Giving with Impact - Childhood Cancer: Treating Children Around the Globe

BARBARA WHEELER-BRIDE:  Welcome back to another episode of Giving With Impact, an original podcast series from Stanford Social Innovation Review developed with the support of DAFgiving360™. I’m your host, Barbara Wheeler-Bride, an editor at SSIR. In this series, we bring together voices from across the philanthropic ecosystem to have a conversation about what’s at the heart of achieving more effective philanthropy.  

In today’s episode, we’ll discuss St. Jude Global, an innovative endeavor at St. Jude Children’s Research Hospital to take lifesaving cancer treatments to children around the world. With the launch of St. Jude Global, the research hospital has set an ambitious goal to cure at least 60% of children with the most common cancers worldwide by 2030. By sharing research and knowledge globally, St. Jude and its network of researchers and institutions seek to amplify their nonprofit social impact on a global scale. Their global approach is focused on capacity building and partnership, two ideas that have increasingly been part of conversations about effective philanthropy.  

Our guests today are Rick Shadyac, President and CEO of ALSAC, the fundraising and awareness organization for St. Jude; Gloria de Dios, retired CEO and current board member of Fundacion Ayudame a Vivir, a global partner of St. Jude, helping children with cancer in Guatemala. And Fred Kaynor, Managing Director at DAFgiving360.  

A quick note about the audio in this episode. Unfortunately, we had a poor audio connection with Gloria, but we know you’ll find what she has to say insightful. 

Before we dig into the topic of global cancer research, I believe there is some news that you would like to share with our listeners, Fred.  

FRED KAYNOR:  There is, indeed, Barbara, and thanks so much. And Rick and Gloria, such a pleasure and an honor to be here with you today to celebrate the remarkable impact that St. Jude and its global partners have had in combating childhood cancer.  

We’ve had a couple of exciting announcements this year. We recently announced our rebrand to DAFgiving360. Our mission as an organization to increase charitable giving in the United States remains completely unchanged, and the new name aims to bring awareness to the ease and effectiveness of donor-advised funds, or DAFs, as we call them, and further engage donors, advisors, charities, and the entire philanthropic community as a whole. Our donors have shown incredible levels of generosity in using their DAFs to support nonprofits over the recent fiscal year, granting over $6.6 billion to charity through more than 1.1 million individual grants, and supported over 141,000 charities throughout the year. This was a remarkable increase of 31% in dollars granted to charity compared to our previous fiscal year. And to top it all off, we’re celebrating this year, our 25^th anniversary. Since our inception, DAFgiving360 donors have supported over 255,000 charities, and given over 35 billion, with a B, dollars to charity.  

BARBARA:  Thanks, Fred. Speaking of news, Rick, most people are familiar with the work of St. Jude, but they may not be familiar with some of the data surrounding childhood cancer in the US and abroad. Can you give us some of that context?  

RICK SHADYAK:  Thanks, Barbara. I want everybody to think about this, 16,000 kids across the United States or their parents are going to hear four of the most devastating words that any parent can hear, ‘Your child has cancer.’ And St. Jude is leading the way the world understands, treats, and defeats childhood cancer. When St. Jude opened its doors in 1962, here in Memphis, Tennessee, survival rates for cancer for kids was about 20%. And today, fast forward, due in large part to research and treatment conducted at St. Jude, survival rates are now more than 80%, and we’re not going to stop until no child dies from cancer.  

And, you know, Barbara, it’s amazing to me that, you know, the federal cancer budget is now almost $7 billion per year, okay? But only 4 or 5% of that annually is dedicated to finding cures for kids, research into pediatric cancer. This is a global problem. It’s not just… the statistics I just gave you are United States statistics, but if we broaden the aperture, we need to talk about 400,000 children around the globe who are going to get cancer. 43% of those children globally will never be diagnosed correctly. We seek, in partnership with the World Health Organization, with Gloria, who we’re going to talk to here shortly, to raise survival rates in these low- and low-middle-income countries from 20% to 60% in the coming decade.  

So it’s a remarkable initiative, all done with public support, just like we’re getting from DAFgiving360 the public that enables us to do this research and to treat these kids, and try to address this global healthcare problem.  

BARBARA:  Thanks, Rick. As we think about that global perspective, would you help us understand St. Jude’s approach to global research and treatment, specifically?  

RICK:  So we’ve been educating and training the global clinical workforce in the pediatric cancer space for several decades now. So what does that mean? That means, literally, we are teaching folks all across the globe, primarily focused in low- and low-middle-income countries on best practices in treating kids with cancer. And sometimes that involves actually traveling to these countries… the St. Jude team does that… and oftentimes it also involves having them come to Memphis, and we, ALSAC, the fundraising organization for St. Jude pays for those expenses. So they come here, and they learn from the best, and then they go back to their countries and apply what they learned. 

But we’re going to take it a step further this year, Barbara, and that’s what I’m super excited about. Again, because of the incredible support of the public, we’re not only going to continue educating and training, but we’re going to be providing free cancer medications to 120,000 of the 400,000 kids all around the globe in an effort to raise those survival rates from 20% to 60%, and we’re doing this in partnership with the World Health Organization. And we’re super excited about this. This will be a research endeavor, as well as a clinical endeavor, and that way we’ll gather all the data to see whether or not we can materially move the survivorship statistics. And our doctors and scientists genuinely believe that access to quality specialty cancer medications will be a game-changer because unfortunately, currently, what folks do in these low-, low-middle-income countries is they buy these drugs on the black market. Oftentimes they’re expired, they’re not of the highest quality, and they’re not given to children on a regular schedule, which is so critical to ensure the best possible outcomes for these kids.  

BARBARA:  Rick, how does the Global Alliance work, and how is it increasing the impact of St. Jude Children’s mission?  

RICK:  So the way the Global Alliance works is we have a membership, okay? So we ask foundations and also clinical partners all around the globe to join what’s called the St. Jude Global Alliance. And this is a collaborative effort. We’re in over 80 countries, just to give you a sense of the scope of this initiative, but we ask them to join, and then also to collaborate, and to collaborate a lot regionally, right? They can share best practices within their regions. We try to share best practices on a more comprehensive or global scale. And they also all agree that they’re going to be participating in research initiatives, so that we can advance cures.  

So it’s a complex organization. It’s part of St. Jude Children’s Research Hospital. Here at St. Jude, we’re fortunate to have several hundred people who are dedicated solely to this St. Jude Global Initiative. And here at ALSAC, we also train foundations in best practices in fundraising and marketing and governance, so that their foundations can support the clinical operations in their countries.  

BARBARA:  Rick, thanks for that explanation. That was really great. And I think a great segue into meeting Gloria, who can tell us a little bit about your role as a partner with St. Jude Global.  

GLORIA DE DIOS:  We have been partners with St. Jude for more than 20 years now. We were actually very lucky to be one of the first countries to partner with them. At the beginning, we were very determined to help our kids in need, children with cancer in Guatemala. We knew very little about raising funds and managing a nonprofit organization. And when I look back at it, this is how I remember it. It was basically a computer and me. I could hear crying children. I could hear also the doctors discussing the conditions of the patients, the hardworking nurses walking back and forth. But I could also hear the lack of medications and the lack of things that they had. I remember, also, the dark and dirty halls, unpainted walls, and very little furniture. And one thing I can picture like it was yesterday, was babies on parents’ laps receiving chemotherapy. I remember, also, mothers sitting with their children on the floor. What I remember from those days was a lot of pain, a lot of uncertainty, and a lot of fear surrounding the project.  

Then ALSAC steps in, and they started sharing their knowledge and experience in fundraising, but also in nonprofit management. And they did this with a lot of their amazing professionals of all the disciplines that they have.  

I think we were raising back in the days less than $200,000 per year, and basically, we did this asking people we knew and acquaintances for money. We had no plan. We had no strategy. And now we’re looking at a foundation that raises a little more than $11 million per year. We have done this by creating fundraising programs that work for us, and this is something that St. Jude and ALSAC have learned to do so well. They understand our context, they understand our limitations, and that makes our programs work. We are the largest and most recognized foundation in our country. We have more than 60 devoted fundraising professionals working for us.  

BARBARA:  Thank you, Gloria. That’s a great story about combining your passion for this work with some of the training you received from St. Jude and ALSAC to create the funds to support cancer research and finding better treatments. 

Gloria, Ayudame a Vivir funded and helped to create Guatemala’s National Pediatric Oncology Unit, and it’s the only specialized center for treatment of pediatric cancer in the country. Can you tell us a little more about that unit and its impact? 

GLORIA:  Through the work of Ayuvi, Unidad Nacional de Oncología Pediátrica was created as the only specialized hospital for children with cancer in the nation, providing basically free care to all Guatemalan families and children. Before our hospital, Guatemala was treating children with cancer with adult protocols, and we knew that had to change. Back then, only 20% of children diagnosed with cancer survived. Due to social and economic issues, more than 40% of the families that were being treated would abandon the treatment. And to understand this, you have to understand the situation from patients. Many of them come from households that make less than $250 per month. Usually, the father works the land, and it's the father who has to travel to the city with the child. That means the mother is going to stay home with the other children, usually five or six, and the father has to travel to the city with the child that has cancer. And that would leave that family without an income. So we understood that we had to do things differently. I mean, with those percentages, 20% surviving and 40% abandoning the treatment, something had to be done.  

So after a lot of struggle, a lot of lessons, and the big help we have had with St. Jude and ALSAC, we are very happy to say that the hospital now has new facilities. Basically, what St. Jude does we do. We take care of so much more than the clinical treatment. We have things like transportation, nutrition, palliative care, family therapy, psychology. We give groceries to the families, so they don’t have to worry about anything else but the child being cured.  

We are very happy to say, today, our survival rates are a little bit higher than 70%, and families who abandon the treatment are less than 1%. So if you put it into numbers, the accomplishments that we have had are just amazing. We’re very happy. We are happy, humble, and thankful.  

We are seeing a little more than 150 patients a day. We have 92 inpatient beds that’s inside the hospital. We have treated around 12,000 children with cancer. We’re very happy about the 4,000 patients who are now cancer-free, and they are a testimony to our inspiration, our community. They come with us. And for every thanks they give us, there’s a little bit of that thanks that we like to share with St. Jude.  

BARBARA:  Thanks, Gloria. So in philanthropy, we know that capacity-building, training, and partnerships like the ones that Gloria has mentioned, play a critical role when organizations hope to multiply their impact beyond their core mission and network. Rick, can you share any other examples of the capacity-building and partnership-building that are part of this global effort, and what specific impact you’re seeing from those?  

RICK:  It’s a multifaceted approach that we’re taking here. So you have to look at this both on the clinical side and also on the foundation side, but clinically, St. Jude Global now provides about 14 different programs for hospital staff in terms of education and training. It’s also with patient tracking, so data gathering is critical, and then best practices in research as well. And we’ve got these partnerships now growing to almost 80 countries, as I indicated before. But what is underneath all that, Barbara, this means that the government is also involved, and the government is on board with supporting these clinics, which is so critically important, right? So this alliance brings all of these people together.  

What Gloria just told all of our listeners about, people have to understand that charitable giving is not the norm outside of the United States. So they literally are starting from ground zero. They don’t have incentives like charitable tax deductions, and things of that nature. And these are countries that struggle economically. Gloria mentioned maybe a couple hundred dollars a month is a good salary in Guatemala. And for them to part with some of their hard-earned dollars is extremely difficult. But think about the generosity of the people of Guatemala that are now giving almost $12 million to support the lifesaving work at Gloria’s clinic.  

And then when you get to the foundation side, we’re fortunate to work with about 130 not-for-profits in 64 countries. And that number is growing exponentially. And we literally teach them the best practices on fundraising, whether it’s mass marketing, whether it’s advertising, whether it’s how to conduct an event, whether it’s an endurance event, a marathon or a walk-run, or a radiothon, or a raffle. We want to understand what will work culturally in their country, and then they can share those best practices. And also research. The commitment that all of our global partners have is that they have to also be research partners with us, both on the clinical side and on the fundraising side.  

BARBARA:  That’s great, Rick. Thanks. And thank you for raising that note about the role of government in scaling the successes you want to see, and how the seeds of those successes are planted in some of the local fundraising and initiatives, and the things that it sounds like you were learning, too, from your local partners about what works in different regions.  

RICK:  I genuinely believe, Barbara, that we have to immerse ourselves in each of these unique cultures. We need to understand the way people would be comfortable giving.  

BARBARA:  Gloria and Rick, I think we could probably keep talking, but I think we do need to start wrapping things up. So I want to ask if you have any final takeaways that you want to share with our listeners?  

RICK:  Yeah, thanks, Barbara. First, I would say to all of you listeners, Gloria de Dios is one of my deep inspirations in my life. To see the work that her and her team are doing under extremely difficult circumstances is absolutely amazing. And the number of lives that they’re touching. I’ve had the good fortune of visiting Gloria’s country several times, and getting to meet some of the patients who are now grown up and cancer survivors as a result of this great work that Gloria is doing.  

I would urge all of our listeners to think about how big this global pediatric cancer problem is, 400,000 children. And the single biggest determinant of whether or not these children survive cancer is where they live. So I would ask if people have a place in their charitable giving strategies to think about the St. Jude Global Alliance, to think about the great work that Gloria is doing in her country, just let people know. We have a partially solvable problem here in the United States, right? Due in large part to the work at St. Jude, 80% of the kids now survive. Still the leading cause of death by disease in US kids today. But in these other countries, it’s 20%, and we think that’s fundamentally unfair.  

So help us address this healthcare inequity on a global scale. If we all come together and we live charitably, as well as give charitably, I think that we can move the needle. And I know one of your mission statements is to increase charitable giving. We’re right there with you. This is the opportunity to increase charitable giving, and you can use your DAF funds at DAFgiving360 to help St. Jude and Gloria continue the great work that’s taking place all around the world.  

BARBARA:  Thank you, both.  

FRED:  We are honored and humbled to speak with you today, Gloria and Rick. The philanthropic research community is incredibly important and can provide a true feeling of community, bringing people together who want to support research initiatives that aim to better the world in which we live. For donors who want to get involved in funding research initiatives such as this, but don’t necessarily know where to start, DAFgiving360 provides several tools and resources, such as our Charitable Giving Guide, our Giving Planner, and others to help identify research charities that align with your charitable goals and passions. So we encourage you to look on our website, check out our resources, and inform yourselves in a way that really helps you to achieve maximum impact with your giving.  

Barbara, thank you so much. And Rick and Gloria, such an honor and pleasure to be with you today, and I wish you all the very best and much success with all of your endeavors in such a remarkable cause. Thank you.  

BARBARA:  Thank you for listening. We hope you enjoyed this episode. Please rate the show or leave us a review on Apple Podcasts or your favorite listening app, and think of three colleagues who should listen and share this episode with them. We encourage you to explore other episodes in this series. We have some great discussions coming up this season on measuring impact, arts philanthropy, and the impact of giving over generations. This podcast series is made possible with the support of DAFgiving360, who played an important role in the selection of topics and speakers. And please visit SSIR.org for the latest stories from top leaders and researchers in the field of social innovation. 

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