Your Diabestie Ep 10: Healthcare Realities: Navigating Diabetes, Representation, Change and Advocacy with Corinna Santa Ana

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Hi Diabesties,

Today’s episode with Corinna Santa Ana is just one of those conversations that I wish could have kept going. We covered so much in today’s episode.

Corinna is a fantastic diabetes advocate, and if you don’t already follow her, you should check out her writing at type2musings.com.

  1. How the Diabetes online community has changed over the years
  2. Insulin Prices and Global Impact:
    • Corinna discusses the issue of insulin prices in the United States and how the USA makes an impact.
    • She emphasizes the global impact of choices made by companies producing insulin for different regions, affecting diabetes care worldwide.
  3. Commercialization of Chronic Disease:
    • Mila and Corinna discuss the commercialization of healthcare in the U.S. and how chronic diseases, including diabetes, are marketed.
  4. Differences in Healthcare Systems:
    • Mila shares insights from her brother’s experience in Denmark, highlighting the differences in pharmaceutical regulations and advertising restrictions.
  5. Representation and Stereotypes:
    • The conversation touches upon the lack of representation in diabetes advertising, focusing on stereotypes and the need for diversity in marketing materials.
  6. Challenges in Advocacy for Type 2 Diabetes:
    • Corinna delves into the challenges faced by people with type 2 diabetes in online spaces, discussing the less vocal online presence compared to type 1 diabetes.
  7. Industry Influence and Sponsorships:
    • The impact of industry sponsorships and the choices made in elevating certain voices in the diabetes community are explored.
  8. Acknowledging Privilege and Gratitude:
    • Corinna and Mila discuss the importance of acknowledging privilege in accessing healthcare and the need for gratitude despite existing challenges.
  9. Community Engagement and Cultural Sensitivity:
    • The conversation expands to include the importance of engaging with diverse communities and being culturally sensitive in healthcare approaches.
  10. Treating People as Individuals:
    • The overall theme centers around the call for treating people as individuals, understanding diverse experiences, and fostering inclusivity in healthcare representation.

Listeners are encouraged to explore the transcript and related content on at diabestiepod.com

You can find Corinna at Type2musings.com

Your Diabestie Ep 10: Navigating Diabetes, Representation, Change and Advocacy w/ Corinna Santa AnaYour Diabestie Ep 10: Navigating Diabetes, Representation, Change and Advocacy w/ Corinna Santa Ana
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Episode Transcript

*Unfortunately tech happens, and only half of my transcription got captured. But, fear not! The podcast is available with transcription on YouTube as well for accessibility.*

Corinna Santa Ana: Insulin prices in the United States. Hey, we can go to Canada and Mexico and buy our insulin there and save some money. Who cares about the impact that has on their domestic insulin supply?

What’s approved in Europe that isn’t approved here, yet. And how [it’s two] totally different systems with different criteria plus all the marketing stuff. And there’s this whole swath of the [world,] South Asia in particular and Africa and to a large extent, Latin America that totally gets ignored.

[And] is really experiencing epidemic incidents of diabetes. None of that gets talked about in diabetes awareness month. If you pay attention to the IDF and the World Health Organization, maybe the UN might get a little bit of that. but mostly we, at least here in the United States, don’t. Hear see anything about it, understand that. Yeah, it happens, thousands of miles away, but It ultimately] does have an impact on diabetes care here. Because the same companies that are making insulin for the United States and Europe and North America are making insulin for Africa and Asia and South America and making choices about [it]. How much do they distribute and what proportion of their revenue comes from these regions and what kind of support?

Mila Clarke: Which insulins they discontinue?

Corinna Santa Ana: They are only [going to] sell in some parts of the world, or rebrand and sell as a weight loss drug instead. Now that’s not strictly an insulin, but [you know what] I’m talking about.

And so, the awareness month does come off to some extent is being very self-serving for sort of the medical industry and the healthcare industry and pharma industries.

: But I don’t think that’s anything unique to diabetes. I think that that whole, fill-in-the-blank Awareness Month

: paradigm feeds into that. Whether we’re talking about breast cancer or diabetes or IBD or mental health or whatever. So yeah.

Mila Clarke: Yeah, it feels like a very wild landscape when. Chronic disease is commercialized. It’s one of those weird things how did this happen in front of us? And

Corinna Santa Ana: It’s like healthcare, who knew it would be [a] big industry? And I mean, I think at least in the United States it’s gotten obviously so, probably in the last. 40, 50 years. But to some extent it always has been.

00:30:00

Mila Clarke: Yeah, okay doing the most while they can before anyone imposes any sort of. Boundary or restriction it’s kind of interesting so my half brother grew up in Denmark and I grew up in the US. We’re six months Age Funny family story you can probably glean what happens there, but he grew up his whole life in Denmark. I grew up my whole life in the United States and earlier this year. He came to visit me in Houston. And so we’re talking just about growing up in the differences of culture and really how

Mila Clarke: medical Brands and pharmaceutical brands in Europe and specifically in Denmark are more heavily restricted and whereas in the US there is Just kind of like do what you want businesses capitalism make money go on and…

Corinna Santa Ana: Yeah.

Mila Clarke: go forth. And the thing that I found really interesting is that while we will see ads for medications for devices for whatever on TV all the time, pushed on the internet all of that kind of stuff in Denmark. It’s heavily restricted, which is also really interesting because one of the big three insulin companies is headquartered In Copenhagen and so I just thought that that was so interesting because we were talking about commercials on TV and he was like, yeah, I don’t think I’ve ever seen a pharmaceutical commercial and I was like, what do you mean and he was like, they don’t air on TV. They’re not allowed to hear. and I was like

Mila Clarke: What do you mean what part our air time and our slots? And so I was thinking about that and it’s so interesting just how and it’s not to say that they don’t have chronic disease in Denmark,…

Corinna Santa Ana: Yeah.

Mila Clarke: but the advertising and the messages are more tailored to Physicians who are prescribing this information and not to patients and consumers who might be the beneficiaries of that medication and it is so interesting but the dichotomy between the two and…

Corinna Santa Ana: Yeah.

Mila Clarke: just how in the US it really is kind of like there are no rules do whatever you want.

Corinna Santa Ana: There are some rules. If I’m not mistaken Denmark also has nationalized healthcare, right? So Yeah.

Mila Clarke: Yes, they do.

Corinna Santa Ana: So I mean, there are rules if you’ve ever had to try to deal with the marketing department of a pharma company or healthcare company. There are restrictions on what they can say.

But yeah, that I mean they do market more to the end user so to speak, the patient. There is an upside to that which I think is that It has opened up a lot of conversation about between people and their healthcare providers.

: When the advertisements started, man, doctors hated it when somebody would come into their office and say I heard about this thing and maybe I want to take it too and then the doctor’s faced with what is this thing? And do you have the condition that it addresses and will your insurance cover it? And so it did sort of, put a few cracks in that wall between patient and provider hierarchy, where the doctor is all knowing and all seeing and makes all the decisions. But yeah, it’s sort of

also, like I said, it’s the Wild West there. The rules are so narrow and small or light that do you really need to be going to your doctor and say and, I don’t know, I want this thing because I saw it on TV. And not necessarily because I understand what it does or how it could help me. So yeah, I don’t…

00:35:00

Corinna Santa Ana: I guess I don’t see [the] kind of the black and white of it. I don’t see [that] nationalized medicine is all good and private health insurance is all bad. They’re different systems. You got to work them. Sometimes one seems like it’s easier to work than the other. But talk to anybody who lives in England about the National Health Service and waiting six months to see a doctor and having it take a really long time to get a diagnosis or

not being able to get treatments early on when a complication shows up and having it have to sort of fester before you really get the attention and the medication you need.

The reasons for that are complicated but it’s neither, or none of them are Nirvana.

Mila Clarke: Yeah, nothing is perfect. You kind of just deal with the systems that you’ve got in the context that you have them and do your best.

Corinna Santa Ana: Yeah, and I think for us in the Western World, we would benefit also from having a bit of, okay maybe I should put my steel shirt on now, a bit of gratitude for the access and that we do have that a lot of people in other parts of the world [don’t]. Not to say don’t advocate for yourself. Don’t push for more when you need more but [things] could be worse.

Mila Clarke: yeah, there’s a certain level of privilege that I don’t think we always acknowledge and not that everybody has the same access or the same resources, but in a lot of ways, especially in the United States, we are fortunate to live in the United States because of the access that we get there are countries where insulin is a second afterthought for that country or where someone who lives in a remote Village can’t travel four hours round trip to go get their insulin pen from a pharmacy because the pharmacy won by not they have to take time. They have to take resources to have to do that. Whereas we have convenience a lot of times here at our doorstep and not always but

Corinna Santa Ana: Yeah.

Mila Clarke: I think more than other places do and I think sometimes we would all be better to recognize and remember that when we’re screaming at each other on. X

Corinna Santa Ana: Fill in the X. yeah.

Mila Clarke: feeling the X

Corinna Santa Ana: I mean, I think there are still places in the world. Where a diagnosis of diabetes is a death sentence.

Period, end of story.

Thankfully for you and me and most people in the United States’s Most people in the West. That’s not the case.

Mila Clarke: Yeah, absolutely.

Corinna Santa Ana: Yeah.

Mila Clarke: the other thing that I wanted to ask you about and talk to you about is I think advocacy as a whole and who shows up who we see which voices pop up on the Instagram explore page, you share so openly and realistically about living with type 2 diabetes.

Mila Clarke: I think that you are one of the very few voices and what I think is so interesting is that we know that the majority of people living with diabetes in the world are people living with type 2 diabetes.

Mila Clarke: Super interested in what your take is on that.

Corinna Santa Ana: It’s complicated. [Like] most things in life

First of all, I think that online is not necessarily a very welcoming place for a lot of people. And so that puts off a lot of people especially if you’re older or you’re not social media savvy or your culture is one that values.

00:40:00

privacy. And so social media platforms, the media are not just in and of themselves friendly to everyone. That’s a part of it.

Corinna Santa Ana: I’ll go back to Scott Johnson again. We were having a conversation and at some point he said there’s people with type 2 diabetes [online, but they’re not talking about diabetes.].

When I asked him about what was behind that statement he said something that was really interesting to me and

I think this is based on what type 2 diabetes [treatments used to be].

What’s there to talk about?If you’re taking metformin along with your statin and

you do that in 10 seconds in the morning and you get on with your day. Do you feel like you need to find a supportive community [and] have a more complicated conversation? Maybe not. But then, there’s the aspect of what are the three things we’re told to do right? Take your medication, exercise and lose weight. So the exercise and lose weight part there’s a whole other ecosystem that addresses that that’s not particular to diabetes. And so maybe the people who are looking for that kind of support, [are] engaging in that ecosystem. And so

again, they’re online. They’re just not talking about diabetes.

But I think also industry plays a part. Because industry, through their sponsorships, through their events when they have

(I’ve forgotten what they call them) they bring a group of patient Advocates to their headquarters or wherever and where they sponsor a conference or a summit or an event, they make very specific choices about who they sponsor.

: I mean ultimately it’s an economic decision because they’re not doing that out of the goodness of their heart. They’re a business. They don’t have a heart. They exist to make money. And so they’re going to lift the voices of people who

sell the products that they produce which, up until recently, have been primarily aimed at type 1 diabetes. It’s been insulin pumps and CGMs, which only recently have started to be marketed and studied for use with type 2.

The big switch is over, the next big sort of wave of industry sponsorships, I think, are going to be around

the injectables like Ozempic and Wegovy and all of that. Which they’re not marketing as type 2 diabetes medicines. They’re marketing as a way to lose weight. And so, they’re going after,

in health terms, are going after the obesity market. Which is problematic, especially if you have type 2 diabetes. So

00:45:00

while there’s interest in the industry in type 2 diabetes [it doesn’t necessarily ]

Corinna Santa Ana: match that community. So it’s complicated. I think it’s partly platform, partly people’s inclinations, partly where the money is.

Corinna Santa Ana: The other thing about people with type 2 diabetes [that]

has been fed to us as unless you see the “actual patient” below [the image], then it’s like some random person we found somewhere in the middle of the country.

Who may or may not look like anybody who’s going to show up in a fashion magazine or a TV sitcom.

So there is that too. Just whereas. I mean the reality is type 1, people with gestational, people with LADA…

They look like everybody. If you go and sit in the waiting room of any endocrinologist, everybody will go through there. Young, old, short, tall, narrow, wide. Light skinned. Freckled skinned. Bald.

But that’s not what our media feeds to us.

Mila Clarke: yeah, and it’s so unfortunate also because a lot of those companies that make these devices or make these medications or are

Mila Clarke: Responsible for delivering these products in these tools of diabetes management to people with diabetes into the media Narrative of if you’re not skinny tall white beautiful, then you can’t be on this ad you can’t be represented because this is not what people want to see when we know and we have as advocates been crying for representation and wanting to show up in those spaces because people tell us you’re black there’s no way that you can have type 1 diabetes or you’re fat. So there’s no way that you can have type 1 diabetes or this or you’re that or you’re that and so you don’t fit this profile or you aren’t diagnosed when you were young, …

Corinna Santa Ana: Yeah.

Mila Clarke: they’re all of these just horrific stereotypes that I think are rooted in medicine because commonalities averages right? if you see that’s kind of the way that your brain. Is that but there it leaves out? I think the anomalies sometimes but also just people who want to show up and be seen and want to feel like okay, this is made for me because if I see a CGM on somebody who

Mila Clarke: I don’t know runs a million marathons a month and they’re chiseled and muscular and I’m gonna think that’s not a product for me. That’s not a device for me. That’s not something that could even be helpful remotely when we know that the information and the data is super important and it helps people find balance and live better lives and takes a lot of the burden off and so it’s wild to me that we often see just the marketing and the advertising of diabetes. go very conventional if diversity of all types of faith of spirituality of race of age were Incorporated, it would make such a difference in the way that people I think received and responded to those products like

00:50:00

Mila Clarke: I don’t know every time I go to my doctor’s office and I see an ad with a woman of color. I’m always like it always makes me smile because I’m We’re represented at least a little bit. even if it’s just on this poster on the back of the door, I I’m happy to see somebody who even remotely looks like And so it’s interesting to me that still. Companies and I won’t and not all companies but a lot of them don’t understand that if they embraced a wider population of people they would have more customers they could make more money and they would also have I think a little bit of gratitude toward the people who these products are made for that also feel represented.

Corinna Santa Ana: And I think there’s even. Assumptions are made everywhere.

And that’s part of how we make sense of the world, because imagine living where nothing was for certain. My gosh, talk about free floating anxiety!

The thing that’s almost even more insulting to me. Is that there’s these new stereotypes coming up about how people are being represented. You know what I’m talking about. You seen it. The older white grandparents and the biracial grandchild, maybe even two right? And it’ll be a boy and a girl. And the girl has to have big curly hair might be able to pick it out into a fro, but it’s at least ringlets. And I just go

who the hell are these people and these advertising agencies? …

Mila Clarke: it feels like I sometimes see as …

It’s like the one family they knew growing up.

Mila Clarke: but I’ve even been on sets before where I’ve been just watching and they literally have a diversity person that has a clipboard and a checklist okay, we got every single thing marked down in the and…

Corinna Santa Ana: Yeah.

Mila Clarke: I’m just you don’t have to try and make a representation of everyone all at once just talk to real people and you will find the representation, you don’t have to try and make it up like it exists out there.

Corinna Santa Ana: Yes, yes. I can’t remember her name.

Corinna Santa Ana: A black woman who has Type 1 who makes a point of going to JDRF events. I have to get better at learning people’s names. Because she says “how I feel about the work of JDRF is immaterial. I’m there for the little Black girl who says I see somebody like me who’s grown up. Who has Type 1.: And that can be me.”

We just need to do more of that.

I’ve had these conversations with industry people where they’re like… ,

I remember when one particular company was so proud of the fact that they had set up a system to do translations and their customer support

system so you could call and, I don’t know, speak one of 200 different languages and they could find somebody to talk to you. And then the question was but how do we reach that Hispanic market in the United States?

And I was like you’re telling me you can talk to other languages, but you don’t know how to find us. What?

And I sat there for a minute and I said first of all, don’t treat us like a monolith. We’re not all the same. Some of us have been here a while. [I’m a] second generation American-born Mexican American. Some of us just got here. don’t. Expect my experience. to be the same as a Dominican who just showed up.

00:55:00

Oor a Puerto Rican who goes back and forth between the island and Miami. throughout their life or

A South American who’s landing in the United States to escape political turmoil. And I don’t know, it was like talking to Bambi caught in headlights. They didn’t get it. There is no one way. You have to reach out to the various communities. You have to build those relationships.

I had another conversation about that with another company and it’s like you’re headquartered in Baltimore, Maryland! Walk out the front door of your headquarters and go talk to people in community clinics. Go talk to people at Johns Hopkins.

Ask them the questions. They’re the ones that are working with people in your community. You don’t even have to get on a plane. You may not even have to get in a car if you will brave the bus system.

Mila Clarke: And I think our brains are defaulted too to think.

Mila Clarke: Where do we find these people online and it’s online is not the only place where people exist. sometimes you have to Make the effort to meet them…

Corinna Santa Ana: Correct.

Mila Clarke: where they are and that might not be. Them being connected to their cell phone or their computer. They might not even have a cell phone with a screen or a computer.

Mila Clarke: So it’s recognizing that.

Corinna Santa Ana: Yeah, and you mentioned something in passing earlier that really struck me. Just think about if we could

people in their spirituality and religion. Some of the more interesting healthcare things that are happening are in faith-based health. Where are people getting health screenings? Sunday morning at church.

You know, what if instead of it being somebody with a tonic to sell it was a research hospital showing up? Who says I know

that South Asians [are] at greater risk of diabetes. I know that the popular opinion is that

your heritage food is problematic for managing that. What if we come to your community and help you understand what’s happening within your bodies? And you teach us about your daily habits. And we build a curriculum, get it taught in temples across the country. Maybe even take it back to your home country. What if we could look at healthcare as building community.

Mila Clarke: I feel like that is the question to end on.

Mila Clarke: I mean that is Food For Thought just imagine If we treated people like people and…

Corinna Santa Ana: And the angel sang.

Imagine

Mila Clarke: met them where they were instead of trying to check off a list of things that we want people to be.

Corinna Santa Ana: have or…

Mila Clarke: have

Corinna Santa Ana: look like act like.

What [if] it’s not just the healthcare establishment? But As a diabetes community. Us as patient advocates. Us as just people.

Mila Clarke: You gave us a big question and I love it. I feel like that’s the question coming from this episode. One of the questions I was going to ask you is what? Would you want the audience to know or to think about or to walk away from this conversation with and honestly, I think it’s that.

01:00:00

Corinna Santa Ana: I agree.

Mila Clarke: Corinna this is such a good conversation. I’m so happy to have had it with you as we’re winding down. I would love you to tell all of the diabetes where they can find you and where they can find your work.

Corinna Santa Ana: So I’m online My website is Type2musings.com. Mila Clarke: Yeah, definitely have to have another conversation about that because disaster preparedness in itself is such an interesting topic. I live in Texas in Houston specifically where we get hit with the hurricane about every five years. So it’s on the mind sometimes…

Corinna Santa Ana: Yep.

Mila Clarke: but thank you so much for being here. If you are listening to the episode, you can find the transcript the video and the actual podcast recording at your diabestie. my God, why do I get the website wrong every episode? It’s diet bestie pod.com I get it wrong every single time, but You’ll find the episode and you’ll find all of corinna’s information so that you can check out her blog type 2. Things so thank you so much Corinna for having this conversation with me today. I so appreciate it. And like I said before I always loved the depth of conversation we get to have

Corinna Santa Ana: Thank you for having me and my best wishes out to you and everybody listening.

Mila Clarke: thank you so much.

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