Full Episode Transcript

Season 2 | Episode 8: It’s Not Enough to Say We Survived (with Darcie Green)

Transcribed by: Eryn Strong, Hannah Rosentreter, Gina Marioni, Sonia Montejano, Elizabeth Jarvie, Kisa Nishimoto, Leina Megurikami and Jamie Fischer

Running Time: 2:02:29

Darcie Green: We've realized that it's not enough just to help people navigate those obstacles. It's not enough just to help people navigate health injustice. It's not enough just to help people survive health disparity and racism in the system. They need to be eliminated. That is how you create just and equitable access to the health care system, not by helping people just survive these system injustices. We need to be eliminating them. And that's the work we're embarking on now.

[Theme music begins]

Jodi-Ann Burey, as host: Welcome to Black Cancer, a podcast about the nuances of our lives as people of color told through our cancer journeys. I'm your host, Jodi-Ann Burey. Our guest on today's episode is Darcie Green, who brings multiple identities to our conversation today. She's the daughter of a survivor, a caregiver, an advocate, an activist and the executive director of Latinas Contra Cancer, an organization with a mission to create an inclusive healthcare system that provides services to the underserved Latino population around issues of breast and other cancer. Darcie is incredibly smart, so funny, and we had a lot to talk about. This is the last episode of season two of Black Cancer and this episode exemplifies everything we've talked about on this platform and more. More like understanding cancer through a social justice lens, examining the disproportionate philanthropic funding for organizations led by people of color, and what our communities still do, despite structural under-resourcing that determines our health. PS, this episode aired the day the United States surpassed 500,000 COVID-19 deaths—half a million people. Disproportionately Black and brown people. The racial inequities of the life saving vaccine rollout was absolutely top of our minds, which is why this conversation started a bit before I even had my microphone set up for the recording. You won't want to miss a single moment of this episode. It is truly a masterclass in understanding so many dynamics of cancer care, and what we can learn about the interconnectedness of what care can look like for all our people. And as always, check out the show notes for links for what we talked about. Here's my conversation with Darcie. 

[Theme music fades out]

Jodi-Ann Burey: I'm so happy to see you!

Darcie Green: I’m happy to see you, too. I was really looking forward to today. [Jodi-Ann: Oh, good.] How's it going? I love following everything you're doing on Instagram.

Jodi-Ann Burey: I'm so tired, Darcie. *chuckles* I’m so tired. Um, it's going great. Everything's fine! *both laugh*

Darcie Green: Is that like the, “Everything's fine! *laughs* Why would anything be not fine?!” *both laugh* As like, you know, we're in the midst of this vaccine rollout. Right? And it's just like such a mess. I mean, it's just the inequities. I was thinking about it today, because we had over here we have Good Sam, right, which is Good Samaritan Hospital. And they gave whole doses to a particular school in an affluent neighborhood, because that school had donated to a fundraiser that they had at the hospital. I was...I mean, clearly this exists in the world, but I was honestly just shocked. I mean, I was just like...

Jodi-Ann Burey: Well, first of all, I'm not surprised. I think anything about racism, racism in the healthcare system and racial inequities—when you put these things center, that means you can predict them. You know, Washington Heights in New York, Latino neighborhood, and all these white people from lower Manhattan rolled up to the Heights—which they would not normally go to, because it's so north and you know, not where they hang out—and they took the greater majority of the vaccines. 

Darcie Green: Yeah, there's like, in Florida, I just saw—I mean, it's Florida, right, all kinds of things wrong happen in Florida. But I just saw a report about a specific community that's like 80%, Black and they've only vaccinated like 15%, or something of the population, but they vaccinated an entire gated community of white people. And the government's like, trying to explain how that happened. And they're like, “Oh, but this news report didn't take into account 500 vaccines we just gave out yesterday in the Black community,” probably because they knew this story was coming out *both laughing*

Jodi-Ann Burey: Some reporter called us for comment. We went and go found some Black people to give the vaccine.

Darcie Green: I mean, it's really crazy. And the spin that this hospital and school tried to put on this, right? Like, “No, this isn't preferential treatment.” And you know, for me, it's just this another example of how wealth and influence and race gets you better access. I mean, it is what determines your access to health and also the entitlement that some people..this-i mean, if anything, it's just this bigger indicator of what we've been talking about. And people are accustomed and used to receiving superior treatment because of their wealth, income status, or their race. Like, people are raised in this country to believe that if they are of a certain skin color or a certain income bracket—we have, as a society have trained people to believe because of that you earned this privileged treatment in our system. [Jodi-Ann: With no checks.] And we're seeing it in the vaccines. Right. And we see it in the vaccine rollout. And we see it everywhere else in the healthcare system. Like you said, “I'm not surprised.” Like why...why would it be any different with the vaccine rollout. 

Jodi-Ann Burey: With no repercussions. Like, I was talking to a friend, and she was like, “Oh, you know, the vaccine rollout has been so terrible,” and whatever. And I'm like, “Yeah, girl. We have a decentralized healthcare system that is laced with racism. Of course it's bad.”

But you know, what's most interesting—which I'm not surprised at all—is there such a narrative around the Latinos and Black people being so hesitant to get vaccines and all the mistrust. And I'm like, Nuh-uh, you're not gonna blame us for this. Just because we know, we can predict, right, like how we get treated in the healthcare system, or lack of access to it. I mean, sure, that is a narrative, but we love talking about how people of color don't trust the system. And it's our fault that we're not getting vaccines or getting access to care—when you are not setting up systems or protocols that prioritizes us in any way.

Darcie Green: Right? And leaving out that part of the narrative is so frustrating, because it's—you have a question on here about like, why don't we have the ability to have real open conversations about it?—And it's like, when we just have that one piece of the narrative, “Oh, well, this community just doesn't do this. And it's because of their religion, or their culture, or they're just uneducated or they whatever.” And it's a much more sophisticated answer than that. And a lot of it, and the majority of it, and I would argue all of it really leads back to the faults and the gaps in the healthcare system. And then just the like, racism and discrimination that has existed in it from its foundation, and people being very hyper aware of that. So when you think about why a community or a demographic may not trust their healthcare system, when other communities do and you think about, why is that? Well, it's because we know some people receive inferior care. And some people actually receive what we would call medical malpractice, because of their ethnicity, race, income, language, that's just fact, right? I mean, that's just a fact. So you have to talk-You can't have the narrative around why people don't trust...or even, like, have there been enough studies to even say that confidently? You know, where is that data point coming from?

Jodi-Ann Burey: “Who told you?” *both laugh* “I did not see you at the meeting last week where we talked about this. [Darcie: laughs] So I know you don’t know.”

Darcie Green: I didn’t see you raising your hand in the back. *laughs*

Jodi-Ann Burey: I didn’t see you raising your hand. I was in the front and the back. *both laugh*

Darcie Green: *laughs* Exactly. *chuckles*  Um, I'd also just like to point out that our county Public Health Department is doing an amazing job [Jodi-Ann: chuckles] at getting vaccines out to people who need it. *chuckles*

Jodi-Ann Burey: So, okay. So what does that look—when you evaluate amazing job—what does that mean to you?

Darcie Green: Even with the obstacles, and even with all of the gaps, our county has been very focused on equity, racial equity, and looking at who has been disproportionately impacted by COVID? And how do we prioritize their ability to get the vaccine. Now all of that is in the context of the state rules around the vaccine, and the state requirements on who we prioritize. And as our state moves away from prioritizing the chronically ill, and away from prioritizing by race equity, and prioritizing by age, it really takes away some of the ability of local counties for themselves to find that priority and meet the needs of the demographics in our county. And all counties are also facing a shortage of vaccines. There's just-there's not enough vaccines.

So earlier, we talked about the example of the hospital and the school district, and that just being one of many examples of how people get different treatment, based on their income and their race, and their social status. But there are other examples in our county where the county is really trying to provide services and trying to focus on the needs of the underserved. And the resources just aren't there. And a lot of it has to do with the previous administration we had in this country, and then the resources that are available at the state. So even with the individual bad actors—hospital, being an example of one of them—as a community and and as a public health department and as a county...Certainly there are lots of there's lots of room for improvement. But I-I see a real genuine effort to try to work with grassroots organizations and communities to get the people who are in the most need the resources they need.

Jodi-Ann Burey: Yeah, I think working with grassroots organizations that are closer to the communities that need to be served is definitely a strong approach. Right? But the thing that I get frustrated with sometimes is, why are y'all not doing that at your level? You know, and I think it's important that people do reach out and do partner and all that, but I just get...it makes me irritated sometimes. If you're coming to me for support, you should be coming to me as an antenna to strengthen your reach. But if you don't have something as a foundation already, then we're already screwed. Because we know that a lot of these inequities are predictive, right? They're a normal part of our system because racism is a normal part of our system. We prioritize people of certain socioeconomic status and social status and all of this. We know this. So, we know that there are going to be challenges with that output. That should have been part of the design from the beginning. You know, like, do you feel like the Public Health Department had a good strong foundation? Because I feel like there's some Public Health Departments and organizations that are not foundationally sound. Like, they are not foundationally sound. We should have had race-based data from the beginning.

Darcie Green: Yeah. And you know, when I talk about our Public Health Department, I certainly do mean, our local Santa Clara County Public Health Department. Because certainly, when we look at the CDC and what [Jodi-Ann Burey: Yeah.] public health has been doing on this bigger level, there are all kinds of systems issues. And when you bring up the word, predictive; if it's something that we can predict, it's something we can prevent. [Jodi-Ann: Mmmm.] And so I-my frustration with the pandemic in general has--in our, in our county, and also in the country—it can be predicted who would be disproportionately impacted by this pandemic, because it's not just a natural occurrence. I hate that these health disparities exist. We've created systems that leave a lot of people out, and that gives people inferior care, based on their income, based on their race, based on their ethnicity, sometimes based on language or documentation status. So if we've created a system that continues to harm people in that way, and then we have this big pandemic—which is a public health emergency—clearly, those people who were already getting the short end of the stick in the system are also going to be the people who are disproportionately impacted. So I wholeheartedly agree with you that that's the first place you’d want to start not just because it's morally, ethically, just as a human being the right thing to do, but it's also a good public health strategy. And as we saw, it would have been a great economic strategy. [Jodi-Ann: Oh, absolutely.] And we failed to prioritize people through using race data--race and income data--and that would have been a very smart thing to do from the outset. 

Jodi-Ann Burey: Yeah. I mean, the whole COVID thing got so dicey, too. ‘Cause there was this whole sense of, well, how do we evaluate the value of life? Is it okay that old people die? Okay, they're gonna die anyway...we're all gonna die anyway. Newsflash, right? And so if people are in their 90s, in their 80s are disproportionately impacted, are we okay with that? You know, if people who are already sick in some way with comorbidities and they're more sensitive to this, are we okay with that? And for a huge partI think, in the beginning of the pandemic, there was a narrative that, you know, maybe it's not so bad. If it's only impacting these particular populations.

Darcie Green: American individualism is a hell of a drug. *both laugh* [Jodi-Ann: I dip into it sometimes, it feels good!]  Individualism, this idea that we live in these individual silos, and we're not all connected by these systems is just a narrative that—it's wild. Because that's one narrative, right? That, Oh, well, it's just impacting a few people, and so few people are dying. And that leaves out other crucial pieces of that narrative. One of them being—COVID death is clearly the most severe of the possibilities—but think about all the people who are still left with chronic conditions, because of COVID. Think of all the people who got COVID, who had to suffer the trauma of what that was like to feel like they were dying. I have talked to people who had COVID, who recovered from COVID. And the similar message was, “I felt like I was dying, and I was going to die alone.” [Jodi-Ann: Yeah.] That is trauma there. And not to mention, they still have ongoing health concerns. That's one possible narrative and consequence. The other: people who got COVID and it economically destroyed them. And that's going to be...that's generationally [Jodi-Ann: Oh, yeah.] economically destructive. 

But then there's also the other piece of the narrative—and I think about it in the context of the clients that I serve, but really, it could be applied to anyone who regularly uses our hospital system or healthcare system. When our healthcare system is flooded with people who have COVID, or because the healthcare system needs to move all of its resources to combating COVID, what happens to all the other people who depend on the healthcare system to manage their diseases and chronic conditions? What happens to cancer patients who get their surgeries canceled and delayed, [Jodi-Ann: Yep.] who got their treatments pushed out, people who had—and we actually were just funded by Stanford to do a research project to understand, better understand in our county, the impact of COVID on cancer patients. Because we know anecdotally at Latinas Contra Cancer, we have heard of people who were diagnosed later than they would have been with cancer, because of late detection, because of COVID. So when I hear—and I saw this a lot on my social media and people that I knew who are otherwise wonderful people [Jodi-Ann: chuckles] right? Who raise good families and move about the world, you know, trying to do good. And when I see these things on social media, people are posting around, oh, you know, only 2% of people are dying. This is just...who cares? You know, this is just some government conspiracy to control us. [Jodi-Ann: Mmhmm.] It's very saddening to me, this disregard for human life and the inability of people to dig deeper into the narrative to understand, no, we all—we all depend on the healthcare system, all of us. And even if you're not chronically using it at this time, don't you want it to be available for you if you were to, Lord forbid, get in a car accident? Don't you want it to be available for your uncle, your father, your mother, if they have a heart attack? Don't you want our resources to be available to you widely when you need them? So if we could somehow…and this is just my big gripe in general with the healthcare system and its relationship to capitalism *chuckles*, [Jodi-Ann: Mmhmm.] but it's, you know, if we could somehow get ourselves out of this individualist silo in thinking that we all do it on our own, and and we don't need these systems to work for us and our loved ones, we would have much better responses to public health crisis.

Jodi-Ann Burey: That’s the damn truth. [Darcie: It is.] *both chuckle* I think there's this—I was chatting with someone last night, like until you face some medical trauma with someone that you really love, right, that you don't feel that distancing from like, Oh, that's just my auntie. She was sick anyway. Or that was, you know? If someone you really love or you don't go through some dramatic health crisis or medical crisis, you have this entitlement that you'll always be alive. But when you have this moment, like this trauma of I felt like I was dying or I'm surrounded by death, there's this constant narrative in our society right now of people getting sick and dying. Then you get faced with the fragility of life, right? 

And so until you have that you...maybe there's this narrative that people who need the healthcare system have some type of weakness, right? There's something inherently or morally wrong with them. And I don't need that, right? I want it in case I need it. But I don't even really understand what that looks like, like needing the healthcare system. And so it's super easy to say, “Maybe it's not so bad, or maybe it's okay,” or, you know, not thinking about the emergencies that you might have where you need that. 

I know a lot of people, as do you, whose cancer care got pushed back. And for a lot of people with cancer, time is the thing that can save your life. You know, there are a lot of people who, maybe they did not have COVID-19 in their bodies, but whose lives have been impacted or have ended because of the strain on the healthcare system, right? Because of the stress of this time, you know? And these types of traumas and the impacts of this—it's not going to go away just because the calendar turned to 2021. You know, it's not going to go away even if we have most of the people vaccinated this year. This will be a lasting impact on us. And hopefully, some of that lasting impact could lead to more collectivist mindset, could lead to a greater need and urgency around protecting our social systems, could lead to understanding that, you know, folks that maybe you discard or folks that you don't pay attention to or don't see their value in them, they are essential, right? Our lives cannot function without them. And we should be protecting them and supporting them and bringing dignity to their work in their lives as much as we can. I mean, if I know anything about this country, that probably won't happen. But one can only hope. *chuckles*

Darcie Green: Oh, I mean, that's—one can only hope, and that's such a profound statement. Because at this point, what other option do we have to push forward for a better system? I actually do have a lot of hope. [Jodi-Ann: Yes!] I don't think this work if I didn't have hope *both laugh* I don't think I could do this work! I don't think I could do this work if I didn't believe that there was a better system possible. [Jodi-Ann: Yeah.] And that any of it was possible. I'm really focused on what do we learn about the healthcare system from the mistakes of the pandemic? What do we learn about the healthcare system from the crisis we were in? Both the public health crisis and the economic crisis. And we learned that health disparity impacts all of us, and health disparity, just being health injustice, right? The racial, ethnic base, bias/discrimination that exists within the healthcare system, impacts care delivery. What can we learn from it?

We learned that many people do not have a relationship with their healthcare system. Many people do not have a primary care physician. Many people have had bad experiences with the healthcare system that make them less likely to trust the healthcare system. We learned that we need to separate health insurance and healthcare from employment, that we’re all worthy of... [Jodi-Ann: Thank you!] *both laugh* I mean, that was the big takeaway is, well, we really set ourselves up! Because  we tied—and for me, I get really angry at the connection between employment and healthcare. Because in that you're telling people if you're not productive in this society, in the way that we view productivity, you're not worthy of healthcare, [Jodi-Ann: Mmm.] you're not worthy of access to care. So you lose your job because you're sick, or because you have a condition that doesn't allow you to work. And then you also lose your healthcare at the time when you need it the most. [Jodi-Ann: Yes, when you’re most vulnerable.] That is such a backward way [Jodi-Ann: chuckles] to operate healthcare. Like, let's just take your healthcare away from you. You've been a productive member of this society, and by no fault of your own, but even if it was your fault, you got sick. And because you are so sick with this disease or condition, you have not been able to return for work. We're going to cut off your insurance, disrupt your care, potentially make you change medical teams all together, find a different payer, go through that whole system. We’ll offer you COBRA if you want to stay, you probably won't be able to afford it because you don't have a job. *chuckles* [Jodi-Ann: Yeah.] It's just maddening! 

I mean, it's so not logical and backward and it's—and it's not person-centered, it certainly is not strategic. And we saw so many people lose their job and lose their healthcare. [Jodi-Ann: Oh yeah.] And one of the great things was this, this statement around—and we heard Joe Biden say it many times, and others nationally—it's not your fault you got COVID, so we're going to cover the testing. [Jodi-Ann: Mmm.] That should be applied to everything, including cancer! [Jodi-Ann: Yes, yes.] It's not your fault! And so we as a society are going to rally around you because you got COVID. And so we're going to cover these aspects of it, because it's good for public health, and it's good for the economy, and we're all in this together, and as a country, we're going to come out of it stronger. We should be applying that to all conditions. [Jodi-Ann: Yeah.] I mean, it makes sense for anything. That logic—I love that logic! And it carries throughout the whole medical system. [Jodi-Ann: Yeah.] To me, it's one of the biggest arguments in favor of a universal healthcare system that cares for you because you just deserve it. Not because of what you've contributed to the economy, not because of, you know, what your income is, you are not more or less deserving of healthcare because of what you produce for this economy. It's just because you are a human being in this country.

Jodi-Ann Burey: And that should be enough. Right? That should be enough. [Darcie: Yes.] People are always trying to find some reason. One thing that really irritated me when I started sharing my diagnosis is, I don't know how to describe it, but there's this way that people would say, “Well, how did you know that you, you know, that you had cancer?” Or “How'd you know you had a tumor?” or whatever. It felt to me more that they were trying to figure out if they had it, right? *laughs* It wasn't about learning from me. But figuring out, Okay, is there something that she did wrong? Is there something that I'm doing wrong? How can I prevent this, like, maybe this is Jodi-Ann’s fault in some way? And one thing I had to get rid of quickly during that initial phase was: I have a tumor inside of my body, because my body created a tumor. That's it, right? There are people who spend their entire life smoking who never get cancer, and there are people who are never around smoke and have lung cancer, right? I think we're so obsessed with this cause and effect, because we're looking to blame someone or something in some way. And I think just understanding that you live life, and sometimes bad things happen to you. And sometimes you need medical attention. If we just had that person-centered, human-centered approach, then we wouldn't be penalizing people for not being productive. We wouldn't be penalizing people for just existing or saying, basically, and I love the framing around this, “You don't produce for our society, you don't deserve to live.” What is that? What is that? Anyway. I do want to chat about you. 

Darcie Green: And I want to talk about you! You need to come talk to some of our clients at LCC. *laughs*

Jodi-Ann Burey: Oh my gosh, I would love that! You know, let me tell you something about the internet: the internet is just...it's a wild place. And there's a lot of dicey people and things out in the world. But, I've been finding with this podcast, that the greater majority of people that exist on the internet are cool human beings. And that’s why I was like, so excited to know you now! *both laugh*

Darcie Green: What a nice thought! Yeah that's, I mean, certainly not the folks who stormed the Capitol who organized on the internet! *laughs* [Jodi-Ann: Oh my God.] You got to steer clear of all those people. [Jodi-Ann: Yeah. That is one misuse of the internet.] But there's a—yeah, there are a lot of a lot of really good folks out in the world, and a lot of voices to uplift. I think that's why the work of your podcast was so exciting to me. When I saw what you were doing on Instagram, and learned about the podcast, because you're uplifting stories that don't get enough play. And when you look at media and what lens media is through, and why our stories, as Black and Brown people and people of color are always considered like diversity is because the lens is not--the lens is always a white-centered lens. [Jodi-Ann: Oh, yeah.] And how our systems view the world, right? How our systems are created is very white-centered, too. So this, this podcast is exciting to me because you are lifting all of these stories that need to be told.

Jodi-Ann Burey: And you as well with Latinas Contra Cancer! And we'll get more into that too, as we go through this narrative, but from your perspective, what do you think most people don't understand about cancer? And I will say this: before tumors decided to grow in my body, there were a lot of things I didn't know about cancer either, right? Until your life is on the line, you're like, wait, let me access the part of the internet that could save my life right now. *laughs* But if you don't get faced with that, there's just a lot of things I think you don't know. So what do you think people don't understand about cancer? And I know that's a broad question, but I just want to at least start there.

Darcie Green: What was coming up for me in the conversations that we have in our health education program, where we go out into the community, and we talk to people about myths about cancer and dispelling myths, and answering questions, and just having conversations about cancer in the effort of helping people to lower their risk and prevent and get detection. Many of the people we've encountered believe about cancer is that more of it is only hereditary than it is. [Jodi-Ann: Mmm.] So only 5 to 10% of all cancers are solely hereditary. And the rest of cancers are a combination of potentially hereditary, and then also everything else, right? All the other factors that might go into why someone gets cancer. It could be individual behavior, but it also could be the social determinants of one's health. 

And I think that's really important for people to understand. Because, like I was reading-I'm reading this book called Just Medicine. And there was a data point in there around 83,000—this was written a while ago, so I’m sure this has increased—83,000 and change minority patients die annually due to health disparity. They receive inferior treatment, and fewer cancer tests, [Jodi-Ann: Mmhmm.] fewer adequate aftercare resources in comparison to their white counterparts. The reason it's important for people to understand how much of cancer is environmental social determinants is because we can predict and prevent. You'll never truly know, like, exactly who will get cancer, exactly what causes it. But we know there are all these factors that can raise or lower your risk. So if we can understand that our social determinants and our environmental factors and some individual behaviors impact cancer, and it's not hereditary, we can start to wrap our minds around how to be proactive about it. And also, you might become more vocal advocates in pushing for systems change. And we recognize how much of these systems that we operate within impact whether or not we get cancer, impact our survivorship, and impact their quality of life into survivorship.

Jodi-Ann Burey: Yeah, no, that's real. And it's—so I like that frame shifting, right? Because you'll hear a lot of people say, “Well, you know, diabetes runs in my family. Hypertension, it runs in my family.” And I'm like, Well, your family has also lived in the same food desert for, you know, manys of years, right? Or in this near the same brownsite, or, you know, have been eating in this in this same type of way based on access or what have you. And so that also runs in our families, our environments, our socio-economic status, our level of access, our, you know, access to the healthcare system, access to all these things. And so people understand...and I think there's a sense of, well, you're just trying to blame other people, you need to have individual responsibility. Again, very seductive narrative. But I think what you're saying here is that our lives are more determined based on what's happening around us in our environments. And I think people can internalize that; things being their own fault. But I also think that our society, as our systems impact us so much, also push this narrative that, hey, it actually is your fault, you are doing something wrong, you should, you know, have more kale if you don't want to have cancer, and it's like, eh, that's not how that works.

Darcie Green: Right- I mean, we can't individual behavior ourselves out of the system’s inequities. [Jodi-Ann: Yeah. *laughs*] I mean, there certainly are individual behaviors you can take to lower your risk, right? [Jodi-Ann: Absolutely.] I mean, you can try to maintain what a healthy weight is for you, you know. You can try to...and that's, you know, different and we certainly don't want to push any judgment or shame on people, but there's a whole nother you know, layer of that, that we push on people, you know. If you're smoking, you could try to quit, if you are excessively drinking, you can try to get support for that. Those are all things that are good. And we and we encourage our clients to do that, right? To think about how do we create healthy lives for ourselves? 

But there are other things that are more difficult to control in your life. So if you are living with constant food scarcity, [Jodi-Ann: Yeah.] right? If you-if you are not able to access. So it's one thing I can tell you, “You just need to eat better.” If you can just get like you said, more kale. [Jodi-Ann: Yeah *chuckles*], if you can just have a more, you know, a healthier diet. But that type of food is inaccessible to you because of either the price of it, or where you live, or because you're working three jobs and you don't have the time to meal prep for yourself and/or your family, then are we really giving you an option for a healthier life? 

If we tell you, “Well, you just need to manage your stress.” You know, because stress really impacts cancer and we know that, right? We know that your level of stress [Jodi-Ann: Oh yeah.] can be a predictor. And we tell you, “Well, you know, just manage your stress. Why don't you just try to do some more yoga, do some more meditation, go for walks, be in nature.” But you don't live near nature, [Jodi-Ann: Yup.] you don't have a quiet space in your house, you are living in a multi-generational or multi-family dwelling that's meant for one family. You are living with the stress of poverty and [Jodi-Ann: Yes.] racism and violence, and you are living with all that stress. And then we tell you, “Just manage your stress.” Are we really giving you [Jodi-Ann: chuckles] good health advice? *chuckles* Are we really giving [Jodi-Ann: Yeah.] you an option? 

And the other-the other big area to think about is housing...And [Jodi-Ann: Yes.] where you are living, your access to housing. So if we're telling you, you know, “Just-just make sure you're managing all of these things and make sure you're creating a place that you can-you can go home and have proper treatment and proper aftercare and you can be in a healthy space.” But you are housing insecure? And you're constantly on the brink of being unhoused. Are we really giving you solid health advice? Are we really taking into account your individual situation? 

And the reality is, that's not the situation for just a few. And particularly at this time, after what we've just gone through in 2020. That is the situation for many people struggling with being under-resourced, and struggling with being poor. We can't separate the conversation around cancer from racism and poverty. That's important for people to understand because yes, individual behavior can impact that. But if you have had a lifetime of having limited access to the healthcare system, and a lifetime of having limited access to health education, and a lifetime of having little or no relationship with a doctor who knows you from childhood on, [Jodi-Ann: Mmhmm.] like many people do in this country who have generational doctors who serve generations of [Jodi-Ann: I know, yeah.] family members who know you inside and out and can say, “Oh, you know, I know what your chronic condition is and I am checking up on you.” Many people don't have that. 

So when we're telling people how to lower their cancer risk, and we're telling people, “Oh, just live this way, and you'll be healthy.” But then we're not actually setting people up for success. And we're not actually doing anything to create systems and environments that make that possible for people, then we're not genuinely caring about people's health. And then that's a big frustration for me, because the clients that we serve, bear the brunt of that-you know, are disproportionately impacted by that disingenuous claim of caring about people's health. [Jodi-Ann: Yeah.] And we need to address all of it. And sometimes it's overwhelming to think about. People don't want to talk about that in relation to cancer because, or for many people, for Black and Brown women for Black or Brown people, for people of color, our health is inherently political. And...it is a justice issue. So I like to talk about cancer in the context of social justice. It's a civil rights issue. *laughs* Whether we have access to health. And that is inherently political, because it is about the breakdown of resources in this country and who gets them.

Jodi-Ann Burey: Yup. And it-there's been a very-very precise decision making over time that we continue to reinforce about who gets access and who doesn't...Who deserves access and who doesn't. And I think as we think about individual behaviors, that becomes this narrative to say, “This is why you don't get it, because you did X.” Right? So we love to tell people about, you know, the different options that they can choose but we don't like talking about the options that we gave you. The options that are on the table, that itself is a construction, because there are other options on other tables and like, okay, you know when you're at a restaurant? [Darcie: chuckles] And you're like, trying to figure out what you want, you start looking at other tables, and you're like, No, no, no. I want that. That's how I feel right? *laughs* Just like... [Darcie: Right, right.]

Darcie Green: Like, “Let me have what she's having…Can I have what she’s having?” *laughs* [Jodi-Ann: Yeah! “Is that good healthcare? I want that.” *laughs*] I know, “I can't afford it? Okay no, nevermind.” *laughs* “I get it.” *laughs* No and-and this whole, I...What's so important about what you're saying is that, it is all a choice. [Jodi-Ann: Yeah.] Not in-not-I don't mean choice, like our individual choice. It is a choice we have made as a society, we chose health inequity. [Jodi-Ann: Yeah.] We chose health injustice...We chose that some people will not have access to the full menu. That's a choice we make every day as a society. We see the impacts of it. [Jodi-Ann: Yeah.] We saw the impacts of it in our country because we failed to create a healthcare system that adequately meets the needs of all people. We saw how that played out in the pandemic, but there are still some people so consumed by individualism, capitalism—these systems that benefit the few—that we refuse to provide people that dignity. [Jodi-Ann: Yeah.] And we all suffer because of it. And so it absolutely is...As I mentioned in the beginning, none of these things are natural occurrences. It's just not a natural occurrence that certain segments of our population are disproportionately impacted by some diseases or the healthcare system. We've created a healthcare system that makes it so.

Jodi-Ann Burey: Yeah. And we're being faced with those choices and the impacts of those choices everyday. And to be honest, there are some people who don't care. *chuckles* Right? They're like, they don't care. They don't realize they don't have this. So, you know, there's a certain fluidity, I think, in being able to talk about cancer, and I love this approach. And this lens of having a really integrated conversation between cancer and social justice, cancer and racial justice, healthcare, and just the broader functioning of our lives. Like, I think a lot of people don't have that language, or that lens. And so I'm curious for you, you know, how did that come about? Right? You weren't born with the fist in the air coming out, like Latinas Contra Cancer [Darcie: laughs] Social justice baby!

Darcie Green: I’ll have to check with my mom. I don't think so. But I’ll have to check with my, *chuckles* my mom about that. That'd be pretty funny though, if that happened. *laughs*

Jodi-Ann Burey: I know, you just came out of the womb like, [Darcie: laughs] “Social justice baby!”

Darcie Green: Maybe not out the womb that way. [Jodi-Ann: Mmhmm.] But, I will say I was drawn to this type of work at an early age. And I attended my first labor picket line when I was in fourth grade. [Jodi-Ann: Yes, you did.] Like fourth or fifth grade. I was a music student and they were cutting our music program and our teachers went on, like, you know, like a picket strike in front of the district. And I remember telling my Dad, “I want to go to this picket line.” *both laugh* “I want to strike with my teachers!” [Jodi-Ann: Yeah.] And he helped me make my sign and you know, my little stake and took me to the picket line. So *chuckles* I may not have been born with a fist in the air, but I-don't I-and-and I maybe I attribute to my parents, they've always been really open with me about injustice in the world, they've always taught me to dig deeper than what I learned about in school. My parents have always taught me that, that this-that racism exists, and injustice exists, but they've also always instilled me a sense of self-worth. [Jodi-Ann: Mmm.] And that, even despite how I may be treated by people, despite what systems might tell me about myself, that I am worthy, and I deserve. And...dignity, right? Human dignity. Quality of life. 

And so that-I don't think my parents ever pushed me and they’re-they're not political folks, or they-you know, weren't involved in that way, necessarily, but it must have been just conversations we had from an early age about the world, and the world as it is. But the world also as it could be. So I-I did the picket line when I was in fourth or fifth grade. And then when I was in middle school, I organized patients-or patients...I organized students around a pothole and got really jazzed about...We didn't get the pothole fixed *laughs* [Jodi-Ann: Uh-huh.] But we weren’t successful at getting the city to fill the pothole. But I learned a lot about the power of organizing. And we were on the news. And you know, even though we didn't get--the pothole, it was eventually fixed. But way...years after. [Jodi-Ann: Uh-huh.] And it was a little bit of an addictive feeling of; I can see something wrong in the community and I can do something about it. Even as a Latina in East San Jose, middle schooler, I had power. I had my voice, [Jodi-Ann: Mmm.] had power. And I had the ability...to do something-to act. That's really what power is, right? The ability to act. Then when I was in high school, I became a youth organizer with an organization called PACT, which is a PICO affiliate. So a community organizing group, and then that really opened my eyes up to, again, the power you can have as one person to make a difference when you do it in community, like collective action. That was my career from there on. 

So again, not fist in the air, but as far back as I can remember, I've-I've really enjoyed this type of work, and it transitioned into health-related work for me [Jodi-Ann: Yeah.] when I was working in the legislature for a-for a legislator who cared a lot about Latino health. And he made some great strides in the area of obesity and diabetes in the Latino community and I got to learn a lot about health inequity, [Jodi-Ann: Mmhmm.] and also about how the state can impact and how policy and laws impact our health equity. And then I got a job at Kaiser Permanente and I worked there for eight years, and I learned a lot about the healthcare system and then my dad got really sick. That changed everything for me because it deepened my commitment to the area of healthcare, but it was the scariest, [Jodi-Ann: Mmhmm.] saddest, most angry time of my life navigating him through that experience that he had. And I just knew...I want to dedicate myself to health advocacy. This isn't...This isn't-this isn't right. And, and I have knowledge and expertise that might be able to help people because [Jodi-Ann: Yeah.] I just love navigating healthcare systems. And I love arguing with medical billers, and *laughs* And you know? I love doing those kinds of things.

Jodi-Ann Burey: Listen, if you ever want to live for a fight, [Darcie: laughs] like, if that's your juice...Get on the phone with some health insurance companies. [Darcie: laughs] That’ll really instill a sense of justice. 

Darcie Green: I mean…That-I mean, but really, right? Healthcare is so unnecessarily complicated. [Jodi-Ann: Oh my God.] It’s so complicated. And [Jodi-Ann: And for what? I'm already sick, like, I don't know, I don't need to be on the phone right now.] You know, and-and I've heard so many stories and people who call me for help or guidance on how to deal with medical situations, not like clinical obviously, I'm not a doctor, [Jodi-Ann: Mmhmm.] not that kind of help. [Jodi-Ann: Mmhmm.] But how to navigate systems and how to deal with insurance. And it is just so complicated, and it doesn't really matter, your income level or education level, or access to resources, or even how much you are familiar with navigating systems. I—and this is just a bold statement I'm gonna say that's not backed up by data, or at least none that I've researched prior to this call—[Jodi-Ann: Say it, girl.] I think most people, everybody, if they've had to use their healthcare system, has a story where they have needed it and it has let them down in some way.

Jodi-Ann Burey: Yeah. When you recount your social justice baby fist in the air, right? When we talk about the systems of racism, the systems of discrimination and the need for social justice—that can be applied everywhere, right? So you focus in on music, or you focus in on a pothole, you focus in on healthcare. It is present in everything that we do. And so, I want to dig in a little bit more on specifically how your father's journey impacted you, because you know, you, listen, I am not saying anything about you. But there's an abandonment of the health music program, right? You abandon this pothole project, right? [Darcie: chuckles] There are a lot of ways that we kind of rally up for different causes, and we move forward, right? Not to say that we left them behind, but then you found your grounding in the health space. And so, I want to talk about your father's journey, how that impacted you and how that has seemed, at least in this phase of your life, grounded you in cancer advocacy and healthcare advocacy.

Darcie Green: Can I take a pause for one second? [Jodi-Ann: Yeah.] Is that okay? I'm just going to ask my dad really quick if I'm able to-I didn't check with him before. And [Jodi-Ann: Oh yeah.] and I know he's-I've talked about his story, but I want to share a piece of it. And I just-I have a very specific piece that I haven't shared before. And I wanted to ask him really quick. Is that okay? [Jodi-Ann: Yeah, I’ll be here.] I’ll be right back.

[pause]

Darcie Green: All right. Thank you for that there's, there's a piece of the story that I have not shared. And because what happened to him was so...scary. I didn't even allow at the time it was happening. And people who are visiting the hospital couldn't Facebook about it. Nobody even knew what happened because it was so...real. And so scary. You know, when something is so...I mean, yes, you know, and something is so scary, right? That you-you don't even want to speak it because it's so scary. [Jodi-Ann: Yeah.] And now that I am, you know, a few years out from his experience, I'm like, able to talk about it more and and talk about how it's impacted me. But there was a time when I couldn't even speak it.

So...On the night that I was giving birth to my son, I was in labor with my son. I was at the hospital, in the labor delivery room, birthing my son. *chuckles* The same moments that that was happening, my dad clinically died on the floor above, in the same hospital. My son is my dad's only grandchild, my only son, named after my father. [Jodi-Ann: Mmhmm.] And so I just want to put that out there as level-setting because I have never really talked about-that he actually clinically died. And so, I'm there in my labor delivery room...My dad hasn't come to visit. My mom and my sister are there. I’m  like, “Where's Dad? What's going on?” And they're like, “Oh, he's fine. He'll be here in a little bit.” And I can just tell, you know, after a few hours, I'm like, “No, no, really what's wrong?” and they said, “Okay, you know, he clinically died, they were able to revive him, he can't talk, he can't breathe these, you know, doing any of these things on his own, they don't think he's gonna make it.”

And so, I asked the staff if I could, you know, a wheelchair, like, go up and see him. And I went up to see him and he was in the ICU, and he just didn't even look like himself. I mean, he was just on everything, and, you know, just not gonna make it. And of course, you know, you have all these people who were visiting me who were now visiting him, and you know, they say, “Oh, you know, mija, you know, God sometimes takes one life, and when he brings in another.” [Jodi-Ann: Yeah.] And it was just the most difficult time. So, I bring my son home. And my sister, my younger sister and I just had to figure out how to become very good patient advocates, immediately. And I, my sister, you know, stays with my dad 24/7, never leaves, because I spent a lot of time working in healthcare. And I understand that you need a good advocate near you. [Jodi-Ann: Yeah.] You need to have somebody with you all the time.

Jodi-Ann Burey: Like, physically there with you. Yeah.

Darcie Green: Physically there. So, she's sleeping there. My dad ended up staying in the hospital, he was in the ICU something like 70 days.

Jodi-Ann Burey: 7-0? 

Darcie Green: Yes, he was in the hospital, he couldn't even meet my son. It was... *sigh* my son was, yeah, it was like two months. I have a really touching photo from when they actually first met outside of the hospital. It was a long road. He was there over 100 days. So it was a long time, he actually clinically died twice in that time. [Jodi-Ann: What?] And it was just this yo-yo of every day: He's not gonna make it, he's not gonna make it, okay, he made it, but he's not gonna make it, now he needs this and he made it. And my sister and my mom and I, going there to the hospital and being present, and when anything we, you know, catching all these little mistakes and, and being very inquisitive and asking for meetings, and just being, I mean it became like a joke there, too. Like, “Oh here come the Green sisters!” [Jodi-Ann: laughs] Like, we all have long hair, and we all, you know, “here they come.” Like we were there every single day taking down notes doing and even with that there were still mistakes that were made and things that happened. And in that time, because he couldn't go back to work, he lost his health insurance. So all of that—all of those things, the journey that my clients experience, we experienced that, like, I experienced that. 

I think the takeaways for me from that—and my father made it, he's healthy. He's wonderful, just for everybody who listens. [Jodi-Ann: Yeah. *laughs*] You know, it was a long road for him. But he made it. But what wasn't lost on me was something that was profound and meaningful about the birth of my son and the death of my dad in the same moments. And feeling like that's a wild thing to go through. And they both made it, right? And they're both close as can be, but what is the purpose, like what is the meaning and the purpose from this? It was such an awful time and a frustrating time. But what I learned from it was a couple of things, one...and we, because of all the complaining, gentle complaining, respectful *both laugh* because of the gentle complaining, and the respectful, diligent advocacy that we did on behalf of our father, and because we were ever present every day, just watching over everything and catching things. My sister actually was the one that—what happened was he had an appendix rupture, and they gave him a surgery to fix it, not realizing they had nicked his colon. And so that started to, the toxin started to leak out. And my sister actually was the one who caught it even before the medical staff. So, I learned that it's important to have that advocacy for you. 

The biggest takeaway for me that impacts my work at LCC is that I can hold two conflicting feelings at the same time. I can be profoundly grateful for the surgeon who didn't give up on him and saved his life. I can be profoundly grateful for the medical staff who cared for him and the nurses who went the extra mile. I can be profoundly grateful for them. And the fact that my father is alive, and he's healthy. [Jodi-Ann: Yeah.] And I can be grateful and appreciative for that. And in the same breath, angry and frustrated with the system that allowed for all of that. [Jodi-Ann: Yeah.] Both of those things can be true. And how I carry that forward to the work that I do at LCC is that—and I think about my grandmother who survived cancer and then ultimately passed from cancer—as a survivor or caregiver, you can be grateful for your survivorship or the survivorship of your family, and also feel empowered to demand more from your healthcare system. [Jodi-Ann: Yeah.] 

And it doesn't make you ungrateful for the care you received. It doesn't make you ungrateful for your life, it doesn't make you ungrateful that you survived. And it's okay to say, and to uplift and highlight the points where the system let you down. You can do both of those things. And in fact, it's important to do both of those things in the moment, too. [Jodi-Ann: Yes.] In the moment, in the moment. And you shouldn't have to do the level of advocacy that my sister and I did for my dad to get quality care. You shouldn't have to. But we did. And I know that if my sister and I--and my sister did the biggest lion's share of it, because I was also caring for a newborn. [Jodi-Ann: Yeah. *laughs* Just had a baby.] Yeah, I just had a baby. You know that, that...you shouldn't have to do that. But that's what was necessary. And if that hadn't happened, I'm positive my dad would not be with us today. 

And you can also make decisions and say, I mean, there was a situation where they said, “Okay, we're ready to release him, you know, he's been here for a while, you need to pick a skilled nursing facility for him to go into, because he's going to need all this aftercare because he has all these, you know, different things.” And so, of course, you know, I start looking at all the skilled nursing facilities that are available, and I'm checking all the ratings and if any of them had any state sanctions, [Jodi-Ann: Yes! *laughs*] and I'm looking at all the things that I'm just horrified, right? I’m like, no way. Like, we're not, my sister's like, “Nope, we're not sending him to one of these.” So we just keep telling the hospital, “No, we won't pick one.” And they’re like, “Okay, well, you know, maybe we'll talk about it another day. Okay, you know, Ms. Green, you guys really have to pick a nursing facility. He needs to go.” And he wasn't able to make these decisions on his own yet. [Jodi-Ann: Yeah.] And we just say, “No, we don't like any of these. We want him to be able to come home and for you guys to send people to our house to care for him.” [Jodi-Ann: Yeah.] “Well, his insurance won’t cover that, you know, we'll keep checking with the insurance. But, you know, it's not likely, you need to pick one of these nursing facilities.”

And looking at all of the different things that were happening and all of the conditions he had, all the care he was going to need; we knew, we knew he wouldn't make it out of there. [Jodi-Ann: Yeah.] Like, he wouldn't make it out of the nursing facility. He would get some type of bug that was going around, or some type of...there was no way. And so we finally just told the medical provider, “We will not pick one of these. So you're gonna have to pick one, because if he dies there, we're not gonna, you will be responsible. [Jodi-Ann: Yeah, yeah.] So why don't you pick the one you'd send your father to?” And they came back and said, “The insurance has approved for him to go home.” [Jodi-Ann: *laughs*] 

And so he came home to my house and started his road to get better, and, God, he was so strong and courageous in that, and amazing. And it was a long, you know, two years of recovery for him with its challenges. But he got so much better, so much faster. [Jodi-Ann: Yeah.] when he came home, versus. So I give that example and how that's impacted the work I do at LCC as well, in that, we have decision making. We come to the table with something, too, as patients. [Jodi-Ann: Yes! Exactly.] Right? Like, you can ask, you can, you know, demand. You can, you should be very aware of what your rights are. What's possible in your insurance plan, not just what they offer, but what's what's in the realm of possibility. And then knowing what levers do you pull to make that happen? 

And not everybody understands that, and I had the advantage of working for a health care system for a long time. So I do understand that. Not everybody understands that. So part of the work we do at LCC is giving people that same access to know what should you, what can you expect? What should you expect from your healthcare provider as you're going through this? What levers do you pull? What's the language of healthcare? What are the hidden scripts and what's possible for you? And that it's okay to ask that. There are many clients who are nervous about saying anything to the surgeon [Jodi-Ann: Oh, yeah!] or, because that person is going to be operating on you.

Jodi-Ann Burey: Yeah, I don’t want to make them mad. 

Darcie Green: I don’t want to make them mad!

Jodi-Ann Burey: It’s kind of like, to bring back the restaurant example, like, you want to get too spicy with the server because what if they spit in your food or something? [Darcie: Right! *chuckles*] Always scared of the backlash. I think as people of color, we're always fearing backlash in some type of way. But I think that's so important to know that you always have options because we know that the rules of engagement are constructed. These are fake choices, means that I can ask for something that's on someone else's table, right? Like, I can go outside of this normal script. And I think that's a little, I don't want to say off putting, I think, in a lot of cases is off putting, especially if someone's operating with a level of bias already, of like, “Who are you to feel so entitled to good health care, or to more options?” But I think that I'm losing my train of thought, but what was I saying? I'm just mad. You know... *laughs*

Darcie Green: You know, but this is really important, actually. And I'm happy you brought that up, because I want to give another side of it, because I think it's important. [Jodi-Ann: Yeah.] So I don't just send people out in the world and start demanding things, because what you're saying is very real. [Jodi-Ann: Yeah.] And, and what I learned through my father's experience, and that very long time period of advocating for him is how to do it effectively in that system. And I do want to say that racism is real, our medical providers are human. And humans are capable of making decisions and taking actions based on that racism.

And what I will say is my sister and I having the advantage of speaking English, having the advantage of knowing systems, having the advantage of appearance that is more white presenting than not, you know, I think that that plays a role as well. [Jodi-Ann: Oh yeah.] And the frustrating piece for me is, is how patients get labeled problem patients when they do advocate for themselves. [Jodi-Ann: Exactly.] And that's real. I mean, that's something we do have to address. So like, while I'm over here, saying, like, Everybody just needs to advocate for themselves! [Jodi-Ann: *laughs*] It's also important that we understand the world that we live in, and part of it is learning how to do that effectively.

You know like when you're younger people tell you, like, “Oh, you want to learn the skill of negotiation.” Right? [Jodi-Ann: Yes, yes.] Negotiation, conflict resolution, and those are skills that we definitely used in that time period. The goal is the best health outcome for my dad. And that's what I stayed laser focused on. There are people who really made me mad. There were people who I didn't want to talk to anymore. [Jodi-Ann: Yep.] There are people who I just wanted to just really tell off and [Jodi-Ann: Yeah. *laughs*] storm out and throw papers all over them. 

Jodi-Ann Burey: And rightfully so in a lot of ways, right? Rightfully so in a lot of ways. Where it’s like, Do I want to be right? Do I want to emote? Or do I want to make sure that my father survives this? And I do think that there is a delicate balance of how to do that effectively, within all of the confines and barriers that you might have. Right?

Darcie Green: So my thought was, I need to-my number one goal is my father surviving this and getting out of this, right, with the best help outcome possible. In the back of my mind, though, and maybe even subconsciously knowing, but then I'm going to dedicate my life to health justice. *laughs* Like, I'll be back, you know? *both laugh*

Jodi-Ann Burey: I’ll be back for you. *laughs*

Darcie Green: Let me handle this right now. But best believe I'm going to be back and I'm going to, I'm going to go organize some people and I'm going to mobilize people. And I'm going to dedicate my life to this. And that's what happened. [Jodi-Ann: Yeah.] I didn’t know I was going to go into nonprofit service, I didn't know I was going to do any of that. That's what happened after the fact, was dedicating my life to this type of work.

Jodi-Ann Burey: And what I love about our people, right, as folks of color is this, this disposition to have more of a collective mindset. And I felt that in a lot of ways why this podcast even exists, and in your work and dedication to health justice is it is actually not enough that my dad survived. Happy and grateful, right, holding those two ideas. I'm happy he made it. And that is not enough. So I’m coming back for my people, so they can also survive this. Because there are a lot of ways that you and your sister and myself can operate and navigate these systems with a level of privilege, even with all the other things that we have, you know, against us, right, and the ways that society has marginalized us but our ability to navigate these systems is a huge privilege. So how can I use that in service of not just my family, not just myself, but I have to bring my people behind me because it is not enough that we survive. It's not enough. 

Darcie Green: That's beautiful. That's beautiful, though. I mean, honestly, I'm just it's almost choking me up because this sense of... there are so many things that he experienced that were absolutely not fair. [Jodi-Ann: Yeah.] And it was the time he spent in the hospital and some things that happened there. It was the whole insurance thing after and this disruption to care. But it was also the healthcare system leading up to that point,too. You know, all of it. When you said that it's not enough. [Jodi-Ann: Yeah.] I am... every day I'm so, just, thankful that he's here. But I still have that feeling of, but it shouldn't have happened. And I can't change that it happened for him. He survived. Okay, wonderful. But there's just this responsibility to say, but it can't happen again. Like, people shouldn't have to go through that. You shouldn't have to have family there 24/7 with you, you shouldn't have to have access to hospital administrators in order to get the care that you need. [Jodi-Ann: Mhmm.] It... it's just not enough. [Jodi-Ann: Yeah.] The way you, the way you phrased it is really nice.

Jodi-Ann Burey: And I think you know, your organization, Latinas Contra Cancer is trying to fill in that gap. It is saying in some way that it's actually not enough for individuals to survive, that we have to push against systems in some way. And so could you tell me a little bit more about the work that you do at Latinas Contra Cancer? 

Darcie Green: We’ve been around since 2003. We have three program areas: health education, patient advocacy, and survivor support. We serve the Latino community around issues of cancer. And really what we do is, we're trying to create more just and equitable access to the healthcare system, for the Latino community around issues of cancer. And keeping in the theme of, it's not enough. We've even more recently evolved as an organization. The first 17 years of our existence was spent doing really good work around helping people overcome and navigate these obstacles. Obstacles that look like language barriers, obstacles that look like transportation and cost barriers or obstacles that look like not having great relationships to healthcare providers, just helping people to navigate all of these health disparities, which, again, we know our health injustice, but it's you know, it's we call it disparity. In this last year, just witnessing how ravaged by the pandemic our community has been in the county I live in, particularly the low income Latino community, and other low income populations, we've realized that it's not enough just to help people navigate those obstacles.

It's not enough just to help people navigate health injustice, it's not enough just to help people survive health disparity, and racism in the system, we need to be eliminating it. That is how you create just and equitable access to the healthcare system, not by helping people just survive these system injustices. We need to be eliminating them. And that's the work we're embarking on now. So we're continuing to provide services, we have our support groups in English and Spanish, we have health education that we're going to continue doing, we will always continue navigating people into mammograms and different types of screenings and helping people to navigate treatment. But we've launched, and we just got funded through the Silicon Valley Community Foundation, and it's really amazing because they've, they've done so much to, to focus on race equity work in the nonprofit sector. They just gave us a catalyst fund grant to kick off a health advocacy cohort. And so our aim this year moving forward is to mobilize our clients through the collective identity as patients to eliminate some of these system issues. And the goal of this cohort is all the things we just talked about. Like, all of these things that you and I know, right? The levers to pull, the origins of healthcare, why these injustices exist, why they disproportionately impact some communities over others. [Jodi-Ann: Mmhmm.] All of these things that we know how to effectively advocate for yourself for the outcome that you want at the moment.

We've started to develop a curriculum, a 9-week cohort, where we're going to take clients, patients, anybody who wants to join, train them to just be really good. You know, to be able to walk into any medical setting with knowledge and experience and knowing what they're talking about. And what they deserve and what they should expect from their healthcare system. To not only better advocate for themselves and their loved ones, and that's certainly if it were just that, that would be good. But to transition that personal story [Jodi-Ann: Yeah.] and to transition that individual situation into, maybe this isn't my individual situation, maybe this is actually a systems issue. Maybe the fact that I got inferior care in comparison to a white counterpart, or maybe the fact that I was dismissed by my doctor, or maybe the fact that I had a really crummy insurance plan and I didn't realize it until I needed it. Maybe those issues are not my issues only because of something I did, which is what society would want you to think [Jodi-Ann: Yep.]  Maybe these issues are actually part of a bigger system problem. And I'm not the only one experiencing it. And through this cohort, we want to graduate people through it, who can start to connect their individual stories with other people's stories and start to see, Wow, there's a lot of people experiencing this. It's not a--it's not a me problem. This is a system problem that we change. [Jodi-Ann: Yeah.]

And so to equip our clients with the skills to advocate for themselves in healthcare settings, but also advocate for themselves in policy settings. Advocate for themselves in hospital administrative settings. Advocate for themselves in civic settings. So that we can start to not just navigate ourselves through these things, and just be grateful we survived. Although we are grateful, we survived—we can go the extra step and say, but we don't want this to happen anymore. We want this to end. And we're going to do what we can to fix the system so other people don't have to suffer this way, too. And as you said, it's not enough just to say we survived. [Jodi-Ann: Yeah.] We can hold those two thoughts together.

Jodi-Ann Burey: Yeah, I hear that. And it's not enough that we survived. It’s not enough that we have these privileges and how can we extend those navigation abilities, ‘cause as much as the system and the structure of racism and oppression, are the same across different industries, and environments and sectors of our society, but it's also structurally similar of how to navigate them. And so, how you want to apply it, in the same way that you've applied it to healthcare, you've applied it to cancer, people can apply it not just in their own individual issues, as you're saying, but applying and advocating for some structural change, regardless of what that is.

Darcie Green: Yeah, and a guiding principle for this work for me, is the acknowledgement that our clients are already coming to the table with the skillset to advocate. [Jodi-Ann: Oh, absolutely!]  Right? I mean, it's like, our clients already have valuable lived experience and knowledge of systems. They just need the knowledge of healthcare.  [Jodi-Ann: Yeah.] They need to know the nuts and bolts of how this ridiculously unnecessarily complicated system works. And once we equip people with the knowledge of how the system works, with the knowledge of what they can expect, or should expect from the system, and the knowledge of what these hidden scripts are, our clients know how to navigate systems and other aspects of their lives [Jodi-Ann: Mmmm.] and are advocating for themselves in their communities in many different areas. So really, we're giving them training, but also holding space for them to be the leaders they already are. [Jodi-Ann: Exactly.] and recognizing that they come to the table with so many valuable assets and skills to begin with.

Jodi-Ann Burey: Yeah, you know, oftentimes, when we think about Black and Brown and poor communities, we think about them through this deficit mindset, this deficit based approach. Not because these particular communities are deficient, but that over time, our society has continued to choose not to take care *chuckles* of us. Or, you know, chosen to see us that way, strategically, and otherwise. And so, I want to make space for what you are making space for here, right? The strengths that exist within our communities. And, you know, with-at least within my community, there's this narrative of being able to make a way out of no way, right? Always trying to push through barriers, always trying to create something out of nothing. And so as we think about the strengths that exist in the communities that you serve, you know, what are some of those strengths that come to mind? What do we need to pay more attention to? And you know, how can we build on those strengths?

Darcie Green: Yeah, I like that saying, making a way out of no way. And when I think about the clients that we serve, or even just the family that I come from, and live in, and even just as a single mom myself, you know, just making it happen, right? We make it happen. And our community makes it happen in absence of fully resourced systems that are set up to meet their needs adequately. Right? And yet, we survive. We thrive. We make it happen for ourselves. There are so many strengths in the client community that we are here for at LCC. That the system sees as deficit. So when I—and one example I point to is language. [Jodi-Ann: Yeah.] So we often hear language talked about as an obstacle. Oh, that person has an obstacle because they're not English speaking. But we have to reframe how we talk about that. The problem isn't that my clients speak Spanish, the problem that is that your healthcare system isn't adequately set up to meet the needs of all of your members [Jodi-Ann: Yeah. *chuckles*] and all of your patients. Like, sounds like you have the problem. *laughs*

Jodi-Ann Burey: Um, yeah. Sounds like you don't speak other languages either. *laughs*

Darcie Green: Sounds like you're not qualified for your job. I mean, it's like [Jodi-Ann: Yeah, legit.] right? I mean, that's it's Spanish is a wonderful language that's spoken all across the globe. And many, many people send their children to dual immersion schools and go to immersion programs for the, for the ability to speak Spanish, and we applaud them. [Jodi-Ann: Yep.]  *laughs* We applaud them, right? [Jodi-Ann: Yeah. *chuckles*] Yes, it's so great. You speak Spanish, another language. Because we didn't expect it from you. [Jodi-Ann: Yep, yep.] But for our community that actually speaks Spanish, let alone, our children who speak English and Spanish [Jodi-Ann: Yep.] and how amazing that is. That's amazing. And the fact that our healthcare system isn't set up to meet the needs of all of their patients is discrimination. They're discriminated against, because they speak Spanish. When in fact, that's an asset in this world. The other thing I think about is, and not not as much in the area I live in recently, but I certainly hear it a bigger conversations around sometimes even religion being a barrier. [Jodi-Ann: Yeah.] Oh, you know, it's—it's religion. And, we're hoping to get over people thinking, Well, God did this to them, or just giving it to God. Or just, [Jodi-Ann: Yep.] you know, people don't want to be proactive because of their religion.

Jodi-Ann Burey: They just want to pray it away. Pray this tumor away. 

Darcie Green: Religion is such a strength. [Jodi-Ann: Yes.]  And the fact that our healthcare system hasn't figured out how to utilize someone's religion to ensure better health outcomes. The fact that our healthcare system doesn't invest enough in culturally competent care, that includes spirituality and religion as a... as a partner in that care is a missed opportunity. Because if you can connect with someone and their core beliefs, then you have a better understanding of why they make the individual decisions that they do. And you also have a better understanding of how they view the world. And if healthcare is the most intimate of relationships that you can have with a system, right? I mean, it's, it's, it's really...you're talking about someone's life. You have to be able to look at the whole person and see what aspects of their lives can you pull from to help in partnership with a healthcare plan, a treatment plan, a clinical plan, to ensure the best outcome, health outcomes for them. And religion is a strength, definitely. 

Community is also a strength and I think about how people rally to their families, and also their broader communities...that is a huge strength, [Jodi-Ann: Oh, yeah.]  for the client population that I'm a part of, and that we serve, that we can come together to support. So when we have our support groups at LCC, they're open to the family, right? Because we don't battle cancer alone. I mean, some people do, right. And we certainly do have clients who don't tell their family and that's a personal decision and we respect that. But we also have many families where the entire family is involved. And the impact is to the entire family. And the entire family is really important in the care and the treatment and survivorship. So, as a healthcare provider, are you accounting for the fact that there might be family members coming with them to appointments? And are you making it a safe and comfortable space [Jodi-Ann: Yes. *chuckles*] for the people who are coming with them as caregivers. How are you valuing as a healthcare system, the role of a caregiver? How are you respecting and resourcing the role of a caregiver and how important caregivers and family members are to someone's recovery? And so that is absolutely another point of strength and asset in our community iis our families and how we rally with each other?

Jodi-Ann Burey: Yeah. It's so funny, like they’re also not structurally set up that way when you go into a waiting room, you have these individual chairs that might be, you know, together. But it doesn't look like a welcoming space. There aren't private rooms for people to just do what they have to do. Or not a lot, at least the hospitals that I've been in. You know, I've had my family—’cause when I, when I rolled to these MRIs and when I rolled to the appointments, I rolled deep, right. So I need benches. I need tables to spread the food out. Like, I need, you know, like we need to feel comfortable because we're all trying to manage stress. And then, you have the two other people in the corner looking at you, especially if you're Black and Brown, that you're being too loud, you're being too this whatever. But like, no. This space is not actually set up for a communal-based approach for caregiving. Your waiting room, and that, and those systems are structured for individuals. And that's not how we roll. *laughs*

Darcie Green: My dad was in the hospital...I'm just kind of chuckling to myself, because my dad's family is so amazing and you know, they love him very much. And he has a few brothers and sisters and cousins, and everybody and they all live here in the area. And so the waiting room at Kaiser, *both laugh* like the general waiting room [Jodi-Ann: Yeah. *chuckles* ] was just full of us. [Jodi-Ann: Yeah.], and food that we brought,  [Jodi-Ann: Yes!] *both laugh* blankets and pillows. [Jodi-Ann: Exactly.] And they were, I mean, we took up that waiting room, but you're right, it's—it's not, it's not set up that way. But that's how we show up for our loved ones. Even my sister, his original room, ICU room, wasn't set up for someone to sleep there for 24 hours a day [Jodi-Ann: Yeah.] to be there *chuckles*.  And my sister's like, “Well, I'm not leaving.” And so, as we started to, again, gently, advocate for ourselves, assertively advocate for ourselves [Jodi-Ann: Yeah.] they just finally brought her in a bed *laughs*. Okay, you're not leaving, we get it. So here you go, let's make you comfortable. [Jodi-Ann: Yeah.] Because she's not leaving, but the room wasn't originally set up that way. 

And so that's why it's important for us as community to continue showing up the way we show up. [Jodi-Ann: Yeah.] Because if we continue doing this and pushing to say, but this is the way that we show love for our family, this is the way that we ensure best health outcomes. And we are partners in this, [Jodi-Ann: Absolutely.] We are partners in our care. If I'm getting care, my sister and my parents are going to be there, around the clock. And if you don't allow for that to happen, then you're not allowing me full access to my healthcare that I deserve. Because that is a piece that is of my healthcare. And so you're denying me, what would provide me the best health outcome, if you're not taking into account these other factors that I need to survive? [Jodi-Ann: Yes.] And that's a cultural lens. It's also just about whole person care. And we hear hospitals and healthcare systems talk about that a lot. [Jodi-Ann: Mmhmm.] But what does that really mean? And for me, it means acknowledging, uplifting, making space for these other aspects of our life. [Jodi-Ann: Yeah.] And it may manifest itself in a bed somewhere. *both laugh* Right? It may also manifest itself in making waiting rooms that are more communal with some garbage cans, and you know, some trays. *both laughs* [Jodi-Ann: Yes!]

Jodi-Ann Burey: Exactly. And at the very least, I need to charge all my things. *both laugh* Why am I searching for outlets in a waiting room? You know they're gonna be here for like, seven hours. [Darcie: Right.] Everyone has two devices, we need them charged up, ready to go. [Darcie: Right, right.] And I think like, I think waiting rooms and charging stations like, absolutely, these things have huge impacts on our ability to have our people show up comfortably. Right? And to be able to not battle your microaggressions as they're trying to support their family. And I think also thinking more deeply of what support can look like for us in a more holistic and real way. So, and I've talked about this before, but right *chuckle* I did not expect this. I did not know this was part of the thing. But right before they rolled me into the operating room, they had the chaplain come out to ask me if I wanted a denominational prayer or non-denominational prayer before I went into the OR. Why do I need a chaplain as I was being rolled into the OR? Because if we think about religion as a protective factor, if we think about religion as a strength, when I got diagnosed, when people get diagnosed, we should also have conversations about mental health care support, about the communities that they have around them. Because, you know when it could have been helpful for prayers and support? The whole entire six weeks that it took for me to even get to the point where I was being rolled into an OR. That was a very stressful period. 

And so if we think about having those conversations: Do you have a community around you? Do you have a faith practice, whatever it is. Do you have a meditation practice or mindfulness practice? Because that is what can help support you in this process. We don't, or at least in my own experience, I don't see that made available a lot for people just kind of across the board. And then in some instances where I do see mindfulness and all of you know some of the pieces that we take from the structures of religion, the community aspect, the mental health support, then I see like the yoga practice and all that, then I see that in really privileged spaces make space for that. [Darcie: Mmhmm.] Like you go into some of the school systems and you have these private schools or nearly private schools that have Tai Chi and yoga as part of gym. And then you have communities that are really under resourced, who are managing very stressful situations—structurally, environmentally—and they're not doing Tai Chi, for gym practice, right? Similar to your music program, a lot of those programs get cut. If we see communities, we see religion as protective factors, how can we structurally set ourselves up that people who do have resources and people don't have resources, kind of have those seen as strengths and are not just accommodated for that, but it's part of their experience without having to ask or without having to push.

Darcie Green: Yeah, that's a big, that's a big question.

Jodi-Ann Burey: Fuck yeah. *chuckles*

Darcie Green: I don't have the answer. [Jodi-Ann: Yeah.] You know, I mean, one thing I will say about that is, is the role that the nonprofit ecosystem plays in healthcare.  [Jodi-Ann: Yeah.] And the role that nonprofits can play in supporting a patient as they try to access their best health outcome. Because as a nonprofit, and as an organization that doesn't provide clinical care, [Jodi-Ann: Yeah.] that provides cancer support services and navigation, we get to build a relationship of trust, that is different than ever. And then the relationship one might build with their medical provider, which can certainly be one of trust and respect and love. But for many of the clients we serve, they come to us because they have had a breakdown in their relationship with their provider or they have no relationship, or they have needs that their provider is not able to meet. So those needs might be cultural, they might be financial. They have needs that are keeping them from either prioritizing their care, or needs that are keeping them from fully accessing their care, that the healthcare system is not able to meet, so they're sent our way. And so we're able to build this relationship outside of a clinical setting, but for some, still may carry trauma around it. And they may not want to have that relationship in that clinical setting. [Jodi-Ann: Yeah.] 

And so clearly, healthcare systems can invest more resources in better understanding the role of religion and spirituality and community and culture in cancer outcomes. [Jodi-Ann: Yeah.] And there's a lot of data on it. There's a lot of research on it. There's certainly a lot if you go to any website for a healthcare provider, you will see it written there. 

Jodi-Ann Burey: Right. Yeah, definitely. *laughs* 

Darcie Green: But how it comes out in practice, yeah, varies, right? Depending on the individual site, depending on the individual people. But there are organizations that...and there's so many. There are some that focus on caregivers, there are some that focus on survivors, or some that focus on prevention. There are some like ours that are race and ethnicity-based and income-based. And the role that we can play in helping to bridge that gap between the patient's life in totality, [Jodi-Ann: Mmhm.] and what's happening with their clinical care. 

Jodi-Ann Burey: Yeah. So I want to get into this a little bit. So when we layer on different parts of our identities--our race, our ethnicity, country of origin, socioeconomic status, language, insurance status, social status, whatever—that can really change our experiences, not just with our own health, but our ability to connect with others and to connect with systems that exist to help us, right. From your perspective—’cause your population that you're serving is not largely centered in our healthcare system—I want to illuminate some of the experiences that they're having based on their identities, what's happening in the world and how that intersects with their cancer care. So I want to talk about if you can give me an example of how someone's documentation status impacts their cancer care?

Darcie Green: Well, a few ways. If you are undocumented, you're probably going to be on emergency Medi-Cal versus full scope Medi-Cal. And so for many people they have-their access is a little more limited. So they'll still get cancer care, for the most part that care will be free. But it's not the same type of care and for some people, it could be inferior care, depending on where that is. I've certainly had people receive excellent care who've been on emergency Medi-Cal, and I've had some people receive inferior care that have emergency Medi-Cal. And here's one example I'll give: you and I, you know if, depending on our access to health, may want to ask for a second opinion on something. Right, and we'll get it, right? We'll get a second—

Jodi-Ann Burey: Absolutely, I will be asking for second and third opinions, thank you. [*laughs*]

Darcie Green: Yeah, I've had clients who I've been personally advocating for, personally navigating through our system, who are on emergency Medi-Cal, and have really had bad experiences with their doctors, or surgeons. I mean, really bad. Like these are experiences where they have been made to feel not important, even in their own care. They have been dismissed, they have not been listened to, they no longer trust what they're getting. Imagine how terrifying a feeling that is. You know you have a tumor, you do not trust the person. And and in one case, the person was just... the way I phrased it in the past has just been this person had a bad bedside manner. This person was just really a jerk. I just couldn't get them a second opinion in that system, because it just, one, would just take forever for someone on emergency Medi-Cal to get a second opinion. And it just, you know, I tried several avenues. And it just wasn't possible, we were able to through a different system completely, that had some charitable care get a form of second opinion for them through a charity that helped us, outside of that medical system that they received. I mean, it was a good scenario for them, because they were able to get that second opinion. That second opinion had no connection to the place where they were able to get their care, though. So it wasn't a full scope solution. But that's an example. To this day, I'm thinking of one client, it impacts the way she interacts with her cancer care provider because she just doesn't trust them to this day. And we're just trying to figure out how do we make the best of that situation for her?

Jodi-Ann Burey: Yeah. And I think about the aftercare too, because when we spoke before, you'd mentioned, and I will tell you, Darcie, I’ve still been haunted by this. And it feels like an impossible choice. But so you have a client who should be receiving cancer treatment, but the result of that cancer treatment would mean that he wouldn't be able to work for a year. But he's in the United States to send money back to his family. And so it's the choice between, do I receive this care and not send money? Or do I potentially die from this condition? 

Darcie Green: Yeah, yeah. That's a client story. 

Jodi-Ann Burey:  Like—what?

Darcie Green: And like, this  client, this client is still choosing not to have care. You know, and as an organization, and as a patient advocate, our role is to make sure that our clients have all the information they need to make the best decision for themselves. And, you know, we were talking with some of the folks at the hospital who were also like, trying to understand this decision—It's kind of like going back to what we were talking about earlier in this in this talk around what real choices are we giving people? If we're telling somebody, look, you just need to have this surgery to remove your tumor, and you're going to be out for a year, like, obviously, that's the decision you want to make. You're crazy not to make that decision. And then we're not also bringing into the narrative, the other piece of it, which is: if you take off work, you won't have an income. And we aren't going to provide that for you. We're not going to pay your rent, we're not going to help you with your bills, we're not going to supplement your income. You're undocumented, so you don't have full access to other government-funded safety net programs. Because you're undocumented you were more likely to work in setting that didn't provide that either. We're not going to fix any of that. We're not even going to talk about it. We're just going to tell you, here's your cancer care solution. Well, that's not really a solution. Because you can't look at his diagnosis in isolation from what else is going on in his life. 

I know the healthcare system can't be everything for everyone. But maybe it's not the role of the healthcare system to pay someone's rent. And we know that systems intersect. Public health is an intersection of all of these systems. And it really doesn't make sense to me, particularly for folks who do have their cancer care paid for by government programs. We're investing as a public in people's cancer care, but then we're not also making sure that all of these other needs are met so they can get the most out of that cancer care and get the most out of survivorship. And what are we really doing to uplift that investment? What are we really doing to protect that investment? We've now invested in somebody, don't we want to make sure that they are successful in their survivorship and that they have the best quality of life possible? What choices are we actually giving people?

Jodi-Ann Burey: And I think it's important to see those intersections, right, because people are more likely to be healthy if they're housed. People are more likely to be healthy if the other elements of trying to survive, like having an income and paying for food, just paying for your life, are met. And so, yes, the healthcare system can't be everything for everybody. But the healthcare system can do better than what it's doing now. And the healthcare system needs to be better connected to other systems that can support you.

I find it really difficult to even know what's available to me, as someone who is on the internet, as someone who, you know, operates at the level of institutional privileges, it does take work to even find these connections. Because a lot of these systems and services are very well connected. And that takes a lot to navigate. And that's why I think organizations like yours are so critical to support people with that navigation. 

I want to talk about institutions of help. First of all, it's the expected next step in this as we've been talking about Latinas Contra Cancer. To then say, hey, Darcie, you know, how can our listeners support you in your work? Obviously, share about it, donate to the organization, lift up LCC, duh, do all of those things. But I do want to get into this sense of what I'm going to call institutions of help. And so, one, not all helping organizations, they themselves don't need help in the same way, right. Help as in their ability to do their work. And not all helping organizations are helping in the same way. How is LCC competing for funding? Not just from individual people, you know, giving their $50, right. But how is LCC able to compete for funding compared to some of these larger health or cancer focused entities? What is that whole system like for you?

Darcie Green:You know, prior to the pandemic, it was just really, and it still is a struggle, right? I mean, it still is a very competitive place to get funding, which is mind boggling to me because I live in Silicon Valley, where it's just so much wealth. I mean—

Jodi-Ann Burey: There’s a lot of money there. 

Darcie Green: There’s so much money here. But we still experience such grave, wide inequity. It's, you know, again, predictable, preventable, a choice. And we know that historically, organizations that are led by people of color, organizations that serve a majority of people of color tend to be underfunded when you look at their counterparts in this space. 

For a time, I would say that the cancer space was kind of a lonely place for me as an ED, because of the lens that we live through as an organization. As you know, we look at cancer as a justice issue. We look at it as a racial and social justice issue. It's inherently political, not partisan political, but political in the sense of distribution of resources. And we do a lot to push back against systems and to call out injustice and inequity. And so prior to the pandemic, that was kind of a lonely place to be in trying to find funding for that work. And the frustrating piece of it is, there are many cancer organizations that are very well funded, right? There's a lot of money in cancer. [Jodi-Ann: Yes. *laughs*] There's a lot, a lot of money in cancer. And you know, you're in the grocery store, you see it on Kellogg’s boxes and you see it on hats, and you see it—

Jodi-Ann Burey: Would you like to donate $1 to St. Judes? *laughs*

Darcie Green:You know, yeah, and those are well worthy things, right? [Jodi-Ann: Absolutely.] It’s a worthy thing. But when we break down the data, I didn't have any prepared, I should have…

Jodi-Ann Burey:  That’s okay. The internet is available to people.

Darcie Green: Right, look at check out these internets and see the data that's there. And how much of that money is spent on race equity work, when they'll—And again, all worthy causes. I'm not suggesting people not contribute in that way. Because, you know, charitable contributions are a very, very personal decision. But our organization exists to serve a very specific population. And these are the people who have been left out of the healthcare system. These are the people who fall through the gaps. These are people who have experienced injustice, these are people whose cancer journey is not the same [Jodi-Ann: Yeah.] as other cancer journeys. These are people who, in many cases, didn't have to get cancer, where they—you know, where these are people who their further cancer was detected so late. These are people who aren't represented in clinical trials. These are people who don't have access to the same type of survivorship resources other people have. These are people who are asked to make impossible choices as cancer patients every day. And so when I think of who I show up for every day, and where money goes, [Jodi-Ann: Mm-hmm.] And how we're so underfunded as a population in cancer research, and in prevention...

Go back to the original talking point around what people should know about cancer. And I talked about how only 5 to 10% of it is hereditary, solely hereditary, right. So it might be mixed with other cancers, might be mixed with hereditary and environmental or other types of behavioral stuff, but only five to 5 to 10% is solely hereditary. So we know that the vast majority are impacted by your social determinants of health. [Jodi-Ann: Yeah.] But then we fund so little in prevention. We fund so little to impact the social determinants of your health. And so to me, that's a race-based decision. We know that the people I serve who look like me and you who look, you know, that come from communities that we come from, they are impacted by this percentage, right by the social determinants, and we're choosing not to fund that. That's a decision that we're making. And it's a decision that's made through a lens that isn't ours.

And so I think it's important to fund cancer at every level. But if the organization--look into the organizations you're giving your money to, in the cancer realm, and and what are they doing to address health disparity? What are they doing to promote data that disaggregates by race and ethnicity, and income and zip code? What are they doing to use that data to make better systems that eliminate health disparity? And think about if that's where you want your dollars to go? Or do you want-I mean, again, it's all a choice, right? It's a choice we're making with our funding. And if you're interested in systems change, and trying to impact minority health, then you may want to look at some of these organizations that are doing just that. And there are many, many, many great cancer organizations doing that work. And there are many universities and academic institutions. Every other year, we do a Biannual National Latino Cancer Summit. It's normally held at UCSF, this year it's going to be virtual. And we bring together researchers and academics and formadoras and community health workers from across the country to talk about cancer in the Latino community. 

It's where the research really meets grassroots, because it does have a justice lens to all of the work. It is very much a research conference, because we have research posters and all these things, but it's absolutely run through the lens of racial justice. And when I think about that conference, I think about all the great work that's happening across the country that just needs to be better funded and uplifted. So when it comes to big philanthropy in the cancer space, I try to align myself and look for the collaborations and opportunities that are uplifting the community that I serve, and that are laser focused on racial health equity, and social justice in that space, and that are not afraid to talk about cancer as a justice issue and are not afraid to talk about healthcare as a civil rights issue. And that aren't afraid to just flat out say all people deserve quality health care as a basic human right. And that has to be foundational to where I know I invest my charitable dollars and it's certainly been foundational to the work that we do at LCC.

Jodi-Ann Burey: Yeah, I feel like folks in our communities, more so than others are every day facing impossible choices. And so I think similarly, how funding works for a big philanthropy versus grassroots organizations or even thinking about doing health research that isn't centered in social justice or racial equity, that should also be impossible. That should be impossible. To continue to perpetuate disproportionalities and whose life matters whose care matters and where the research and the work and advocacy and the support need to go. That should be an impossibility to continue to do that.

Darcie Green: Absolutely. I absolutely agree. It's not just because individual people deserve that, and I believe that individual people deserve it. But it's also a good strategy for public health in this country. [Jodi-Ann: Yes. *chuckles*] And it's a good economic strategy just harkening it all back. Because I as an individual believe healthcare is a human right, just because it's ethically where I stand. [Jodi-Ann: Yeah.] But even if a person didn't believe that, if they didn't believe that healthcare was a human right, for some reason, their logic models took them more toward this, you know, systems work around capitalism and all of that. Even if you didn't believe and you weren't in that camp where I'm at, you have to at least acknowledge that it is bad public health strategy, and bad economic strategy to not look at where the problem is and find a solution. *chuckles* And so that just doesn't make any sense to me. 

The other thought that I hold about philanthropy in the cancer space and research in the cancer space, is that our clients have the answers.

Jodi-Ann Burey: That is a fact.

Darcie Green: Our clients know what the gaps are in the system. The stories of our clients are what need to be researched. So when I think about research and philanthropy, I want to see research and philanthropy that starts there. I want to see philanthropy that invests in the empowerment of our patients. I want to see philanthropy that invests in trusting the narratives and the stories of patients. I want to see philanthropy that believes that the people who have experienced the injustice, the people who have experienced the adverse health outcomes, the people who have experienced the gap in the healthcare system, they are the ones who are closest to the solutions. They are the ones who are closest to how we fix our healthcare system. They are the ones who can help to provide information around new treatments for cancers. They are the ones who need to be represented in clinical trials. They are the ones that need to be invested in. 

So I want to see philanthropy that models that and the same goes for research. We get asked quite a bit to partner on research projects and the way that I choose them, whether we do or not, is the autonomy of our clients in the process. Is this a research project that somebody who has no connection to the community, no real knowledge of the people we serve, but they want to study Latino cancer. And so they reached out to us, because we're a Latino organization, and they just need some Latino clients who have cancer, and they don't really care about if the narratives that come out of that research don't align with what they want, they don't really care that, you know, what they want to research isn't important to the people that they want to research. [Jodi-Ann: Yeah.] Right, that is not a not an attractive proposal to me. I'm not interested in serving up our clients to be researched, if it's not participatory. [Jodi-Ann: Yeah.] And the relationship I have with our clients is one that is sacred and of trust. I am fiercely protective of that relationship. And I am honored that we get to be in that space with our clients every day. So we participate in research that is participatory, that is led by community, that involves community, that has community advisory boards made up of the clients that we serve, that is driven by the community. That's the type of research that we participate in. 

And I mentioned earlier to Silicon Valley Community Foundation, and how I also mentioned how the answer to the question around the competitiveness and how funding was changed through the pandemic—during the pandemic organization did pivot a little bit because the clients that we were serving, I mean, how can I ask somebody, Well, you know, have you ever thought about your mammogram? I know that you can't feed your family and you're losing your house and you know, you somebody in your house just got COVID, now your whole family has COVID. But, you know, have you thought about, you know, yoga for...? *both laugh* You can't, you know, you can't do that, you know, as an organization that exists to eliminate health disparities, it was not mission drift at all to pivot to COVID relief, and COVID support and pandemic support. And in that we actually became deepened in our mission and commitment to community. We became closer to the clients we served. We used our same navigation advocacy skills in our organization to help them navigate COVID and the impacts of loss of income and the impacts of loss of health insurance and delayed treatments and delayed appointments and everything else that goes with it. And there's organizations like Munich Community Foundation that did a lot to fund that work, ours included in the beginning of last year. Honestly, I didn't know what we were going to do. Because a lot of funders pivoted their money away from cancer. We had four different funders who always funded cancer, and I get it, right, but in the beginning of the year, they sent notice saying we're not funding cancer right now. We're gonna pivot everything to these other really worthy things, right, food security, and all these other things that were happening. Not seeing the intersection. [Jodi-Ann: Exactly.] You know, not seeing the intersection. So we had a lot of loss, like anticipated revenue loss in the beginning of the year. 

But organizations like the Silicon Valley Community Foundation, our city,  City of San Jose, and others, Destination Home that does homelessness prevention came in and gave us operational funding. And if it were not for them, we didn't, we didn't have to cut any services. During that time we cut not a single staff person, and not a single service. And in fact, we grew in our services, and we served more people more deeply. And that was because of that pivot of very specific members of our philanthropic community, who with intention and with their language of how they talked about it, purposely looked for organizations that were led by people of color, serving people of color to fund at that time. And it wasn't money, we had to, you know, write a huge grant for—it wasn't money with all...it was just “we know you need money to keep doing what you're doing. Here it is, and keep doing what you're doing.” And we did that. To me, it goes back to trust patients. Give them money, so they can survive, and trust grassroots organizations and give us the money that we need to serve our clients. And we do have–there’s been some great partners.

Jodi-Ann Burey: No, I love that. And I think there's power in that, right? Because those organizations who pulled money from you could have easily said, “Hey, we aren't going to continue funding cancer, but we need cancer organizations to meet us at those intersections of food and Employment Security and housing security and their cancer care. And without that intersectionality, then we just start funding these single issue things.” And I think if every single issue focused organization also operated like a multivitamin, right? Like, yes, you need some calcium, but in this calcium has all these other things attached to it. Like that's how we can actually start shifting the needle, not in a small way, but in really big, impactful ways. You know, there are multi-million dollar companies that had to lay off a huge chunk of their staff, right. And here are you, growing your staff during this period. And I think that just goes to show that we get the job done. And we're always doing more with less and we're always making a way out of no way, and can that be acknowledged and supported with dollars?

Darcie Green: Yeah, that doing more with less really resonates with me, ‘cause I say that sometimes to people about LCC and what we're able to get done with $1. And what our team, our small but mighty team of Latinas, are able to make happen for people and when people hear all the things that we do, and then understand that we are a part-time organization. 

Jodi-Ann Burey: Wait, part-time?

Darcie Green: We have been part time since our founding. Yes, I am working to make us full time. But we are and clearly I don't work part-time. But on paper I'm part-time. Yeah. And we are a part time organization. And we're small, and we do all of that. And the reason in the beginning, when I first became a nonprofit ED, I thought of funding in one way, you know. It was like we're going after funding, and our organization wants it because we want to grow. We want to do these, you know, provide these services to the community. And, and now that I've been at LCC for three years, I think of it differently. And it I have urgency under me to build us up into an organization, because if LCC is not funded fully in the same way that our white counterpart organizations are, it's not LCC that’s suffering because of that. The clients we serve, it's just another inequity that they're facing. [Jodi-Ann: Yeah.] Why don't our clients also deserve that level of resource for them? 

As I fundraise, that's the inspiration I have is, it's not just because LCC wants to do this really important need. It's also because the clients that we represent deserve health equity. [Jodi-Ann: Yeah.] They deserve it. They deserve it from their healthcare system, and they deserve it from us, and we need to be fully funded. What we do with $1 right now is miraculous. And I have to just give this huge shout out to my team, because they just move mountains every day. And they do it with compassion, and they do it while dealing with stuff in their own lives. And they do it well. [Jodi-Ann: Yeah.] We all come from the communities that we serve. So we're all facing some of these same problems. We're all impacted by COVID. And some of us in the same way that clients have been impacted by COVID. And, and yet we are showing up every day for our clients, and making miracles and making all of this important work happen. And when we're doing it with so much less, and just imagine if we had the money we needed to scale up and to fully fund this effort, the incredible impact we could have. And more than that our clients deserve that. So that's the inspiration I have and I'm out there looking for funding. [Jodi-Ann: Yeah. *laughs*] This is also health justice. This is also health equity.

Jodi-Ann Burey: Exactly. And what's interesting too is that the conditions that COVID created in our lives in our economy, the housing insecurity, the food insecurity, the job insecurity, the insurance insecurity, all of that, a lot of communities have been dealing with COVID-like conditions way before the pandemic. And sadly, will continue dealing with COVID-like conditions just like the environment of it way after. And so there's a lot that you're seeing right now that is really hyper specific to this time, and in a lot of ways, feel, unfortunately, evergreen in ways that we are trying to shift. And so if this project, this podcast can do anything to shift something for you, that would mean a lot. And so for folks who will listen to this in a couple of weeks, or who might listen to this in a couple of years, what can our listeners in the US and abroad, what can our listeners do to support LCC and your work, and even other organizations like yours, to better advocate, to better make things happen in their communities without having to struggle so much?

Darcie Green: Thank you for that question. You know, the first thing is, tell people about us, right? And, you know, make sure that people know what we're doing and that we're here. One of the most heartbreaking things is a client getting to us just a little too late. You know, a client who, and we navigate and serve people mostly in Silicon Valley in Santa Clara County, but not exclusively will have people who call us in other parts of the country. And we know if there's a Latina calling us from a place where there not a lot of Latinos, it's because there are not services for her. And she has reached the end of her and we serve men too, right? So women and men. [Jodi-Ann: Yeah]. But we have fielded calls from other states, particularly if their calls were that we know that there's not a big Latino population, because that means that their hospital system probably doesn't have Spanish speakers, they probably don't have resources that they need. So we don't want to just leave that person high and dry. So, we'll try and navigate them into something closer, or we'll just try to actually navigate ourselves. And I'm thinking of a woman that came to us, it was one of her family members who finally found us online, and she had no insurance was in a place where there were not a lot of Latinos and just couldn't access the cancer care that she needed. And she had been trying for months and knew she had something—she needed to be diagnosed. By the time she got to us, we were able to, we just started calling the CEO of this nonprofit clinic. [Jodi-Ann: Yes you did. *chuckles*] And we're calling and we're just you know, and she was fantastic, right? She didn't, you know, she was far removed from it. But she didn't realize that was happening. And she helped us get it all taken care of. The woman passed shortly after that. And it was just too late. By the time she got the care she needed. It was just I mean, who knows? Like what, you know, this, what the if, if getting there earlier would have made, I mean it probably would have made a difference, because it would have been earlier detection. But who knows the exact circumstances I don't want to play the what would have happened game. [Jodi-Ann: Yeah.] But people not knowing we exist is a problem. Even here in our own county, we hear so many times just we didn't realize you were here and that you could help us. So we're just really trying to get the word out. Because we're a small organization doing big work, we don't often get the time or resource to do that type of marketing or to have a big communications team or people out there churning out ads or doing that work. So we do...

Jodi-Ann Burey: You don’t have the button at the end of the Whole Foods line. Do you want to add a dollar? You're like, we don’t have that.

Darcie Green: No, no, we don't have that. So we're working on it. Right? We don't have that. So we depend a lot on word of mouth for people to Google us. But not many, some people don't, you know, have access to that. So word of mouth is important. So just telling people that we exist, and we're out here. And if you're in a place where there's an organization like us, right, there might be a type of Latinas Contra Cancer, where you're at and look them up and tell people that they exist. So just sharing that there are organizations out there that can help you to be there with you so that no one has to do this alone is important. 

The other piece, obviously, is donations. If you want to donate to us, you can visit us at latinascontracancer.org and you can see all the work that we're doing, there's no donation too small, it's all very encouraging and helpful. As I mentioned earlier, we could do a lot with the dollar. So any donation that you want to make is helpful. And if you are out there, and you are part of the philanthropic community, or if you know of any opportunities that might be good for us, please certainly let them know about us or send us information about it. We are trying to scale and to grow so that we can be there for every client who needs us so we can show up for every person in the way that they need us to show up for them. 

And then the other thing, this is I guess just a personal ask, after having this whole conversation today and thinking about what people can do to make the healthcare system better, is just if you heard anything from today, I hope you take a lot from it. And I hope you also take from it that you deserve quality healthcare. Like if someone hasn't told you that you deserve quality healthcare, I'm telling you right now, you deserve quality healthcare, I don't care if you've been unemployed, I don't care if you have bad eating habits, I don't care. I don't care. You know, you smoked a lot when you're younger. I don't care what you do in your life, you deserve access to health care. And you deserve that health care to be quality, and adequate, and affordable, if not free. That's a whole ‘nother podcast. 

But you know, another thing that folks can do to help us in this bigger picture, as we're trying to not only deal with people's individual needs, but change the system overall, is educate yourself on universal health care. Educate yourself on single payer, educate yourself about how these laws work. Educate yourself about what this administration's doing around the issue of healthcare. Educate yourself about your own local county government system and how your own county hospital works. Educate yourself about your own insurance plan and know what's in your insurance plan. Educate yourself about how to effectively advocate for yourself and your loved ones. Because although I may never meet you, we may never cross paths. If more of us can be out there demanding this basic human right, then we can start to switch that narrative because right now in this country, we're still at the conversation around does everybody deserve it? [Jodi-Ann: Yep.] We can't even get to the logistics of how do we provide everybody with adequate health care? Because we're still at the conversation: does everybody deserve adequate health care? And that's the wrong space for us to be in. And that narrative only changes when all of us start to demand a different story.

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Jodi-Ann Burey, as host: Black Cancer is created, edited and produced by me, Jodi-Ann. Thank you so much, Darcie, for sharing your story with us. To make sure that other Black cancer stories become center to how we talk about cancer. Rate, Subscribe, but you know what? Leave a donation for Latinas Contra Cancer. Check out our website at blackcancer.co and on Instagram at @_black_cancer. Trauma comes with endless wisdom for ourselves and those around us. Please tell someone you know about Black Cancer.

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