Zoe Witt, Writer, Activist, Mutual Aid Diabetes

[00:00:00] Rob Howe: What's up, everybody? Welcome back to another episode of the very special Diabetics Doing Things zine interviews, which we are doing in conjunction with our correspondence. And I'm very excited to introduce you to Christine Fallabel, who is our correspondent for this episode interviewing Zoe Witt from Mutual Aid Diabetes. Christine's been on the podcast before and is one of my first people that I really got to know in the diabetes community that introduced me to things like new diabetes technology and getting involved with diabetes organizations. So Christine, thanks so much for joining us on this episode. Yeah, thanks for having me. I'm super excited about this interview and I think it's going to be great. It is. And I do want to say before we get into the content of this interview, I do want to issue a content warning. There is some talk early on, and this is a very vulnerable conversation with Zoe, but there's talk of self-harm and thoughts of suicide in the first third of this interview. So I just wanted to give that warning in case that is something that you would like to skip over or like to be aware of. Wanted to make that very clear from the jump. However, I do think that the overall message of this interview is extremely positive. And it really gives people with diabetes an opportunity to get involved with an organization that directly helps people who need it most. And I think something that really stood out to me was that most of the people that mutual aid diabetes interacts with need insulin or supplies within like 48 hours. So very critical periods within their life with diabetes. I think Zoe talks with so much passion that it makes you really want to jump in and see where you can help MAD, as they call them, and see what else that, because you really see diabetics giving back to other diabetics and people who are just volunteering so much more of their time and mental space is really incredible to listen to. And it's really inspiring to see like where you can fit in and maybe also contributes a bit. But yeah, I think when we think about impact and like people helping people, it's a small number of people. And they even share a story in this interview about someone who reached out to Mutual Aid Diabetes, thinking that they were a much larger organization than they are and how it's really a few people behind the scenes giving of themselves in unpaid positions to help people with diabetes. So really, really important work that they're doing. If you want to learn more about them as you're reading, Mutual Aid Diabetes is online. They're also on Instagram and on Twitter. So Zoe lists a few links throughout the episode that we also have in the show notes if you want to get involved there. And as part of the zine, the article has been written by Christine. So be sure to check that out on the Diabetics Doing Things zine. Until then, check out this interview with Zoe Witt. Hello and welcome back to Diabetics Doing Things. We are telling the amazing stories of people with diabetes from all over the world. And this interview is in part, part of our new zine collaboration within the community as part of the diabetics doing things, zine issue one, volume one. And we have our very special correspondent here with us as a co-host today, Christine Fallabel. Welcome to the show. You've been a previous guest and a community member and a friend of the pod for many years. So thank you so much for joining us today. Thanks so much, Rob, for having me. I'm so excited to be here and excited for our interview today. I think it's going to be great. I totally agree. As usual, this episode is produced by Eritrea Musakan, who is here on the pod as well. And our guest today is Zoe Witt. And Zoe lives with diabetes, but the purpose of today's interview is to talk about mutual aid diabetes and the impact that it has on the community and to also spread the word about the work that Mutual Aid Diabetes is doing, MAD. So if you hear us talking MAD, that's what we mean. Mutual Aid Diabetes is the acronym. Zoe, welcome to the show. Thank you so much for being here.

[00:03:49] Zoe Witt: Thank you so much. It's so good to be here. It's so good to meet all of you virtually at least. And I'm just really excited to talk about MAD today with all of you.

[00:04:04] Rob Howe: Likewise, let's get MAD. Let's, let's get mad today. And let's talk about mutual aid diabetes, but first, uh, where we always start on the podcast, uh, where we started with Christine, like five years ago on her episode, uh, where we start literally every, uh, every diabetes journey starts with diagnosis. So what, what can you tell us about your diagnosis story and how you came into the type 1 diabetes community?

[00:04:28] Zoe Witt: Yeah. Um, well, I would say that that's sort of two separate things because I think I entered the diabetes community much, much later in my life, very recently, really. But I was diagnosed at seven. It was a month before my eighth birthday. It was January 19th, 2003. And basically, my mom insisted on taking me to the ER because I'd been really lethargic, classic peeing drinking a lot of water um always tired and then I'm I'm a small person I'm like five one right now um so when I was that age I was also very small and I had lost like 10 pounds so my mom was like you're dying like what's going on and my dad was like oh she probably just has a cold it's fine and then you know over like a few days it got a lot worse and my mom was like no we're going. I grew up in rural Washington, in the middle of nowhere, like kind of in the foothills of the Cascade Mountains, still on the western half of the state. But we were basically a, you know, 45 minute hour drive from the nearest hospital. It's not a great hospital either. But they were good to me that evening. And yeah, basically just, you know, got blood drawn, came out they were like you're a diabetic um and at the time my biggest uh one of my biggest fears was was needles um so there was a certain point where they were like first teaching me how to do injections because I was just on the drip at first right while they're like rehydrating you and

[00:06:14] Rob Howe: everything and then shout out to that first insulin drip though because it just feels so good

[00:06:19] Zoe Witt: nothing like it nothing like it um and so uh so the person I don't know if it was a diabetes educator or a nurse or what someone came in and they were gonna you know teach me what to do for the first time and I was like I'm not taking shots there has to be another option and they were like well and this of course was at a time where like pumps were not common my family could not have afforded a pump anyway. I didn't, I probably wouldn't have even wanted a pump really. If they had explained it to me, I probably would have been pretty, pretty overwhelmed by it, but they were like, so if you don't do shots, like you'd have to stay like hooked up on this IV. You wouldn't want that, would you? And I was like, I think, yes, I would, I would like to just stay on this IV. So I like refuse to do shots for a hot minute until I had my first one. And then I was like, oh, this needle is very small. And it got a lot easier after that. And just in terms of the, the shot aspect of it on its own, but because I was still so hesitant with the shots, they were like, well, if you want to take less shots per day, we can put you on human insulin. and you know I'm sure they discussed it with my parents and I was probably just like yes whatever less shots is that was terrible though um I feel like I had so many near-death experiences in like the first six months that I was on human insulin and especially if I ever got you know like a stomach bug or something then it's like you you have to keep eating because you have to keep taking your MPH and it's just an absolute nightmare. Um, so yeah, that was my, my diagnosis story. I'm sure they, they thought I was a challenge. You do sound like kind of a precocious seven-year-old,

[00:08:21] Rob Howe: honestly, just like, uh, and, uh, you know, I think diabetes affects so many parts of your life, obviously, but even at the outset, just the differences in, you know, treatment for each of us from the outset is so strange, is so wild. It ranges, uh, so wildly Christine, you actually had a tweet earlier this week that was, uh, really resonated with me and kind of is apropos to this conversation about getting diagnosed in the early two thousands, late nineties, and sort of at this very strange juncture. And it really like the, the, at least the other three of us on this call were diagnosed relatively the same amount of time around the same time. Pump technology had not taken a great leap forward. Like it has more recently, uh, there were less options. There was no, you know, other inhalable insulin. It was really either, you know, Novolog or NovoRapid or, uh, human insulin, which, uh, as you and I discussed a couple of weeks ago, when we were preparing for this call, uh, I experienced a few years ago as there's not, not a great way for anybody to live with diabetes. I would, I would characterize, um, what is it about that time? Definitely agree. Yeah. And especially as we're going to talk a lot about certain people's outrage or thoughts about the cost of insulin, even though you can get things like human insulin from Walmart for relatively affordable cost, the disparate care and the variance in care from one to the other is so night and day. Anyway, what do you think about that time? It was such a strange era of diabetes technology in general. I don't know. What does that remind you of? Yeah. And, and it was such a strange time. And Zoe, I just love how your first reaction to getting diagnosed was like, oh, I'm not taking shots. There has to be an alternative because when I was diagnosed in 2000, I was like, well, this sucks. I guess I'm gonna have to take shots every day. And I just totally crumbled under the diagnosis, like, you know, super depressed, super sad, but like, this is what I have. And, you know, my friends and I would joke about the pig insulin. We would call it Hamilog and Porculin and, you know, just trying to joke to get through it. But it was such an interesting time because literally, you know, the insulin ran your life, right? You took a morning dose of, you know, NPH and R and had to eat 30 grams of carbs at 7 a.m. And then another 15 at 10 a.m. And another 30 at noon. And if you didn't, you would go shockingly low, you know, down to 20 or 30. So in the middle of like middle school, I'm eating my Ritz crackers, you know, to prevent a low. Also, you know, not wanting to look weird in front of my friends and so embarrassed of a friend's mom gives me a diet Coke at like the pool party. So I just think in that time, you know, such a vulnerable time for us. We were preteens or teenagers and didn't have our voices yet. at least in the advocacy space and yeah, pumps and CGMs and all of the devices now that make living with diabetes so much more seamless. And, you know, I could be at a restaurant dosing insulin from my cell phone and no one really knows, but it just wasn't like that back then. It was, you know, the alcohol swab on the vial and mixing cloudy and clear. And yeah, So it's very interesting time, but I think it did build a lot of grit, especially in this cohort, if you will, of diabetes advocates that we have now that are in our twenties and thirties. And we've just, we've gone through a lot. We've seen a lot of progression in the diabetes technology space. I think it's pretty incredible. I mean, I think about having to eat the same thing every day or at the same time. And, uh, only recently did I look back on my like really first 15 years with diabetes before I was fortunate enough and privileged enough to get on a hybrid closed loop therapy where I like in my brain, like had major anxiety about missing meals because I thought that I would immediately go lower, you know, the bottom would fall out of my, uh, and that was true for the most part.

[00:12:29] Zoe Witt: And then, and that's like, that's something that I just, anytime, regardless of what type of diabetes the person has. Anytime there's a discussion of someone rationing insulin and someone suggests human insulin, I'm like, that is just not a viable option, especially if this person, I don't know, has a job. I mean, like you have to have such a regimented schedule. It's, it's, it's basically impossible in, in reality to do what you need to do. And even then it's just so erratic the way your body processes it. And especially if you've been on modern, you know, on, on the, um, the analogs and then you switch back to it. Terrifying, absolutely terrifying. And we had people, um, that contacted mad, um, through, uh, we've really only been taking requests for the last year, but we've had people that have reached out during various events where, um, like natural disasters and things where the red cross only has human insulin. And they're like, I don't want to take this. And I'm like, I don't blame you. I would probably also just like go like ration what I had and sort of go without rather than trying to in the middle of a hurricane or something, figure out how to dose human insulin, which is completely different. It's just like the way people suggest that infuriates me. Well, and when people are faced with a natural

[00:13:51] Rob Howe: disaster, do you think they have access to reliable carbohydrates all the time? It's like, Like that's the last thing. Yeah. Um, and, and if you're on an insulin pump, like I would imagine some people have tried to put human insulin in insulin pumps and that just won't work. And remembering what your doses were 20 years ago and trying to adapt, it's, it's just a nightmare. I'm glad we're, I'm glad we're talking about this because we rarely talk about using human insulin on the podcast, not just for the fact that most people don't use it. Thankfully, you know, at least rather, I want to characterize that with most people we've had on the podcast. I don't, I don't have the data in terms of like the number of people who actually use it compared to the, the others, but I, I was on a CGM. I did it four years ago this year, a month on human insulin, just to try to create awareness about what it's actually like to go from one to the other. And it was the most exhausting month of my life. And I had a CGM on the whole time, like cheat that's cheating. And so, and like, you know, my daily life, it's cheating. And so, And, and, you know, like they often, often people with CGMs are not the ones that have to go on the human insulin. It's often.

[00:14:55] Zoe Witt: Absolutely. If you are struggling to afford insulin to the point where you're buying like Walmart insulin, you absolutely don't have a CGM. You might not even have like a reliable glucometer or test strips.

[00:15:08] Rob Howe: And yeah, if you're, if you can only test once a day, let's just call that the, the, the, and obviously that is a rationing amount of, of rationing test strips at that point. but if you only have one, like what time of day would you even consider the right time of day to use that strip? I couldn't tell you. Um, and so, yeah, I, I think that that is just such a short sighted and like very, like no one has done any research into like what it actually takes. I found some really useful blogs that were thousands of words long of how to just do the math necessary to take your existing bolus or existing, uh, you know, ratios on the modern insulins to transfer into the human insulin. And it was very difficult. And so there's so many

[00:15:52] Zoe Witt: barriers. Exactly. And that's when you were doing this as like a research project, whenever someone is forced to do this or forced to consider using human insulin, they're in a state of mind where their life is at risk. So you are, you can't think you just can't, it's a crisis situation and you don't have that sort of like higher reasoning ability, even to read the fine print on, you know, instructions or on patient assistance programs or whatever it may be, you are, you are aware that you could die without this and you don't know how you're going to get it. And so there's just no hope that someone could actually do the, you know, mental gymnastics that would be needed to convert themselves from analog insulin to human insulin while they're rationing insulin and probably also suffering in a multitude of other ways. It just underscores how dismissive

[00:16:53] Rob Howe: some people are like, Oh, it doesn't matter if your quality of life tanks, just take this because it's cheap. Um, I just think that's so rude and such a slap in the face to people who have insulin dependent diabetes. I mean, you wouldn't say that to people with other disease states, take this insulin or take this medication that's 70 years old. It's fine. Um, and so I just think it's, it's really, um, disturbing that people just think that, oh, well, they'll get used to it. Um, I want to, I want to transition like this because this conversation into mutual aid diabetes and the, and the sort of origin story of that. But before I do what we're talking about right now. We, we at diabetics doing things this year, we did a in depth, so I sort of tried to apply my skills that from my professional life through the lens of diabetes, almost 80% of the internet searches around diabetes are around stigma, what we would consider stigma related searches. Um, and what that tells me is general consumer knowledge. the average person searching the internet for diabetes, um, has no idea what they're looking for and has no context as to what it means to live as an insulin dependent person with diabetes or insulin dependent person. And we have to do a ton of heavy lifting. And I know, uh, many of us like have been in, uh, viral threads on Twitter, actively fighting with people just to try to, just to try to let them walk a mile in our shoes of what it's like. Um, and obviously find that very, very difficult. And, you know, that type of, uh, you know, advocacy is just part of living with diabetes and part of being a disabled person that the disability is not visible at, at eye level. So, um, yeah, I want to dig in now though, let's talk about where mutual aid diabetes came from and, and you and the group of folks who, uh, you know, brought this to life. Like you mentioned that you've really only been taking requests for a year. I feel like I first saw and learned about mutual aid diabetes maybe at the end of 2020, uh, or sometime in the, in the early pandemic era, as I'll classify as I'll characterize it. Um, so tell us about the early days. How did mutual aid

[00:19:05] Zoe Witt: diabetes come to be? Yeah. Um, should I start with that or should I start with sort of how I got involved with advocacy? Because I also got involved with mutual aid diabetes in the like fall winter of 2020 when they started posting about it. But I think it might be worthwhile to share kind of how I got here since most of my life, I was absolutely not involved with my diabetes in like any sort of public capacity. I would love for you to start there. Let's bring us in. Yeah. So, so I, so like I said, I grew up in rural Washington. Family was kind of lower middle class, but obviously cost of living wasn't, you know, like it, I live in Seattle now in the city. So it was cheaper to live out in the middle of nowhere. But, you know, my parents didn't have insurance. I was on like, whatever sort of like state plan was offered for children at the time. And so my insulin, you know, and my test strips were, were always covered. Although my mom had to, you know, fight with everyone a lot to make sure that actually happened as we all do. But it wasn't, you know, I, I had been told like my whole life, especially by organizations like JDRF, that diabetes won't stop you, which newsflash is a lie, a total lie. It absolutely will. But I feel like all that messaging I received from like the diabetes organizations as a kid, and then also that me and my parents received from like the doctors was like, oh, it's a disability. So you know, you can get a 504 plan, but you're not disabled. I don't want you to think you're disabled. Like God forbid, that would be the worst thing in the world. So basically, it's like, oh, diabetes isn't going to stop me. This mindset turned into like, well, I should be exactly like everyone else then. But you can't do that. It's literally impossible. And that basically leads to, you know, I live for most of my life in burnout. And I also had no access to technology like CGM or pumps. I got on my first CGM in, I think, 2019 and my first pump in 2020. And another thing just to do with disability on that note, I've had chronic pain my whole life that was always ignored by doctors. and sort of like, you know, the typical chronic illness thing of like, well, your tests are all perfect. So it was something too, that I just sort of, you know, and we know that when people have chronic pain, they perceive pain completely differently than someone who doesn't always have pain happening in the background. And so it was something that I just was sort of living with, but not acknowledging at all. Um, and come to find out later, one of the, you know, biggest challenges for my diabetes is my insulin resistance that comes with when my pain is worse. Um, but of course, without a CGM and without an insulin pump, I didn't have any of this knowledge. It was just impossible to do because basically I have to change my basal rates all the time throughout the day. And it's just, it's kind of a mess. And I, you know, my mom, she used to try so hard when I was young. And she was like, I remember one time, you know, we counted every carb, we did everything completely right. And your A1C was still over eight. And it was just like, so demoralizing to her. And then once on a CGM and a pump, and it like, I luckily was able to drop it all the way down to like, I think my lowest was, you know, low six, maybe high five. And it was just, I needed the technology because it was simply impossible to do on, on MDI. But the only reason I wanted to, wanted to get a pump was basically in, well, it's almost like I should back up a little farther. I was rationing insulin in 2018 after leaving a job that I hated, but it provided me with insurance. And I basically knew that the work environment had gotten so toxic that it was basically putting me at risk for like, my mental health was in the gutter, it was putting me at risk for suicide. So I was like, okay, if I stay here, I'm worried I'm maybe going to kill myself. And if I leave, I don't know how I'm going to get insurance. And then I might die from rationing insulin. But I decided to quit the job and I immediately got a job at a restaurant. I was like spiraling, but I was like, this is something I can do. I can be a host at a restaurant. I can talk to people. I had a lot of customer service experience, lots of reception experience. And then it, it basically got to a point where because my, you know, rent in Seattle was so high loans, student loans, debt, credit cards, all, you know, everything that I just, I couldn't, I didn't qualify for Medicaid. I made too much for Washington state Medicaid because of course, when they set like those guidelines, they're not considering people that live in a city where the cost of living is way higher than if you live in the middle of nowhere. And so I, yeah, it basically, I crunched the numbers. And it was like, it's actually because my, I'm relatively sensitive to insulin, I crunched the numbers. And I was like, it's actually going to be cheaper for me to not be insured and pay out of pocket prices. But of course, you know, it's just such a high amount of money that then if anything happens to you, or if your tips aren't as good that week, or you get sick, and then you have to miss a shift or go home from a shift early. I mean, then you're screwed. And so that was like about nine months of rationing insulin. I never went entirely without any insulin, but I would frequently end up with like just NovoLog. So I would have to dose myself every like two to three hours and set alarms and wake myself up all through the night. Or when I ran out of Novolog, and then it's like, you just kind of run high because you're giving yourself extra of your long acting, but then you can go low. So then you start to have a bunch of lows, even though you're mostly running high. And of course, that drastic change from high to low is what causes so much cellular damage, especially like I have retinopathy now after that. But basically, I finally get a raise. Okay, So I'm making a little bit, just a little bit more money and I can finally afford to buy an insurance plan. So then I go to my doctor and luckily Virginia Mason had been filling my prescriptions, even though I hadn't been in for an appointment and was uninsured. But they made sure my insulin prescriptions were always active because, of course, the prescription barrier is a huge problem. And part of the reason people end up rationing insulin may not even be money. It might just be that they, you know, moved and can't obtain a, you know, a prescription from a new doctor or what have you. So luckily that was not an issue for me. I'm pretty sure I maybe would have ended up in the hospital or potentially dead if they hadn't been just so good about always making sure my prescriptions were current for insulin and stuff. But basically I finally go in and I'm like, oh, I'm a mess. I'm like, I haven't, I I've never had great control. I've always felt bad about this. and now I've been rationing insulin. So I was in such a vulnerable place that I was like, man, they want me to see, they're like, okay, we have this new person that we think you'll like. And I'm like, okay, I'll make an appointment. And I'm like, this person sucks. Cause I've had some terrible endos, especially where I lived and just insurance restrictions, just awful people just shouldn't even be doctors of any kind, just truly horrible people. Um, and so I was, I was very apprehensive. But then I met Gregor and Gregor's the best. I love Gregor. Gregor is a PharmD and he is my diabetes specialist. And first of all, just so good at looking at your Dexcom graphs. And then he's just like, okay, we're going to adjust this. We're going to do this. And then it's like, oh, my blood sugar works again. He's a wizard. So anyway, at the time though I just meet him and I'm like I don't even have I'm like I don't even have uh like test strips that work with this meter I have like I have nothing I'm you know and he's like okay here's what we're gonna do I don't want you to stress out um and he basically offered to put on a freestyle on me but one that like they just record it's not like I see it because I explained that like I hate looking at a number and it being a bad number. And it really makes me just never want to take a test again. And also had, had undiagnosed OCD for most of my life too. So that again, it's just like the, the puzzle keeps coming together, right? So wait, so I have a, I have

[00:28:38] Rob Howe: a question. So he gave you a professional, what they call a professional CGM. Is that what he put

[00:28:44] Zoe Witt: on your arm or was it? I don't know what it was called, but it was like one where I couldn't scan it and I wore it for a week and then they downloaded all of the information. So I assume, yeah, that must be like just a doctor. Yeah. I didn't know if it had a specific name, but yeah. So he put that on and I was, and he's like, honestly, try and make notes about what you're doing, but you know, whatever, just come back in a week and we'll look at it. And he was so nice. It was so respectful. And I just never been treated like that by, by anyone really in the, in the medical field. So we did that. And then he came back and he was like, okay, you know, this is funny. Like, you know, what's your carb ratios. And I was like, okay, so here's, here's the thing. I don't actually count carbs. I like only dose on vibes. And he was like, well, honestly, looking at your like graphs, you're kind of doing it right. You just need to bump whatever you're guessing your carbs are. You do just need to bump up the ratio a little bit, but he's like, either you're always eating the same amount of carbs, which I'm not doing intentionally. Um, but no matter what he was just like, whereas I feel like most doctors would have been like, Oh my God, you're terrible. Like you can't like, you have to count carbs and people, I mean, doctors have said that to me before, but he instead was like, well, Hey, let's look at what you're actually good at. And it was like the first time that anyone had made me feel proud of doing anything like with my diabetes before. And I was like, Oh man, maybe I want this freestyle thing. And then once I wore it, it was like, Oh, well, no wonder I couldn't manage my diabetes before. It's like, you have like what, three to five, you know, maybe tests a day. That's three to five data points instead of a whole line. I mean, it's just, it's ridiculous. And then I wanted to get on a pump. But that didn't happen until I was in the middle of the pandemic. It was 2020. And I had had COVID in February of 2020, unconfirmed because no one could get a test at that time. But I was working in a busy restaurant. I was like face to face with like, it was in Pike Place Market. I was face to face with at least, I don't know, 600 people a night. So yeah.

[00:31:00] Rob Howe: And like tourists too, like a very popular tourist location, like people traveling,

[00:31:03] Zoe Witt: people traveling everywhere. And Seattle was like the epicenter in the United States. So yes. Anyway, I ended up getting long COVID, which was terrible. And it wasn't until I got long COVID and my chronic pain got so much worse. But then I was like, I started, you know, I'm online. And And then I see like kind of like the online disability community that was talking about long COVID. And then it all clicked into place. And I was like, oh, my God. First of all, I've had chronic pain like my whole life, but I've been disabled since I was seven when I got diagnosed with diabetes. And I just didn't even know it. I didn't know it.

[00:31:44] Rob Howe: And at that point, like 17 years had gone by.

[00:31:48] Zoe Witt: Exactly. Exactly. And it was, it was just so eyeopening, mind blowing, world changing. And then, so then once I kind of came to terms with that, and then once I learned what ableism was, which you can't identify these things that happen to us as diabetics as ableism, unless you admit you're disabled. um but then you know once I learned about that I was like wow my ideas about pumps and like not wanting anyone to see that and wanting to hide my diabetes it's kind of messed up I should probably try a pump and luckily because I was unemployed Washington State had great unemployment benefits um for most people if you um not everyone qualifies obviously for a variety of reasons But luckily I did. And so I was able to just stay home because I was high risk and I worked in a restaurant prior and I was on Medicaid. And so for the first time, it was like, oh, Medicaid can cover a Dexcom and a pump and your insulin and it's going to be entirely free. And that was the first time that I actually had access to that technology. And I'm still on Medicaid now and very anxious about what happens when I lose Medicaid and have to think about, do I choose between a Dexcom and an Omnipod? Because I probably won't be able to keep both, but it's just kind of depends. And so it's hard to say, but yeah. So once I got involved in that was sort of my gateway to the online community, I started looking up diabetes online and that's when I kind of came across MAD and also for the first time saw people talk about rationing insulin, even though I had done that for nine months, but it was such an isolating experience because no one around me, you know, they would have just said like, or assume like, oh, it sounds like, you know, she's a bad diabetic. And so I just didn't have anyone to really share that with while it was happening. But then later when I found all these people online, it was like, oh my God. But, you know, if you're not looking for it, you're not going to find it. And when you're in that mindset that I was for so many years, where you're just trying to hide your diabetes and you're like, Oh, I'm not disabled. This doesn't affect me in any way. I'm just like everybody else. You're not going to go and

[00:34:13] Rob Howe: find that community. It's interesting because you say like JDRF said, you can do anything. And I think that toxic positivity was well-intentioned at the time, but I think in a way, it just precluded all of us from really becoming empowered by accepting the word disability and disabled, and then finding the community online and helping ourselves. Because like you, I walked through my life for the first 15 years thinking I didn't have a disability. I never had a 504 plan. I remember walking to the nurse's office. I didn't actually either. Me neither. Did you have one, Eritrea? Okay, you had one. Good for you. I believe, listen, my, I believe in the diabetes card. If I can just slam it on the, yeah, sorry. That's always 100%. Yeah. As you should, but we didn't know back then. We, we just didn't know. I remember like sauntering to the nurse's office when I was like 40 in the middle of gym class. And I was like, can I bring a friend? And they're like, no, we got to go alone. It's like, that just wouldn't happen today. But no one told me I had a disability. And so I think Like you reclaiming the word and really realizing that, yeah, I have a disability and it's not a four letter word and finding the online community, I think really helped you step into your power. So I think that's, that's really incredible. Yeah. Something, something too, that really resonated with me really about the same time that you were, you know, after you were rushing insulin, you got on Medicaid and you found the community. I was also kind of going through this phase of like, you know, discovering the, I think you said it really well, Christine, like well-intentioned ableism within that wording. And then realizing that I'm like the poster child for that. And like having to like undo, like, oh my God, like how some of the things that I have said and done and the ways that I've lived my life just alienated people that I have tremendous empathy for, uh, who truly are like, so like coming out and like identifying as disabled after that point is like, yes, it's an and proposition. It's like, yes, you can do all of these things and be disabled and also respect people and give them dignity and hear them and hold space for them. Uh, because we're all way closer to rationing insulin or going on Medicaid or declaring bankruptcy than we think we are. Uh, and that's, you know, just a very,

[00:36:39] Zoe Witt: um yeah I mean I have I have to say that I feel like um I mean obviously I have no connection to um to JDRF as as an organization um but to me it was just like you're in such a vulnerable spot when you're just diagnosed and like they send those you know the I got one of the bears like the Rufus is that the bear's name where like you know they um you give them shots and stuff and I remember as a kid thinking like oh my gosh this is so cool this is like I can't believe this even exists and you're like you're so young and you're so vulnerable and you're just like oh this is great and then it's like you dig into it a little more and you know I've been promised a cure since I was like, you know, diagnosed five years away, five more years, five more years. I don't even care about that at this point. I'm not concerned with that aspect of it, but it is just like J.D. obviously brings in tons of money. And from my perspective, they have not really delivered me anything. And it was also a thing where I guess we do have to get into mad a little bit, but one more note on just sort of like when I was rationing, everyone would say like, well, what about the nonprofits? Like what about the diabetes organizations? They probably give you money for insulin, right? You can probably get a grant for insulin. And then it's like, I looked it up and it was like, oh no, actually they just take insulin money, but they don't do anything to deal with the people rationing insulin or, you know, provide any sort of funding or anything like that, like direct, you know, direct funding there. It just doesn't exist. Um, and people would say that all the time, like even, you know, about like type 1 international and it's like, no, they also are not giving any diabetics money to pay for insulin. It just doesn't exist except for, you know, sort of groups, community run groups like mad. I think you, you set it up

[00:38:47] Rob Howe: for a great transition because it really is a white space. And I think you're right. Like we've all been hit with cure mongering. Uh, and while I am all for a cure and will welcome it when it shows up on my door one day, uh, and I will gladly go to a meetup of people who used to have diabetes. Um, you know, I'm also not holding my breath. And I think again, like the people who need the most help, they don't need it tomorrow. They need it today. And so that white space for an, an organization. And I think we're going to talk about like, uh, and you've mentioned it already, like the challenges with being like a 501c3 legally giving insulin and medication to people, not just insulin, but medication in general, there's a very clear, like legal line that they would have to cross. And I know that there are many like outreach managers associated with, you know, JDRF and ADA and others who have sort of been that sort of insulin pantry for people in the past and just personally given of their own heart to do that, but not set up, you know, from an organization standpoint. So let's talk about MAD because that is what you guys do. You guys take money and insulin and diabetes supplies and give it to people who need it most immediately.

[00:39:57] Zoe Witt: Absolutely. Yeah. So I first got involved with MAD in the fall, winter of 2020. They had an informational meeting. And at the time, it was actually being discussed that it would potentially be a 501c3. And there were sort of thoughts about, you know, are we going to be a 501c3 so that we can just take in a bunch of money and just give out grants? Or are we going to stay informal so that we can sort of assist with more of this gray area, like supply sharing stuff? and it was it there were a lot of cooks in the kitchen at the beginning there were a lot of people but then sort of as as time went on and as we were planning and building it out to we ended up launching the sort of the request aid form that we have in in March of 2021 but in that process You know, there were a lot of people that basically the sort of originators of the group were a lot of people that had been on the insulin for all hashtag on Twitter, which is where people were sort of informally organizing, supply sharing and things like that. But then the pandemic happened and so many people lost their employer-based health insurance. So there were just way more requests and people were getting overwhelmed with DMs and it was like no individual should have to be freaking out at 3 a.m. because someone, you know, three states away DM them on Twitter that they're, you know, rationing insulin and need Humalog in the next two hours or, you know, whatever. And so they wanted to have a group formed that could sort of receive these requests in a somewhat more organized fashion. And so, but a lot of the founders, for one reason or another, whether it was like their job or just time commitments or life or whatever, they weren't actually going to necessarily continue like working on the group on a day-to-day basis. They kind of just wanted to like set it up. And so then there were like more people brought on like myself to sort of continue it. Allie, autoimmune Allie, is I think the last of the original founders. And she is basically in charge of sort of assisting with and overseeing all of our intake team. So we have sort of different segments of MAD for different things. It is obviously about insulin, but we also wanted to make sure that it was about more than insulin and that it was a group for all diabetics and not just type 1s. Um, and so we, uh, we're trying to be really like intentional about all of our sort of copy and language around that. Um, and we, um, we, I'm just totally losing my train of thought. And you told me to just tell you if I'm, if I'm losing it, I need to go back and restart unless someone has something else they want to say before I.

[00:43:19] Rob Howe: So would you consider yourself one of the original founders or? No, no.

[00:43:24] Zoe Witt: I wouldn't say I'm a founder. I just was brought in sort of right after. But now it's basically it's been challenging because once everyone now I'm finding my way back to my train of thought. Everyone basically went back to work after, you know, people people had so much time at the beginning when we started things, like especially when the planning stages were still in effect before we even launched. But then March 2021, a lot of people started to go back to work. Of course, a lot of people were still unemployed. And that is a lot of the folks that we were getting requests from. But the people that were set up to be helping us had less and less time. And also a lot of the people that are involved in MAD are just sort of, I mean, we're all kind of broke and working and living paycheck to paycheck. And it's not like we have a ton of time or a ton of resources. Um, so it's, it's been a struggle because for a period of time, it was sort of just, um, me, Allie, and then Emily Miller, who's sort of more, um, was in charge of sustainability. Um, but now is, is taking sort of a backseat because they are in school, you know, internship job. I mean, we all have so much, um, so much going on, but basically the way we have it set up now. We're kind of just have enough people to kind of make it work, but we need more. So we have an intake team, which, um, Allie is in charge of, and that's sort of just the initial, um, you know, the, the people that talk to you once you submit a request aid form. So if you need help with something, any number of things, whether it's you need insulin, you need help getting a prescription for insulin, you need any type of diabetes medication, supplies, you know, you're interested in seeing if you qualify for a patient assistance program, but you're totally overwhelmed by the website, you know, whatever it may be, you submit a request aid form to us. And then within usually about 24 hours, someone will contact you via text or email. And then, you know, basically at that point, they just sort of start a conversation about how we can best like meet their needs. So because it's mutual aid, it's there's no means testing, right? Like this is not something where we're like, okay, you have to send us five tax returns and your last pay stub. There's no, you know, requirements. Anyone that asks for help will be helped. So similarly, there's not like a strict like question and answer that everyone has, you know, has to go through. It's sort of just like the intake specialist who's a volunteer that has diabetes that is, you know, had to procure various supplies and medication for themselves over the years and sort of has, has some gift or talent for, for navigating those kinds of, of systems will basically just say like,

[00:46:26] Rob Howe: okay, what can we, what can we do for you? So I have two questions. So does MAD give out cash, cash assistance to, in addition to supplies. Yes. Yes. And then is there a physical, like, I know there's no office. I don't think, is it more just a network of people who are like, Hey, this person requested help in Texas. Does anybody have Nova log or is there one person who has all

[00:46:50] Zoe Witt: of the supplies? So, so all great questions. Um, so depending on, um, what a person is in need of what the timeline is and then sort of what resources we have available that determines, you know, if someone is offered like cash or if someone, you know, we basically the intake specialist will go through sort of all the ways we could possibly think of to get the price down, first of all. And then, you know, we might give out some funding to certain people. If there is a time constraint where for whatever reason, and again, this is like, it's kind of every person is so unique and we're in all different states. This is mainly organized through a Discord server. So we're all over the place and it's completely online. There's no office. And it's all very decentralized.

[00:47:47] Rob Howe: I was just going to say, if this wasn't like such a critical need, it would sound like you're pitching me a cryptocurrency. Decentralized, we're everywhere. We're on Discord.

[00:47:57] Zoe Witt: Exactly. Yeah, yeah, yeah. Well, I don't know that cryptocurrency aligns with Matt's politics, to be honest, but I see the comparison you draw there. We've got some, yeah, it's an interesting error we have about the group, I suppose. But basically, so we do connect people with supplies. We don't necessarily take in direct donations or send out direct donations. So MAD as an organization is not actively distributing medication or insulin at this time. However, if basically the intake specialist has gone through all the options and it just seems like based on the circumstances, it would be better or easier to just get the person insulin. Then if they want, we will basically refer them to someone in their area or someone in a few states away that can ship or something depending on the situation. And then we will kind of make that happen. Um, but we're not at this point in time actively like accepting insulin and sending it out. Um, there is one 501 C3 in Arizona called the Embrace Foundation, which is doing that. Um, and I'm not totally sure how they're doing that. I know that Washington state has some specific charitable pharmacy laws that, you know, way back when, when we were thinking about, would we be a 501c3 or not? The idea of a charitable pharmacy was floated. Um, but yeah, the Embrace Foundation is, um, is doing exactly that. They, um, they take in insulin donations and test trip donations and things like that and send it out. And from my understanding, the way they're operating right now, like no one's paid all the money that gets donated is basically just being used for shipping. And I think like the warehouse that they store the stuff in. But yeah, so that's another resource. When MAD talked to attorneys like a year ago, they all sort of told us that we definitely could not legally redistribute prescription supplies. However, I don't know that I've ever heard of anyone getting in legal trouble for it. We were concerned though, that if it were a somewhat organized group, that someone might take notice. But to our knowledge, no one has ever gotten in legal trouble for like sharing or shipping insulin. So that does happen sometimes. Actually, let me see if I can bring up our sort of statistics on, on our intake requests and sort of where that goes.

[00:50:56] Rob Howe: While you're doing that, because I think that's a really important part of this as well that I'd like to explore, because obviously we see the high level statistics of the need states in this country. We're living in a hellscape of a economic and health, public health type situation. That's so unprecedented. The memes tell us, I'm just hoping for some precedented times. And at the same time, you're talking about organizing and running an organization and the challenges and the advantages by being not affiliated and not legally an entity that is a not-for-profit or a legal entity like an organization, and rather just a connected network of individuals willing to help each other. And I think that that, you know, my question was like, do you feel that that makes you stronger? And I guess like after you explained it, that question really has been answered is that, you know, by not existing as a traditional nonprofit or a traditional organization, you guys are able to more quickly scale and more quickly get people the help that they need, you know, without running into those challenges that, you know, other nonprofits or, you know, state laws, different governance would potentially prohibit you guys from the mission.

[00:52:15] Zoe Witt: Absolutely. And I think that it's a weird space to exist in because we do get, you know, sort of some people that are like, oh, this seems a little weird. Like, I don't know how to feel about it. But sort of at the end of the day, not being affiliated with any of these organizations is exactly like you're saying, what allows us to do these things in the way that we can. And, you know, MAD cannot be bought by anyone. We don't take any, you know, all our money is no strings attached money. We're not partnering with any corporations. You know, there's never going to be any sort of like pharma or biotech sponsorships involved with mad or anything of that nature. And that means that we don't have to answer to anyone. The community can truly just decide what's best for itself without having to think about these sort of outside stakeholders and where the money is coming from. And I mean, obvious, oh, go on. No,

[00:53:20] Rob Howe: you can. I was just going to say, it's such an interesting kind of corner to be in, right? Like you have to like walk this tight rope so you don't get in trouble for helping people when there's such a need yet we're all here living with a disability and incurable chronic illness, and there's no universal healthcare. And so it's like, no one has to answer to that. But if you did get in trouble for, you know, providing someone with Humalog, we would have to answer to it. Um, and many of us in the diabetes online community have shared insulin with friends or gotten insulin from friends, um, when we've been in a hard place. And it's just so interesting in my mind that we would have to defend those actions, but But yet we're all living in this place.

[00:54:01] Zoe Witt: Yeah, it's, I mean, it's my opinion. And I would say the opinion of Mads that anytime a diabetic is forced to ration, use less of any of their insulin medication supplies, even, you know, healthcare, like accessing healthcare, that is an act of violence that is being committed against them by the state, by the government. it. And so it's kind of like, fuck your laws. I don't care. We're going to help people no matter what. And if you want to try and take us down for that, you're probably going to have a terrible PR crisis on your hand, first of all, because it's going to look just God awful. If you're really going after a group of relatively like low income, young, a lot of us are young, like diabetics. I I mean, it would just be, I don't think it would be, I think it would do more to benefit our cause, honestly. But we, of course, don't actually want that to happen. But yeah, it's just, it's something that I have no qualms with.

[00:55:10] Rob Howe: Well, I think what's also challenging about it, right, is that, you know, maintaining your independence and fighting to maintain your independence from any sort of stakeholders that would take you away from the mission means that you have to operate without the benefits of some of that operating capital and without like the resources that, uh, you know, making those concessions gives you. So it's sort of damn, if you do damn, if you don't like a doom loop of like, Hey, in order to help people, we have to turn down this money, which means that we may not be able to help as many people right away, which means that we've got to like continually advocate for more people to get in so that we can help more people. And, and that's actually a good point that you

[00:55:49] Zoe Witt: bring up because if we're talking about the concept of mutual aid, that's exactly what for it to be successful, what has to be happening. You have to constantly be growing your group and growing your community. Because like mutual aid is a way for a community to collectively care for those that are most marginalized, those that are most marginalized, most vulnerable to harm. And it's basically just like an anti-capitalist response to artificial scarcity, right? We know that the United States could supply the world with free insulin if they wanted. We've seen how much they spend on their military defense budgets. I mean, this is not like news to anyone. It is a choice that they make. And so mutual aid seeks to work outside of all those systems and those systems of hierarchy that keep people marginalized. And, you know, it's just, yeah, it's, it's, I mean, a lot of people think, I think everyone got introduced to mutual aid over the course of the pandemic because it became such a huge thing on social media and obviously because people had to survive. And a lot of people talk about mutual aid, like, well, it would be great to just like not exist, to like not have to exist. But to me, the other great thing about MAD and how we're just, you know, an organization that can decide to do whatever we want. Insulin for all to me is step one. That's the beginning, not the end. And so even if we get insulin for all, even if we got health care for all, we still have diabetics that come to us because they can't pay their rent, which at this juncture we can't really help with. But there are so many other things that we could be doing. I mean, even in like the sense of like how diabetics, their access to like medication and such in prisons, also abolishing prisons. But you know what I mean? Like, to me, it's mad. I think there's so much potential. And as much as someone could say, like, well, it would be nice if we didn't have to exist. To me, that would be if we lived in like a perfect utopia. And I don't think that's ever going to happen. I think it's far more likely that the United States is going to completely backslide into fascism within the next five to 10 years, if I'm being totally honest. And I think that if that does happen, if we do have like a far right government that that takes power, things like MAD are going to save lives. these like networks that we're building right now. And especially if we can connect with other mutual aid networks, help other, you know, chronic illnesses, disabilities, what have you, build systems like this, then we're going to all fare a lot better as a collective than if we

[00:58:42] Rob Howe: didn't have these things. I think too, yeah. It speaks to a greater sense of like community and solidarity as well. I mean, you see things like terrible, terrible things happening in the world all the time. Looking at Ukraine is the most pertinent example to this conversation right now. Community organizing from people who don't have any connection at all to Ukraine, and even sympathy for people in Russia who are dealing with terrible economic sanctions and being able to look at people on both sides of a conflict and say, I don't care what reason you're in this position, we're here to help you. And this community organizing, I think is really important. And then, you know, I want to clarify something that you said. I don't think that we have to descend into a fascist state for you guys to really help people. You guys are actively helping people today. And so. Oh, absolutely.

[00:59:33] Zoe Witt: Absolutely. No. And I don't that that was not the intent of that. I just mean, should that happen, mutual aid networks that we build today will, you know, help care for the people in the event that that occurs. But but yeah, we are definitely doing a lot right now. And it's kind of wild how much we've been able to do with so few people.

[00:59:56] Rob Howe: Exactly. I agree. Like, even if we had universal healthcare and everyone had insulin, I mean, when I, every time I get a new insulin pump, the instructions are like a PhD dissertation. And, you know, I have my master's degree in science and I don't know what half these words mean. So I think just having a community of people that you can outsource things to, and everyone is bringing different expertise to the table, whether or not it's tied to money or medications or insulin, just having a support network there, like applying for medication or rent.

[01:00:29] Zoe Witt: And so that is what like our sustainability team, which is sort of a newer part of MAD, it's always been in the works, but now we're, again, we've finally sort of got a few volunteers there and that's basically what they do. So they help people investigate insurance plans, gather paperwork to apply for patient assistance programs if they want to do that, or if that's something that we think they might be eligible for, even though most people aren't eligible for them. And then my dream, if we had enough people would be to do like some sort of peer support program where it's like, take a mad volunteer to the doctor with you. So if you have a shitty doctor, or you're like, I really want to see GM, but this guy has given me a hard time. Then you can have someone that goes with you and can help you advocate for yourself and sort of support each other in that way. I mean, I honestly have 20 million good ideas like that, but we just need more people. I mean, right now we probably have like seven people, five, seven. I mean, it's sort of, it changes, you know, but it's, um, it's not enough. And yeah. And everyone is

[01:01:46] Rob Howe: working on the side or in school and volunteers and really giving of themselves and like their, and their time when they could be doing literally anything else, right. To, to help people. And I want to go back to one thing really quickly that you said that I think ties up this portion of the conversation really neatly, which is insulin for all is just the start because you shared your personal story of living with diabetes and the, your health outcomes. So thank you for, for being vulnerable enough to do that. But insulin access didn't necessarily give you the, the, the A1C outcome you were looking for. It took additional access and additional care and additional education to get on the technology that allows you now to have better outcomes, which affect every other portion of your life, which affect every other chronic illness that you live with to just get you back to even some sense of normalcy that an able-bodied person

[01:02:36] Zoe Witt: exists with by luck of the draw. Yeah. Yeah. It's, it's not just about insulin. I mean, insulin is obviously the most important, but once you sort of like, you know, move just right past that, we even have people that are like type ones that are trying to get things like Ozempic, which because it's thought of as a type 2 medication, even though it's not necessarily an off label use for, yeah. So anytime stuff like that happens, then, you know, there's another barrier or what happens if you can only use one certain brand of insulin, but your formulary doesn't, um, doesn't cover that. I mean, even if we had some sort of healthcare for all, even if that happened, which I don't see that happening anytime soon. Even if it did, we have no idea what that would actually look like. Because to me, the answer would be no prescription barrier. And like, literally, you can either order it online or walk into any pharmacy and just get whatever you want. Like, you want to do this pump, let's get you some pump sites and supplies. You want a Dexcom, have a Dexcom. Free. Zero dollars. And I just think that that, you know, it's the threshold for me is so high for like what it would look like to actually have MAD not exist. And then that, again, doesn't even get into all the other facets of life that, you know, we care about when we're talking about our community. So it's the beginning. It's the beginning, not the end. And And that's kind of one of my big gripes with like Type 1 International's messaging, because I'm sure everyone assumes that I am not a fan of any of the 501c3s that take insulin money. But even Type 1 International takes money from like Arnold Ventures, I think. And so then they're boxed in to they have to be nonpartisan. So they can never, it's my understanding, they can never advocate for health care for all. because that's not nonpartisan. And sort of once you become, you know, I think there's probably some local 501c3s that are doing good work. But anytime you get to the national stage, when you have to sustain that many staff members, you have to get your payroll from somewhere. And so you end up taking, you know, money from corporations like that, and then you have less control. So that for me is why I'm so interested in MAD, because we're just, we can't be bought. but you can buy us stuff if you want to. And we should. And I think I want to characterize,

[01:05:14] Rob Howe: like we are going to use this episode to, as a call to action to our community, to be either get involved in the network, to donate money. Because again, like this going to people who need it most, you know, whether it's cash or supplies or insulin. And again, just being part of that community means like lending a helping hand to the left and the right. And, you know, to forgive the cliche, but like, but for the grace of God, go I, you know, like we, we are all for one reason or another, uh, in the positions that we were in mostly out of luck, uh, and by no doing of our own and, um, you know, standing in solidarity with people who are disabled and who have diabetes to get them the help that they need is to me, such an easy thing to do. Uh, just like there's not a whole lot of mental gymnastics. Like you talked about earlier to like get over, like the fact to help someone like me, who's not in a city, who's in a, fortunately not, in the same situation that we are in because we could easily be in that position through no fault of our own. I do want to talk about a second. You talked about the intake form and also the survey. Seven people today working at MADD behind the scenes. How do people find you guys? And what is the sort of volume of intake that you guys are seeing and the typical needs that you're seeing for people? You mentioned like insulin is really only the beginning. Uh, sometimes it's like a need for rent to be paid or for, uh, you know, loss of insurance or something like, what is the main, uh, you know, way that people come into the, the mad, you know, sphere?

[01:06:51] Zoe Witt: Yeah. So it's funny. We, um, so we have all of our, we, we work in, in air table. That's, um, what, where all the forms come in and the, a nice table. And that's kind of how we, we organize that bit of it. But we only recently had a question that was like, how did you, how did you find us, which was silly, we should have had it the whole time, right? I'm like kicking myself now. But so we only have data on that for like the last few, the last few requests, really, like the last like 15, maybe. And it's a pretty even split between like, Twitter, you know, some people put social media. One person read an article about inaccessible CGMs and you were mentioned. A lot of people say they Googled, just Googled diabetic mutual aid and then mutual aid diabetes pops up. We love a good SEO find. Yeah. And I think that we're also lucky because we've gotten enough press coverage too that we do look like a legitimate group, which actually even got us into trouble once a little bit, only because there was this gentleman from Texas, and he reached out to us to get Ozempic because he couldn't qualify for the patient assistance program because he was retired on like social security and hadn't filed his taxes in many years. And Novo Nordisk was like, sorry, you can't prove that you're broke enough for this patient assistance program. We're not going to help you. so he found us and it's funny I don't normally do the intake side of things I'm mostly like social media communications outreach type stuff but it happened to be that I was doing it this one afternoon and I was sort of caught off because caught off guard because this guy was like he was like he was a little bit annoyed right that it had taken us a minute to respond which we try and really clearly state but like this is all volunteer it's we can't do it you know we can't guarantee we'll reach out to you if you have like an emergency need. Um, cause it's just not

[01:08:55] Rob Howe: possible. We'd love for that. But it also speaks to the state of mind that people are in when they're in, when they're exactly. They're very much at the end of their rope. Right. And so then he,

[01:09:03] Zoe Witt: we're like talking on the phone and he's like, what, who's your parent organization? Who, what company funds you? And I was like, Oh, no one funds us. We are literally just a group of diabetics. And then he was like, Oh, wow, I had no idea that that's what this was. Like he thought it was much more official. And then he was much nicer once he realized that we weren't like funded by Novo Nordisk or whoever just told him he couldn't have his Ozempic. But, you know, so then, then it was it but it was funny, because I was like, wow, I, I can't believe that, you know, that he thought that we were totally not what we are. So I'm working right now, actually, on building out more like frequently asked questions we're going to have like a little a document we're working on right now that it's working title is our mad manifesto which is sort of going to be like a political guiding document that I think will give people um some more like specific insight to just sort of like what the group believes um and what you know we kind of want to to make our like guiding principles um so I'm trying to to again do more like kind of education and stuff, but it's so hard when, I mean, I basically, it's me and then Ash is like the only, basically have two people for all social media communications and outreach. That's just not enough. So if you're listening, please email us. But yeah, so it's like, because I, you know, we have to dedicate, you know, like, so for example, when someone needs help with rent, we do not have enough money to actually send people like rent, obviously. Sometimes we're able to, especially if it's someone we've worked with before, we can sometimes do on a case by case basis, like little like $100, like emergency nondescript grants for just kind of like whatever you need to use it for. But we have so many people that need a lot of help. And so we try and connect them with other mutual aid groups and, and things like that. But we also obviously post, um, post like crowdfunding requests, um, which is challenging because it's only on social media and the algorithms suck and, you know, but, um, but yeah, so because we, you know, have kind of just been struggling to maintain that we haven't had a chance to do a lot of the, um, sort of other outreach and just like, um, just defining ourselves as a group for everyone. Um, because

[01:11:34] Rob Howe: we've been in such a, such a social media, you guys are on Twitter, Instagram, and Facebook.

[01:11:41] Zoe Witt: Do you have a Facebook group as well? We just recently reactivated the Facebook. Um, and so we are on Facebook. We're not very active on Facebook. We're primarily, um, active on, on Instagram and, and Twitter. Those are our main spots. Um, but, and we're, we're going to

[01:11:57] Rob Howe: obviously like link to all of the resources in the show notes. And like, uh, I think a question that we had when people, you know, what's the best way for people who are listening to be like, what's a, what's an easy way for them to either get involved, to donate, to help organize. Like, obviously I hope that there's people listening who are like, you know what, this is something I want to give my time to. This is something that I want to be more involved in. But for somebody who is like, oh, I'd love to help, but I'm also like other people. I don't have a ton of time on my hands. How can they help Mad and how can they help you guys?

[01:12:32] Zoe Witt: Totally. Yeah. So first of all, I will say that we need more intake volunteers and more sustainability volunteers. So if you're at all interested in donating your time, we definitely need those positions. I will here in a minute, we'll come back to like the statistics about intake and stuff. But we definitely need help with that people that would be good at that. I mean, no one needs to have any experience or anything like that. But someone that will first of all, for intake, I mean, anyone that's a diabetic that feels comfortable sort of navigating these systems would be great. Anyone who's got like social work experience, or is like a counselor, anyone trained in like trauma-informed care um anyone who's you know just enjoys talking to people even um in a very general sense um you'd be great please just um email us mutual aid diabetes at gmail and just you don't i mean some people attach resumes and stuff don't necessarily have to i mean just tell us introduce yourself we'll like set up a call and and see um see what would be a good fit for you. We really have so much that we need done that kind of anyone, if you want to volunteer, we will find something for you to do. Trust me. If you want to support us financially, mutualaiddiabetes.com slash donate has sort of everything linked there, but we have a Patreon and we have a general, just like a GoFundMe fund. So the GoFundMe, that's 100% redistributed directly to diabetics in need of funds to cover co-pays, et cetera. And then the Patreon, if you want to do a monthly reoccurring donation, even it can be as low as $3. That helps a lot too. If we had a bunch of people, I mean, like we have so many Instagram followers and I just think all the time about like, if even 25 of them signed up at that lowest tier, like we could help so many more people. So the Patreon, it's mostly a mode for you to just support us, but we are going to release some little things on there. It's not going to be anything that, you know, should like, should be publicly available because it's obviously behind a paywall. So we're not going to put like really important information on there, but there might be some like bonus content type stuff that we throw up. So, but that money mostly gets redistributed to folks, but it also is used to just cover some of our operating costs and things like that. So yeah, Patreon, go fund me for a one-time donation, and then just email us if you want to actually get involved. Also, this is more longer term, but the idea is to make a blog and a podcast eventually. We don't have near enough people to do that yet. But if anyone is a writer or a graphic designer or an audio producer or anything like that that is feeling particularly inspired, please contact me as well. I just don't know what the timeline for that would be like exactly.

[01:15:51] Rob Howe: It sounds like more hands, more helpers, more supporters, whatever you have able to give. you know, like you said, you guys will find a place to help you make an impact.

[01:16:02] Zoe Witt: Absolutely. Yeah. Yeah. Um, okay. So we should go over statistics. Yeah.

[01:16:07] Rob Howe: Let's talk about statistics. Cause I, I, I think that I talk about a lot and honestly, like keeps me up at night is that social media advocacy, while ultra important only represents a small percentage of the population in the United States living with diabetes. Like even you go look at the most popular diabetes accounts, the ones with the largest reach, and you're looking at like, even if you added them all up together and assume that there was no overlap, you're not even close to the a hundred percent of like the 1.5 million people just living with type 1, like forget about every other type, uh, you know, which obviously makes that number a lot larger. So how do you reach the people who are not engaged with the diabetes community? And I, this is an unfair question. I don't have the answer to this. I love it though.

[01:16:53] Zoe Witt: I mean, I don't have the answer, but I have sort of an answer, I think. As someone who was previously basically exactly the person we're talking about, someone who is not engaged in the online sphere at all, I do often sort of one thing I want to say is that I ponder if I had found the diabetes online community when I was rationing insulin, depending on what corner of that I found, I probably wouldn't have wanted to engage with it just because so much of it is like CGMs and pumps and like flat lines and just things like that, that are not relatable at all. I think to most, um, most diabetics that are, are sort of in that position where we would need to be doing like outreach to them. Um, so it's, it's really hard. I think there are changes that need to be made within the sort of the community, first of all, so that if people do end up there, that they do want to get involved, which I think that it's even in the time that I've been involved in the DOC. I think it's gotten better. But there's still a lot of issues surrounding that. So I think that in general, it's not a super hospitable place for for people that are just sort of stumbling upon it. But I think in a larger sense, I mean, we really have to, and it's not like this is an easy task by any means, but we really have to like fundamentally change the public perception of diabetes, I think, because there's just no other way, in my opinion, to do it. And I mean, that, that means that like, we need, you know, it's great when, you know, when, when people see themselves represented by folks wearing like CGMs in TV shows or on a runway or what have you. But that's not super relatable for a lot of diabetics. And so I think, you know, there needs to be more people that are sharing stories about their struggles. And I think that's something that like, especially of the type ones that a lot of us don't, maybe didn't think to do because of all that messaging we got when we were younger from organizations and doctors and society as a whole, obviously every step of the way.

[01:19:20] Rob Howe: Also, it's hard and uncomfortable to admit difficult things about your life. And I think society, like in the United States in general, is like we have this very, it's great when we show off when things are going great, but we keep really quiet when things are not. And we downplay, I think, to the detriment of our own mental health when we say, oh, everything's fine. Everything's okay. Just stop looking at me, move on to the next thing.

[01:19:43] Zoe Witt: Yeah. Yeah. So to me, it's like, it's, it's, it's, it was also actually my first concern when I joined mad, um, was like, well, we have this social media apparatus built out. But when I was rationing insulin, I certainly wasn't, I wouldn't have found this. Um, which is, it's interesting now to see that so many people are finding us from Google because it's true that those people are not coming through social media. They're not part of the DOC. Um, and so, yeah, I mean, I, um, I think that it's, it's just going to take a lot of work from a lot of people to really change public perception, but it's so hard when so much of it is not in your control. Right. Like I'm actually I'm I mean, I mostly do nonfiction writing, but I'm trying my hand at writing a screenplay about my experience rationing insulin while working at a restaurant. But I just think about like how many barriers there are to Hollywood. And this is me as like a thin white woman, you know, and I'm just like thinking about how hard it would actually be to get that movie made, even though it's such, you know, content like that, media like that is so, so important to the general public and even other diabetics, you know, understanding the reality of the situation of diabetes in America. but it's just so hard when like the media, I mean, even diabetes media is like various companies and things like that. And so it's like, anytime that is involved with like media or anyone telling their story, if you're a person like me, that is suspicious of that, you're immediately going to be turned off. Right. So like, that's the other thing is that, that is great about mad is it's like, we're, we're just, we're unaffiliated with any of those things that could be potential conflicts of interest.

[01:21:39] Rob Howe: Well, I think too, even deeper, like, and I say this as a guy who runs an advertising agency, like nobody wants to make ads that are like really real and sad because they feel, you know, that, that, that would take a big, uh, you know, that would be really courageous to do that. And very like not by the book, you know, and, and I think, um, you know, that it just, you know, speaks to that culture at large, but at the same time, it doesn't mean that those stories are not valuable. And I also think like when you're sharing vulnerable things about yourself or about other people, uh, you know, I was thinking, as you were talking about, you know, a screenplay of like what it's like to ration insulin, I thought of what I would say like, is the, maybe the most mainstream media, like consumption of a person really dealing with difficult, uh, drug situations is like Dallas Buyers Club. Uh, and like, uh, you know, a man literally dying of, of HIV, uh, and, you know, having to traffic his medication in from another country to help other people. And, you know, you see the great response from that. And then what happens in return is like still no systemic change, like despite winning awards, despite like high profile people being involved, just a very difficult, difficult task.

[01:22:46] Zoe Witt: Well, and that's also why organizing outside of these systems that exist is so important, because, you know, there's so many people that are working for legislative change, you know, mostly unpaid volunteers for type 1 international. At least what I see is that it's mostly the state level folks that are doing all of that work. But it's just not, I mean, it's not enough. And it's an impossible task, right? But to me, continually trying to change this system that has proven us time and time again. I mean, it just seems like my efforts would be so much better spent elsewhere. And I think a lot of people in America feel really disillusioned by our political situation where it's like, well, choose between two people that kind of suck and it's probably just going to stay the same or get worse. And that's kind of it. And we accept it. But, you know, I think mutual aid has the potential to fundamentally change this country. And we've seen it happen in the past. I mean, the Black Panthers started feeding people breakfast because that was something that their community needed. And then the FBI basically put them on a watch list because of mutual aid, because they were, they were concerned that that was going to be too much good PR for them. And so, and that's like, you know, that was, that had nothing to do with them, you know, carrying guns or things like that, which was also for self-protection and to protect black children, et cetera. But, uh, you know, I mean, like the, the government does not want things like mad to exist because mad existing proves that the government is harming us and something that they, yeah, it's obviously not something that they want to have called attention to in, in that manner. Um, and so it's, you know, but it's, that's why it's so vital to do because it's my personal opinion that we are not going to see significant change uh sort of navigating within the political system because all the politicians are bought and sold and we've seen now that it only has to be like one or two of them like Kyrsten Sinema uh to totally obliterate even what was not going to be great but was going to be some sort of incremental progress, which again, I don't mean to, you know, anything is good for mad as in, you know, a copay cap still helps some people. But as long as there are these, you know, numerous barriers, it's just, there's always going to be people that are falling through the cracks. It's just, it's absolutely inevitable. Let's talk about those people. Let's talk about the

[01:25:34] Rob Howe: statistics because I think, you know, that's, that's a great place for us to say, like, how can we help today? Cause I agree with you. There's insurmountable levels of challenges that, you know, we can discuss on this. We can have a discourse on here that, that won't leave any of us with any like immediate actionable steps. And I think we, uh, we all agree there. Um, but I want to know like the people like one, two things I want to hear like a, like the impact that you guys are having with a small volunteer organization to give the people who are listening an idea in their head of what they could accomplish if they helped you guys and got involved. And number two, a success story that stands out to you as like, oh, hey, you know what, when you logged off of MAD for the day, hey, we were able to help this person. So I'd love to hear your thoughts on both

[01:26:18] Zoe Witt: of those things. I love this. The first part of your question, because that's what actually is so gratifying about mutual aid is that it is you're literally making an impact right now. Like Like you are tangibly improving someone's life immediately. And you're doing that, like not only knowing that you're helping them, but that if you ever find yourself in a position where you need help, the group will also help you. Like we really try and, you know, avoid like talking about these things as if there are like certain people that we help and then certain people that are doing the helping. it's really just about like collectively coming together and maybe right now we're taking care of these people but maybe tomorrow it's one of us which has happened to basically all of us while we've been a part of MADD. I think like me, Allie and Emily have all had to like crowdfund and stuff. So you know it's an amazing thing to be able to make that kind of direct impact. So as far as our our intake requests go it's quite interesting because we've been accepting aid requests for a year however during significant portions of that last year there were times where we were like intentionally doing no outreach because basically the only intake volunteer was Allie like Allie was mutually diabetes for a while it was at a point where we were like we can't even grow because if we try to grow, we're not going to be able to meet this demand. However, as I'll share with the numbers in a moment, in the last few months where we've been more appropriately staffed and we've had more time to do outreach and things like that and more social media posts and engagement, our numbers and diabetics doing things and other people sharing us, our numbers are going up. So it kind of shows that like even if our numbers are small, like when our audience grows, so do our requests. And we kind of always knew that like, we were worried about getting like accidentally becoming like a little Instagram famous or something, because we're like, we cannot meet these demands. So with all that in mind, so basically in the last year, this was as of February 20th. So that's like about a year of accepting aid requests. Um, so we had received 293 requests for help obtaining supplies and medication, which includes insulin. It's something like 25% of our requests have come in in like the last few months. So we're, we're getting more and more requests like every day of everyone that asked for help. 30% were uninsured. 28% of the total requests indicated that the community member would be completely out of insulin medication or supplies within two days. So whatever they were asking for, 28% of them were going to be totally out in just 48 hours or less, basically. Of those requests, 36% of them or 105 people asked for help getting insulin. Half of the people that requested help getting insulin were uninsured. So more people than just the overall numbers. 17, only 17% of the insulin requesters qualified for a manufacturer patient assistance program or a coupon. And I'm going to tell you right now, I think those are all coupons, not patient assistance programs. I don't know that we have ever had a single person that we've actually gotten on a patient assistance program, but that's something that we do is like, we, you know, we go down, down the list and if we can try it, if the time permitting, obviously if someone needs something in 48 hours, a patient assistance program is not going to help us. I was thinking about that too.

[01:30:21] Rob Howe: reason, like this is an immediate need. And that's when I think of like the patient journey to get to MADD, uh, like you've likely tried literally everything else. And, uh, you know, whether, you know, it sounds like no one, like you said, no one has qualified for the patient assistance program probably, but even if they did, it's a months long process to get that paperwork processed

[01:30:45] Zoe Witt: and then shipped and like obtained. So, yeah. Yeah. So I'm going to say that the 17% we can pretty much say is, and I'll double check this, but I'm pretty sure it's all coupons, which are great when they help. But then even when someone gets like a $35 coupon, they're in a position where we're often also giving them that $35. So even something that sounds to a lot of people, like a low number, like 35, we hand out $35 to a lot of people. So and then to that, yeah, so 12% of insulin related requests had to be fulfilled by direct funding. And that's either to get their, their insulin or to like pay a copay to go to a doctor to get a prescription for insulin or something like that. 8% of the folks asking for help finding insulin were referred to local public health or charitable health providers like 340B clinics, stuff like that, to either obtain the insulin or a prescription for insulin. And then 10% of people were referred to an online telehealth resource, like GoodRx Care is one that we refer people to, to obtain a prescription for insulin. And then 19% of the insulin-related requests had to be fulfilled by basically referring people to community members who do supply sharing. And that only happens kind of once we've eliminated all the other options. And of course, only if the people feel comfortable with it. And that's true of anything we offer people. At any point, if someone is suggesting something and we really try and have just a collaborative conversation with folks, but they're so used to interacting with people when they're seeking medication and it being a very different dynamic. So they obviously are usually pretty like hesitant to like speak up. But basically the idea is if someone suggests something and you're like, actually, I can't get to that clinic because I don't have a car and like the bus is not really a reliable option, then we'll be like, okay, if that clinic's not an option, let's look at what else we can do. And that might be one of the reasons why we end up just getting to like supply sharing and referring them to folks who do that. But it's really like a flexible thing where we just want people to tell us what they need. And the more information they give us, the better we're able to help them. But yeah, it's, it's sort of an ever evolving process. And then of course, things like patient assistance programs, and coupons, they're changing all the time, like the requirements. Like I remember, I, I never qualified for any of them when I was rationing insulin. And actually recently I, I, um, I've gone on get insulin. What is it? Dot org. So I'm on Medicaid, right? And so Medicaid is a tricky situation because you aren't allowed to give people on Medicaid, at least in most states is my understanding, any sort of free product or anything. So like one time Omnipod screwed up, gave me some false information. And basically my prior authorization was held up for a while. And I was like, okay, well, you all are to blame. And they were like, yes, but we also actually can't legally give you any, you know, free pods. And I was like, oh, makes perfect sense. Anyone poor enough to be on Medicaid. What? Like, it's absurd. So I was thinking to myself, I was like, obviously, I'm, I'm connected with mad. So this would not be a legitimate concern for me. But I was like, what if right now, I just like broke my last file of NovoLog. Right. And so it's not time for me to get my prescription yet. And so I'm basically looking at, at paying, paying full, full price out of pocket. So I was like, what would GetInsulin.org tell me to do? So I go on and I fill out everything. I'm like, I'm on Medicaid, I'm in Washington, blah, blah, blah. And then the page just spits out so many words at you. Right. So again, immediately I'm like, if I was actually rationing insulin, I would just be like, oh my God, I can't understand any of this. And sort of like in a not obvious space, there is a place where you can click like I need emergency assistance, but that is not clear. And the way you like go into it, you think that that's what you're getting when you enter this form, but it's not, it's like a different section, which is extra confusing. But anyway, so I plug in all this information. And it first of all tells me to use the Novo 99, which I explicitly do not qualify for because I'm on Medicaid. So immediately I'm like, you're telling people to use something that they literally do not qualify for. And then the second option it gave me was Medicaid. And I was like, I'm on Medicaid. So I was just like, whoa, this is useless. And so like, as opposed to that, which is a very rigid form, there's no one to talk to. It's super confusing. The goal for mad is just to take that off your plate. You don't have to read any of this fine print. We will use our brain power to do that for you and we will help you figure it out. Uh, Zoe, um, your passion

[01:36:24] Rob Howe: is like full is like, uh, it's inspiring. I think like the people behind the scenes who are giving so much of themselves, uh, you know, with no personal gain, uh, to, to help other people and to also help them when they need it most. Like, like you said, just the act of reading a bunch of fine print when you're at the end of your rope can be extremely debilitating and paralyzing and disheartening. And so the work that you guys do behind the scenes really is heart and soul, giving of yourselves. And I think also for people who have recently, and while they're fulfilling these requests, going through challenges themselves, I think speaks again to the heart of the organization and the need for community support and the need for more people to get involved. Um, and yeah, I just appreciate your time today and breaking that down and, and, um, you know, talking about all the things that we as people with diabetes balance in our heads all the time. Um, and also thank you so much for sharing the statistics. We're going to turn that into a chart for the zine as well, just to give people like a very visual representation of, uh, you know, what it really looks like at, at the like most critical need state for people with diabetes.

[01:37:37] Zoe Witt: please. I've also got a few statistics from the recent, um, math survey that we did.

[01:37:44] Rob Howe: Let's do it. Cause I, we had people, we had people like messaging us like, Hey, I took this. I even the other day I shared it. Like I totally have lost faith in the algorithm. Like you said earlier, but like three people messaged me like, Hey, I took this. And I was like, okay, cool. Well,

[01:37:56] Zoe Witt: like slowly restoring my faith. Thank you to everyone who took it. We honestly, I mean, like I said, these are just a few things like, so yeah, we got 173 total responses. Um, when asked, uh, when we asked respondents, if they felt like the public generally understood their type of diabetes, 98.8% said no, which I don't think is terribly shocking to a diabetic, but it's pretty darn high. Um, so, and then we also did some other questions that break that down, into different sort of groups. But, but I'll save that for a full rundown later. Another one that I noticed was when we asked them if they alter how they manage their diabetes in the presence of others. So like, not taking a shot or not wanting to get up to take a shot or getting up to leave to take a shot or what, you know, any number of things, just anything you would do that if you were alone or, you know, with your chosen family comfortable, you wouldn't be doing. And so basically 22% said yes. Like, yes, they just, I guess, always, always do. 49.7% said they sometimes altered the way they cared for it. And only 28.3% said no. And I feel like these things are also, I mean, you know, this is a small corner. Obviously it was all social media. The people that responded are sort of more like our followers, more than like are the people that were necessarily like serving or answering, you know, their requests for. But just something to think about. And then a spicy topic, because I saw that diaTribe has some interesting language on their stigma website about person first language, which personally, I am not a fan of person first language. but I think it is important to acknowledge that, you know, especially when you look back at disability history and things like the ugly laws, which obviously we could do a whole podcast on that, Google it, watch Crip Camp on Netflix. But basically, you know, things were so terrible for disabled people for so much of history that person first language came about at a time when they felt like they had to remind people that they were people, right? And so that was something that disabled people like advocated for at the time. I think now, especially with younger folks and, and people that are sort of involved in disability activism now, identity first language is, is more popular. And that's certainly what our poll revealed. So 54.3% said they preferred diabetic. um they identified as diabetic uh 12.1 said person with diabetes and 29.5 said no preference um and we were pretty i mean we we obviously skew younger but it was pretty well distributed among among age which i was kind of kind of surprised about for me it's like i'm a writer And I just person with diabetes is so clunky, first of all, for me. But then also, like, I mean, it's just I don't say I'm a person with queer. I'm queer, you know, and similarly, I'm diabetic. I'm disabled. I mean, it's a source of pride, but it's also like I shouldn't have to remind someone I'm a person. You better know damn well I'm a person. um but yeah so that was interesting to see that that 54.3 percent of respondents identified as a diabetic and about 30 percent said either one is fine well i wish i had that data seven years ago

[01:41:48] Rob Howe: when people were coming at me like why are you calling your podcast diabetics doing things like yeah and i was like honestly i'm so sorry if i offended you i did not mean to and i do not care

[01:41:58] Zoe Witt: But again, I think that like a lot of the desire to say like a person with diabetes and not a diabetic is just because, again, since we were young, we've just been, you know, fed this information of like, well, you're just like everyone else. You're normal. You're not disabled. And it's just like to me, not that everyone that identifies with person first language is doing this or doing this intentionally. I mean, to me, it's just distant. It's like trying to distance yourself from it in a way. That's how it feels to me. And that does not sit right with me. It's also like, I don't know, again, with the disability thing. I mean, yeah, like 504 plans and stuff. Like anyone that uses that or accommodations, if you do, or even that you have the option to, it's because disabled protesters occupied a building and the Black Panthers fed them. And that's the only reason that that like came about. the like 504 sit in protest in San Francisco. So I just feel like we should all be really proud to say that we're disabled and diabetic. And I think we really need to show everyone that neither of those words is bad. It's not a bad thing. And you should be proud to say it.

[01:43:09] Rob Howe: I couldn't put, I couldn't put it better myself. Zoe, thank you so much for going deep into these details. Like I could not have, you know, my expectations have been like so blown away by, you know, how vulnerable and open that you've been with sharing your story as well as the story of MAD. You know, we want to be part of, you know, helping you guys to continue to help people in the community who need it most. And hopefully also like get more people on board to help organize and help, again, facilitate like the operations that are required and the time that's required to get people the help that they need. All right. Thank you so much for sticking around with us at Diabetics Doing Things. If you want to get more involved with Mutual Aid Diabetes, visit MutualAidDiabetes.com. You can donate, you can volunteer, you can pass along the link to someone in need, and you can do that for free. So check out MutualAidDiabetes.com.