Lecia Bushak speaks with Ysabel Duron, founder and executive director of the Latino Cancer Institute, about health equity, especially in the Latinx community, as well as her career spanning from healthcare association leader to award-winning journalist.
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From HLTH 2023 in Las Vegas, Nevada. It’s the MM+M Podcast.
Hi, I’m Lecia Bushak, senior reporter at MM+M and I’m here at the health 2023 conference in Las Vegas. I’m joined on the podcast today by Isabelle Duran founder and executive director of the Latino Cancer Institute Isabel has a background as an award-winning Latina journalist as well as the cancer survivor and has worked as a patient advocate around Latino Community engagement for more than two decades and she’s here with me today to discuss Health Equity, especially in the Latino community and what she’s seen at Health this year.
Welcome to the podcast Isabel. Thank you very much Lesha. I really appreciate the
invitation. This is fun. So to start tell me about your health experience so far you mentioned this is your first time here. So I’m really curious to hear your thoughts on it. Well, I wasn’t sure what I was going to be
looking at. So it was
Kind of interesting in how advanced in terms of innovation digital Health multicancer testing.
All of these really from where I started very Advanced thinking in the health sphere. So it was kind of interesting to do that. But you know what my bottom line thought was well, I had two bottom line thoughts.
How much are they really invested in Health Equity?
And how much is this all about the bottom line and finding another good idea to make money?
You know that I really want to ask you about this because that was one of my questions and we’ll delve into that. But before we dive into some of those questions, I want to hear a little bit more about your background journey in advocating for the Latino Community. Can you tell us a little bit about your story as a journalist and a cancer survivor and how that has influenced your work.
Thank you for asking. I
always say I love journalism. It was my passion but entering into the cancer space is my mission and I was happily engaged in journalism. Even as it was kind of taking a tour turn journalistically for places. I don’t know that I particularly appreciated this we’re talking back in 2013 that sort of because I’d already spent some 40 years in television news starting in 1970.
Going from LA to San Francisco to Boston Chicago and back to San Francisco where I spent my last 20 years on air but it was during that time in the year 2000 that I was diagnosed with Hodgkin’s lymphoma and Stage 2A. So caught very early. So one of the privileged, you know, consistently getting screenings and testing going to my gynecologist who’s the one that noted a dark spot and followed through with with surgery and biopsy to be diagnosed at the age of 52. I believe it was losing sight of that but with with this diagnosis and when he said to me Isabel, this is cancer. I had two thoughts. The first one was okay God this isn’t about dying. What’s the point and the second one was I wonder if I should do a story so I did I turned the camera on.
Self I did a three-part series and I wove different issues through that story. So in one of the things that we did look about because in 2000 believe it or not cancer was still the big sea and it was the reason why I decided to do this story with the focus on me because people in TV land or people who watched our shows knew me and so it was like comparting with a friend what was going on or with someone familial so that I could in some sense is diminish any fear about that word cancer and give people
A much more open look at what it might be about and I was also determined that I would bring men into the picture because too often. Well, I always tell men that their biggest risk factors being male. And so I wanted men to see themselves in this situation and luckily I got an older man who was in this fifties and a young man who was in his 30s and so it was great kind of contrast, but first back to research we went to Stanford and we because I was in the San Francisco Bay area we
We’re asking what are you working on? And in that time? It was immunotherapy and now immunotherapy is one of those Advanced Medical interventions to help cells fight, you know the bad guys and so
so I had that and then I went to a male psychosocial support group to get some to listen to men talk about this issue.
but they also interviewed the 52 year old and he said
He says oh I am. I’m over there. I’m crying I’m upset and you know, then I saw my children and I realized I needed to be different right and I thought
Cool, he’s talking about crying. This is important. But at the same time the idea of he needed to Buck up for his family was kind of interesting very Macho in some ways, but it’s the way in some ways learning from research and thinking about Latino machismo.
Learning that in fact machismo can be both a Bane and a boon and that that kind of resilience and attitude to stay strong really helps you through this because it is a pain in the butt. It really kicks you and knocks you down particularly. If you’re doing chemo re and radiation depending on where they’re shooting all of that stuff really takes you out. So you need every bit of fortitude you have so I really appreciated this man saying this I cried and then the older the younger man at 30
With his testicular cancer, which had gone undiagnosed for six months and my oncologist told me we could have got him a lot earlier if his position had known what the hell he had.
But he didn’t and it by the time the doctor saw him it had gone to his brain.
It had gone to his lungs.
And yet he had all indications that he was going to survive it, but he was also sterile.
And he says here I am 30 years old walking around the bald youngest guy in the room. He was really Charming young man just to hear those stories and to watch how people internalize these experiences. So it was lovely to put it on television, but it also made me kind of this poster child cancer poster child. So I was invited by a group of Latinas to to meet and see what they were doing, which was to provide psychosocial support for Spanish-speaking women with breast cancer. And I said, well, this is wonderful. I think you’re going to probably end up having to do more that means you’re going to need money. That means you’re gonna have to become a 501 C3 nonprofit.
And so they discussed it for a couple of months and one day I walked out of the room and they made me president.
That’s how I launched into the cancer landscape and I recognized even at that time I said, where are all the Latinos what is happening with them? And so that is why I got into this field and by 2014 I left.
Television and just decided to dedicate all of my time to to looking at the Cancer landscape for Latinos and now here at the national level with the Latino Cancer Institute amplifying the Latino voice and concerns around the issue always been collaborating research to find out what drives this in Latino community and what are those answers to addressing those and then working on policy because bottom line is you can help one patient at a time. But if there are systems barriers
It almost is almost you would say almost useless because you’re never going to stop it at its root. If you can’t get people detected early in and treated, you know, equitably and carefully you’re going to have a lot of late detection and a lot of higher mortality which were Latinos one in five. Latino deaths is due to cancer.
Yes, you bring this really interesting and unique perspective to health and you mentioned earlier that you were walking around the show floor and you were just, you know, overwhelmed by the amount of new innovative solutions or Technologies and companies pitching these ideas and I want to ask, you know with your perspective. Do you really feel like these solutions that are being discussed at health?
May reach communities that need them like the Latino can read Community or other communities that might be marginalized and face Health inequities, or is it sort of detached from The Real World? I guess I would love to hear your perspective on that. First of all, I wasn’t so much
overwhelmed as amazed at how Healthcare has expanded in this direction, you know technology Health digital Health artificial intelligence and how much it’s taking over many many parts of Health Care.
And my but my thought was how much of this is really about medicine and good health. And how much about is this about finding a new you know thing?
Till people will so they can make money because to me in many ways medicine is evolved into a money-making business and therefore we don’t need a healthy Society. We need a six Society. So it’s not just about the Latino Community. It is about all of us it is about do we really want to move to prevention and we want to stay sick and I just have to keep taking these more expensive medicines. I don’t want that for people, you know, I mean, yeah for stage and they give me these fancy medicines that may or may not cure me for the long term or can I start to really look at the fact that I’m overweight? I already have type 2 diabetes if I keep not taking care of myself. I could trigger perhaps a Cancer and that one may not be good. And and so whoa, what do I do? How do I step back? How do I begin to really take charge of my own health with what medicines there are but
Finish my risk for dying and for living badly because being unhealthy is living badly. And so, you know, I always say health as well and you depending on your health to be a productive worker.
partner
parent, you know Citizen and so it really is critical. So when I look at this I’m saying, you know all you Smarties fabulous.
Are we really putting it to work to make people healthier? Are we putting all those brains to work for that bottom line? I think that’s a really good observation because
I’ve been wondering the same thing. So you’ve been have you been talking to people and asking them questions about Health Equity and how their companies and their Solutions are going to dress some of these things. I’d love to hear, you know, some of the thoughts that you have based in your
conversations, you’ve had at the conference so far, you know, I I walk through and I peek and I look and decide who I’m gonna speak to there was one that I really enjoyed and this is the focus around healthy eating because we’re you know, we have this, Mass.
Produced food that is killing all of us. And unless we swerve and go back to healthy eating. We’re all putting ourselves in line for some kind of a an advanced disease.
And so I sat down talked with them and I really loved it because they are focused. They are concerned about Health Equity and they’re also talking about culturally appropriate food. So, you know if I’ve been eating tamales and enchiladas all my life and you’re telling me I can’t eat any of that now that’s not helpful. How do you work with people within their own context which whichever ethnic religious observations they have for their food. You can’t just take it away and say to be healthy, you’re the one you the system. You’re the industry have to learn how we eat and figure away around that so we can eat healthily within the bounds of our own ethnic cultural ways of believing and being and enjoying and partnering with each other a family meal is really critical and if you take everything else away from them that is
What unites them you know for me Christmas Christmas Eve was always about standing around the table and making tamales with the whole family. Then we put them in the pot to cook in a way. We went to midnight mass. Right and it’s still in my mind all of these 70 some years later. Well, maybe I was about five seven ten when I was standing around those making those tamales. So we’re talking 60 years ago. These are cultural things should not be ignored and when people want to shove you into their space instead of understanding how they can come into your space and help.
Make things better. That’s to me not a winning solution. It’s not a win-win and you may be able to make money off a top 10 but you’ve left another 90% of the community the you know, the public outside of the of your scope so my conversations with any number of them was about Health Equity. What were they doing about it? And I would listen for signals from them if it was in fact intentional or if it was just the flavor of the month kind of a conversation interesting
and how do you differentiate usually?
Play some what they say.
Well, first of all that sense of sincerity that they know there’s an issue you get a sense. They really want to do something. But are they asking the right questions of the right people and bring those people aboard with that specific lens. So I remember asking a biotech company the other day I asked them. Okay, you’re bringing us a board, you know, it was Native Americans and Latinos and and the work that we’re doing around cancer issues. And I said, so we’re talking to Health Equity I said, so can you tell me or could you say tell us what your hiring looks like? Are you Dei all the way is your policy such that you’re reflective of in fact all of these communities and she oh good question. Let me check and came back to me later and said the HR come the HR department said I couldn’t share that.
And I said, what do you have to hide?
Are you then telling me that you really aren’t reflective of Dei? Why would you not want to be proud to share that right? So those are some of those internal practices that I look for. Are you walking your talk? Or is it just flavor of the month? Because we have been talking about disparities for as many years as those of us in community doing this work have been around and I’m new to the game of 23 years. There are people who have been doing this for very long time. So I’m listening for the sincerity. I’m listening for the intentionality and then I’m willing to educate and help them rethink and out of the box how that and then I say you need to invest it you invest in local community-based organizations work with them. I said, you know, this isn’t just about good science. This is about good medicine and I tell the researchers the same thing.
You know, so you need to have inclusivity in your in your research who’s at the table who’s in the clinical trials. And so it’s the number of factors. I we’re far from I think inclusion and Equity, but I think there are also those of us the voices from the outside as well as those in the inside the pipelines Fuller with communities of color representing and research and at the CEO tables trying to be, you know, trying to do their own thing to address these issues. So we’re ways from there, but we do have a voice and we’re trying to use it very appropriately at the right time in the right place
and you mentioned this idea of companies going to where people are rather than expecting people to go over the companies are
You know based on what you’ve seen so far this year what percentage of estimate of of these companies here? Do you think are actually going to where those populations are that need, you know?
Access and solutions. I’m just curious if you have like a vague estimate of what you think,
you know, actually I don’t I mean how many companies are there down there? I didn’t even walk past most of them because I would look up and some of them are, you know, working with clinicians or for their creating ways to use your each are records and there’s different things. I would have to probably look at a lot more of them to really see whether in fact they are vested there. But you know what, I think anybody with a brain and anybody with eyes if you look at the diversity of this country and you’re not planning do include I think half the population of this country, which is diverse, then you’re losing money and you’re not prepping your own offices and your own corporations in your own companies to in fact
Make a buck because this is you know, Latinos are 62 million. We’re not a ma monolith. We’re a diaspora and when you look at our GDP, this comes out of UCLA Center for Latino health and culture. We are something we are like a three billion dollar entity and if you look at us and the GDP, we’re like
fourth after Germany or fifth after Germany and before India in terms of our GDP, so we do have money.
You know, some of us are much poorer and then some of us.
But we have to buy medicine. We have to get health care some of it not good health care. So if if they’re not thinking that the Latino Community is anything but poor immigrant running across the border recently, then they’re really losing out on a lucrative market and if they don’t understand that market have it looked at it haven’t talked to people from it don’t have that appropriate lens, then they’re going to lose a lot and then Latino Community is live. Actually, it’s a younger population. They’re the backbone of the economic continue to growth of this country. So if you’re not investing there, then you’re not paying attention and you need to do that scan that environmental scan of every single Community racial ethnic community and understand them.
You know and don’t try to stuff them into the mainstream umbrella. Absolutely
you touched on some of the the barriers that the Latino Community faces, you know in Cancer Care, what would you say are some of the the main barriers that the community faces and Healthcare in general?
Yeah. Well first there’s cost.
I think what in Cancer Care 62% of any population or any cancer patient ends up in debt.
3% go bankrupt. It is just an expensive disease to have So within the Latino Community what you might see are people are not getting all of their medications because they can’t afford them.
And there aren’t a lot of props or prop up organizations to help them survive through that that challenge. So there’s that. There’s also language barrier for a certain percentage of the population I’d say about 20% So if you’re not linguistically and culturally appropriate provider
You’re going to the health outcomes for those patients is not as good because they’re not understanding what’s going on.
We some of the research we have done has shown that when they have a like a community health worker Navigator with them through this this experience. They actually learn to ask more questions more directed questions. They also talk about the issues that are impacting them outside of the actual cancer treatment that exacerbates the problem one young one man. Spoke up to a navigator in a research project. I was working with Stanford where he didn’t talk for a long time and when he finally chose to share
He was asking for a pair of shoes.
And nothing to do with anything except his own sense of dignity his own sense of well-being. And so if you’re not understanding that you need to reach beyond that 15 minutes with that patient when you can’t speak their language and not finding out that there’s all of this other stuff that rotates around that that impacts ultimately the quality of the care and of the outcomes.
Then you’re not paying attention. You’re not giving good health care. And this is what happens to many persons a large percentage of this population. That is under underserved is low income Latinos as a group about 18% are live in poverty According to some of the latest data and that’s about family of four living on 30,000 a year.
And the African-American Community similar whereas compared to the non-hispanic white. It’s about eight percent. So it’s almost twice as much and it’s not because they’re unemployed. It’s not because they’re not productive. It’s not because they’re not engaged it is because they just have to make choices between do I pay for medicine or do I put food on the table for the kids? So I paid the rent or you know, do I go visit the doctor and just get a scan and nothing will be wrong. That’s that, you know talking yourself into you don’t need to go. So so there there are those and then there are those some of those policy barriers that they don’t they won’t cover certain tests that could be that could spell early intervention and diminish risk and therefore, you know, not a late stage diagnosis. So there’s there’s any number of things we’ll be talking about that later today.
Great, and you know we have a couple days left of health. So what are three things that you’re hoping to do here?
Well
first of all, I’ve been doing them so really
Go into these tables raising these issues and at least Lane some foundation for rethinking how they think about engagement in a communities of color racial ethnic and underserved populations. So that that’s one thing and I’ve been doing that. I like that second of all is connecting with Latinos here. Do you know that out of 380 speakers on those stages? Only five are
Latino. Wow.
That’s not representation. And I happen to be one of them that’s going to be up on the impact stage. So.
As Latinos we have a ways to go and yet they’re doing fabulous work. I was just at a breakfast. They were doing fabulous work at the national state and local levels and
inventeen and being Innovative because
They can’t get mainstream investment or mainstream service or mainstream thinking about how to address these populations and in some senses. That’s good. Right? Because that’s the expertise. That’s the lived experience. It’s now it’s now a college graduate. It’s now a physician and now under brings that understanding and can in fact turn around and focus on those issues and then hopefully the mainstream sees it and says wow, that’s a good winning formula. How do we buy in? So sometimes you have to show and tell before people will respond. And so that’s the other thing. I’ve been trying to observe what’s going on with that population.
and finally
just hoping
Just hoping that I am taking away one connections. Hopefully looking for investments into my work so that I can find a co-director someone to continue my work, you know one is not forever though one likes to think so I’ve worked I think very hard to to be at the national level was recently appointed by President Biden to the national accounts cancer Advisory Board of the NCI.
Where I learned that there are a lot of things that you have to push up against in order to make change.
so
I am here to like everybody else looking for investors looking for an opportunity to talk meet and maybe create and co-create and I’ve done that too as well. Met some people I’m saying we have to stay in touch. There’s things we can do together, you know, we need to incorporate the whole idea of this cancer issue amongst your Healthcare other Healthcare things that you provide for your community. So I come as talker engager and observer.
And before we let you go beyond the health conference, what is your favorite part if any of being in Las Vegas?
How’s the
Question, we’re asking everyone in our interviews that at land. Well,
you know, here’s the sad part for those of us who fly in for whatever reason. We really don’t get to know Las Vegas true outside of this Sin City is it used to be called we don’t have and if it wasn’t for me interacting with staff.
I wouldn’t know about the people of Las Vegas, but I remembered when I was here for a journalism conference. Just last year when there was still a little bit of the Paul from covid and I remembered going into this one place and taking advantage of supposedly a free massage or face facial and it was a young woman from Bolivia. So I started asking her about the impact of covid because Vegas got shot down. I know there are a lot of Latino in Las Vegas because they work in these casinos Etc and these hotels and so on and she was telling me that she didn’t want to get the vaccine but she had to get the vaccine in order to work and I said well, why wouldn’t she says because I I think it maybe it was a government thing. You know, they wanted to implant something or
so we talk about misinformation and disinformation and if you don’t talk to people and help them understand this is how they make their decisions and we know
people make decisions based not on the facts, but on their values and so
And so when you say what about Vegas I said, well, I know of them by scanning the census this is what I know about them. How do I humanize Vegas which is all Flash and glitter and money and loss.
Right and pain and all of these other things so but I don’t ultimately I would not choose to come here if I didn’t come for conferences.
You know, I like to keep my money close that makes sense. I’m not I’m not much of a gambler. And so now this this place is not set up for me. You know, they take your money. They don’t hear you
any any final thoughts or parting words for our audience and any important takeaways you want them to
take away from from this interview. Well, first of all, just thanks for inviting me. It was great fun. We talking to you I do talk but I just want where people in whatever work they’re doing. However, they’re doing it when they really do talk about diversity equity and inclusion really take a real look internally. What does that really mean? And am I walking that talk and how am I making a difference?
How am I reaching out to communities where it’s not my comfort level? But I’m I I need to work with those folks to understand.
Who they are what they are what they want how they think so that we can work well together. I know I believe most folks are well intentioned. They just don’t know how to start.
So I I just I said.
To a couple of groups. I have not liked the word in power for many many years. Now. I said, I think it’s very patriarchal and it’s like telling you you’re the weak one and I’m here to make you strong. So when we Empower communities, so I said this to a biotechnology group I said, I’m sorry, but they’re in powering you when they share their data and their bio specimens so you can turn it around and make money. They’re empowering you you need to engage. You’re not empowering all we need. All I need to do is make sure that that Community understands it has power.
And just light them up ignite them and help them make you you know, use that power
well.
Absolutely. Well, thank you Isabel so much for joining us today and for offering your very important perspective on some of these issues and loved hearing your thoughts on the health conference as well. So thank you again. Thank you. It was a pleasure.
