The project is to take lifesaving intervention away from the tertiary, take it away from the oasis and the special places, but spread them to a point where you can get it at the primary level, so that it’s actually sustainable.

And the only way to do that is by partnering with the government, the Ministers of Health of each of these countries. What makes this project special is that it puts the people first, and it recognises the daily lives of so many Sub-Saharan Africans, in general, but then also those with sickle cell in particular. That’s kind of the basis. And that’s the question, why haven’t we been doing this? We are now wanting to make sure we no longer have an approach, that’s an isolated approach to only help a few people, but one that’s as expansive as possible.

And before I pause for the next question, and I want to elevate the African CDC at this point, because we saw that once the African Union decided to have a Centers for Disease Control and Prevention, I know most of us think of the CDC as communicable diseases, but they can also help with prevention of the chronic diseases such as sickle cell disease. And so, when we approached them with this project, they were very excited because they have the ability to go into the countries and partner with the government in a meaningful way. So, it’s not me, Titilope at Texas Children Hospital telling you that this is the right thing to do. It’s a partnership. It’s all of us learning together and working together to help solve this big, big public health problem.

Can we paint a picture now? 10 years from now, what will success look like for a sickle cell patient in Africa because of this project?

I love that question so much. Thank you so much. I’ve been dreaming about sickle cell for a long time. As I mentioned, it’s what I do. I don’t think everybody with sickle cell has to be an advocate or whatever, but for me, that’s what God made me. So, all I do is think about: how do we make the world a better place for individuals with sickle cell disease? And the question I frame actually is if people who are familiar with the sound of music, when they say, how do you solve a problem? Like, Maria, that song, I’ve always sung to myself, how do I solve a problem? How do we, as a global community, solve a problem like sickle cell disease? Because it’s a big, big problem.

And so success, to me, would be recognition that there are actual, simple, tangible ways to help your child live to adulthood. That’s the first big myth. Many people, once they have a child with sickle cell disease, they’re already crying over that child as if the child is already gone, but there are ways to preserve life in that child. We have evidence that you can do so. And they’re not difficult. There are medicines to prevent infection. There are also medicines to prevent the damage that sickle cell causes. And that medicine is called hydroxyurea and there are other interventions that are basic, that just need to be given a light. I’m hoping that one awareness, giving up the myths of the ‘Abiku’ and the ‘Ogbanje’, like, letting us know that we can move into a new direction when it comes to sickle cell disease. That the first thought would not be death, but the first thought will be hope. I also want the medications that I’m discussing to be accessible. Most of them, like vaccines and penicillin, are pretty accessible.

Hydroxyurea, we want to change the face of the game. We want Africans to be producing hydroxyurea. We don’t want it to be shipped from random countries. We want it to be something that’s actually affordable for the everyday Sub-Saharan African. And three, I want to see the mortality change.

That’s what we told MacArthur. We’re like, we can save lives. So, right now, if a child is born with sickle cell disease in Sub-Saharan Africa, they have a 50 percent chance of dying by the age of five, 50 percent chance. That’s the toss of a coin. So, how do we change that to be 90 percent survival like it is in the United States of America and like it is at the United Kingdom? We can do that. We can change that 50 percent number. I know five years may be ambitious, but by 10 years, I want to see that population shift that you see the age group of five. We stop seeing children dying and we see them reach adulthood. That would be a dream come true, and we, America, have seen it happen. History has seen it happen. Children in America were dying too before the 80’s, before some of these interventions. So, it really does take awareness. It takes appreciation of the simplicity of how to inspire hope and it takes us deciding that it’s worth the life of these children to do better.

Taking a look at your team, it’s quite a formidable team. Dr Joseph Lubega and others, I know that’s awesome. Now let me ask, what’s the secret to your collaboration and shared vision?

We are African brothers and sisters just trying to get things better for our country. That’s all we care about. That’s all all of us care about. And we’re all Nigerians here. Nigeria is a beautiful country. Not beautiful in the way that, you know, people are ‘419’ oh, the electricity, oh, this, oh, that. But the beauty of the people, and the beauty of our intelligence, is almost unmatched. You might say I’m biased because I’m a Nigerian, but it’s not just me saying this. Other countries promote us as well.

In fact, Joseph reached out to me and the other Nigerian guy is like, you Nigerian. Like, it’s just always impressive that we just get things done. We mean business. And, I’d like to say of Nigeria that we’re so talented at everything, the good, the bad and the ugly. But I hope that those talented and the good continue to outshine the bad and the ugly. And I believe we can work like the ones that you’re doing at the Nigerian Tribune. You are the type of person that gives us hope for the next future of Nigeria. The work that my brother is doing as well, that’s what makes us still hopeful.

And so to your question about what is our secret? It’s just recognising that special thing God gave us, that Africanness, the ability to be resilient, even in times of struggle, the ability to hope against all odds, even in the face of corruption or infrastructure problems. That does not mean that things cannot still be beautiful, and that does not mean that we cannot have progress or succeed.

When I first met Joseph, I was young. We were both, I was, what they call a fellow. I was still getting my training for hematology oncology, and he was like a big brother to me, like, a mentor big brother along with others in the team. As we continued to progress in our careers, I knocked on his door for something because he has a master’s of public health. He has public health training. I actually do not have public health training. So, I asked him, I was like, hey, there’s a problem I’m trying to solve and I need a public health lens to it. That allowed us to set up this dynamic (team) where we already had a good working relationship. Fast forward, several months later, he knocked on my door. He was like, Titi, I have this idea. I want us to go to McArthur and I need your help. I thought, well, I’m not your public health expert. I’m not your analyst. I’m not some famous global health doctor. I’m just me. And he felt it was quite important to include my story. And I initially thought this was ridiculous. There’s no way them knowing I have sickle cell will make a difference, but I have to tell you it did. They were very happy that somebody with lived experience and the fact that Africans were at the table; it seemed as if that’s what meant a lot to MacArthur. They wanted to see representation. They wanted to make sure this wasn’t just some type of project where the people who you say you’re helping are not even involved. So, the professional part of our relationship is very strong, but then that African brotherhood and sisterhood is quite strong, throughout this whole project, including our other team members: Nmazuo W. Ozuah, MD, Venée N. Tubman, MD, MMSc, and Gladstone E. Airewele, MD, MPH. All of us have an African background, whether Nigerian, Ugandan or Liberian. We see the big picture, and we care so much. We’re just so passionate about getting this right. And we hope we can use that to hold people accountable. You know? We don’t want this to be a project that promises something and then disappoints. We want people to be accountable and we feel that having representation of Africans at the table is important to that. And then having the representation of somebody with sickle cell disease, myself and others, not just me, we’re going to also have community members who have sickle cell disease to be at the table. That will also keep us honest and keep us accountable. We see this as a huge responsibility and the stewardship must be tight. It must be extremely flawless as possible. So, it’s a big order, but we are going to work to be up for the challenge.

And again, I feel it’s like an honour. If God gives it to us, we’re going to just do His will, and just go as far as He will take us. So, yeah, I’m excited.

How have you survived it? What were the things that you did to sustain yourself? Maybe people in Nigeria can learn one or two things.

Yeah. Part of my answer may be disappointing or not helpful, and the other part may hopefully be helpful. I’ll start with the not-so-helpful part and that goes back to that coin flip, chance. For me, chance is related to God and things that I don’t experience. So, when I was born, I too had that 50 percent chance of dying and I didn’t die. I’ve had close calls with death and I didn’t die. So, I cannot tell you in my early years why I didn’t die. I just know I didn’t die, which is the disappointing unhelpful part. Now, what did my parents do? They prayed over me. They made sure I was eating healthy. They made sure they didn’t limit me. Even though I had sickle cell, they wanted me to know that God can help me through anything. And so I thank God for African mummies and daddies, Nigerian parents that invest that prayer and that faith in their children. So, that’s the first part.

The second part was the medicine I mentioned earlier, hydroxyurea. I did not start that medicine until I was an adult, until, like, in 2011. I had started it earlier, maybe I would even be healthier, you know? But I started as an adult and I saw the difference it made in my life. It reduced my pain and my complications. And for most people with sickle cell, it provides that positive impact.

And so now hydroxyurea is available in Nigeria, but as I hinted, it’s sometimes quite expensive. One of our local pharmacies, Bond Pharmaceuticals, which maybe you’re familiar with, can now make hydroxyurea, and they are making it cheaper than the one that’s imported. So, we hope that people will see that and, you know, be able to get it at a much lower cost, even in Nigeria, because that’s what is saving many of the children in America, and now it’s on ground in Nigeria.

And then, the other part of this is the big picture view. I don’t want surviving sickle cell to be an accident for anybody here, to be a prayer or a wish or a hope or whatever. I want us to have more odds in favour of somebody surviving. Right now, there are big projects in Nigeria that have also been going on that we are going to be joining and partnering. Some of them are in Lagos, some of them are in Abuja, some of them are in Ife. They’re all over the country working to help the Nigerian sickle cell population. We just hope that this partnership with Africa CDC will elevate their work even further. As we speak, June 3 – 6, there’s going to be a global congress on sickle cell disease in Abuja, first time in Nigeria. It’s the fifth time that this group has met, and they meet every five years. The first one was in Ghana.

This is bringing many people around the globe to our doorstep, to see the work that has been done in Nigeria and to look to the future for a brighter tomorrow. How do we keep people healthy and how do we ensure that they survive? I can only go back to my name. My life is the testimony. I don’t have all the answers. I just try my best. And until God calls me home, I’m just going to keep on working. And I’m so proud of those that have done the same, even those that we lost too soon. I’m just continuing this work as a legacy and a tribute to them.

Thank you. Looking at your profile again, you are a physician, a researcher and a survivor. Which of these identities do you draw from the most when you are facing tough days?

I started calling myself the vision advocate. At first, I would say, okay, pediatric hematologist or clinician scientist, but now I call myself a physician advocate or a clinician advocate. Meaning, I take care of children with sickle cell disease every week. I’m a pediatric hematologist. I’m also a physician, specifically for those with sickle cell disease. But then, having sickle cell disease, I’m also an advocate. And so I’ve learned how to merge both of these parts of me, and I can speak both languages. So, I’m a good translator. If I’m talking to the medical community, I try to remind them about the life experience of a person with sickle cell. And when I’m talking to the community that has sickle cell, like the individuals that have it, I’m also able to translate that medical information, hopefully, in a way that is more meaningful and impactful. I don’t think you have to have sickle cell to be a good sickle cell doctor. But for me, it has made me understand empathy and also the vast amount of differences between the individuals that have sickle cell in their stories. It’s quite surprising. So, I see myself as both. I cannot cut one out and move one out, but the advocacy role is probably the strongest for me, whether I’m speaking as a physician or whether I’m speaking as an individual with the disease.

I want to ask, many young people in Nigeria live with sickle cell. Many young people see their condition as a limitation. What would you say to them today?

One, I want to acknowledge their frustration. I think in some ways, it is true being sickle cell makes you different and it’s okay. It’s okay to be sad about that. It’s okay to mourn. It’s okay to feel sorrowful sometimes. But you cannot stop there. You have to think, how do I move forward even with my condition? What can I do with myself and my talent as I am? You know, sickle cell is one of the problems in the world. There are so many different types of problems in our world. Yours is sickle cell. There are ways for you to still live beyond your diagnosis. And, one group that I know here says diagnosis is not destiny. So, part of the reason why people feel limited is because they’re believing the lies that they cannot have a fulfilling life. And that is absolutely not true.

I remember when I was a teenager, I would cry to my dad that ‘I’m not going to go to university, I’m not going to get married, I’m not going to live because I’m going to die by the time I’m 18’. That’s what I believed. I used to believe that. And so many people believe that they’re going to die young. This is not to say that I can predict anybody’s age or death. This is to say that you should not let those fears keep you from living. Because there are so many regrets I have, because sometimes I held myself back from sickle cell disease. So, in partnership with your doctor, think about the things you like to do and pursue them. I know so many people with sickle cell who are lawyers, doctors, engineers, they travel. There are so many of them. I wish I could show that physical evidence to the youth, but, if any of them are reading or listening, one day, I just want them to know that they are not alone. They are not alone. There are others around the world with the same fears, and the best way forward is to just take that next step and have faith that you’re going to be okay. And, yeah, that’s what I will stay with. But I know how it feels. So, I don’t want to diminish any of their fears or worries, but I want them to have hope.

Can you share with us what keeps you going, especially when the work feels heavy or the progress feels slow?

Thank you for that question. So, taking off from the last question, when I said that I know what those teenagers feel like, I sometimes still feel that way. Sometimes, I feel like crying. Sometimes I feel like, you know, why do I have sickle cell or why is this happening? But what keeps me going is my faith. That’s the number one thing. I am so grateful that God put me on this earth and even in the way that he’s put me on this earth with the parents that I have, with the family that I have, with the opportunities that I’ve been given, I don’t take those for granted. That really keeps me going. I feel like, again, my name is that prophetic blessing over me that I still have cause for joy. I still have cause to be grateful. And, yeah, that’s what keeps me going. I’m also very grateful, as I mentioned, for my family.

My parents are still with me and they pray over me as they are always my champions. I’m grateful for my husband, who’s also one of my champions, and he’s really been an encourager. My siblings, they’re my cheerleaders. Even when I’m not on social media properly, they cheer me on social media, and, just so many of those bright spots. And then, honestly, I’m really thankful for what I call kindred spirits, my fellow people who have sickle cell disease. Because when I meet somebody else with sickle cell disease, I am always happy because it just makes me feel good to have someone that understands, even if we have different life stories. If I show you my WhatsApp group, I have so many different groups related to sickle cell disease and different people that I’ve encountered in life that are so beautiful and so inspiring. I’m able to share my story, but there are so many stories that I’ve heard that have inspired me, and those encourage me, including the little children I take care of in my clinic. Those are the things that keep me going, the fact that I feel God gave me purpose, and I’m just going to keep on.

This is a little bit personal, the loss of your cousin has been mentioned as a major turning point for you. How does her memory continue to guide your work today?

Thank you. When I mentioned how I moved back to Nigeria when I was 11, for the next several years, I did my JSS all the way to SS two in Nigeria. And during that time, I bonded with this cousin. She was one of the people I mentioned that I finally didn’t feel alone, because she was another person in my family that had sickle cell disease, and she knew exactly how I felt. And I felt she was beautiful. I felt she was even healthier than me. She was in boarding school. She was doing all these things that I wasn’t doing. I was a day student. Then, fast forward, one day, my dad comes to us and tells us that our cousin has died. And that was my first experience with a painful death. My great-grandmother had died maybe a couple of years before, but this one was a young child. She was a teenager too. That day, food didn’t taste like food anymore. Everything just tasted like dust, sawdust. Some months later, I was able to meet with her sister, her younger sister, and she told me everything that happened. And when she told me what happened to my cousin, my first thought was that, oh, it’s because it’s Nigeria. It’s because of the health care system. But it’s actually much more complicated than that. So at the time, I was inspired that, one, I want to enter medicine to try to prevent children from dying like my cousin and somehow help with that infrastructure problem because I thought that was the only problem. And two, I thought, oh, if we cure the disease, all will be well. And you may have learned that there are some cures for the disease that we didn’t talk about today, but curing the disease is also not the solution. And I slowly entered an education for sickle cell disease.

What does it really mean to understand sickle cell disease? Not just as a blood disorder, not just as a problem in Africa, not just as a problem in America, but to really understand the physical, social and psychological components and the historical components. So, at that young age, I only knew I wanted to stop sickle cell disease from killing anybody else. So, I wanted to cure sickle cell disease. But as I learned more about the public health problems, I realised that I needed to be an advocate because that was the best way I can influence things to change for sickle cell disease. And so even though the pain of her loss is one of the trigger points, catalyst moments for me, to how I moved, it was more in honour of her memory. And sadly, since then, I’ve lost some other friends and people with sickle cell disease personal to me as well as those that I don’t know very well. And each of them, to me, I’m doing this in their honour. I’m doing it in her honour. I dedicate most of what I do to her honour and to so many of them, what I call beautiful souls that were gone too soon. It’s a very common story for Africans and Nigerians to know somebody who has died because of sickle cell disease. I just hope that even with that pain, they can see a brighter tomorrow that this does not need to be our legacy as Africans.

For us in Africa, we always talk about a cure for every disease. Why did you say we shouldn’t be thinking about the cure?

I think about the cure, and I think people should think about the cure. However, there are so many challenges with getting even basic care for an individual with sickle cell disease. If your focus is only on the cure without doing the foundational work, the cure will always evade you. So, in the short version, curing sickle cell disease in today’s world requires a transplant, something that they call stem cell transplant or bone marrow transplant. That process is very rigorous. And for the best success, it requires a very stable health care infrastructure. That does not mean it cannot be done in Nigeria. In fact, I think Lagos and Ibadan have done transplants. I believe maybe even Abuja has too. I’m just aware of the ones in Lagos and Ibadan. They’ve done them, but how many people actually have access to it? And there are several reasons for this, which depending on the time, I won’t necessarily get into. And so if I told you to only think about the cure, then you would only be talking about a small percentage of people’s lives changed. But if I talk to you about preventing infection, that is also a version of the cure. If a child does not die at the age of five from infection, you’ve allowed this child to become a productive member of society, even if they still have sickle cell disease. And then hydroxyurea, if I take away several of the complications that make people die early and I give you a medicine like hydroxyurea, it is not the cure, but it at least extends life. Those are also valuable things, and they’re affordable and accessible to so many more.

In case you weren’t aware, there are millions of people with sickle cell disease in Sub-Saharan Africa. And in Nigeria alone, about a hundred thousand babies are born every year with sickle cell disease. And so in the dream version, I do hope one day we can cure everybody, and I don’t want us to not look for the cure or seek the cure. But I want people to not miss the forest for the trees. I want us to really think about what it means to take on a challenge that’s a public health challenge and extend lives of so many people. And that will take more than just investing in a cure. That’ll take investing in your public health infrastructure, in your primary, your secondary and tertiary systems. That way, when the cure is more affordable and available, you’ll have a system set up ready to handle the challenge.

So, I’ll end by saying the future of cures is bright. Right now, the way we do transplant is not accessible for everyone. But one day, there is a type of therapy called gene therapy. There’s a special way of doing it that if they get it right, it’s meant for Africa. In fact, the people who are investing in it are looking at Sub-Saharan Africa as the place to launch even more than Americans. And so the future is coming. The future is now, but we need to be ready for that future. And we’re not yet ready for that future. So, yes, I don’t want to be misunderstood. I really am excited about gene therapy, transplant, but I’m also, I would say, even more motivated by saving lives, saving young lives.

Finally, doctor, if you could look, if you could go back and whisper something to your younger self, the little girl with sickle cell just starting school, what would you say to her?

I would say, never give up and always have hope. That is what I would say. I don’t take it for granted that I’m able to be here today. And so I just hope that I can continue to humbly serve God the way He wants me to, and however that can help sickle cell disease, that just means a lot to me. So, I hope that it will encourage others that have been struggling as well. Have hope and get yourself informed, you know, get educated. There’s more than the story of the past. We have a new future for sickle cell, and it’s time for us to believe in that future.

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