Diabetics turn to one another for help

A conversation with a leader of Mutual Aid Diabetes.

Today’s interview is with Allie Marotta of Mutual Aid Diabetes, an online mutual aid effort that helps diabetics get the medical supplies they need to stay alive, when America’s healthcare wasteland has failed them. (You can donate to their general fund here.)

MAD is an example of responses to America’s lack of a healthcare system that are both remarkable and that shouldn’t need to exist at all. It is not beyond the power of a rich nation to ensure that everyone can get medication when they need it; as Allie notes, advances in technology make it much easier for diabetics to manage their blood sugar, if they can afford a continuous glucose monitor and pump.

Insulin has become, in the words of Natalie Shure, the “poster child” for single-payer healthcare. Nothing “illustrates the failures of the American health care system” better than the expense of insulin, she wrote last year, and the fact that people routinely die for lack of it. But the realities of living with diabetes, or any chronic and expensive illness, makes life harder even when they do have insulin. MAD sees many requests for help with rent and groceries as well as insulin, and why wouldn’t they—it’s hard to stay healthy, let alone alive, if you don’t have food and a roof over your head. And, according to Allie, MAD gets as many requests for help navigating insurance as it does for supplies—something that could be easy, free, universal, automatic. Instead it’s an ordeal, one that disproportionately burdens the already-burdened.

The horrible reality of living as a diabetic in the United States means two things: One, that people will come up with creative ways to keep each other (and themselves) alive when the healthcare system doesn’t provide that. Two, that sometimes they will fail. The story Allie relayed of the street photographer who tried to help the man living in his car is a particularly striking example of this. The photographer, Brandon Jennings, and Mutual Aid Diabetes did everything they could, fast and well, and it wasn’t enough; the man passed away, Allie and Brandon told me. Stories like this are inevitable when people can’t access regular or preventative care, or any sort of healthcare at all.

Groups like Mutual Aid Diabetes are remarkable for what they achieve—Allie said so far, they’ve managed to fulfill requests for supplies 100 percent of the time—and for the fact that they have to exist at all, but the burden they’re up against is huge. They won’t reach every diabetic who needs help. Only a just healthcare system—one that guarantees healthcare as a right, equitably and easily available to all, with no cost or discrimination—can hope to achieve this. Without that, we’re not just letting people die unnecessarily. We’re forcing sick people to spend their limited free time doing the best they can to stop it, in their free time, without pay or recognition, and to live with the knowledge that they won’t always win.

This conversation has been lightly edited and condensed.

Sick Note: How did how did Mutual Aid Diabetes come about?

Allie: I'm on the leadership team, which is the group of people who are organizing the whole effort. It's me and three other people—all of us have diabetes, and all of us were a part of the original organizing effort, but it's transitioned from the original group of people who have worked on it. So MAD started a couple months into the pandemic, largely because we were seeing an increased need of mutual aid in our community, but also because a lot of us were unemployed and had the time to organize a little better. Basically what happened was all of the mutual aid, black market organizers came together like, this isn't sustainable, people are in our DMs, and we're trying to keep them from dying. It's just really chaotic and it puts a lot of pressure on each individual. So we're like, how can we build a better system, and that's how we started MAD.

I think our involved volunteers, maybe we have 20 to 30 people who have worked with us in the past and people working with us currently. That's the leadership team, the intake volunteers, the sustainability advisors. We also have people who work on social media, someone has taken over our email inbox, because we're just so busy doing the actual work, none of us on leadership would answer any emails. And then we also have website people, and all those components.

Sick Note: This is all volunteer—presumably no one is drawing any kind of salary or anything from any of this?

Allie: No, it's all volunteer, and it's all people who have diabetes.

Sick Note: How does it work?

Allie: It is just a mutual aid group right now, we're not a (c)3 or (c)4 or anything like that. We're by and for the community, no one else; we don't answer to anybody else. The way that we help people right now is we have an aid request form that people can fill out. It just asks some questions to give us a little bit better idea of the situation and how we can best help, and then once that's filled out, it goes to our intake team. A trained volunteer will then reach out to that community member and connect about their situation and what they need, and then assess the best options that they might have, and offer them all these different options. We put emphasis on trauma informed care—we know that people are coming to us from a place of crisis. We don't gatekeep, we don't ask for any proof or receipts or anything. We will offer options, but know that we can't force a community member to try them and always trust that they will use what is the best option for them.

Sick Note: Do you do anything to kind of prioritize certain requests, or is it just first come first serve?

Allie: We have built a prioritization system, but we haven't reached enough requests at the same time to actually need to use it. Right now, it's pretty manageable. But the only requirement of eligibility is you have to have some type of diabetes for us to help you.

Sick Note: I can imagine that a lot of the time, what people will be asking for is insulin. Do you ever do requests for other things, like help with rent?

Allie: Yes. The first thing that we focus on in our main scope is making sure you have the things that you need for your diabetes to stay alive, like diabetes supplies and medications. And then we do get a lot of out of scope requests—like someone with diabetes who also needs help with rent or needs grocery assistance. And the way that we handle those is we will recommend another group in their area who we have a relationship with who can help better with that. We will still boost a funding request for rent but it won't be an emergency mutual aid request. It'll just be like, here's another funding request, just to not exhaust the community. But yeah, we do get a lot of living expense requests, because it's expensive to be sick.

Sick Note: How often would you say you're able to fulfill a request, to match someone with supplies that they need?

Allie: So far, knock on wood, 100% of the time. We are very creative, and not afraid of scamming the system to get our needs. We're radical in that sense, I guess. The only thing is that MAD, on the surface, doesn't do prescription drug and supply sharing, but because all of us are the original diabetes black market facilitators—black market in air quotes, like what's developed—we all have this connection.

Sick Note: Do you feel like that atmosphere of black market sharing of stuff people need, does that grow out of something you've all experienced in your day to day lives as diabetics—sharing with connections you have with other diabetes people, maybe just in your immediate circle? I get migraines, and I've certainly had that experience before where someone I know has needed migraine drugs that their insurance doesn't cover, and I'd say, look, I've got a stack of them here, so the very obvious solution is to offer them some.

Allie: Totally. One of the other members of the leadership team is my in-real-life "diabestie," is what we would call it. I know a lot of people have diabetes in New York, where I am. One of the things that always comes up when we have a meetup or something is, does anyone need anything? But funnily enough, that's not the case for most people. I just happened to have a really strong diabetes community in my real life. Most people are online, and that's the diabetes online community, the DOC. Which is a very temperamental space, but that is where a lot of people do find their connection to community. And it's the same thing—it's always, how are we keeping you alive today?

Sick Note: I feel like it must be challenging emotionally to be constantly faced with these upsetting stories and the knowledge that whether or not you get someone connected with supplies might be the difference between them living and dying.

Allie: Yeah, it's pretty awful. I'm candid about it because I'm the intake lead, I am the organizer who developed our intake system, and I still do a majority of the calls because we are operating on such a small scale. Yeah, it's emotionally taxing. I immediately think about, we had someone a couple months ago, who had reached out to us because he's a photographer who documents life in the area. And he had met a diabetic who was living in his car and eventually got connected with us through the internet. And we had gathered the supplies, I ran to the post office right before they closed and got it out. And we had sent him insulin, and we had sent him a prepaid cell phone, so he can get in touch with us to talk about options. And it got there, and then the next day, that photographer got in touch with us and told us he had passed away. And that was so real and probably the worst feeling in the world because we did everything right. We were still too late.

Sick Note: You're up against just such an unbelievable burden, and it's such a terrible system. You are trying to do your best to patch these cracks that are just gaping. And there's only so much you can do when for example someone's in a situation like that, where they're already hours from death, but still to be... a good person, a good and active member of a community in the face of that. I think takes a lot of bravery, honestly, not to just turn away and live your own life.

Allie: Yeah, yeah. I mean, I think our communities formed on the process of grieving. Any sort of like insulin for all action, we always read the names, there's always a moment of silence for all the people that we have lost. I don't know if this is true for everyone, but for me, in particular, we all are just very comfortable with being that close to death, because it is an everyday thing. Especially if if you've engaged with the history of insulin and diabetes in the past—not even 100 years ago it was a terminal illness.

Sick Note: What are the kinds of supplies that people might need?

Allie: Okay, so there are many different types of diabetes actually. We predominantly serve Type 1 and Type 2, or other insulin dependent types of diabetes. Not every type of diabetes is insulin dependent. But I would say that everyone who's insulin dependent does have a type of diabetes. So for Type 1 diabetics, that's when your body has an autoimmune reaction and attacks the cells that make insulin, so you don't have any way to make insulin in your body. And I have Type 1, so this is my area of expertise. So you have to supply the insulin synthetically. So the main supply, obviously, is the insulin itself, and that's an injection. Some people do it as shots, like multiple daily injections, but a lot of people do it through a pump using a medical device. And then the other component is testing your blood sugar. Pretty much every type of diabetic needs to do this. And that is pricking your finger and putting it on the test strip and the meter reads it. But a lot of people now will use what's called a CGM, a continuous glucose monitor. It's a little medical device that's attached to you and it sends you a blood sugar reading every five minutes to your phone or to the transmitter device.

So CGMs and pumps are great medical innovation for the care of diabetes. There's even options to loop them together to create an artificial pancreas system, you don't have to think about it as much. You'll get this you'll get a reading and then your pump will automatically use whatever algorithm you set it to to deliver what you need. So it makes it a lot easier—I use a loop system and it's changed my whole life. But those devices are so expensive as well. So even just regular test strips, like the most antiquated form of tracking your blood sugar, they're so expensive. I don't think there's anything in the diabetes care list that is inexpensive. If you don't have an insurance plan or whatever, you're doing it all out of pocket, it's impossible. It costs so much money.

Sick Note: Do you ever get requests or end up helping people navigate insurance coverage signing up for Obamacare plans, or Medicaid or anything like that?

Allie: Yes, that is probably just as popular as our request for direct supplies or crowdfunding, is a request for what we call a sustainability question. And we have a team of sustainability advisors who are social workers or hospital care workers, or people who are in the insurance field, who can jump on and help navigate what options they have for insurance, or local public health options, like 340b centers near them. And that is what we think of as longer term solutions, so they don't contact us with like, I'm going to run out of insulin in two days—hopefully, we can help them find a sustainable solution. So yeah, we get just as many of those as we do for emergency supplies.

Sick Note: What is the audience where people who tend to donate? Where do you think the money is coming from in general. Is it other diabetics?

Allie: Yeah, mostly people in the DOC. Sometimes our posts will get picked up by another mutual aid group, and then we'll get non-diabetic, non-disabled people. Which is ideal, that's what we want.

Sick Note: Right, that's the frustrating thing. The ideal situation would be to redistribute money from lucky people like me, who don't have to deal with this stuff and have extra cash lying around—to be able to reach those people, rather than having to constantly help each other out. It's like that thing about how everyone is just like passing was saying 20 bucks to each other on Venmo constantly.

Allie: That's a very real part of mutual aid, but we also focus on the community care aspect as well. So we're not only crowdfunding, the time and commitment that we put into taking care of everybody who comes to us. That's a lot of our focus, as well. And people get discouraged when they're like, well, I don't have funds to donate. There's so many other ways that you can participate.