The Advocacy and Stigma of Type 1 Diabetes

The Advocacy and Stigma of Type 1 Diabetes

School of Public Health. She's a trained physician from India and her interest in global health focuses primarily on childhood diabetes, specifically on improving access to care in low- and middle-income countries. In this episode, Dr. Apoorva Gomber shares her own experience with type 1 diabetes and how it drove her to become involved with type one diabetes advocacy. She discusses the importance of patient advocacy, and she offers tips to better advocate for yourself as a type 1 diabetes patient. Dr. Gomber also highlights the issues with healthcare access for individuals with diabetes, and what steps are being taken to address these barriers to care. Podcasting from Dallas, Texas I'm Shireen. And this is the Yumlish Podcast. Yumlish is working to empower you to take charge of your health through diet and exercise and reduce the risk of chronic conditions like type 2 diabetes and heart disease. We hope to share a unique perspective and a culturally relevant approach to managing these chronic conditions with you each week. Welcome Dr. Gomber Dr. Apoorva Gomber: I'm so glad to be here. Thank you, Shireen, for inviting me. Shireen: An absolute pleasure. Dr. Gomber, we're diving right in. Tell us how you got involved in type 1 diabetes advocacy and medicine. Dr. Apoorva Gomber: So, it's a long story, and when I look back, I kind of like recollect all those memories of how my diagnosis kind of motivated me and kind of like brought me to where I am today. So I was diagnosed with type 1 diabetes at the age of 13. And coming from a family of doctors, that's what my motivation was, that I had to be a doctor and there was no choice because I come from India and in India, like if you come from a family of doctors, one person has to be sacrificed to be a doctor. So I did, I did the sacrifice, but I'm so glad I did it. Shireen: And so what was your journey with type 1 diabetes? Dr. Apoorva Gomber: So, looking back, I think when up, so I had all the symptoms of type one diabetes, which you are, which people can Actually relate to: polydipsia, polyuria, and polyphagia. So it's like too much eating, not gaining weight, losing like frequent urination, and also feeling fatigue. So I had all those symptoms and I was studying for my pre-med that time. I was in school. My parents, both my parents are doctors and my mother is a gynecologist. So I had repeated episodes of urinary tract infections. And because I was a teenager, my mother who actually picked up those symptoms and she was like, why are you getting all of this again and again? Are you not taking care of yourself? And that's when my father randomly checked my blood sugars because he was a, he's a diabetologist. The irony of my life was that when he tested my blood sugar, the blood sugar reader did not read anything. Like it just said high. And he was surprised and he was like, Apoorva, go wash your hands. And I washed my hands. I came back again, the same process. The reader did not read any number. So it just said high. So my father knew that something was wrong, and he sent my blood work. And when the reports came, my E1C was 16.4, which normally is six point less than 6.5. And for a normal person, that's like 5.6 to 6, approximately, but mine read six point - 16.4 and my random blood sugar was 7 65 milligrams per deciliter. And he was shocked and I could see tears rolling down his eyes. I was a kid; I couldn't understand what's happening. So I was like, okay, what just happened? Suddenly everyone's looking at me like that. And I was rushed to the hospital. I was, my ketones were tested, which was positive. I was taken to the ICU and all the entire process of like insulin injections came into my life, so I was very happy being thin and everything. And I did, I thought I was very skinny in school and I was happy about it, but I was 45 kgs. And within a week after my insulin injections because I was injected with insulin so many times. I gained weight to almost 65 kgs in two weeks, which was shocking for me. And that's when I faced so much stigma and stuff like that, which I think we will delve deeper into our conversation. So that's all happened and life changed for good, probably that I started to take care of myself. Shireen: Wow. That's got to be such a shock when you are yourself, your family, and people around you and gaining that weight and trying to first navigate what is exactly happening with you. And then sort of looking at yourself and going, What is happening? Right? And being lost at the same time. But it certainly, and I think it, it worked to your benefit that you have parents who are doctors, right. Who were able to sort of step in and guide you and help you understand what, what exactly is going on. How does it, you know, you spoke about the stigma just a second ago, but how does the stigma related to chronic illness, and in your case type 1 diabetes, affect individuals with these conditions? Dr. Apoorva Gomber: So I can just talk about stigma, which I faced from my personal experiences and also because coming from a developing country, every chronic disease. If be it diabetes, be it asthma, or be it cancer, every chronic disease has stigma attached to it. And behind that stigma are real people, like real stories of real people. And that's one of the reasons why people don't let it out because they're stigmatized. There is so much blame, shame behind someone's condition and people don't see the story behind it. And I can, I can share my experience. As a person diagnosed with type one diabetes in a family of doctors who are educated, who are well known in the community, my parents told me to not share my disease with anyone, because I am a girl coming from a developing country. Okay. I come from a well-off family, but still my parents being so knowledgeable, they told me, Apoorva, do not share this with your family, your cousins, not even your schools. So I was a person who was struggling inside, wanting to let out and tell people I need help. I couldn't share it just because I had this fear of being stigmatized, of having this shame to carry along, a baggage of blame that I did this to myself. So, I think that's where for years I did not share it with my family, with my cousins. None, nobody in my family knew about it. Nobody in my school knew about it. I was inside getting suffocated and I was like, I have to let this out. This is just eating me up because I couldn't help myself. Because I was not, I wasn't confident with my own condition and hiding it was making me even more worse, and it was negatively impacting my mental health, was negatively impacting my relationship with my family, my parents, because I thought they purposely telling me to hide this thinking that I will be a negative thing to the family. And I'll tell you the reason why most of the people in India hide their chronic disease is because the community outside has made this shame around chronic diseases, that a female living with diabetes is not fit or doesn't is not a suitable match for getting married or like she cannot achieve her dreams. Or probably there is a lot of stuff behind that shame. And I think that's one of the reasons why my parents, what they thought was right, is that hiding is the only way. I realized that I cannot do this. And if I as an educated person living with diabetes, if I will not voice for people who are living with it, then people who are uneducated, who do not have access to stuff, how would that problem come out in the community? So that's one of the reasons why I started like five years later from like getting eaten up in my own stigmatized zone. I was like, it's time to let it out. So I use social media as one of the tools to start my own T1D Fighter, which started as my personal journey living with type 1 diabetes, because I just wanted to vent out. And for, for, for a few years, I did not show my face on Instagram because I thought, oh, my parents will find out. But then eventually when I kind of like made peace, accepted my own diabetes, I was like, this will be a portal for me to share my journey that yes, the struggle is real behind these numbers, stats are real people and real stories of people that need to be out so that we don't shame or blame these people living with chronic diseases. So, but we make them and include them in the community because we, they are real people. Shireen: So how does your advocacy work address the stigma surrounding type 1? Dr. Apoorva Gomber: Yeah, that's a, that's a very interesting question, because I never thought about getting into advocacy, just because I never thought I would have diabetes. And I never thought that my being a doctor would actually turn me towards advocating for patient rights for people living with chronic diseases. So, it actually came from my own personal journey, , while dealing with diabetes because I was looking, as a medical doctor, I was also looking for answers and, you know, as doctors, what we read in the books are just theoretical knowledge of diabetes, but we don't see the lived experience, , when, one goes behind the doctor's room, the 24/7 efforts that goes again, because a person doesn't have to just deal with the pharmaceutical part of diabetes management, but also deal with the other aspect of life, like dealing with his dreams, with his aspiration. Dealing with family and festivals. So many things you there's so much that goes around and we have to be a part of all of that. So I think that's where advocacy came into my life and I thought I need to bridge the doctors and the patients gap, and we need to like make this as a more inclusive, lived experience so that it is not just like you just go to your doctor and your diabetes is solved, but you actually live more powerfully, more empowered. And that's how we started this small patient group in Delhi when I was in Delhi, basically sharing my own story, that I was also looking for answers. As a medical doctor, I don't, I don't know everything about diabetes, but I was also struggling because what I was reading in the books, when I was implementing it in my real life, it wasn't working because there was a missing part. There was a missing part of my lived experience. I had to understand my own body. I had to understand, play around with my insulin doses, my food. I changed my food dietary habits so many times to understand what works best for me. And that's how advocating for my own self actually started this journey of patient advocacy. That, yes, that's the missing piece in diabetes management. Shireen: Can you talk more about the importance of patient advocacy and how individuals with type 1 can really advocate for themselves and others around them? Dr. Apoorva Gomber: Yeah. That's very interesting point, Shireen. And I think it comes with all chronic diseases. Living with diabetes comes at a very early age because most of these people who get diagnosed with type 1 diabetes are very young. Either they are five years old or ten years old, and they have to live their life. So it's important to understand that what goes inside and what's going on a daily basis has to be put out in the open with your doctor because you have to deal with your normal life. , other than diabetes. And that's why advocating for yourself is so important because a doctor would not know what you're going through, unless you put it forward that you need this. When I moved to Boston, you know, like I realized in the U S advocating for yourself is even more important than advocating in a developing country because in a developing country, people hardly know about, like diabetes that much, but in India. , but in the U.S. when you, you know, that there are so many things available, you need to speak to your insurance, you need to speak to your doctor. You need to speak to your other medic mental health provider because they don't talk to each other. You are the one who has to connect them all. And that's the hard work. That's why advocating for yourself is so important. And we need to be empowered as a community, so that we can tell them that, Hey, I exist and I need these, these, these things. So you need to help me provide these because once I have the toolkit, then only I'll be able to manage my diabetes along with living a near normal life, if not now. Shireen: And, you know, when you're talking about this, I mean, where, where does one begin? You know, how do you get access to that kind of care? Dr. Apoorva Gomber: Yeah, that's a very complicated question, getting access, and that's what we are all striving for as a community. I think people with living with diabetes, all of them are doing their own part. Wherever we are, like people in India are doing their own part and people in the U.S. dealing with other challenges of insulin access like we have in the U.S. They have everything available, but still there are so many people having challenges accessing insulin, because there are challenges of price gouging, of monopoly, so many things happening. In India, the access means something different. They do not have it. So price. Not an issue there. They do not have the things available right there. So there's two different sides of the same coin. Access means different things in different countries. And some countries like Africa, they don't even have availability of regular insulin. It just makes it even worse when you don't know that thing exists. How would you even know that you have access to it? So it's just confusing sometimes, but I think access and price of insulin, I think, I, this episode would be after Elizabeth Raleigh's episode, and I think she's done a fabulous work with T1 International, where she's actually educated people that listen. The price of insulin, even after a hundred years, since the discovery of insulin is the most important challenge which we are facing even after a hundred years, like people do not have access and the access issues are so different. And she did mention in her show about price gouging about the three major partner, like insulin companies, producing insulin, having patterns. So there's a lot of complexity there. But also at the distribution level within countries, access is also a different issue. So, I thought in India, I was having an easy time, or like U.S. has everything. But when I came here, the struggle here is, is very unique and everyone's struggling with diabetes, be it in a developing country or in a developed country. And that's why, that's why this year like Centennial, T1 International, everyone collaboratively working for fighting for access to getting insulin in the essential medicines medicine list, because we all need insulin, like be it type 1 diabetes, they needed it for survival, but type 2, any form of GDM, gestational diabetes, or latent onset diabetes, which is Lada. So all these people need insulin and without insulin. People living with type 1, diabetes can, can die. And we've seen people dying just because they do not have insulin, but also there is this important thing that with insulin, even if you provide insulin free of cost, there are other things that also play a huge role. So it is called bundling. Basically you need insulin, you need test strips like the blood sugar test strips all in a package. That's why you bundle all of that because you can only take mindful decisions, only when you have that bundled toolkit with you and then only diabetes management can actually work a step further. , and that's, that's how you prevent early complication. Shireen: You know what I love about what you're talking about, Dr. Gomber, is you, you bring this very interesting perspective to where you're talking about diabetes and type 1 in particular, and how it is, there is an access issue, but that access looks so different from a developing country to a developed country. And, and what's common here is that people with diabetes are being underserved. They're not getting access whichever way, whichever constraint we have on. They're not getting the care that they truly need and they deserve, and on one side, it is, it is motivated by money and greed, and it is so unfortunate that that exists. The United States with all of the resources that we have here in the United States there are still people that we hear about that are not getting insulin and not getting it in a timely manner, and they're having to rush into emergency rooms because things have progressed so far along and it's, it's completely unnecessary, right? Just starting this out, saying it is unnecessary that a person ends up in the emergency room because they didn't get their insulin in time, right? And I commend you for the work that you're doing to build advocacy around this because it's, it's unneeded right at the heart of it. The medicine exists. It's not that this is, you know, this is a, a pandemic and we don't know how to navigate it. There is medicine that exists for it. And it's just, it's incredibly unfortunate that people are not getting access to this in time. Having said that though, what is being done to increase access to care here in the United States, even globally, and for our listeners here, what can they do to increase awareness and access? Dr. Apoorva Gomber: Yeah, thank you for bringing that question. I think that's not - there's not an easy answer to it that, how can we improve the access. The only thing I can say about it is there are several layers to reaching access to insulin for all. And what we can do sitting at our home today, and as people living with chronic conditions is letting, letting the community, or letting us take holders like our policymakers know, and keep making a government accountable that we do need insulin. We need insulin for survival, and it's not just that insulin is the only solution. We need a bundled approach. We need test strips. We need syringes. We need an entire tool kit to start taking care of yourself for ourselves. So if even if you give us insulin free of cost, that would not help. You if, even if you'd like, just give us insulin, we need other things. How do, how would we inject insulin? If you just don't give us syringes to inject it with, how can a person living with diabetes who's on, in an insulin pump use insulin if he doesn't, he or she doesn't have an insulin pump available? So it's, it's a bundled approach we need to focus on. And the only way it starts is start from your own home from your own journey, expressing that, Hey, we need it, working with your doctors. Doctors can only help if we are all united, and we raised a community voice that, see we can do or lead a normal life only if we have proper access. That's why every small support group working in separate areas of the world have to collaborate, bring it on a government policy, a forum that this is what we need. And I think a lot of mobile movement is also happening with a lot of civil society, like organizations like T1 International working to bring the voices of people actually struggling with diabetes from lower resource settings and working towards bringing it on agendas, on global agendas. And so that's because diabetes exists everywhere and there are so many people dying because of lack of access to insulin, but also dying because of lack of awareness about diabetes. Many of these people are not even picked up. They just died because of probably any other disease, or diabetes related complication, and they never get diagnosed because of diabetes. So many children die just because they were never tested for their blood sugar. And they just were diagnosed as, as a patient of pneumonia. And they just lost their life because they were unaware that diabetes can exist in children. So when we're talking about advocacy, we also talk about awareness. We also talk about that we kind of like bundle. We bundle all of these factors and start from our own journey like as people. So there are so many people who are doing a lot of stuff, but what we can do as people living with our own chronic diseases is that advocate for yourself. Start advocating for yourself. It begins from home, and then we go a layered approach, where every voice counts and we bring it on a global platform. Shireen: Having said that, Dr. Gomber, we're toward the end of this episode, unfortunately. At this point, I'd love for our listeners to essentially learn how they can connect with you and learn more about your work. Dr. Apoorva Gomber: So, you, you can connect with me any time. Oh, I'm available on social media and I've helped so many people, and a lot of people have helped me. When I was transitioning from Delhi to Boston, I did not have insulin available, like after, because I did not have enough insurance. So, so many people helped me, just reached out on social media, Hey, I have extra vials of insulin I can send it, or I can mail it to your house. I got CGM sensors just through support of this community. And that's why this community is so empowering that whenever I feel demotivated, sometimes I feel, oh, no, I have to get back up because there's so many people who are there to help me, and I need to give back by helping those people who do not have access or do not have resources. So, I think social media is a really good tool and my journey started because I started sharing my stigma, like from my stigmatized me to my real me, I started venting out on social media. So I think you can reach out to me @t1d_fighter on Instagram and you can search me on Facebook as Apoorva Gomber. Anywhere. I’ll be more than happy to reply to any of your questions and reply to any of the struggles which you're going through. And also happy to hear your stories living with diabetes. Thank you. Shireen: Thank you so much for sharing. I was going to say this: all of the social media links will be linked in the show notes. So, you can find shortcuts there to find Dr. Gomber. With that, Dr. Gomber, thank you so very much for your time. It was an absolute pleasure having you on., For our listeners out there, please head over to our social media, and if you or a family member has been impacted by type 1 diabetes, we'd love to learn about your story. We'd love to learn about what that journey has been like for you head over to @Yumlish on Facebook, on Instagram. Find us there, and let us know what your journey has been. And with that. Thank you again, Dr. Gomber. Dr. Apoorva Gomber: Thank you so much, Shireen. Thank you for listening to the Yumlish Podcast. Make sure to follow us on social media @Yumlish_ on Instagram and Twitter and @Yumlish on Facebook and LinkedIn for tips about managing your diabetes or other chronic conditions. You can also visit our website Yumlish.Com for even more information, and to get involved with all of the exciting opportunities Yumlish has to offer. All of the links are in the show notes below, so please don't hesitate to check us out. If you liked this week's show, make sure to subscribe to the Yumlish podcast. Give us a like, comment, or a five-star review and share us with a friend. This is Shireen signing off. Thank you again. And we'll see you next time. Remember your health always comes first. Stay well!

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