Bridging the Gap in Treating Childhood Cancers Worldwide

Chuck: This is the Good News About Cancer. I'm Dr. Chuck Ryan.

Alicia: And I’m Dr. Alicia Morgans. 

Chuck: We're oncologists, and we've spent our careers working to understand cancer. We believe that there's more progress now in research and treatment than ever before, and we're here to share that with you.

Alicia: In each episode of this show, we talk with one of our colleagues about a promising development in oncology. We'll break down what's new, why it matters, and how it points the way forward.

André:  In that most sacred moment when a provider is in the room with a family affected by cancer, writes a prescription, and everyone is just assured that that medicine will be there and it is of sufficient quality. That is the fundamental problem, and where WHO works at a policy level so that that sacred moment is protected.

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Chuck:  So, Alicia, how are you surviving this cold winter up there in Boston?

Alicia: Oh, it has been so rough. My goodness. I feel like I'm either out shoveling snow or huddled inside trying to stay warm. 

Chuck: I think I spent more time huddled inside than outdoor shoveling this winter in particular. It gave me an opportunity to catch up on some reading, it gave me an opportunity to do a little bit more research on many of the great good news about cancer stories that are emerging around the world. And I found one that I think is really worth sharing and it comes from the World Health Organization. And it's about addressing childhood cancers. 

Alicia: You know, when I think about it, we have not really talked very much about childhood cancers yet. And pediatric cancers are 90% curable, which is fantastic news, and is actually something that has changed so much even from when we were younger. The important thing here, and the reason that the WHO is involved, is because this remains a problem. This is not true in the rest of the world that they have such wonderful outcomes, because the drugs and the support that are used to cure childhood cancers are just not available to those kids.

Chuck: If you think about what it takes to cure someone of cancer, in particular a child, it takes a huge team of support staff. It takes nurses, doctors, pharmacists, it takes equipment, it takes hospital beds. It takes a lot of different things that we take for granted in this country, but in some parts of the world, they just may not have. It's a dynamic orchestra of pieces that have to come together to cure a child with cancer. And this dynamic orchestra of pieces is something that the WHO is working to support. 

So I was reading about this and I took the liberty of contacting the WHO and they put me in contact with Dr. André Ilbawi. He is a physician from the US. He's a surgical oncologist and he presently works as the WHO's Technical Officer for Cancer Control. He's developed this program and is working to administer it across many countries through the WHO. 

Alicia: He joined us on the podcast from his home in Jerusalem where he and his wife work for the WHO.

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Chuck: André Ilbawi, thank you so much for joining us on the Good News About Cancer.

André: Thanks for welcoming me, and a warm greeting to the Good News About Cancer community.

Chuck: Tell us a little bit about the mandate of the WHO, and specifically the work on childhood cancer.

André: WHO is the UN organization with the responsibility of overseeing public health, which means that we work to promote health and wellbeing working with governments around the world. 

We do this through three primary pillars of work.The first is that we help set leadership in the public health agenda. In cancer as an example, we've called governments to now work towards the elimination of cervical cancer. That is a core leadership function. 

The second is that we help develop standards. This can be everything from how we define and classify cancers, to what are essential medicines, to what types of protocols should be used for caring for people affected by cancer. 

And the third and most critical function is that we work directly with governments hand in hand to strengthen their national cancer programs and to improve cancer services. And we do that with 150 offices around the world that are situated just next to the ministries of health to provide that supportive function. We are there working with governments in all areas of health, and increasingly we work with governments to focus on core public health issues like in childhood cancer.

Alicia: So I wonder if we can really focus on the initiatives around childhood cancers. And, I think if we could start by even describing how childhood cancers are a problem. Because there has been a lot of success in treating and curing many, many children with cancer, but this success is not distributed equally. And I wonder if you can share how this has been identified as an area to focus on, to spread that success beyond some of the countries that have achieved it.

André: So childhood cancer, as a reference, is what we would consider a reasonably uncommon cancer. But it is important to understand that it still constitutes a disease that impacts 400,000 children and adolescents per year.

Because of the distribution of young populations, the large percentage of people affected live in some of the poorest countries around the world. So 90% occur in what we call the low and middle income countries, and those are also the places where survival is lowest.

Chuck: I mean, to put a fine point on this, in your document I think you point out that here in the United States, a high income country, 90% of children diagnosed with cancer are cured. They survive the cancer and go on to become adults. In low or middle income countries, it can be as low as 40%. But there you cite, some countries have survival rates for childhood cancer as low as 5%.

André: Yeah.

Chuck: So quite a significant disparity and problem to solve that you're now addressing.

André: That's exactly right. It's important that we perhaps, in sharing the story of how we got here, take a step back. Because with any global ambition in cancer and health, we always seek to start with an overarching framework. So the governments in 2017 said, ‘WHO, you need to do more on cancer, and we want you to focus on childhood cancer as one of the important priorities.’

With that, a year later at the UN high level meeting – this is an opportunity where governments not only in health, but other sectors come together and talk about priorities – that specific year, there was a focus on non-communicable diseases. These are what we call the chronic diseases broadly. 

And during that meeting, we sat with partners around the world with great support from St. Jude Children's Research Hospital in Memphis, Tennessee, USA, and we said: let's declare a target. Let's launch an initiative that will address this survival gap between the wealthy countries – and even in wealthy countries there are inequalities that need to be highlighted, but the inequalities between those that can have 90% survival and those that are stock at five, 10, 30%.

That became the overarching framework, what we call the Global Initiative for Childhood Cancer. That was the beginning of WHO and partner engagement to set a foundation to say, in order to improve cancer care, we need to look at the entire cancer care continuum. Do you have the right policies? Do you have the right workforce? Not only the pediatric oncologists who are critical – the nurses, the pathologists, the diagnosticians, the radiologists, the surgeons. 

And that framework provided a mechanism for us to then start understanding: are there continued weak points in a systems-based approach to improve childhood cancer survival? 

Alicia: So how did you begin to address this problem of disparities in childhood cancer care around the world?

André: So if we look at the history of how did the US and other high income countries get to that 90% survival, the history is well told: invest in innovation, drive innovation through clinical trials, improve awareness and access to care.

Those are the foundations of what has allowed survival to increase to that 90%. There was no one leapfrog moment. It's been decades of investments, capacity building, and focus.

Now the question becomes: why is it that so many countries with weaker health systems are so far behind? There is not a simple answer. Of course it is about access to treatment, access to essential medicines, but more broadly, this is about a failure of health systems to provide comprehensive childhood cancer care.

Inequities are related to so many interrelated factors: insufficient knowledge about childhood cancer by health professionals or the general public. A parent being told, sorry, your anemic child is not eating well enough, as opposed to saying, could this be perhaps a cancer? The lack of diagnostic capacity .The necessary pathologists to interpret the abnormalities when children present with blood counts that are of great concern. Inaccessible treatment, of course, not just the medicines, but are the providers available, trained providers to offer comprehensive care using multimodality therapy or in other words, the medicines, the surgery, the radiotherapy, the bone marrow transplantation that's required to get to that 90% benchmark. 

And one of the greatest problems is that all of this is on the back of family. They're being told: you have to pay out of pocket to provide the care for your child. And when you look at a family with a dynamic in which there are many stresses that can be in financial stresses, economic stresses, social stresses, they're told you have to uproot your family and your life, move to a capital, sell all your assets to get treatment, and that's the only chance you have to survive. And even in that circumstance, the medicine may run out or the wait list will be too long. It creates an impossible situation. That happens for so many children and their families.

Chuck: You highlight the success that we have in this country in all cancers is really so dependent on a very fragile supply chain of knowledge, equipment, people, infrastructure that we just take for granted, that we figure if we prescribe a chemotherapy drug, that the pharmacy is going to be able to get it, and the child or the patient is going to be able to receive that and – so fragile, in so many parts of the world where there are so many areas where that could break down.

André: Yeah, and this is where I think there is an important context for the work that WHO does, because that system-level thinking is what is required. Because in the US, there are many decisions that enabled that medicine to be there, people taking decisions as to what is the quantity, what is the supply chain? How are we gonna manage it? What is the treatment standard that we're going to apply? What type of companies are interested in our market because we know that the financial resources will be there to purchase the medicines? And of course, what is the quality of care so that the medicines are handled appropriately, dispensed and delivered to the child.

Those are the reflection of thousands of decisions that are made at a policy level, and that's where the WHO works. We're at that policy level with governments to say, do you have an overarching cancer control plan? Does it include children with cancer? Do you have national treatment standards? Do you have a mechanism to monitor your supply chain? How do you promote quality of care? 

These are all aspects that ultimately result in that most sacred moment when a provider is in the room with a family affected by cancer, writes a prescription and everyone is just assured that that medicine will be there and it is of sufficient quality. That is the fundamental problem, and where WHO works at a policy level so that that sacred moment is protected.

Alicia: André, I'd love to hear if you could share not only how you work on the infrastructure and the policies that allow the implementation and allow the success of these programs, but how do you overcome the challenges around medicine delivery? Because medicines remain so expensive, and then of course there's the supply chains and the transport and all of the other pieces that are involved in getting that medicine to the child. How do you overcome that?

André: This is exactly the challenge we found, Alicia. So the Global Initiative was making great progress, and the way we've operationalized it is through pillars and enablers as we've described them. These are: what are the key actions that governments need to take? 

As we worked across different aspects of childhood cancer care, we soon recognized that there was one weak pillar that remained, and that's access to medicines. So we spent the time to understand what's really happening at the country level, and unfortunately what we found is one of the primary bottlenecks is public financing. Governments not purchasing the medicines, which created a situation where, again, families were being told: you have to purchase the medicines out of pocket.

As a simple example, when we looked at public financing for cancer medicine, specifically even for childhood cancer, very few low income countries purchase those medicines. In middle income countries, again, the majority of families were having to pay out of pocket to purchase essential childhood cancer medicines.

Chuck: I think that something listeners may not realize is that, in many of the wealthy countries, United States, others, the government buys the medicines – just to clarify – the government buys the medicines from a pharmaceutical company and then sees to the distribution, and that's not happening in these other places.

André: That's exactly right.

Chuck: That’s an interesting piece of insight.

André: Yeah, and, and the consequence is quite catastrophic downstream. Once you start fragmenting procurement systems, all of a sudden we have no idea how the medicines got to the hospital and by extension what is happening when it is dispensed and delivered to the affected child. 

And so what we found is in at least half of the countries that we had been working with, individual hospitals were managing their own medicine procurement, buying small quantities from local suppliers without national coordination or reliable forecasting. The consequence was the costs were higher. Again, to just understand the difficulty of the situation, the poorest families were paying out of pocket more for the same medicine that governments and high income countries were purchasing.

Chuck: The point should be made that pediatric cancers are treated with standard chemotherapies that have been –

André: Exactly.

Chuck: – protocols that have been developed over the last many, many decades. These are not new, expensive drugs. These are drugs that are off patent and should be generically available. Correct?

André: Correct. And so this is what we recognize, which is that the landscape of childhood cancer medicines can and should be fixable.

Chuck: Yeah.

André: So again, in December 2021, we sat with our colleagues at St. Jude Children's Research Hospital, and other partners and WHO and St. Jude launched what is called the Global Platform for Access to Childhood Cancer Medicines.

It really is the first of its kind to provide an uninterrupted supply of quality-assured medicines with intense support from selecting the medicines to dispensing those same products according to best care standards. It is part of the global initiative, but does a deep dive to make sure that the medicines that children deserve are available at the clinic when they need it, without a concern of stock-out and without a concern for out-of-pocket payments.

And this was done by a generous contribution from St. Jude Children's Research Hospital of $200 million. Now, I know that sounds like a lot. We cannot trivialize numbers like $200 million. What it means in terms of number of lives saved: we're hoping to reach 120,000 children in the next five years. 

To alleviate the financial hardship with families, to assure them that the medicines that they will receive will be of a sufficient quality, that there will not be stock-out when they get to the clinic, that we will know where the product was from the moment it was purchased to the moment it was dispensed. For that family is a level of assurance that's priceless.

These are medicines that every child with cancer deserves, and this global platform is living out that ambition.

Alicia: I wonder if you could share with us what your, what your goal is – I think it's by 2030 – in terms of: how do you judge success with this program?

André: It was in fact in around 2017 when we sat with partners initially, with leadership, Dr. Jim Downing from St. Jude Children's Research Hospital, and said: What is really needed? What is an ambition that we can stand behind as a community?

So we started socializing some ideas with the community. There are key stakeholders in international society for pediatric oncology, childhood cancer, international. We knew we needed to hear the voices who affected families. And so the first step in developing a vision was to have community ownership.

And with that, 60% survival is a minimum that we should expect and drive ourselves to. Of course, improvements take time, so we gave ourselves a 10, 12 year trajectory to try to achieve it by 2030.

Alicia: And I think that the estimate was this would be saving 1 million lives from start of initiative until 2030, which is incredible.

André: Yeah, this is a dream come true. You know, you at the Good News About Cancer really do help remind us that this is about people and not just about statistics. And it's important that we say numbers like 1 million. But I think all of us, the minute you meet one person whose family has been affected by cancer, that number has even more resonance, even more meaning and inspiration. And when we start talking about numbers of that scale, it's almost impossible to fathom the joy that we can celebrate.

Alicia: So, where do we go from here, André? You know, I think we've, we've talked about these broad ambitions, but I would love to hear as you meet and exceed the goals that you've already set for yourself, where you go.

André: One core principle is that we need to bring whole of government approaches. So in addition to ministries of health, that includes ministries of finance to ensure that childhood cancer is appropriately accounted for in national budgets, and that financial protection is assured. All sectors of a government have a responsibility, including legislative. 

When we think about the lived experience of families affected by cancer, what it may mean as a caregiver that doesn't receive any paid family leave, what it may mean as a child who will be subject to discrimination for any chronic conditions or for any disability, those are legislative solutions that are the minimum of what we can do as a community. And so we are increasingly working with governments outside the Ministry of Health, with legislators, with ministries of finance, to be able to say: what can you do to contribute to the care needs of children with cancer? So that is a core pillar of the vision for the next years and for the decade ahead.

A second is to continue strengthening and expanding partnerships. We have hundreds of partners that have supported this initiative. We need to preserve those partnerships, celebrate those partnerships, and expand those partnerships. That is the second core pillar of our vision for the next years ahead.

And then finally, how do we drive meaningful innovation research that meets the needs of affected families? Let's talk about drug development and how much of drug development needs to be refocused on children and the unique conditions that they have. How do we drive innovation, but how do we also expand that research envelope to include dimensions like implementation, science? We have to understand what we're doing.

We can learn and advocate together not only at a local level, but at national, at a global level. So this is an opportunity for all of us to move. And for research funders, for professional societies, for clinicians, for advocates moving together will determine the future of childhood cancer.

And so all of the vision for the next decade revolves around this principle. If we move together, we will move further.

Chuck: André, you've had access to so many different countries. This project has such great possibilities for impact. We're talking about a million lives saved, huge goals. 

I wonder if you could tell us, has there been a moment for you, a story that you've heard, a case that you may have been involved in or heard of, that's part of this process that can really help us to bring it home?

André: Yeah, thanks Chuck. These are the moments, I think all oncology professionals remember very salient experiences walking into a room and seeing people affected by cancer. The look, the disposition, what is in the room, how clean it is, the specific emotions that you feel in that room. 

There are a few countries in which this is, it immediately rings a bell, but perhaps one in Afghanistan is important to share with listeners. This is of course a very poor country, that suffers from war, from instability. And I remember well walking into the pediatric oncology ward in the hospital, in the main treatment hospital. 

When you walk into these rooms, there is no one person per room policy. Walking into that room, you see 10 families, and by families it's usually four or five members. So you have a room that perhaps is 30 feet by 20 feet, and you have 40 or 50 people in there. You see dishes, and when you look around, what's interesting is they're sharing food. They're sharing food because they're deciding that the way to survive is to care for each other.

And then you see the kids, there is no way to describe what the faces look like. There is always a twinkle of hope in a child, and that is perhaps the greatest privilege of working with children. There is the hope of tomorrow, a hope that their pain may be relieved a little, maybe even the hope that they can survive this cancer.

And then you pause and look and see bones that are popping out from the skin because they're not well nourished. You see hair loss, but only partially loss because there isn't the support for basic hygienic care. You see the parents that are lying their head on the bed next to the child because it's probable the night before one of the kids in the room was crying all night and no one has slept.

And you realize this could have been any family. I could know this person, and what would I not do to see this person live a full life, the child and the family? And that's why I often say to people working at WHO is such a privilege and such a responsibility.

There is not a moment that goes by that I don't think about that. And I know that's true for oncologists around the world, part of being an oncologist is that your stories are seared in our hearts. The challenge for me is it's the story of children and adults that are in some of the poorest places in the world, and that motivates all of us to keep moving forward.

It's not easy. Working in cancer is a demanding job, particularly at the policy level, but we can describe those faces. I know the two of you can and I can do the same. Exactly what they look like, exactly how they felt, and, and that is the reminder for us of why we do what we do.

Alicia: Well, thank you so much André. The picture that you've painted of, of the people that you've helped and really the concrete numbers that you've shared to help us understand the vision for the WHO and this initiative on cancer childhood cancer has been enlightening and truly inspiring. We really appreciate your time.

André: I thank you both. It's an honor to be here.

Chuck: Great to have you.

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Alicia:  Wow. A million lives by 2030. Can you even believe it? 

Chuck: Yeah, it's wonderful to think about that. And when one considers the years of productive life ahead of somebody who's cured of cancer – if you cure a 9-year-old from cancer and they go on to live to be 85 – you think of all that life that follows that cure, and that's going to be so good for so many of those countries, and I look forward to hearing more about it. 

Alicia: And those children and those families, and the families that the children will have because they have the opportunity to go on. 

Chuck: Exactly 

Alicia: So just an incredible initiative that the WHO and St. Jude's are championing to try to make such an incredible difference. 

Chuck: Yeah, so I'm really glad we came across this program. It was really great to meet him, and it will be fun to check in down the road and see how things are going with that program over time. 

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Chuck: Thank you for listening to the Good News about Cancer. I'm Dr. Chuck Ryan at Memorial Sloan Kettering Cancer Center. 

Alicia: And I'm Dr. Alicia Morgans at Dana-Farber Cancer Institute in Boston. The views we express on this show are our own and do not represent the views or opinions of the institutions where we work. 

Chuck: Thanks to Lilly for support of the show. Our production partner for this series is CitizenRacecar. This episode was produced by Anna Van Dine with post-production by Alex Brouwer. 

Alicia: And there's a whole lot more good news to talk about. So make sure you subscribe to this wherever you listen to your podcast. And if you like the show, share it with someone you think might find it interesting. 

Chuck: And between days shoveling and nights sitting in front of the fire, we'll be back again soon with some more good news about cancer.