United Against Cancer v2: Luke Thomas and Zainab Shinkafi-Bagudu on Advancing Childhood Cancer Care

In this episode of United Against Cancer, Luke Thomas, CEO of World Child Cancer, joins host Zainab Shinkafi-Bagudu to discuss the global fight against childhood cancer. Luke shares insights into his extensive international experience in the nonprofit sector, the holistic approach of World Child Cancer, and the importance of collaboration to achieve the 2030 global initiative.

Luke Thomas is the Chief Executive Officer at World Child Cancer. He is also a Board Member at Lepra. Previously, he has served as the Director of Fundraising & Engagement at Multiple Sclerosis International Federation. Additionally he has also served as the Manager of Business Development – Multinationals, at Sightsavers.

Dr. Zainab Shinkafi-Bagudu is a global cancer advocate, a pediatrician, a UICC Board Member,  Founder of the Medicaid Cancer Foundation, and the Chairperson of First Ladies Against Cancer (FLAC). Dr. Bagudu is working with the state ministries of health, education, and women affairs to implement programs to sustainably improve menstrual hygiene, girl-child education, economic empowerment of women, and put an end to gender-based violence. Zainab Shinkafi-Bagudu is a member of the Editorial Board of OncoDaily.

00:00 Recap
01:08 Data and Treatment Quality
04:40 Focus on Treatment Quality
07:50 Enhancing Early Diagnosis
12:20 Collaboration and Hope
13:45 Conclusion

Zainab Shinkafi-Bagudu: My next question which was about technology and how organizations like yourselves can use the power of technology. We all agree that technology is really vital in moving forward cancer control and using that data but unfortunately not all countries and organizations have access to clean qualitative data.

So that is an area I suppose. Do you do any work in terms of exchange of technology or skills with low-income countries where there are childhood cancer organizations or not?

Luke Thomas: Yeah, so we do. So part of what we provide, so we have a team that work on data within World Child Cancer and we do employ people who, you know, within the hospitals, you know, we support and employ people within the hospitals who help to improve the quality of data collection and sharing.

But ultimately, you know, our role is not, we’re not a hospital, you know, we partner with the hospitals and we’re, you know, we’re never going to even want to dictate what they should do. It’s up to the hospitals that, you know, the leadership of the hospitals, the ministries of health, etc. to decide what’s right for them and obviously that has to be done largely, I would actually suggest at a national level.

So we don’t, you know, so we can’t dictate what people do but we do always try to share the importance of data and the importance of using data to measure how impactful, you know, are we really doing what we are setting out to do? Are we spending our donors money effectively?

Are we delivering those lives that we’re really here to save? And I think that’s something that we’re just in the middle of writing a new strategy at the moment and improving our use of data and working with our partners and the governments to improve their use of data is going to be an underlying theme that sits within all the way through. The other thing I just want to say on technology as well is I, there are already lots of high-quality, high-tech treatments for cancer available in the world. The challenge actually is not so much the technology for childhood cancer treatments, it’s the availability of those treatments.

So actually the technology exists and part of what we’re trying to do is actually to make sure that the technology we already have in terms of these treatments, these life-saving treatments, is getting to the countries that we’re working with and I think that, you know, obviously as things evolve and those thresholds about what we can do in cancer evolve, it’ll be, again, continue to be our job to make sure that those new advances get into country.

But right now that, you know, the countries we’re working in, often the treatments they’re getting, we regularly, you know, talk to our country teams about them getting low-quality versions of life-saving treatments and when you have a cancer treatment that doesn’t have enough of the active ingredient in it, it’s effectively a death sentence for a child as far as I’m concerned. You know, it is, it feels morally, professionally wrong that any treatment like that should be provided to any country for any child because it’s a life-saving treatment and we have an obligation to ensure that those treatments are the highest possible quality.

Zainab Shinkafi-Bagudu: Yeah, you say that with a lot of passion and then but, you know, sometimes when it’s morally wrong, I agree. When you look at some access programs, for instance, the WHO has a World Childhood Cancer Initiative that is working in partnership with St Jude’s to provide these life-saving medications and there will always be the argument of, is it the numbers or the quality? Are we going to provide the, you know, generic drugs or the others?

So it’s a debate and one that relates to the economy of not just the countries but the world and not that cancer.

Luke Thomas: I think there’s a good conversation to be had there and I think that, so the program of St Jude’s, the global platform, I think it could be a really powerful vehicle for improving the quality of treatments and we’re fully, fully supportive of that.

We’re very much looking forward to partnering on that as well. I think the question about whether it’s generics or branded, I’m less, I mean, from my perspective, I’ve been working in international health for many years, I’m less concerned about whether they’re generics or branded. I’m much, much more concerned with whether if it is generics, whether they are approved high quality treatments which have gone through rigorous testing and, you know, and do what they say they’re going to do and that’s much more, for me, that’s much more important than the brand.

I think there’s different, there’s obviously, there’s nuances there which we could spend the rest of this whole podcast discussing but it’s, but I think that, I think one of the things that the global platform will really help to do is to ensure that whatever those treatments are, they’re high quality and they’re affordable and they’re available and I think that’s the, that’s the starting point for anything that we, that we could do going forwards.

Zainab Shinkafi-Bagudu: Definitely. So I’m going to end with one question that is sort of two-pronged before I give you the chance at the final words.

In your pillars you spoke about awareness and yes, that is the usual range of the cancer spectrum. We start from awareness down to treatment. Not everyone goes into palliative care but I want us to talk about it in the context of children and the work you do.

So when you do awareness in the setting that you’re operating in the UK, how do you find the reception to, of parents for instance, not the ones that already have the children with cancer but you know, educating the general communities about knowing about early detection of childhood cancers and then also the healthcare workers. For us it’s the issue, the big issue which I want you to also talk about is the ability to diagnose it early. A lot of healthcare workers in my setting are not immediately tuned on to childhood cancer.

We go through the infectious diseases that are in our environment first, like malaria, but of course you have overcome the infectious diseases to a larger extent but in Africa it’s still a huge burden. And then if we go right to the end of the spectrum, what we don’t like to talk about, we’ve spoken about how the outcome for childhood cancer is really quite good but there are those that unfortunately have to go through end-of-life care.

How is that dealing with parents from the perspective of running a non-profit organisation and what kind of support do you offer?

Luke Thomas: Yeah, so two super important questions and things I’ve actually been speaking about quite a lot recently.

So I think that one of the biggest impacts we could have, you know, you and I together and all of the different organisations that we can partner with is to improve early diagnosis. There’s around 50% of children never make it to diagnosis or make it too late. You know, they’re arriving at stage three, stage four, you know, quite often because of the challenges of diagnosing early or getting to diagnosis.

And I think that that is one of the sort of four pillars that we’re working on and we’re really trying to kind of think about what can we do differently, you know, how can we do more in this area because it’s complex, you know. A friend of mine who is a doctor here in the UK was talking about something similar. He was saying that when you’re trained as a doctor, you’re trained that when you hear hooves, expect horses, don’t expect zebras.

You know, you expect the familiar, so you look for the familiar and that means that you lose time, you know, and time as we know is crucial in the diagnosis of cancer. And so, you know, I think to a certain extent, we need to train people to expect zebras. But we also need to, and this is one of the big challenges in public health, is to get people to that doctor in that first place.

It’s that health-seeking behaviour that we really need to see is that, you know, and it’s really hard when you have family, you know, we’ve all got family pressures. It’s hard to make the time or to see those things happening because they happen over time, but it’s just to look for it, to be aware. Like you said right at the very start of this conversation, people don’t even realise that childhood cancer is a thing.

You know, it is rare so people don’t expect. So we need to make people aware that it’s a thing and then we need to work with, you know, community leaders, you need to work with hospitals, you know, faith leaders, all the different people who influence people’s choices in their lives and make sure that message is getting out there so we’re getting more children to hospital early enough to be treated. Because I think we can get the treatments there, but we need to get the children there and that will make the biggest difference.

Because for us as an organisation, that palliative and end-of-life care is vital and I think that, you know, if we’re not getting children there early enough, we spend a lot more of our money on palliative and end-of-life care than I would really like to. I’d like to spend a lot less on that and a lot more on treatment. But palliative care, but even in the best case scenario, you know, even if we get to 85, you know, 80 to 90% survival rates in the countries we’re working with and we’re a long way from that yet, you know, palliative care and end-of-life care is always going to be a part of cancer care.

There’s just, you know, you can’t save everybody and I think that one of the things that we need to do better, people don’t like to talk about it. People will talk all day about the glories and the majesty of children being born, you know, it is a magical, magical thing, but we never like to talk about end-of-life care, you know, we don’t like to, because it’s horrible.

I mean, who wants to talk about, whether it’s your parents or whether it’s, you know, especially if it’s children, you know, so we have, but it’s part of life and it’s certainly part of life lived with cancer, you know, so we have to be able to find a way to talk about it in the same ways, you know, the parents are talking to their children about it.

We need to find better ways and be more confident about talking about it openly and, you know, obviously kindly and thoughtfully, but to find a way to, because providing good quality end-of-life care is just as great a success for those children who can’t be saved, giving them dignity, time with families before they pass, for me, it’s just as great a success as actually for those children we can save that we do get there in time, and I think we need to recognise that and we need to make sure that the public support that and realise that that’s really valuable part of what we do.

Zainab Shinkafi-Bagudu: Thank you so much Luke. Your final words, I want you as the CEO of an organisation that is involved in childhood cancer control to talk to me as the CEO of an organisation in cancer control in Nigeria.

Tell me what would be your final words of advice? I’m not sure I have any words of advice to be a doctor.

Luke Thomas: But my final thoughts, yes, the thing I would actually love to say is that I think that this conversation and the relationship with you and with other people and organisations like you who are part of this world and want to do, you know, want to be part of the network which is solving this, for me, is the most important thing we can do. We cannot and should not be, as World Child Cancer, be the leader in the work we do.

What we can be is a really supportive and powerful partner to support people like you who are actually the gold dust in this whole movement in childhood cancer. And I think that, you know, starting these relationships, understanding where we can add to what you’re doing or where we can support what you’re doing, is absolutely vital for me. And I think that, you know, like I say, we want to be that partner to as many people as we can, because I think that there is the needs there.

Until the need is not there, we will be there as a partner for you. But yes, like I say, no words of advice, just words of hope and collaboration.

Zainab Shinkafi-Bagudu: Thank you, absolutely.

A very good place to end. It’s always good to have partnerships across the world and have that open hand. So one of the things that we’re hoping to achieve by conducting this interview series with oncodaily of various professionals that are involved in cancer care, thank you for your time.

Last ask is for you to say with as much passion as you can muster, because that’s how the interview starts.

United against cancer.

Luke Thomas: United against cancer.

Zainab Shinkafi-Bagudu: Perfect. You don’t have to do it again. Sometimes I need to say do it three times, but that was perfect.

Thank you so much. Well, what a lovely, I say, what a lovely name. What a lovely, you know, what a lovely thing to be part of.

Luke Thomas: Thank you, doctor. Yes, thank you. So I’ll see you later soon.

See you this afternoon. Thank you.

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