Ep164: Ted Love and Alan Anderson on Raising the Bar for Sickle Cell Disease Patients

Welcome to the long run. This is a podcast for biotech adventurers. I'm your host, Luke Timberman. Today's guests are Ted Love and Alen Anderson. Ted is the chairman of the board of directors at the Biotechnology Innovation Organization and serves on a number of company boards. He's perhaps best known for serving as CEO of Global Blood Therapeutics, the San Francisco Bay Area company that developed Voxelator, marketed as Oxbryta, a novel small molecule for sickle cell disease. The company was acquired by Pfizer for $5.4 billion in 2022. Allan is a physician scientist who leads a comprehensive sickle cell disease treatment program in Greenville, South Carolina. He's also the founder and executive director of Sickle Forward, a nonprofit that works to advance newborn screening and treatment of sickle cell disease in Africa. I've worked closely this year with Ted and Allen as co-chairs on the Timberman Traverse for Sickle Forward. We've worked to recruit and lead a team of 20 or so biotech executives and investors to climb Kilimanjaro, the highest peak in Africa, and raise $1 million for Sickle Forward. The funds we raise will support low-cost effective newborn screening in Africa. Kids who get diagnosed will then get access to a series of practical interventions available there: antibiotics, antimalarials, medications to deal with pain crises. A pilot program run by Anderson and colleagues has shown that newborn screening can save lives of these kids. The newborn screening tests only cost a dollar a piece. That means a $1 million Kilimanjaro campaign can go a very long way to uplift kids with sickle cell disease in Africa. And I am thrilled to announce that we have in fact exceeded our $1 million goal as of late August. Thanks to our major sponsors including Silver Lake Research Corporation, the maker of the Hemotype SC test, AIOS Pharmaceuticals, Vertex Pharmaceuticals, Bluebird Bio, Pfizer, Sickle Scan, Big Hat Biosciences, Crisper Therapeutics, Evercore, Beam Therapeutics, Fulcrum Therapeutics, Goodwin, and the Community Foundation for Northern Virginia. Thanks to more than 300 donors and counting who have chipped in donations of all sizes. And that's not all. By hitting the $1 million team goal for Sickle Forward, we have triggered an additional $1 million matching gift from Ted Love and his wife Joyce. They have agreed to donate that additional million dollars to the University of Alabama Birmingham to support sickle cell disease research. That means this campaign has now raised more than $2 million total. That also makes this campaign truly global in its impact and ensures that it will address near-term health needs while also advancing research that will provide for better, more accessible treatments far into the future for patients around the world. And we're not finished. If you go to sickleforward.com, you can learn more about the organization and click on the link to add your donation. It's not too late. We have a number of folks who are still striving to hit their $50,000 individual fundraising commitments as of this recording. They'd very much appreciate your support. We will gather as a team to hike on Kilimanjaro September 10 to 17. This trip is timed to coincide with National Sickle Cell Awareness Month. I cannot think of a better way to raise awareness of this long neglected disease and this moment that's brimming with possibilities for sickle cell disease patients. In this episode, I talk with Ted and Allen about the needs, the improving set of tools and therapies, our campaign to rally the biotech community, the medical community, the patient community, and urge everyone to keep raising the bar. Please join me and Ted Love and Alan Anderson on the long run.

Thanks, Luke. Good to be here. It's a pleasure. So, just to get started, I think this one begins with an introduction. Ted, you made an introduction between me and Allan a little less than a year ago, last fall. Could you tell that story? What were you thinking might happen between the two of us or the three of us?

Well, a little bit of the backstory. You know, Ted and I had spoken about climbing Kilimanjaro a couple years previous. It didn't work out for whatever reason. I think you were pretty busy with your day job at the time. But then later joined one of the Timberman Traverses for Life Science Cares, the anti-poverty organization in the United States, and so you got a good taste of what the program is like: the fellowship with fellow biotech executives, the potent fundraising ability. And so I think you put two and two together that absolutely, if I were to talk with Allen, we might find something in common.

Okay. Allan, so before I get into how our first conversation went, can you just introduce yourself, say a little bit about who you are and what you do there in Greenville, South Carolina?

Sure, happy to. So, yeah, my name is Alan Anderson. I live and work in the upstate or the western part of South Carolina in Greenville. And I'm the medical director of a lifespan sickle cell disease program. So I started in practice as a pediatric hematologist oncologist in 2007. And pretty early in my practice I recognized just how individuals affected by sickle cell disease were sort of being left behind out there in the medical community in terms of funding, treatment, etc. And had a real passion for individuals where there was disparity in healthcare funding and focus. And so sickle cell from an early time point was really big for me. So I came into practice here in South Carolina, had been taking care of individuals like pediatric age that were affected by sickle cell disease, and then had the opportunity to live and work in southern Africa in the country of Botswana where I took care of adults with blood disorders. And so came back to this community here in 2015 and 2017 in Botswana and came back to the community to bring adults with sickle cell disease back into a pediatric model of care that we know works so well, that's focused on disease modification and prevention and those sort of strategies.

Wait, so you spent two solid years in Africa full-time?

That's right. That's right.

How did that come about?

So, I was medical director of my practice here in South Carolina and I was feeling a burden for those affected by sickle cell here in the United States and I was recognizing that we have so much to be able to treat our patients, right? We even though if you look at other disease processes you would say at that time had one major medicine, many to come in the future. But I was recognizing those in sub-Saharan Africa were the ones struggling to a certain degree as sickle cell was really considered a forgotten illness across sub-Saharan Africa. And so I wanted to be able to see what it is like to live and work in an environment where you have to think about sustainability, you have to think about cultural sensitivity, all of those sort of topics that are very difficult to learn in our medical care setting here in the United States. And so I had an opportunity that came about through a colleague, a friend who was working in Africa for Texas Children's Hospital and he was going to be moving back to the states and he reached out to me and said, 'I know you have a heart for this, there's an opportunity for you to work through our global health program at Texas Children's.' And I applied for that position and ended up going there to live and work for two years to really get an understanding what it's like to be on the ground dealing with populations that are struggling and need sustainable change. Not that I can provide that change, but I was part of a team that was helping to equip and educate so that treatment could continue in those environments.

Wow. Sounds like you really gained a deep understanding and built relationships there that are critical. So, can we back up just a little bit and say a little bit about sickle cell disease? You mentioned that it's kind of a forgotten or neglected disease in many parts of the world, including in the United States. What is sickle cell disease? What causes it?

So, sickle cell is the most common inherited red blood cell disorder. So, it's a genetic condition. It's passed down in families and it's found to be most prevalent in those places in the world where malaria is endemic. So if you look at that, it's not a black or brown disease. It's a disease based on the selective pressure of malaria trying to get into the red blood cell to cause infection. And those who are carriers who have sickle cell trait have more resistance for that parasite being able to get into the red blood cell. So there's a selective pressure for more people to have the sickle cell trait in those regions and to ultimately have the potential to have a child affected by sickle cell disease. So that's where the disease came from. It affects approximately 100,000 in the United States. But if you look at the disparate burden in continental Africa, it affects about six million individuals. There's high density in India, in parts of Central and South America as well. So it's really a global disease that disproportionately affects those with genetics from malaria endemic regions. The disease itself causes lots of problems to all organ systems because the crux is a change in the shape of the red blood cell when it gets stressed. And if that change in shape happens, there's a potential to block blood flow to any part. Of course, the loudest part, the part of your body that will give you feedback right away, is your bones. And so, the hallmark of the disease has historically been bone pain. Many strokes happening within the bones causing the worst type of pain that you can ever imagine is what those affected by the disease deal with. But that's happening throughout the entire body. So, there can be damage to kidneys, brain, lungs, etc. Because every part of the body needs oxygen and that change in shape of the red blood cells can block the flow of blood and oxygen to the body. Those red blood cells don't have that disc shape that we've all seen in videos and graphics. They turn into that crescent or that sickle shape and they get hard and sticky and they clump together and that's what causes those pain crises where they clump in places they're not supposed to. And it also causes the fatigue on a general chronic basis that they just don't have the same capacity for carrying oxygen. Lower hemoglobin level, lower capacity to carry oxygen, lower hemoglobin levels lead to chronic fatigue, difficulty in managing jobs that other people can handle. They cause those affected individuals to have problems with just activities of daily life. And of course then that leads to things like generational poverty and other downstream ramifications of the disease, especially even if it were well managed historically in the US and elsewhere. But there's been quite a disparity in terms of research funding and treatment in the past. Now we're excited to see that changing as we get more and more focus and effort on the disease.

Yeah, Ted, I know this is something that you've looked into the disparities in funding and I think you've drawn the comparison to say cystic fibrosis, which is another single gene mutation driven disorder that has received quite a lot of funding over the years. What did you see when you looked into the funding and research, the difference in priority that we place on these two diseases or others?

Well, and of course your company was successful in developing Oxbryta, also known as Voxelotor, approved by the FDA a couple years ago. The company was eventually acquired by Pfizer. And that was the first new small molecule treatment for sickle cell disease in how many years?

And Alan, how are most patients currently treated today with sickle cell disease in the United States or in other parts of the world?

So within the United States, we have a couple options. As Ted mentioned, we have a couple of disease modifying therapies. They're designed to try to prevent that shape change in the red blood cell or the crux of a problem which is whenever the red cell gets stressed it changes shape. That can be from temperature changes, from infection, from altitude, you know, going up to these peaks like we're going to be going to here on Kilimanjaro. But there are many things that can cause a shape change in the cell and the modifying therapies are really trying to get at that. So historically hydroxyurea is designed to induce the production of fetal hemoglobin. So we know babies when they're first born don't have problems with sickling. There is protection from that baby hemoglobin that holds on to oxygen better and prevents some of the early issues with the disease in those up to 6 to 12 months of life while that protection is still there. And then the body naturally gets rid of the fetal hemoglobin. That's the way we're designed. And the hemoglobin that's then produced by many of those affected individuals is predominantly the sickle hemoglobin. So hydroxyurea tries to change that so that you make more of the fetal hemoglobin again. And then an agent like Oxbryta is designed to try to prevent the hemoglobin polymerization, the long strands of hemoglobin that happen that ultimately lead to the crescent or C-shaped change in the red blood cell. So we have patients that are receiving great benefit from those modifying therapies. We have newer agents that are down in the pipeline right now that are looking at doing some similar things: how can we have other agents that are increasing the amount of fetal hemoglobin and causing protection? We have the excitement around gene therapy right now where two companies have brought exciting gene therapy to the forefront here for patients with sickle cell disease. That's still developing, still requiring a lot of chemotherapy to prep those patients, still a lot of unknowns about long-term side effects and issues. And so we are seeing patients that are excited about that and others that want to allow that science to develop over time. So newer exciting things happening in the United States, more comprehensive sickle cell centers where patients are doing preventive screening, getting the care they need around depression and anxiety and other things that are rampant within the disease process as well. But the problem is the lack of almost all of that in sub-Saharan Africa. And the reason that I'm excited about the work we're doing with Sickle Forward in sub-Saharan Africa is because the majority of individuals are not even diagnosed in that context. And we know if they're not diagnosed, 80 plus percent of them will die before the age of five from easily preventable causes like infection. And so we're really just trying to scratch the surface on diagnosis and then look at basic treatments in sub-Saharan Africa and other low resource environments.

Well, I want to get back to that in a minute because that's one of the reasons I'm really excited about what we're doing together. But before that, Ted, when you think about the underlying pathophysiology of this disease, the single gene mutation that's driving the sickling and then all of the tools and technologies and the research that exists now in biotech, which is way beyond when your career started. I mean, you've seen this explosion of exciting ways of approaching a problem like sickle cell. Why is this the most exciting time ever to be doing research and development for people with this disease?

And that's an oral small molecule drug people could take once or twice a day, right?

Well, that gets us to the access part which we'll get to a bit later. But you've already blazed a trail here in raising funds and advancing our understanding of the underlying disease, which has invited other people to bring their tools to bear, whether they be antibodies, CRISPR gene editing, gene therapy. There's a whole flowering of companies within the industry with their own ideas about how to go about it.

If you like listening to the long run, you'll love a subscription to Timberman Report. This is where you can read my coverage of the most interesting startups in biotech, my weekly Front Points column, and commentary from a rotating cast of contributing writers. Individual subscriptions are available on a monthly, quarterly, or annual basis. Group subscriptions are available at a discounted rate. Go to timbermanreport.com and click on subscribe for more. Now, Allan, back to Africa. You're obviously aware of the work that's going on in CRISPR gene editing, the breakthrough from Vertex and CRISPR Therapeutics that was approved by the FDA a little less than a year ago. But it's expensive, it's logistically complicated, it's not practical to distribute all the way around the world to all those six million people who have sickle cell. What is your idea about how to make the biggest difference for the largest number of people?

Well, I often say I feel like I have my brain in two different places. I've got one side of my brain here in the United States that realizes we have access to so much and, as Ted mentioned, so many options that are coming along out of the work of people like Ted and companies like GBT. Now we have so many companies that are really up and coming. But the other half of my brain is sort of living in a space where there has been nothing. And so much of what I was seeing when I first got involved with global work back in 2011 is that there wasn't really even an understanding of the impact of the disease within the healthcare sector in those countries that are most highly affected. I'll say one story: I had a colleague and a friend who's a pediatrician that I trained with who was living and working in the country of Mali, West Africa, in a rural environment. And he called me soon after I finished my fellowship. He knew I was interested in sickle cell disease and he said, 'I've heard that sickle cell is very prevalent here in Africa, but I'm not seeing any patients. They're not coming in. I don't see anybody with a diagnosis of sickle cell disease.' And so what he recognized and what we both sort of put together is that it was only those children of the most wealthy who were able to make it to the capital city who had pain, who had other complications of sickle cell, and their parent was able to get them to the capital city, which may be multiple hours away, too expensive if you live on three to four dollars a day to enable that to be a possibility. And so most children, in fact, almost all, were not able to go to have any sort of diagnostics to see if they had the disease. And it had not been possible to do that in those types of rural environments where most people in environments like continental Africa are living. And so that was sort of my first understanding of the fact that these children were dying. If you look at the data, it supports that 50 to 80% of children who go undiagnosed in continental Africa will die of complications of the disease. So we started to say what could we do in that sort of environment? That ultimately led to thinking about the nonprofit. But in the early days, it was just: can we sustainably help to assist, partner with clinical leaders in country to just make a diagnosis available? Step one: diagnose. Then because there's so many things about this disease, it's just about providing education. If your child has fever, they need to come in and be seen and have some medical attendant evaluate them. That doesn't take access to significant amounts of medicine. It just means that this child needs to be treated differently if you're trying to look from an economic standpoint and decide does this child need to go see a doctor or that one. And so there's a lot of education that happens around the diagnosis, and then we can attach or help those regions to be able to do basic things like penicillin antibiotic prophylaxis, prevention of malaria where there are bed nets and medicines already available. So really thinking about trying to prevent malaria, which is a killer in those with sickle cell disease. So just some basic things once you know the diagnosis. Step two is basic access to treatment, and those treatments really are three-fold: it's antibiotics for prophylaxis, it's malaria prevention, and it's basic childhood vaccinations, which largely are taken care of through the Gates Foundation vaccinations.

So if they've got an underlying sickle cell disease problem and then they get one of these other like a diarrheal disease or something, that can be the thing that kills them.

That's right. There's a higher risk of certain types of bacteria or viruses causing problems in those with sickle cell disease. And so vaccines are really critical in trying to help prevent those severe infections.

Okay. So, you were thinking if there's a way to diagnose kids, and we're talking very young, infants, toddlers, and often they've just got pain and they're crying and nobody knows what's wrong. If you can figure out what's wrong, then you put them on antibiotics, vaccines, antimalarials, bed nets, like you say, to really reduce their risk. But what was how long ago was this that you embarked on this project? And what sort of diagnostic tools did you have at the time?

Yeah, so back in 2011 was when we started to work with this single rural-based hospital. They were delivering about 3,000 to 3,500 infants a year. And what we said is there's no reason that we shouldn't have as lofty a goal as what we have in the United States, which is every baby born has access to a diagnosis. Every baby is screened for sickle cell disease in the United States. That started in the late 1980s for most states across the United States. And by doing those small interventions, we saw a 30% reduction in mortality. So that was when we started off. We said we want to be able to do this at least in a single hospital. And we were initially using a type of gel electrophoresis. It's a basic test, but it requires cold chain and reagents and consumables and all of those things in environments where it's difficult. Sometimes when we started to work with Mali, there were some issues with terrorism there. The French military was occupying in the north of the country. There were a lot of things that were in play trying to put in place a historical laboratory based test that's hard to do even in a lot of places in the United States. And so that worked. But what we saw was there were major gaps that were happening due to cold chain access, due to consumables being able to keep things in the country. And so we started looking for the next step. How could we do that?

Yeah. But if you have the information, you get a 30% reduction in mortality. You're saving lives and a lot of them.

So that's what the early studies in the United States showed. If you could make the diagnosis, start penicillin, put those affected individuals in a sickle cell specific program, there was a 30% reduction in mortality by doing those interventions. And so that's where it made sense as a screening test. The screening test was reliable, it was cheap, and there were good interventions that you could do that would save lives. So it met all the criteria for a good screening test to add to that we screen every baby for the newborn screening that we do for all children.

Okay. So, this is really good information to have. If you can get this information in a more cheap, easy, practical way, you might be able to roll this out all across the country of Mali or other parts of Africa where you don't have one of these centrally located well equipped hospitals.

Correct. That's right.

Well, I would also imagine it's harder to quantify, but giving the parents, the family, and the patients if they're old enough, you give them this information, they know what's actually going on, that gives them some peace of mind and they can plan their lives accordingly.

That's right.

Okay. So now the technology has improved. More recent times you've become aware of a test, and this is something you told me in our first conversation that really set the hook for me. There's a dollar a single heel stick test for a dollar that can give you this information you need. Can you talk a little bit about that and what a game changer that is?

Yes. So, as I mentioned before, we were using this reagent heavy, cold chain heavy process before. It was difficult. We had to batch samples. Many children got lost that had gone back out to their local villages and were hard to find later when the diagnosis was made. And so we recognized the challenges to doing historical laboratory based testing for this disease in this environment. So we were really looking for a rapid point of care test. And what we started to see as we were looking at changing over our diagnostics was that this was a burgeoning area of science where there were now tests with a single drop of blood where you could have a diagnosis within 10 minutes. And so that was really a game changer in this environment. We started working with a company called Silver Lake Research out of Azusa, California. They were making a test kit called the Hemotype SC point of care test. And this is just a simple basic test strip where you collect one drop of blood, you put it in a second diagnostic strip, and it's an ELISA based test where you have the results within 10 minutes and you know if that child is affected by sickle cell disease. The reason it's a game changer is because now we can focus on systematic screening of every baby born at a hospital like this rural hospital in Mali that we were working with. And since 2019 when we implemented this new strategy of screening at this hospital, they've screened 99% of the babies born at that hospital. And the only ones that haven't been screened would be a mother who leaves the hospital in less than 24 hours, just takes the baby and leaves before the test can be administered the next morning. But other than that, there really are no children that are missed in the process. The laboratory technicians are able to do the test. Having the results in 10 minutes, the caregiver can get those results and really can use that to make decisions about their child. When they need to bring them in when they're sick, they can go ahead and be connected to the long-term care that's necessary within that environment. So they get started on antibiotic prophylaxis, they receive malaria prevention and immunizations accordingly so that there can be a significant reduction in risk of mortality down the line. And so that's where we're really excited about this new methodology. I recently presented data at American Society of Hematology last year about our results: over 20,000 infants screened at this one rural hospital. Most people would look at that and say there's no possibility you could have a systematic newborn screening program and treatment all in Mali and run at this hospital. And people were blown away at the results really of a simple test, a diagnosis being made, and then the outcomes looking at how children are doing when the parents are empowered with the knowledge of the diagnosis.

And what kind of reaction have you gotten from your partners in the healthcare community in Mali and also the government or whoever is paying for these tests?

So I think in these environments, there's a lot vying for those healthcare dollars. And there's historical communicable diseases which have very appropriately needed so much focus and funding to be able to see improvements. Luckily, they are seeing improvements in these environments and so now more focus is going to the non-communicable diseases or NCDs as you may refer to them. But there's still limited dollars. And so that's what we recognized early: we needed to partner with clinical leaders in country, those that are respected as being the leaders in the sickle cell space in that context. So that's one of the things that we made sure we focused on. And then those clinical leaders then have a connection point to the Ministry of Health. At this point, most of our partner organizations have had a connection point that says we're interested. We're learning about sickle cell disease. We're keeping an eye on what's happening and seeing what the economics of this looks like and how feasible it is and what the communities think about receiving the information. But yet there's not yet been dollars behind that. And so that's what I recognized early on: there needed to be some fundraising schema behind this. And I wanted to be able to figure out how to effectively partner and provide funding. And that's really how Sickle Forward, the nonprofit I started in 2023, came about. How can we partner with clinical leaders, help them to get the pilot data that this is effective, it saves lives if you screen early, systematically screening babies, connecting them to basic treatments that are already readily available in the country, and then present that data to ministries and other healthcare leaders to try to change the historical lack of focus and funding on sickle cell disease in these countries. So our goal is not to develop data so that we can improve our own academic standing. Our goal is to partner in such a way that that pilot data can be generated that then those clinical leaders in country can use to try to affect change.

Well, you know, this brings me to that first conversation that you and I had that Ted brokered. And I saw your data that you were presenting around that time at ASH. You had long-term data that showed this makes a difference and that you had a $1 test that could give you this information. So it was practical, it was scalable, it was partnered with local authorities who wanted it or were willing to try it. And I thought, here I am. I've got a program that I know can raise $1 million on the iconic highest peak in Africa and bring the biotech community together. It can raise awareness. It can raise a million dollars and form long-term relationships with the whole scientific entrepreneurial community that knows how to seize opportunities and run with them and take them to global scale. I just thought at first, and I've shared this with you Ted, I thought maybe I'll just give this guy some advice because I'm pretty busy and he'll do this himself. But I thought, you know what, no, I think I need to actually get involved in this one myself and really lean in hard. And here we are. We're getting, as we record this today, we're close to a million dollars raised just as we planned and everybody's getting ready to go to that highest peak in Africa. And it feels like there's a tremendous amount of community grassroots support from the biotech community. How are you guys feeling about it?

That's right. So important to bring that up, Ted. I mean, as you mentioned, Luke, when we had that first conversation, I really went into that conversation to discuss doing something. I was thinking about climbing a peak in Colorado. I was thinking really small. I could not even fathom the idea that we could get 25 participants and enough donors to be above $930,000 here, with five weeks left before the event. And I'm just blown away how the community at large has recognized, okay, this is a disease process that we have forgotten about in the United States. And if we've forgotten about it in the US with all of our healthcare dollars, we know that it's not being tackled across the world. And that's exactly the crux of the problem. So we have enough companies, enough individuals in the biotech space who are saying now, wow, we're just learning enough about sickle cell and the science and it's amazing the things that are happening. And how out of that can we not only focus on individuals in the US but can we at the same time in conjunction also say that those in the highest burden parts of the world also we should be focusing on them. So the Timberman Traverse for Sickle Forward really came out of that and I think we've all been blown away at the excitement around a different slice of the biotech space that's really interested in sickle cell disease and wants to see things improve.

Well, you know, one of our hiking mates, Jimmy Olahare, is a patient and he was one of the first patients cured with the CRISPR gene editing treatment, functionally cured of his sickle cell, changed his life for the better. It's really a success story, an example of biotech innovation at its best in the United States, just one of many. He's going to join us. He's going to attempt this thing that would be unthinkable if in his prior state before getting that treatment. It would be impossible and dangerous. And it's huge.

Yeah. I mean, I recently went for a hike with Jimmy. So, Jimmy lives in Atlanta. I'm here in Greenville. We're just a few hours apart from each other. And the two of us met up to climb the highest peak on the eastern seaboard which is Mount Mitchell in North Carolina. And just to give you a perspective, Mount Mitchell's 6,680 feet of elevation and the hike going up 5 and a half miles, 4,000 feet of elevation gain. So it's no walk in the park to get up to the summit, and then another five and a half miles to get back down. So it's a challenge for anyone. But for someone who has sickle cell disease, has gone through transformative therapy, one of the first to receive gene editing through the Vertex platform as part of a research study, has seen his life transformed through that process with normal hemoglobin, resolution of pain events, all of those things. And what we know about those individuals is really clearance of some negative aspects, but we don't yet know about gain of function. There's still this unknown about what can an individual now do who's received one of these transformative therapies like gene therapy. And so I think Jimmy's really exciting because he's going to give us a glimpse of that. It may not be that he can make it to the top of Kilimanjaro. That may put this to a test that it's not ready for. But at the same time, we may see that he's able to go to altitudes that no individual with sickle cell disease has gone to before. He did great. He has not tolerated Denver, Colorado in the past before gene therapy. We were as high or higher than Denver, Colorado at the top of this peak and he had climbed almost six miles, 4,000 feet of elevation gain. And he did great. He didn't have any problems. He was able to be right on track and had a great time doing it. And he was so excited to see him be able to reach a milestone that he never thought possible in the past.

It's inspiring for all the patients out there to look at someone like them who now the ceiling of possibilities has been lifted. His potential for human flourishing in the next chapters of his life, it's hard to even put into words. And what's happening, what I see happening with treatments like Oxbryta and antibodies and other treatments too, is going to extend that kind of potential for human flourishing to many, many more people. They don't have to accept a pain-ridden and limited existence.

Yeah. I tell my patients all the time, we're now resetting the bar for success. Historically, individuals, warriors affected by sickle cell have had to hear that you won't make it past 20, you won't make it past 30, past 40, whatever it has been over the years. And so, they've lived life accordingly. They've set that benchmark for success so low because the expectations were low from family members, from their doctor, from their community. But now we have the opportunity really to significantly raise that benchmark to a life well-lived, to significant improvements in quality of life and quantity of life for those affected individuals. And that's taken a while. That's going to take time for healthcare practitioners to get behind that. It's going to take time for certainly for patients and caregivers to start to realize that. But I think over this next 10 years, we're going to see drastic changes in how folks are doing who are affected by the disease.

Well, just Jimmy talks about running around and playing with his kids and setting his ambitions a little higher in his career and being able to travel and do things he couldn't do before. I mean, it's hard to really quantify all of the benefits here. Last thing I want to ask both of you is the relationships that are already beginning to blossom here. Where might this lead in Africa? Allan, maybe you could start. You've seen some other conversations with people in other African countries.

That's right. So just since we launched this benefit focused event, the climb of Kilimanjaro that's coming up in September, over the time that we've been fundraising, I have, whether it's from participants that are participating in the hike or others who have come across our website for the event, have reached out and said, 'I'm connected to these thought leaders within.' So recently we had a conversation that started in Gabon around putting together a bold initiative to screen over 20,000 infants a year within that country and we're in conversations about getting that started through rapid screening connection with treatment. We've talked to leaders in Benin, in Tanzania where we're going to be launching from, about doing a big screening initiative around the launch for the Kilimanjaro climb. In Nigeria, in Kenya. So numerous conversations have started just by individuals saying, 'Okay, there's 25 busy folks who are leaders within their communities, within their organizations, that are willing to come to Tanzania and climb the highest peak in Africa to do something about sickle cell, to raise awareness, to put money behind it, to put effort behind it. And because we're seeing people being willing to do that, now we want to step up too.' We want to make sure that those connections are made for organizations like Sickle Forward to be able to continue to partner with the main goal of seeing a day when there's not a child born anywhere in the world who doesn't have access to a diagnosis of sickle cell disease if they're affected, and then ultimately basic treatment as well.

Ted, where do you think this is going 10, 20 years out? What do you think the outlook will be for people born with sickle cell?

Well, I wholeheartedly agree. I look forward to seeing both of you guys on the mountain and all of our teammates and continuing these conversations and dreaming big about what's possible. And for folks who would like to contribute, I will have links to take you to the right place, the website, and to all the individual hikers. You can see who's part of this campaign. We'll make it easy for you to be a part of it, and who knows, maybe even join one of these in the future yourself. Thank you guys for joining me on the long run and for everything that you are doing for people with sickle cell disease. It's been a pleasure. Can't wait to see you on the mountain. Thanks for listening to the long run, a production of Timberman Report. Pedro Rossado of Headsteepper Media was the sound editor. Music is from DA Wallik. See you next episode.