What happens when a journalist turns the lens on herself — and uses what she learns to change how communities face cancer? Ysabel Duron, Founder, President, and Executive Director of the Latino Cancer Institute, reflects on how her stage II Hodgkin’s lymphoma diagnosis in 1999 became a personal and professional turning point — one that inspired her to help children, families and communities confront fear, stigma, misinformation and the silence that often surrounds cancer.
Featuring:
Ysabel Duron, Founder, President and Executive Director, The Latino Cancer Institute
Host/Producer: Carol Vassar
TRANSCRIPT
Announcer:
Welcome to Well Beyond Medicine, the world’s top-ranked children’s health podcast, produced by Nemours Children’s Health. Subscribe on any platform at namourswellbeyond.org, or find us on YouTube.
Carol Vassar, podcast host/producer:
Each week, we’ll be joined by innovators and experts from around the world, exploring anything and everything related to the 85% of child health impacts that occur outside the doctor’s office. I’m your host, Carol Vassar. And now that you’re here, let’s go.
MUSIC:
Let’s go. Well Beyond Medicine.
Carol Vassar, podcast host/producer:
Today’s conversation centers on cancer care, alongside culture, communication, trust, and what happens when science and community meet. My guest, who I met at South by Southwest in Austin, Texas, is Ysabel Duron, founder of the Latino Cancer Institute, a journalist by training, and a cancer survivor whose personal experience reshaped her professional life. For more than two decades, she has worked at the intersection of lived experience and evidence-based science, helping Latino families navigate cancer with dignity, clarity, and culturally grounded support.
In our conversation, Ysabel shares how fear, stigma, misinformation, and silence have shaped cancer outcomes in Latino communities. And how education, listening, and community partnership can change that trajectory. We discuss the role of families and caregivers, including children, and why culturally respectful science-based communication is essential to improving outcomes. We’ll also delve into the emerging topic of AI in healthcare and the importance of ensuring that new technologies serve patients and not the other way around. We begin in 2000, when a cancer diagnosis inspired her gradual pivot out of TV news and into patient advocacy. Here’s Ysabel Duron.
Ysabel Duron, Latino Cancer Institute:
Actually, it was in some ways no choice. This was the year 2000. I was being a good, healthy person. I kept going to my regular checkups. My gynecologist found a dark spot that he wanted to investigate. And as a result, we came up with a stage 2A diagnosis of Hodgkin’s lymphoma in the pelvic area. And I had two thoughts. First one was, “Okay, God, this isn’t about dying. What’s the point?” And the second thought was, “I wonder if I should do a story.” So, I took the opportunity, knowing and thinking about cancer in the year 2000 as something we’ve put up on television and talked about. And I thought this is an opportunity for me as a journalist to show what this looks like on a person. I did turn the lens on myself, and that put me in a position after myself, three months of chemo, another month of daily radiation, having the experience of what this felt like to every human being.
And of course, I veered off that path, because I think we all have our individual journeys. But it just prepared me, one, to understand some of what this looks like. But two, it also put me out front in the cancer arena. And a woman said to me, “Ysabel, I’m talking to these Latino women. They’re doing support groups for Spanish-speaking women with breast cancer. I don’t think, as a white woman, I have a right to tell them what to do.” Which I know was funny. And she said, “So, could you go talk to them?” What I did was I went and listened to them about what they were doing, and having sat on other boards, et cetera, I said, “Well, what you’re doing is really important, exciting, and interesting, but there’s probably going to be a need for more.”
And I said, “Therefore, I think you’re going to have to plan to grow. If you grow, you’re probably going to need money to scale. To get money, you’re probably going to have to become a 501 (c) (3) as a nonprofit.” They talked about it for a number of weeks. And one day, I left the room, and when I came back, they elected me president. Surprise.
Being a person who enjoys challenge, or because I’m darn curious, I accepted this. Put your money where your mouth is. But that led me on this other trajectory here. I didn’t leave television; I just brought television with me into the experience. Because not only did I stay in TV for another 14 years, but I used it in order to inform, and particularly, to reach out to the Latino community, but to also bring them into a space where others could observe them. One of the things that I ended up doing was creating what I called a Mother’s Day Walk Against Cancer here in Santa Clara County, Silicon Valley, to bring Latinos into the street to walk and publicly face this issue that so many people were, it’s the big C. And I wanted them to recognize that we were all in this together, either as patient or caregiver, family member, loved ones, buddies, et cetera, but that we needed to be public about it. Because there was such a fear behind the word cancer. And unfortunately, still is.
But my mantra since then has been talking about cancer won’t kill us, the silence. Given my skill sets and what I started to learn from research, what I started to learn from patients gave me a PhD in lived experience that I couldn’t have done in the halls of Stanford working on a postdoc. But they became some of the academicians, and mostly Latino academicians and researchers across the country became my best allies. My bookends, if you will. My instructors taught me that as I was trying to bring the practical back to community, I was also bringing the science and how the science led to this, or how it actually understood how it created circumstances in our communities that set us up for becoming cancer patients. But making it this continuum of information and streaming and care so that people could actually have this picture in their minds about what it looked like ,instead of running away from this nebulous thing that felt scary and they could not imagine.
Carol Vassar, podcast host/producer:
It sounds like you’ve brought everything together. You’ve brought in listening to the community, implementing what you’ve learned from the community, bringing what you brought from television, looking at what the academicians are doing and the researchers are doing, and brought that all together. As you refer to the big C, I’m assuming you’re talking about cancer. But there’s another big C here, and that’s culture, which is a huge challenge. You talked about fear. I want to bring in the idea of misinformation. At what point did you realize, and how did you realize that fear, misinformation were really shaping the way people, and I’m thinking mainly of families affected by cancer, but everyone approached cancer treatment?
Ysabel Duron, Latino Cancer Institute:
Well, once again, we could pull out something much later in our history, and that’s COVID. And we can see how not just Latinos, but many people across this country reacted to a lack of understanding of science, and how they responded to the idea of this vaccination. But guess what, Carol? Just like I was in television, I go out in the street, and I talk to people about the issue, the story. And my intent after was always to say not just the problem, but what are some of the solutions? And this became really ingrained in my mind once I got into the cancer space, but it was always about, who’s working on a solution? Let’s not tell a community, “Wow, you have this big problem. Bye.” Is anybody doing something about it? Can we actually come up with answers? And so I was always looking for that as well, but back to culture.
Well, having been raised Mexican, I know how Latinos… Well, Mexicans are at least. I know what happens when you’re culturated that way. I saw within my own family, because there was certainly enough cancer, that there were conversations around it, but never about it, even trying to learn from my auntie when she eventually died of her own cancer. But ultimately, in 2000, as I built those agencies, what I created was the first thing was education. And within that education was also support groups. Education that went out to the community, and then education within the community of patients, so that we could address the different kinds of issues that were coming up for them. One, we educated promotores, community health workers who understood the language, could bridge the culture, looked like the community, but had the corazón, the heart, who really want to help. And did not shy away from out of fear or concern, but embraced the issue so that they could go and help others.
But the cultural part, which to me, Latinos are not a monolith, we’re a diaspora. Our histories, even culture, our lived experience, our geography, all of that impacts the cancer diagnosis, honestly.
Carol Vassar, podcast host/producer:
It’s all different.
Ysabel Duron, Latino Cancer Institute:
It’s not all totally different, but each of those can have impact. Just as we’ve known, just where you live, your neighborhood zip code can make a difference if you’re living in a wealthy part of the state or you’re living in a very agricultural part of the state, and your zip code says you’re more exposed to toxins that are going to drive or possibly cause a cancer. Those things matter. All of those social determinants of health, as we like to call them, have bearing on many health diagnoses, not just cancer.
But anyway, what I wanted to do, for me, all of the training and learning we did were listening sessions. What are you thinking? If it’s talking about myth and misinformation that you referenced, I learned from them where their heads were at. And one of the things, Carol, that I recognize is these are not people who don’t want to know. They’re concerned about putting the toe in the water, but they want to know. Particularly the women, as we know, because they feel that they’re the carrier of the decision-making around medical, et cetera, et cetera, for the family. They want to know. What I learned was a huge gap along the cancer continuum, which is what we tried to address.
And the thing that I say the most, Carol, that to me is the most critical that I’m still having problem getting public health, getting academics, getting governments to understand, cancer does not begin at the clinic. If in fact you embrace those communities and you start work there first, you will diminish the number of advanced cancers coming through that clinic door when they finally get there, they get there. And if they get there before they’re at their deathbed.
We had, in our support group, a woman who came to us and said she wondered if we could speak to her five-year-old daughter. This woman had breast cancer. Because her daughter would not hug or kiss her anymore since she had breast cancer. Our LMFT, because I love to bring the experts in, she took the five-year-old and had some sessions with her. And she learned that this five-year-old felt that she had caused mommy to get sick and lose her hair. She didn’t want to touch her or kiss her because she felt that she was at fault. My heart broke, and yet it sang because we found this, because we recognize that there is pain in different ways for different people, for different groups. And therefore, it takes that specialty recognition of that cancer is a group pain, and it can really destroy it, or it can bring them together. It has this broad impact. But for this child, we were able to work with her. And her mama was so thrilled when that little girl came back and hugged her.
To me, that is the end of the spectrum on the pediatric side where the child is the patient. We hosted a pediatric support group for parents with kids with cancer, and they were kids getting treatment up at Stanford. The parents would bring the kids, so we had the whole troop there. And the parents would sit and talk, and the kids were over here doing their other things, and so on and so forth. But out of that, also different kinds of needs, different kinds of fears. Here’s the beauty of it, Carol. I had a young man speaking about, once again, information. There was a young man, he was from Mexico, but he was a web designer and he did some work for me. I asked him, I said to him, “Alan, let’s do a book. Let’s do a book based on the experience of these Latino parents and kids. Let’s do something that has the voice of the Latino community on it for other Latinos who face these fears, who think they’re alone. Let’s do this book and reflect that in the book.”
He did the most beautiful little book. It’s called Benito, You Can Do It! It was published back in 2015, or something like that. But it came culturally because they talked about foo, like tamales. He framed it this way. He framed it like the medical team is like your soccer team. Culturally, he framed it that way. And what happened was it was seen through the eyes of a cousin, and Benito, the little boy. The cousin came to the hospital where Benito was being treated, and he said, “I have a secret.” He said, “I had cancer too when I was a child.” And so he shared those experiences. He’s a grown-up, big dude, but I’m telling him about these different stages that they went through.
And I remember, we showed the fact that parents felt guilty, parents felt fearful, parents didn’t know what to do. And so, Benito was over there thinking something he did was the problem, and the parents thinking something that they did was the problem. This was an attempt to address those fears, those cultural beliefs, those misinformation and disinformation that might’ve come from the chisme, the gossip of the families out there trying to help but don’t know a darn thing. Right? Just like this happened in COVID. But wanting to support, “Well, Comadre, I heard this,” or “I read this.” Or, “Give them this thing to drink.” Or not based that in science, but just based in love and wanting to help, but sometimes not doing the right thing.
Carol Vassar, podcast host/producer:
I’m hearing a theme through your work over the last 25 years. It is to approach the issues of stigma, fear, misinformation, disinformation with communication that is culturally respectful, culturally appropriate, and science-based. Would you sum it up in that way? And what would you like to see be stronger in the future? And before we get away, I want to talk about AI.
Ysabel Duron, Latino Cancer Institute:
Okay. You hit it, Carol. We’re journalists, for God’s sake. And to me, information is golden. The right information is golden. The correct information is golden. The science-based information is golden; we just have to translate it for humans to understand it. Right?
Carol Vassar, podcast host/producer:
In their language.
Ysabel Duron, Latino Cancer Institute:
In their language.
Carol Vassar, podcast host/producer:
Whatever it is.
Ysabel Duron, Latino Cancer Institute:
Whatever it is. As you noted from the very beginning, journalism has always been the basis of the work I do because I lived those experiences through other communities, watched and learned from them what hurt, what helped, et cetera, et cetera. And that simply just translated into the cancer field. I just knew that I was now opening up a whole new one, a big learning curve for me, which I’ve enjoyed immensely. But everything I’ve done has been based on awareness, knowledge, and fact. The basis of what I do is about imparting knowledge, making sure it’s correct, making sure people understand the wonder of science. And that we want everybody to have it when they need it, the right diagnosis for the right person, and the right treatment at the right time. And that’s a lot of policy issues. That’s the third leg of the stool that I work with now.
Carol Vassar, podcast host/producer:
I want to talk about AI. When you were at South by Southwest, I was there, I was in the audience. And you mentioned an AI Bill of Rights that’s been developed, I believe by your organization, to ensure fairness and transparency in these emerging technologies. I don’t think we can get away from talking AI in most of the episodes we do. Share with us how you think that is going to come to pass, and how you’ve been using AI with a character, an AI character, if you will, that you have named Bernardo.
Ysabel Duron, Latino Cancer Institute:
Okay. And I love my Bernardo story. But, bottom line is that, actually, it was the Light Collective led by a very brilliant woman named Andrea Downing, very smart about the technology, about the science behind the technology, and very articulate. She brought together groups from around the country of patient advocates to work on this Patient Bill of Rights. And so she, “Oh, I need all Latino on my committee,” so she pulled me up. And I had been doing some work sitting on a transparency committee for Duke University with an organization that started working on these academic payer and organizations, who obviously a lot of it was based on, how do we make money off of this? But then, how do we control it to make sure it’s quality and it worked, bottom line?
But what I was concerned about was, in fact, the lack of information around AI. I saw another AI happening, artificial intelligence happening. I was barely wrapping my arms around it, and they were asking me to sit at these tables to discuss it. And Carol, this was really funny to me. They invited me to this group called Academic Health in DC to sit on a big panel. And of course, I was sitting next to Google, Microsoft, and the FDA. He suggested we start with a case study where they’re looking at no-shows. He said, “Let’s start with you first, Ysabel.” My first inclination would be to ask, did anybody ask him why he didn’t show up?
Carol Vassar, podcast host/producer:
Okay, makes sense.
Ysabel Duron, Latino Cancer Institute:
Doesn’t it make sense to you? I said, “Maybe he intended to show up, but the boss offered him a double shift, and he needs the money. Second of all, the guy who was going to transport him had car trouble. Third of all, he was racing to get there, but he was super late, so he missed the clinic.” And I said, “Because if you bundle all of these no-shows without ever knowing why they didn’t show, and you bothered to ask them, you might bottom line have shown, without doing all of this other research or putting it into an AI formulation or generalizing about no-shows, you might’ve found out that perhaps the majority of them had great intentions. But the fact of the matter is that the clinic or the hospital, whomever, the provider was constantly giving them an impossible task, and that was to show up during clinic hours. When in fact what they needed was a night checkup, or they needed a weekend.”
But instead, it is the patient serving the system instead of the system serving the patient, and that has nothing to do with AI and everything to do with learning, listening, and changing. I said, “You can do this thing with AI, but if you aren’t aware of how patients think and feel and what they’re saying, and you don’t put that data in, so those side notes, if you will, which might give you a whole different complexion or look at the issue, then you’re doing a disservice.” And part of the transparency thing was, well, who’s the end user? And they kept saying the doctor. I said, “Are you kidding me? The end user is the patient on whom all of that diagnosis is done. And then the doctor reads it, and then he tells them what he’s going to do to make them better.”
But that’s the end user. It’s the patient who’s going to use whatever the diagnosis and the treatments the doctor. I said to them, and this was at Stanford just recently. Last year, and they invited me back because I said to them, “The problem is all of you guys are on the 10th floor on this issue. Most consumers and patients are in the basement or the first one.” But one of the things that I said to them, “I’ve been asking a year for somebody to help me do a primer, basic fifth grade low literacy primer on, what is AI?” I said, “And nobody responded.” I said, “So I could show the community.” I asked Bernardo. And Bernardo gave me a wonderful… And he gave me this little graphic. It’s so cute. And I showed them the picture, and it’s a robot, a little boy, and a dog. And it’s so cute.
Carol Vassar, podcast host/producer:
Do you worry about accuracy then?
Ysabel Duron, Latino Cancer Institute:
Well, then I need to go back.
Carol Vassar, podcast host/producer:
Citations.
Ysabel Duron, Latino Cancer Institute:
Well, I need to go back, though, and just have the experts check it. Some of the guys in the room said they would look at it. They’d love to work at it, and show me and help me and make sure that it is accurate in terms of the data. But just making Bernardo look at that in terms of this low literacy level, you’ve given me a lot of genetic responses on the work I’m doing on Latino men and Latino cancer, elevated cancers, and elevated risks and stuff. And he’s pulling a lot out, but he’s backing it up with citations. And so, he’s helped me immeasurably, but I want the community to see it from this perspective. I said, “I’d love to start and go into a high school and take the primer and ask them to invite their parents in. And we all sit there, and we talk about this AI.” Because then I want to say to the parents…
Because the kids are going to get this. I want to say to the parents, “This kind of information is being used in your diagnosis. This kind of information that they’re getting from this big, big, big machine out there called generalized data, we want to make sure that you’re represented. We want to make sure they’re getting it right, because we don’t want the diagnosis to come back wrong, because some of that was missing. I would love for you to go into the hospital record of yours. Sometimes you can get it in Spanish. But somehow go in and look at your record and go through it carefully to make sure it’s not wrong or that they’re not missing something, or that your family history is there. Because that is so critical.” To me, that is teaching, that is raising awareness, that is removing this myth and missing for, what is this AI? And it is also improving the science. Because once you get the community to engage, understanding what it is, why it makes a difference, and how they can help it, then you’ve got partnership.
And this is what, Carol, is what I’ve been pushing about, community collaboration. And I want to tell you one thing, because I want to plug it. The Latino Cancer Institute just got published; it’s called Springer Nature. They’re a major science publishing company based in Switzerland. But we were invited a couple of years ago because we had done our forum on climate change, cancer, and the impact on the Latino community. And our keynote came out of ACS, but she’s Latina, and she’s all about climate change, and so on and so forth. She invited us to try to write, and I don’t think there are too many patient groups or particularly Latino voices that are non-academic that are in these journals. So, we wrote it, I started with a Latina… Well, actually, she’s Filipina, but she came out of UC Berkeley. She’s now at Yale in the environmental science department.
And then, my own young graduate who helps me with program managing. I wrote some of the drafts, they fixed some more, and then I fixed the finals. And we went through about seven drafts before it was ready to go. But it took a period of two years, over time, while we’re doing all of these other things. It’s a learning curve. But I was determined. And given that I had the privilege of being asked by this woman who trusted us, believed in us, to ask us to do this. And so we just finally… And I did something else that is still a difficult thing. Most of these publications are behind paywalls. Unless you have a subscription, you’re not going to see all this work, which is something I’ve complained to the journal folk. If you want the public to know about all this fabulous science, stop siloing it behind these paywalls.
And yes, it’s fancy, it’s difficult to understand, but if you can get the basics out of it, it’s improving all of our knowledge. And once again, it’s introducing communities to science, and someone will be able to explain it to them or for them, which is why you need to let community organizations and advocates get into these. And so, more researchers are now paying for the privilege of taking it out from behind the paywall. I agreed to do that because I was just frustrated by the idea that I couldn’t get the public to see what I thought was historic, right? Oh, look at the Latino Cancer Institute doing this article, getting it out there. Woo-hoo. And it was fairly long. It was a very long commentary. And I’m proud of it. I’m not sure if it meets scientific standards, but I agreed to pay, and it was not cheap, Carol. But everybody can see it. Everybody can download it. It’s called Climate Change, Cancer, and the Importance of Community Engagement.
Carol Vassar, podcast host/producer:
I have one really important question before we wrap up today.
Ysabel Duron, Latino Cancer Institute:
Okay.
Carol Vassar, podcast host/producer:
How is your health?
Ysabel Duron, Latino Cancer Institute:
Well, I would love to be about 15 pounds lighter.
Carol Vassar, podcast host/producer:
Wouldn’t we all?
Ysabel Duron, Latino Cancer Institute:
I said the genetics, the DNA is the sweet tooth. That’s the DNA. I got the sugar jones. But I know this. I try to go to Pilates, that’s my mainstay. I do think that there is more stress to the job than I’m willing to admit, but my body tells me. One of my bosses said, “Oh, Ysabel can do… But if you want something done, give it to her.” If that’s the kind of rep I had, it’s well worth it. Because if it takes ganas, as I said in the article, it takes ganas. And the community has ganas, that is, determination, will, resilience. If you can find a ton of those people to get behind you, we’re going to get something done, right? We’re going to resist, and we’re going to exist, and we are going to finally, hopefully have movement. That’s what keeps me healthy.
Carol Vassar, podcast host/producer:
My thanks to Ysabel Duron for sharing her remarkable journey, and for the work she continues to lead through the Latino Cancer Institute.
MUSIC:
Well Beyond Medicine.
Carol Vassar, podcast host/producer:
By the way, a link to the published work she mentioned,Climate Change, Cancer, and the Importance of Community Engagement is available in the show notes, along with a link to the bilingual children’s book, Benito, You Can Do It!, which helps kids diagnosed with cancer and their parents gain a basic understanding of the disease and the team that will be helping them.
The Nemours Well Beyond Medicine podcast is about kids’ health beyond the walls of the doctor’s office. Check out all of our podcast episodes via your favorite podcast app and smart speaker, the Nemours YouTube channel, and on our website, nemourswellbeyond.org. Visit there to leave a podcast episode idea, a review, or subscribe to the podcast and to our monthly e-newsletter. That address again is nemourswellbeyond.org.
Our production team for this episode includes Susan Masucci, Lauren Teta, Cheryl Munn, and Alex Wall. Audio production by Steve Savino and yours truly. I’m Carol Vassar. Thank you so much for listening. Join us next time as we kick off the new year, talking about treatments for childhood obesity with an international expert in that field, Dr. Angela Fitch. Until then, remember, we can change children’s health for good. Well Beyond Medicine.
MUSIC:
Let’s go. Well Beyond Medicine.
