NOVA recommends the documentary, "Blood Sugar Rising," which follows the diabetes epidemic in the U.S. Diabetes and pre-diabetes affect over 100 million people in the country, costing more than $325 billion each year. The program puts human faces to these statistics, exploring the history and science of the illness through portraits of Americans whose stories shape the film. (Premiered April 15, 2020)
“Blood Sugar Rising” is a production of Structure Films for WGBH, with funding from Draper, The Russell Berrie Foundation, Sami Inkinen, through the Inkinen Family Donor-Advised Fund, The Corporation for Public Broadcasting and PBS.
Blood Sugar Rising: America's Hidden Diabetes Epidemic
PBS Airdate: April 15, 2020
ENRIQUE CABALLERO: In the United States, it is estimated that there's about 100 million people with diabetes and pre-diabetes, 100 million people in the country affected by a blood sugar problem.
KELLY CLOSE: The economic impact of diabetes is devastating. We spent almost $350 billion on diabetes in the United States last year.
NARRATOR: Diabetes. A chronic disease that’s notoriously difficult to control. It can maim… and even kill. A generation ago, less than 3% of Americans had diabetes. Today it’s almost 10%.
DAN HURLEY: It is now predicted that half of the US population will have either diabetes or prediabetes by the year 2025. Half!
NARRATOR: Living with diabetes today is a story of new discoveries about our food environments and choices.
GRETCHEN CARVAJAL: As a seven-year-old coming from a Third World country and getting free candy, I was like, “Yo, I’m so down for American right now. This is tight.”
NARRATOR: It builds on exciting new progress in drugs and technologies that have made the disease more manageable.
ED DAMIANO: This device is around the corner and that’s really what we’re trying to do, is get much better therapy to people that requires much less of their participation and provides much better care.
NARRATOR: And it reveals the terrible struggles that so many with diabetes still have, day in and day out.
MONTEIL LEE: So they was looking at me like, "How are you even standing here on your feet? You're supposed to be in a coma.”
KELLY CLOSE: So when we think about the impact to the system… way too many emergency room visits, way too many amputations… why isn't there a war on diabetes?
WOMAN: She got her flu shot already, sir.
DR. DEAN SCHILLINGER: So this guy, I was just told, he will…oh, no. He's fine, okay. We're good. Okay. Let's put Goodall in the room and I'll have my nurse practitioner start with him.
DR. DEAN SCHILLINGER: Okay? Thank you.
WOMAN: That's good.
DR. DEAN SCHILLINGER: All right.
WOMAN: Okay. One minute okay?
DEAN SCHILLINGER: I'm Dean Schillinger. I'm a primary care doctor at San Francisco General Hospital. When I started out as a young doctor, about 1 in 20 of my patients had type 2 diabetes. Now it’s 1 in 2. That’s in the span of twenty-five, thirty years.
NARRATOR: Diabetes undercuts one of the most basic functions of our bodies – our ability to break food down into nutrients, including the sugar – glucose – that provides energy. The hormone that manages sugar levels is insulin.
KELLY CLOSE: So think of insulin as the medicine that you can't live without, right? Like a key that unlocks the door to your cells and allows the glucose to enter your cells, that keeps the level of sugar in your blood in check and your cells nourished.
NARRATOR: This insulin-glucose cycle is disrupted in diabetes. In Type 1 diabetes, the immune system attacks and destroys the part of the pancreas that makes insulin. In Type 2, the pancreas makes too little insulin, and the body resists the insulin it has.
KELLY CLOSE: It's really obvious when your blood glucose is too low, why that's dangerous. You know, you can't breathe. You can't survive. Um, you won't live very long if you have blood sugar that's too low. Blood sugar that’s too high is equally dangerous, if not more dangerous over time.
ENRIQUE CABALLEROS: Diabetes is truly a silent disease, it could take up to 15 years for someone with diabetes to develop the first symptoms that are related to high blood sugar levels.
NURSE: Water and soap, use an alcohol pad with this…
NARRATOR: For many people, by the time diabetes is diagnosed, the damage is done… damage that can include blindness, heart disease, strokes, even amputations.
DEAN SCHILLINGER: There's not a lot of things more disfiguring than losing a limb, particularly a leg or a foot. We now have a limb salvage unit at San Francisco General Hospital to handle the volume of these amputation patients, something 10 years ago would have been unheard of.
I’ve probably seen maybe a thousand amputations. It’s healed really well.
NARRATOR: Dr. Schillinger’s next patient is a man with Type 2 diabetes who may be facing amputation.
DR. DEAN SCHILLINGER: Monteil Lee?
MONTEIL LEE: Nice to meet you, Doc.
DR. DEAN SCHILLINGER: Good to see you. How long have you been in the hospital this time?
MONTEIL LEE: I've been here for a week.
DR. DEAN SCHILLINGER: A week? Okay.
MONTEIL LEE: Since Monday rather.
DR. DEAN SCHILLINGER: Monteil Lee is a 36-year old man from the Fillmore district, used to be the, sort of, heart and soul of African-American culture in the Bay Area. And like many young men really has had very little to no contact with the health care systems, doesn't go to the doctors for preventive care or anything for that matter, kept living his life as a young artist was doing, which is making music.
DR. DEAN SCHILLINGER: So now I want to talk about your diabetes. How old were you when they told you?
MONTEIL LEE: I was 28. I was experiencing some things with my body that I've never experienced in life before. I'm going to the bathroom over 30 times a day and I'm just like, "Something's not right."
DR. DEAN SCHILLINGER: You're peeing?
MONTEIL LEE: Yes. But I'm very energetic. I'm an on-the-go type of person and I'm starting to feel sluggish all these different days. And I felt myself leaving my body.
DR. DEAN SCHILLINGER: I see.
MONTEIL LEE: One of my cousins rushed me to the hospital, and they checked my levels and they was looking at me like, "How are you even standing here on your feet? You're supposed to be in a coma." I thought I was about to die. So, they told me that I had diabetes. And, at that moment, my life changed.
DR. DEAN SCHILLINGER: Can we look at your foot?
MONTEIL LEE: Yeah. I got an infection on the top of my toes.
DR. DEAN SCHILLINGER: Just out of nowhere?
MONTEIL LEE: Ooooh.
DR. DEAN SCHILLINGER: Yeah. I can see that. You got a, still have a little shallow ulcer there. And then it started on this side here?
MONTEIL LEE: Yup.
DR. DEAN SCHILLINGER: And… but they said you might lose the toe?
MONTEIL LEE: Mm-hmm.
DR. DEAN SCHILLINGER: People with diabetes because they got a lot of sugar on their skin, the fungus loves to hang out there. It's moist, it's warm, it's sweet, and they grow foot fungus, athlete's foot, and in the person with diabetes, it can be the portal to death, right. So the athlete's foot begins to burrow in the skin and create cracks in the skin, and that's like the perfect opportunity for more virulent bacteria, dangerous bacteria to enter into the skin and begin to infiltrate the entirety of the foot.
DR. DEAN SCHILLINGER: Okay. I think you got to start… I'm not your doctor here, right? But I'm going to tell you, you don't want to put any weight on it.
MONTEIL LEE: Yeah. I'm fighting it.
DR. DEAN SCHILLINGER: Yeah. Who's your regular doctor?
MONTEIL LEE: I don't have one.
DR. DEAN SCHILLINGER: Okay. So, what I was going to suggest is that I could take over as your doctor.
MONTEIL LEE: That would be great. (laughs) I appreciate it.
DR. DEAN SCHILLINGER: I want to hear you’ve not been on the foot for 3 weeks.
MONTEIL LEE: The best doctor deserves the best patient.
DR. DEAN SCHILLINGER: Exactly. And I was going to say that.
MONTEIL LEE: See? Great minds even think alike, too.
DR. DEAN SCHILLINGER: So.. So we got, that's the clinic, like, your primary care doctor, I will become your primary care doctor.
MONTEIL LEE: Okay.
DR. DEAN SCHILLINGER: Okay, my friend.
MONTEIL LEE: Appreciate you.
DR. DEAN SCHILLINGER: You, too. Good luck.
MONTEIL LEE: Thanks a lot.
DR. DEAN SCHILLINGER: I talked to the surgeon and we both thought there was a kind of 50/50 proposition as to whether he's going to lose his toe or not. It would really be dependent on his behavior, his choices. Would he stay off the foot, like completely off the foot? Would he elevate the foot higher than his heart? Would he take the antibiotics correctly and to completion? Would he manage his diabetes because that's perfect for the bugs to keep growing, they love the sugar. So there's a lot of ifs. So, you know, this is a fairly typical amputation story. I mean, it's…I could tell it again and again. The only thing that differs is the person with the foot, and in this case, he's a very unique individual, as many people are, but I think he's very special.
WOMAN: All right, here we go.
DR. DEAN SCHILLINGER: If he can find that story in himself…
MONTEIL LEE: This is so awesome. I haven’t smelled air in a week.
DR. DEAN SCHILLINGER: I do believe that this experience, as terrible as it is, actually may, may be transformative for him. It could go south too.
DAN HURLEY: 150 years ago a doctor could go most of their career and maybe see one or two people with diabetes. It was just considered a very rare disease and it had been since ancient times.
NARRATOR: Records of diabetes may go back to the pharaohs. This papyrus describes treating the disease with seeds, honey and yellow ochre clay. There were no better treatments until 1921, when insulin was discovered. But insulin was still a treatment, not a cure. Even with new, more effective drug formulas, in the last two decades rates of both Type 1 and Type 2 have skyrocketed.
DAN HURLEY: Everybody knows that Type 2 diabetes has been increasing. What people don’t get is that Type 1, what used to be called childhood onset diabetes, has been increasing at the same rate. When I developed Type 1 diabetes in 1975 I didn’t meet anyone else who had that disease at my college. I didn’t meet friends, I didn’t have family who had Type 1 diabetes. Today I know so many people with Type 1, not because I wrote a book about it but my neighbor down the block, the girl around the corner, the editor of my local paper, the priest at my church.
NICOLE: My name is Nicole and I'm a Type 1 diabetic. People always say, you're Type 1. Is that the kind that's worse? Well, I have diabetes complications and from where I'm sitting, it doesn't matter if you're Type 1 or Type 2, both Type 1 diabetics and Type 2 diabetics can get complications. And they're the same complications.
NARRATOR: The complications in diabetes tend to accumulate slowly, as the extra blood sugar damages the eyes, the heart, other organs bit by bit. For Type 1’s, the complications can also be immediate and disastrous. The pancreas is no longer making insulin. Sugar is not getting out of the blood and into the cells.
DAN HURLEY: Your body is designed to have blood sugar at a perfect level. It's really incredible how well the healthy body regulates the blood sugar level, not too high not too low.
NICOLE: I think that no one prepares you for, mentally, what it's going to take to live with something that's so 24/7. I've had diabetes for 18 years, and you always have to be thinking. You have to think before you exercise, what's your blood sugar? Before you go to sleep, what's your blood sugar? In the middle of the night, what's your blood sugar? When you're sick, what's your blood sugar? You know, it never escapes you.
NARRATOR: Nicole’s diagnosis started with the classic symptoms of diabetes, so well-known that a 17th century physician called the disease “the pissing evil…”
NICOLE: I had to pee all the time, and I was drinking a lot. And I remember telling one of my friends, I said there's something wrong with me. I was drinking… it's like you're in a desert and you're so thirsty, like, you can't stop. From there I was telling my mom, and she was like, “I think we need to get you, you know, tested for diabetes.” And I was like, “Diabetes, what's that?” I didn't know what it was. And she's just like, “We need to take you to the doctor.” And she took me and right away they diagnosed me with diabetes and they started me on insulin within days. I didn't end up in a coma, a lot of people will end up in a diabetic coma and have to be hospitalized. I think my blood sugar was like maybe 375-ish somewhere around there. So it wasn't you know, 800 plus. So I got lucky, so yeah. When you get diagnosed at 17, it's hard. I was so afraid to go low that I kept myself high. Because low blood sugars to me meant I could die and specifically I could die in the night, like, when I’m sleeping.
DAN HURLEY: I am unconscious every night when I go to sleep and I can't know what my blood sugar level is.One time I was alone with our daughter who was then about eight years old and she found me sweating profusely and unable to come to. And she realized something was very, very wrong with me. She didn't know what she was supposed to do. She wasn't quite sure she knew I needed something sweet so she went into the kitchen and got marshmallow fluff and began spooning it into my mouth. And she saved my life.
NICOLE: Someone that doesn’t have diabetes, their blood sugars are stable. They are consistent, just kind of like a line like this, but, with me, my blood sugar could be up, down. So, when it's up, it’s high, and when it's down, it’s low, and so those low blood sugars can make me potentially go into a diabetic coma. And I was terrified so I’d just eat a bunch, you know, right before I go to sleep and I’d be fine. I think it was deep-rooted denial. I skipped insulin injections, I ate whatever I wanted, I pretended like I wasn’t a diabetic. I now have a list of diabetes complications to include kidney disease, which turned into kidney failure, which turned into now I am a dialysis patient. I have to go to dialysis three times a week and have my blood filtered out. If I don’t do those things. I will die. One of my least favorite complications I have severe diabetic proliferative retinopathy which is end-stage eye disease. That's the kind that steals vision. I mean, I don't know what's scarier, my eyes or my kidney... I guess, the kidney disease is what scares me the most because you know, the longer you’re on dialysis, the more the death rate statistically goes up.
NARRATOR: With no functioning kidneys and a damaged pancreas, Nicole is now in line to replace both, a rare dual transplant. For now, she is doing everything she can to stay alive and be ready, if donor organs become available.
NICOLE: Now that I have kidney failure. I also have to watch what I eat. I have to now watch potassium, sodium, phosphorus, and vegetables contain those things. So, actually I have a chart. Avocados, bananas, I don’t eat those at all, I just don’t touch those. If I eat too much potassium, it could stop my heart, and I can die. So, that’s why I don’t eat potatoes anymore. I got yelled at for eating too much kale. And they're like, “Do you want this to jeopardize??” I'm like, “Whoa, okay, no leafy greens, I got it.” If I could tell my 17-year-old self, my newly diagnosed self, something it would be, “Do everything that the doctors, professionals say. It’s not worth it not to.”
KELLY CLOSE: So it's sooo possible to live a long and healthy life with diabetes. It's possible by thinking about how, how do we keep our tanks full? How will we be our best selves? I've had Type 1 diabetes for almost 35 years, and I have kids and a husband and a great job. A lot of people with either Type 1 or Type 2 live well with the disease. They're singers and actors and professional sports figures and major business people and political figures, there's even a race car driver with diabetes but it takes constant attention because it's a complicated and chronic disease.
MONTEIL LEE: I come from a rough background. Through my younger years, back in those days, we ran out of food, we was eating syrup sandwiches, sugar sandwiches, where you just take the syrup and put it on a bread. Drunk Hawaiian Punch, Capri Suns, all that type of stuff. I'm a junk food addict. I eat candy, all type of sweets. It's been a real battle and a real struggle to where now, I'm at this point, man from not being able to control bad habits.
NARRATOR: Do “bad habits” cause Type 2 diabetes? Not everyone who consumes a lot of sugar gets the disease. But sugary drinks and foods are certainly part of the problem. Some companies target communities of color with ads for sodas and high-sugar snacks – and these are the communities with the highest diabetes levels.
ANTHONY HATCH: We know an awful lot about the environmental conditions that lead to Type 2 diabetes. It's living in sugar-rich environments, where people have inequitable access to healthful food, where people are living increasingly sedentary lives. These are the true causes of not just diabetes but of chronic disease in general.
MONTEIL LEE: For me, honestly, it’s overwhelming but I have to, it’s not like I can get around it without taking care of it so I’m just dealing with it the best way I can. So now, waking up every day having to check blood and make sure these levels are correct and all this different stuff. I’m trying my best here. Yeah, the more I do this I’m getting better. I watched the doctors do this so now I’m just trying to be just as good as them wrapping it. Mission complete.
NARRATOR: Almost all people with diabetes, 95%, are Type 2, like Monteil. The remaining 5% are Type 1. But what sets off the disease? Type 1 is genetic, perhaps triggered by a virus or other environmental factors. Type 2 is triggered by many factors: the person’s genes, their environment, getting too little exercise, gaining too much weight, eating too much unhealthy, sugary food.
LAURA GRUESER: Here in our little neck of the woods, you can just look around and see thatwe show love to each other with food. That's what we do. We get together, churches, baby showers, bridal showers, birthdays, we're always eating. When you come to our homes, we say "Come on in. Let me fix you something to eat." It's how we were raised. We don't get together unless there's food. And usually, it's not really good choices.
I'm Laura Grueser and I'm the community health worker, the lead, at the Meigs County Health Department. I was diagnosed as being pre-diabetic in 2012. I didn't understand really what the big deal was. It wasn't until I started doing all the research and I thought, "Why shouldn't I use this knowledge that I've got?” I can't teach somebody else to live a healthier life and come home and eat a bag of potato chips. That's not right. I can't do that." And so to live as an example for my patients, my husband and I made the final decision to really get on board and start eating healthier. I'm able to take that back to my patients and say, "It really does work. It's evidence-based. You really can do something about controlling your own diabetes." And then they feel like, you know, if she can do it, I can do this.
NARRATOR: Meigs County, Ohio, is in Appalachia, where diabetes rates rise well above the national average of 10%—as high as 15 or 16%. Most of the diabetes here is Type 2.
LAURA GREUSER: One of the big things in Meigs County is the pride of people here and independence. It's very, very hard for proud people to say, "I can't do this. I need some help." And so I tell them, "Please just give me three months. Give me three months out of your life, and listen to what I'm saying, and get with this program. If it doesn't work and you don't see any changes in three months, I'll leave you alone. And you can go on.” No one has ever done that. Statistics show that rural communities have a higher incidence of diabetes than more of a metropolitan area. And one of the reasons that surprised me was because there's not enough education out there to actually tell people something that I take for granted.
LAURA GRUESER: I'm going to actually score this one a little bit here. I'm making little bit easier maybe.
DENZIL ROBERTS: Cucumber.
LAURA GRUESER: I had a patient yesterday who had never…he nor his wife had ever had a zucchini. I've been going into their home for eight months. So yesterday they had zucchini for the first time. So that's kind of exciting to me.
It kind of does look like cucumber. doesn’t it? So, we're going to put it on high and cook it on high for four to six hours.
ENRIQUE CABALLERO: Type 2 diabetes is closely linked to the presence of overweight or obesity because the more fat we have in our body, the more release of substances that limit the ability of insulin to do its job. This is what we call the insulin resistance.
LAURA GRUESER: You can just look around and see that there are so many people who are suffering from obesity. So many people are walking around with a bottle of Mountain Dew in their hands. And I think that that's a cultural thing here for our community.
Are you in a good mood today?
DENZIL ROBERTS: Yup.
LAURA GRUESER: Am I going to have to get rough with you?
DENZIL ROBERTS: Yup. (laughing)
LAURA GRUESER: In pop. So now, knowledge is power. So now you can tell all your family this, too. So in one 20-ounce bottle of Mountain Dew, there are more than 18 teaspoons of sugar. So, that's what it looks like. When you're drinking a bottle of Mountain Dew, you're drinking that much sugar. Isn't that crazy?
DENZIL ROBERTS: Yeah.
LAURA GRUESER: And all pop is about the same.
LAURA GRUESER: Every time I do an intake, I always ask them, "What do you think caused your diabetes?" And it doesn't matter what their weight is or what their eating program is, it is always, "Because my dad had it" or "My mom had it" or "My aunt had it, my sister, or my brother." So, everyone feels as though "I might as well just give it up, because Dad had it and he died from it." So, when they're given that diagnosis, it's a very sad thing to witness.
DAN HURLEY: Nobody gets blamed for having cancer. But with diabetes, everyone asks, like “Hey, it’s your fault. Hey, why don’t you lose some weight?” Nobody says this to people with cancer, people with heart disease, to people with cystic fibrosis. They don’t blame the victims. It’s time to stop victim-shaming people with diabetes.
NARRATOR: Victim-shaming hurts people who are already struggling. Their body’s ability to balance blood sugars is impaired, and they have to re-set that balance every day with lifestyle changes and drugs.
LAURA GRUESER: How are you? I have missed you.
BONNIE RIFE: I'm okay. I couldn't get up.
LAURA GRUESER: I'm going to get your vitals real quick, okay?
ENRIQUE CABALLERO: So a good way for most patients with diabetes whether that's Type 1 or Type 2 to know what's going on with their blood sugars is to prick their fingers, this is what we call capillary glucose levels. In general, a level of 70 to 130 milligrams per deciliter before meals and less than 180 milligrams per deciliter after meals, two hours after any meal, is what we recommend.
BONNIE RIFE: Three-seventy-one, that's high.
LAURA GRUESER: That's high.
BONNIE RIFE: Well, if it gets under 200, I'm happy, you know. And it was 170 or something like that. And then next time, it was like 210, which, you know, that beats well over 300, which is what's it's been doing.
LAURA GRUESER: It does. We'll take baby steps. We don't care how we get there. .
BONNIE RIFE: You take the salt, the carbs, and the…
LAURA GRUESER: And all you're left with is a…
BONNIE RIFE: …sweets. You know, there's not much left that you can eat.
LAURA GRUESER: …just, you know, a brown paper bag or something.
BONNIE RIFE: And, Lord, I love to eat. I said, “There's a nice hay field out there I think about.” You know, I was raised on meat and potatoes and I just…
LAURA GRUESER: It's hard, isn't it?
BONNIE RIFE: Yeah, it is. It's hard.
LAURA GRUESER: It's hard to change that.
LAURA GRUESER: Bonnie, she has struggled. She has really, really struggled with the program. She loves to eat out. And as much coaching as I give her on what to eat, she really struggles with that.
BONNIE RIFE: I'm supposed to go next Saturday to Olive Garden to eat.
LAURA GRUESER: Okay. I know you love Olive Garden.
BONNIE RIFE: Love the chicken parmesan.
LAURA GRUESER: Yes, yes, yes. And you maybe want to ask them if they have the chicken breast that is not breaded. They may have a grilled chicken breast.
BONNIE RIFE: They may have.
LAURA GRUESER: That would be better.
I don't ever want to tell somebody "You can't have that." I want to be able to tell them "You really shouldn't have that, but here's an alternative for you,"
LAURA GRUESER: I hate it that you feel guilty about going out and enjoying yourself.
BONNIE RIFE: Yeah.
LAURA GRUESER: There are always going to be options for you.
BONNIE RIFE: It's a frustrating disease, I know that.
LAURA GRUESER: It is.
KELLY CLOSE: So one thing that people with Type 1 diabetes and Type 2 diabetes have in common is watching carbs. It's not just how much sugar you eat, like cake and candy. It's how much you eat that your body turns into sugar, which is anything that has carbohydrates.
LAURA GRUESER: Carbs in one cup of pineapple.
AUTOMATED VOICE: Twenty-two grams of total carbohydrate in one cup chunks.
LAURA GRUESER: Okay.
LAURA GRUESER: Carbs in bananas.
One of the things that we do in our diabetes education is we show patients how to read food labels.
So, one serving size is half a cup, and there are four grams of carbohydrates in half a cup. So, that's a good choice.
That gives them power over what they're eating, when they can make the choice, “Do I put it in the cart or do I put it back on the shelf?”
Here's one of the best things you can eat, the plums, because one plum only has eight grams of carbohydrates in the whole thing.
KELLY CLOSE: If you’re eating bread or toast or cake or pie, or any candy or anything with sugar, that has a lot of carbs. If you're eating lettuce or protein, that has no carbs. And then there is a long, long list in between, of how many carbs different foods have, and the better that you can keep track of it, the healthier you'll be.
CAROLYN CHAPMAN: I found out how much I didn't know about diabetes. I didn't understand about counting the carbs. I'm thinking, “Watch your sweets. Watch the sugar intake, your fried foods.” That all affects your diet.
LAURA GRUESER: So of those three types, which one's the best?
JOHN CHAPMAN: This one.
LAURA GRUESER: There you go.
CAROLYN CHAPMAN: We're learning, I should say, to eat differently.
LAURA GRUESER: They soak all of these fruits in sugar. Oh, my goodness. I can't even believe that you pick that up. That is evil.
JOHN CHAPMAN: We don't even want to talk about them.
LAURA GRUESER: Where to now? So even though it says "sugar-free," that does not mean that it's lowest in carbs.
One of my biggest pet peeves is with our labeling in the United States. If it says “sugar free,” my patients pull that off of the shelf, put it in their cart and think, “I can have 8 or 12 of these cookies because they’re sugar-free.” They’re not sugar-free. It’s not true.
The serving size is four cookies. And in those four cookies, there are 21 grams of carbohydrates. And it does have the sugar alcohols. It has sorbitol in it. There's "sugar free" in huge letters.
The game is rigged. Our labeling is done in such a way that it's almost a lose-lose situation, because people think that they're doing so well, but they're really not.
DAN LIEBERMAN: The average American eats about 100 pounds of sugar a year, which means that there are Americans who actually eat more than 100 pounds of sugar a year. We started off as hunter gatherers, which we were for millions of years. A hunter-gatherer, if he or she is lucky, gets about 10 pounds of sugar a year. So, we have an order of magnitude increase in the amount of sugar that's available to us. And we simply never evolved to handle that much sugar. A common phrase is that genes load the gun and environment pulls the trigger. Genes we inherit, and they change very slowly. But environments can change really fast. And what's happened is that we still have the same genes as our great grandparents or our great, great grandparents. But the environments in which we live have shifted rapidly, and our bodies are poorly adapted to those modern environments. And as a result, we're much more likely to get sick.
NARRATOR: As in Appalachia, in New York the food environment sets the stage for diabetes.
KAREN WASHINGTON: This is the tale of two cities. Here in the Bronx, we are surrounded by unhealthy food. We have the bodegas. You open the door and the first thing that hits you are the racks of cookies, and cakes, and candies, and sodas.
NARRATOR: By some estimates, New York City has 10,000 bodegas, small neighborhood stores that often sell only processed foods. In low-income areas, they can be the only place to shop – there are so few full-service markets.
KAREN WASHINGTON: And then you go into more affluent neighborhoods. And I walk into the store and there are the vegetables. Here are the healthy food options. But the question I ask is, why? Why does it have to be like that? Why don't people have access to food? Why is it that they can't afford whole fresh vegetables? Why is it that supermarkets, or the stores don't want to come into low-income neighborhoods? And so, people are now calling our community food deserts. And it’s like, wait a second. You're getting it wrong, because we do have food. What we don't have is healthy food options. We’re inundated with fast food, junk food, and processed food. And so, we need to speak about, the heart of the problem is that.
DAN LIEBERMAN: We live in this bizarre, modern environment for the first time ever in the history of any species. We have access to unlimited calories, but we still have those ancient cravings. We've created foods that are processed. We remove the fiber, so they go straight into our bloodstreams. You have all these incredibly energy-rich foods devoid of fiber, filled with sugar, It's astonishing the transformation that we've been able to create through industrializing our food. And it's that access to all that energy in those particular kinds of foods that underlies the recent epidemic of Type 2 diabetes. People didn't use to get that disease. But today, we get it because of this change in our environment.
KAREN WASHINGTON: In the Bronx, one of the number one diet-related diseases is Type 2 diabetes. Everyone knows a family member, a friend, a colleague who suffers from Type 2 diabetes, which can be prevented. My brother had Type 2 diabetes. My brother, at one time, was on like 30 different medications, I told him, I says, "Look, you have hypertension. You have heart disease.” I said, "We can work it together. We can do exercise. You know, we can change diet. We'll work it together." February 2010, that was it. He passed away. So, I firsthand know the effects of having a person with diabetes in my family, and it was my brother. I moved to the Bronx back in 1985. Across the street was an empty lot. And I see a man with a shovel and a pick. And he says, "I'm thinking about putting a garden." Woo, I was so excited. I said, "Oh, can I help?" I was so excited, because a garden? Wow. That would make the neighborhood really look good. When I first put that tomato seed in the ground, I was mesmerized, the fact that it grew on a vine. My relationship to a tomato was that it was in a store. I took it off the vine and I bit into it, and it just changed my world. Taste of sunshine, of juiciness, of sweetness. I just was so enthused that I wanted to grow everything. And this year, we are celebrating 30 years from an empty lot full of garbage to, now, a community garden which is the glue of this community.
Hi, girls. Are you all hungry? No fighting. So after it rains, I like to come in and dig because it brings up the earthworms.
WOMAN: Oh, yeah. Wait till you find more out about what happens in this garden. You'll be, like, "I'm happy all the time."
KAREN WASHINGTON: Hi. Hi, everybody. So, I'm the farmer here at the Garden of Happiness. How many people eat food?
KAREN WASHINGTON: How many people eat healthy food?
KAREN WASHINGTON: What are you not allowed to do?
CHILD: Eat junk.
KAREN WASHINGTON: Excellent. Eat junk, okay. And so, we're talking about junk. What's junk?
CHILDREN: Candy, burger, chocolate...
KAREN WASHINGTON: Exactly. And so you know what happens when people eat a lot of stuff with sugar?
CHILD: You could, like, get, like... You could get…
KAREN WASHINGTON: Diabetes. That's a big word, diabetes. Come on, let's go see the chickens.
KAREN WASHINGTON: If we're going to go see the chicken, we got to make chicken noise, like...
In the garden, I just want people to understand where their food comes from. We are surrounded by fast food restaurants. But in the garden, we have a choice to be able to grow healthy food options.
What should you eat to help with the diabetes?
CHILD: Healthy food.
KAREN WASHINGTON: Healthy food. And do you see healthy food in the garden here?
KAREN WASHINGTON: Where's the healthy food in the garden?
CHILD: Over there.
KAREN WASHINGTON: Over there?
CHILD: Over here, over there, over there.
KAREN WASHINGTON: Over here with the chickens?
When you're starting to see adult onset diabetes in children, then that's an alarm that needs to go off. This is directly related to diet.
ANTHONY HATCH: It’s very important for communities to understand that diabetes is not some predestined effect of being black. Our genes do not work in a vacuum, they always only ever do what they do in a given environment. So we have got to turn back and look very carefully at the environments that we live in and how they are built, how they are structured to create inequity.
KAREN WASHINGTON: I live in a community with limited access to growing food. I live in a neighborhood whereby I'm still marginalized because of the color of my skin. I need to be actively engaging on breaking down those barriers and working on some of the injustices that I see.
NARRATOR: Karen estimates that thousands of children have come through the garden, setting them on a better path to health. And the garden has joined a weekly farmers’ market, to provide fresh vegetables to the community.
Okay. All right, it's time to go to the market. All right.
One thing that the community takes pride of is we're at their service.
And I have plums.
No one goes away hungry. We never turn away anyone. Someone comes in, "Miss, I'm so hungry. I haven't eaten. Can I have an apple?" What are you going to do? Because for people to come to ask for food when they are hungry, they're at their lowest. And so, our farmers market has been that type of market for the community, giving people back their dignity, making sure that people understand that this is their market.
WOMAN: Those tomatoes, how do you eat them?
KAREN WASHINGTON: Just slice them.
WOMAN: You do, and eat them regular?
KAREN WASHINGTON: Just eat them regular.
WOMAN: I want to live a little longer.
KAREN WASHINGTON: Have a blessed day.
WOMAN: You too, darling.
KAREN WASHINGTON: This is what I’m up against.
ENRIQUE CABALLERO: Where good food is not available, then the incidence of diabetes goes up. Type 2 diabetes affects racial and ethnic minorities at a higher rate. In general, Native Americans, African Americans, Latinos, Asian Americans have a higher rate of type 2 diabetes than the white population.
MONTEIL LEE: I used to think only old people got diabetes. Now I'm seeing more of the younger kids such as myself and people even younger than me.
NARRATOR: Monteil is struggling to get his diabetes under control. He’s not making much as a musician, especially since he has to stay at home. That makes it hard to buy healthy foods. For now, to save money, he’s living with his aunt. But he knows he still has a chance to save his infected toe. And he has another advantage.
DR. DEAN SCHILLINGER: The other thing about Montel is that he doesn't fit the stereotype, a stigmatized stereotype to be clear, which is Type 2 diabetes happens in people who are obese, who are overweight, and don't exercise. But he's thin. I mean, you wouldn't look at him and say, this is a guy who's got Type 2 diabetes, or this is a guy who's even on the path to Type 2 diabetes, but we are seeing this more and more. We see a lot of people who are thin who have Type 2 diabetes, and I think his upbringing in terms of the added sugars that he was exposed to, that could overwhelm any system. And so I think the image of a thin person with Type 2 diabetes is going to slowly become one that we become more and more used to.
WOMAN: Okay, Mr. Lee we’re going to go ahead and check your sugar now. So, Mr. Lee, that’s 428. And you said you didn’t eat nothing, right? Doctor should be with you shortly, okay?
DR. DEAN SCHILLINGER: All right, talk to me now about how you’ve been doing because I saw you what maybe like 10 days ago.
MONTEIL LEE: I’ve been doing a lot better.
DR. DEAN SCHILLINGER: Oh good. What does that mean, ‘doing better’?
MONTEIL LEE: A lot better. I’m chilling at the house feet up watching TV.
DR. DEAN SCHILLINGER: But you cannot put any weight on the foot, okay? That’s just like completely prohibited. Not for me, you know, for you. Okay, we’re going to get some scissors here and we’ll do that.
MONTEIL LEE: Yeah, this is my platinum wrapping right here.
DR. DEAN SCHILLINGER: That’s a good job actually. You did that?
MONTEIL LEE: Yep, all by myself.
DR. DEAN SCHILLINGER: All right, man. He was hospitalized. They were actually going to amputate but he managed to avoid it.
DR. DEAN SCHILLINGER: And now the question is, you know, is this thing going to close? The big reveal. Do you want to lie back or you’re good?
MONTEIL LEE: I’ll sit back.
DR. DEAN SCHILLINGER: You can be as comfortable as you want to be. All right, this is the area right here. You know, this is looking damn good.
MONTEIL LEE: So you know I’ve been trying to stay off of it, right?
WOMAN: That’s great. That’s the best treatment.
DR. DEAN SCHILLINGER: This is looking, like, this was wide open.
DR. DEAN SCHILLINGER: The thing has closed up.
DR. DEAN SCHILLINGER: It’s closed up.
MONTEIL LEE: Is that right?
DR. DEAN SCHILLINGER: I mean, like, can you sit up here? This is all healed. Look. Am I right?
WOMAN: Yeah, that looks beautiful. That’s fantastic.
DR. DEAN SCHILLINGER: Who needs the home nursing when you’ve got you? This is fantastic. All right, this is really exciting You were down, remember you were down in the second half, but you were coming back to the fourth quarter, you’re Aaron Rodgers, whatever, you are at the 10-yard line with 13 seconds left to go. You’ve got two plays. You’re in the scenario and you can make the right choice or not. And so you’ve been making the right choice, just make it even better. I think if you do what you’re doing and keep that foot up and do not take out the garbage, do not help out with that stuff, this is going to close. You’re super close.
NARRATOR: “Super close” is not all the way home, and Monteil knows it.
MONTEIL LEE: The doctor was telling me just one little small anything could cause another infection, possibly amputation. That’s what I’m trying to prevent.
NARRATOR: Nicole is also trying to stay healthy. And for her, as for Monteil, the stakes are high.
NICOLE: My doctor had said, “You’re going to go blind.” And in my mind, I was like, “I’m not going to …” I didn’t want to go blind so I started taking care of myself. I have an endocrinologist, my diabetes doctor. I have a kidney doctor, I have a retina specialist and an eye surgeon. I have all these doctors.
NICOLE: Okay, so I’ll see you in three months.
DR. HARRIS: Sounds good.
NICOLE: Okay. Thank you.
DR. HARRIS: Thank you.
NICOLE: I feel like a professional patient because all I do is go to the doctor.
ANTHONY HATCH: I’ve had Type 1 diabetes for going on 27 years. The only guard against long term complications was to stay on it and be vigilant. And that, that, honestly over all these years, that hypervigilance has its own emotional effect, the exhaustion of having to constantly be aware of what your blood sugar is doing, all those concerns never really go away.
NICOLE: There has been regret and shame and feelings, right? Because in my mind I’m just like, “Oh, why I did this to myself?”
NARRATOR: To find a supporting community to help with her feelings – and to offer her help to others -- Nicole has turned to social media.
NICOLE: I think diabetes can be a very lonely disease. Social media connects me to other people that are like me.
SOCIAL MEDIA: Hi, Happy World Diabetes Day. My name is Nicole, and I am 35 years old. Currently I am listed for kidney pancreas transplant.
The more I was posting, the more messages I would get.
SOCIAL MEDIA: The best way to deal with diabetes complications, prevent them, to begin with. This stuff doesn’t have an end date, it keeps going. This is why I desperately want a double transplant, kidney and pancreas.
SOCIAL MEDIA: If you have diabetes, please get your eyes checked, please check your blood sugars, please do what you need to do so that you don’t end up in this situation.
Even if I can help one person by sharing my story and showing them what this looks like then it’ll be worth it because, like, I already know it’s cut years off my life so…
ENRIQUE CABALLERO: When you are diagnosed with Type 1 diabetes as a teenager, this is a difficult time in life for everybody. Ironically, someone could be diagnosed with diabetes much earlier in life, but because they have the support from their parents and their families, they could have very good control.
TOBY MILGROME: You make the rice please? The red hot chili. And I'm just going to see how it's going here. All right, give it a stir. There you go. All right, there you go. There's the carbohydrates.
ED DAMIANO: And so, David, we need to check on the blood sugar situation.
TOBY MILGROME: Oh, yeah, you want to check yourself beforehand?
ED DAMIANO: Where's the Dexcom?
ED DAMIANO: David was an infant when he developed Type 1 diabetes.
ED DAMIANO: Daddy came to the rescue. Daddy came and got you. Hello, Baby David, Do you want some?
He was about 11 months old, and my wife, Toby, was a young pediatrician at that time, and so she had a really keen eye for problems in children.
TOBY MILGROME: One thing that had happened, which was quite scary, is I'd went to get him out of the car seat, and when I went to get him, he was just kind of staring, you know, vacant, eyes open but vacant. I mean, it's very alarming, very unusual behavior.
ED DAMIANO: So she brought him in to clinic, his blood sugar was 800, which is eight times the normal blood sugar level. She collected him, put him in the car, raced out the door and said, you know, “David has diabetes and our lives are changed forever.”
TOBY MILGROME: When your child is diagnosed with diabetes as an infant, you have to do everything. Diabetes care is 24/7. It does not take the night off.
TOBY MILGROME: David is going to be one year old in a few days, and two days ago he was diagnosed with diabetes.
ED DAMIANO: The task was upon us to manage his blood sugar levels. We really had two tools at our disposal: we had insulin and we had glucose, sugar basically, carbohydrates, which is in foods like fruit, juices, so foods that would raise blood sugar, carbohydrates, we would use to keep his blood sugar from going too low. And then insulin was delivered to bring his blood sugar down. So these things are working to oppose one another. And the reason you need the carbohydrates, is because you can very often overdose insulin just a little bit. But even a small amount of insulin can be lethal.
ED DAMIANO: We were injecting him with insulin with a needle probably seven times a day, and then we were checking his blood sugar fifteen times a day. That's how we started. When we checked his blood sugar we used his fingers and his toes, so if he was playing with blocks in the middle of the room, I'd come up and I'd poke him in a toe. We had bruises up and down his arms for those first two months when we were giving him injections, and that was something that really was hard for us to see. You're constantly in this tension between high blood sugar and low blood sugar because neither extreme is acceptable.
TOBY MILGROME: There was so much work to be done. And so all of my faculties were focused on taking care of this little boy. I guess with my training, it was just too hard to think about, that he would be compromised because I didn't do a good job. And with Ed's personality, that wasn't going to happen.
ED DAMIANO: And I just thought that was not a tenable situation for a kid this age.
ED DAMIANO: You're kind of plummeting. This is a guy in free-fall. This is his glucose level over the past, roughly, three hours. You can see the fact that he's going down, it means that if he weren't about to eat, he could go low. But fortunately, we're going to be feeding him with rice and things that will make him go higher.
DAVID DAMIANO: Sure. So, I put the test strip in the meter, I draw up some blood...if it works. I just scoop up a little into the test trip, and... 104.
DAVID DAMIANO: Ready? Go.
ED DAMIANO: Come on, let's go get him.
DAVID DAMIANO: I would tail it down.
ED DAMIANO: The scariest prospect that we as parents face is this phenomenon called dead-in-bed syndrome. With people with Type 1 diabetes, there's a small number of people who go to bed at night and then they don’t wake up.
And there's good evidence for this being a result of very seriously low blood sugar while they're sleeping. And so someone goes to sleep at night, they've a little bit too much insulin on board, they go to bed and their heart stops.
… flattening out around 75.
We can take good care of David, day and night, 24/7, seven days a week, but what happens when he goes to college? I wouldn’t be there, my wife wouldn’t be there to manage his blood sugars for him, or to help him take care of his diabetes.
And that overriding concern, worry, and a fear that I had, that really inspired in my mind the idea of building a bionic pancreas, a system that would basically take care of his diabetes for us in our absence automatically, better than we could and more safely than we could.
I like that idea.
The fact that Toby is a pediatrician, I was an engineer, that's really what started us down that path.
NEWSMAN: A dad's invention to save his diabetic son could change the lives of millions of people with diabetes. It is today's big idea, Ed Damiano developed the bionic pancreas.
NEWSWOMAN: How confident are you that your dad can meet this goal and make this deadline to get you off to college safely?
DAVID DAMIANO: I don’t doubt that he can do it, it's definitely very challenging, but if anyone could do it, my dad could.
ED DAMIANO: Type 1 diabetes prior to the discovery and purification of insulin was a death sentence. It was a more grave diagnosis than cancers. Basically, what would happen is people would waste away, they’d lose all their muscle mass and then ultimately they would just die. And so insulin in itself is not a cure, but it’s an extremely valuable medicine.
DAN HURLEY: It wasn’t until the early 20th century when insulin was finally discovered. So, Fred Banting hooks up with Charles Best at the University of Toronto and they started animal experiments. They finally figured out how to take a pancreas from a cow and extract the insulin.
VIKAS SAINI: At that time it was crystal clear that this was a huge discovery that would save millions of lives and it was crystal clear that you could charge whatever the market would bear. And Banting and Best were very concerned that people not be gouged. So, they went to the University of Toronto, they arranged for the patent, and then the patent was sold to Eli Lilly for $1. And what they said was, “We don’t want this to be a money maker for us. We want to make sure that insulin is affordable for everybody who needs it.” Now, that was in the 1920s.
NARRATOR: A half-century later, insulin costs were still quite moderate. A Type 1 diabetic might spend around $200 a year on the drug. Then the price of insulin began to rise… rapidly..
NEWS REPORT “Diabetic Sticker Shock” chart: “More than 29m Americans live with diabetes and for some 6 million of them, insulin is a life or death medication. Between 2002 and 2013 the price more than tripled to more than $700 per patient.”
VIKAS SAINI: In the last 20 years, the price of insulin has gone up tenfold.
ANTHONY HATCH: It is among the most expensive medicines that are required to keep people alive. If you don’t have health insurance, you cannot afford insulin in this country right now. It’s just prohibitively expensive.
NARRATION: Without insurance, some patients report spending $1,000 or more each month on insulin. For people who can’t afford that, the consequences may be deadly.
BRITTANY SMITH: Alec had this smirk that just kinda lit up a room and in pictures, you can’t help but notice it.
JAMES HOLT: He was so little.
NICOLE SMITH-HOLT: It was Animal Kingdom.
Alec was an amazing person. He was a jokester, he was always pulling pranks on somebody or doing something goofy to make you laugh or smile.
NICOLE SMITH-HOLT and JAMES HOLT: Halloween.
BRITTANY SMITH: Look at that.
NICOLE SMITH-HOLT: Yeah… So Alec just before he was turning 24 was feeling like he was getting sick. They had diagnosed him on the spot with Type 1 diabetes.
ALEXIS HOLT: I remember him crying initially. He was really strong and then he kinda broke down and he realized, you know, being a diabetic he had to completely change.
NICOLE SMITH-HOLT: You know, with him being 24, an active young man, I thought, “How’s he ever going to manage this? He’s going to have to change his lifestyle, he’s going to have to change basically everything, his eating habits.” But he did well. He adjusted really well. I was surprised. December of 2016 he accepted a job promotion.
ALEC: Walking in the house. And this is my crib.
NICOLE SMITH-HOLT: He was going to have a steady income, he was going to be able to afford living on his own.
ALEXIS HOLT: I think Alec was very determined to do right by my parents and show them that they’ve raised a young man, a hardworking man that could take care of himself.
NICOLE SMITH-HOLT: He turned 26 so he was no longer eligible to be under my insurance policy. When he went to the pharmacy the first time to pick up his insulin without my coverage his bill was $1,300. He didn’t have $1,300 in the bank so he left the pharmacy without his insulin and started rationing what little bit of insulin he had left hoping to stretch it out until payday. He didn’t tell any of us that he was doing this. I think he was enjoying his freedom of living on his own for the first time so I think that’s why he didn’t ask for help. I don’t think he knew that not taking the required amount of insulin would lead to death. It was absolutely horrifying.
JAMES HOLT: This is hard. I just miss my son. I think we all would do anything to get our son back, our brother back.
BRITTANY SMITH: That week and after that moment I mean it changed us all forever.
NICOLE SMITH-HOLT: It still really sometimes doesn’t feel real. It feels like maybe Alec is just on vacation and then there’s moments where I wake up and I’m like, “My son is gone. I’m not going to see him anymore.”
KELLY CLOSE: There shouldn't be any question about whether insulin is a human right. It obviously is. Everybody in the world should have access to exactly how much they need. And if you can't pay for insulin, you're back where we were before Banting and Best: you die.
BRITTANY SMITH: So, this is the memorial garden that we created in honor of Alec. And we will keep fighting in his honor, in his memory.
VIKAS SAINI: Imagine yourself being a citizen in a town in the desert where there’s no water for hundreds and hundreds and hundreds of miles and the only way you can get water is by going out and purchasing it. Imagine if there were a handful of companies in that town that were selling water and they had a monopoly on water. Well, the entire community of people with diabetes is in that boat. In 1996 insulin cost $21. Twenty years later, it cost $255 or more. You have to ask yourself, “Why has the price been going up?” So what you get is pricing that reflects the power of the people selling the product and the lack of power of the people who absolutely need the product. The pharmaceutical companies, the big three that manufacture insulin—that’s Eli Lilly, Novo Nordisk, and Sanofi—if you look at the reported revenues from these companies on their insulin products now globally, they’re up in the tens of billions.
REPORTER: You still hear story after story of patients who are rationing, who are harmed because they can’t afford their insulin. How do you make sure every patient gets the medicine he needs?
DAVID A. RICKS, CEO Lilly: We’re deeply bothered by that. The facts you lay out are true. The list prices have gone up. Our net pricing is basically flat since 2009. Where’s all that money going in the middle? It’s going to negotiators in the middle, but not to patients who are increasingly subjected to the list price. And they have to make choices like that that they shouldn’t have to make.
NARRATOR: “Negotiators in the middle” refers to Pharmacy Benefits Managers, a key part of the drug pricing system. As the insulin manufacturers explained to Congress, they set the list prices for insulin. But then Pharmacy Benefits Managers negotiate rebates that are supposed to lower consumer costs.
DOUGLAS J. LANGA (Novo Nordisk): Despite the investment that we make in rebates, some patients, including those with insurance, end up paying list price or close to it at the pharmacy counter. As a manufacturer, Novo Nordisk has no control over what insured patients pay at the pharmacy counter. So despite these ever-increasing rebates that we pay patients don’t get the full benefits of those rebates at the pharmacy counter. This needs to change.
KATHLEEN W. TREGONING (Sanofi): Patients are rightfully angry about rising out-of-pocket costs for many medicines, and we all have a responsibility to address a system that is clearly failing too many people.
NARRATOR: All three of the manufacturers blamed the system, not their list pricing.
VIKAS SAINI: So everybody's pointing fingers, and in that environment it's easy to point a finger at the PBMs, the pharmacy benefit managers, because they've got plenty to answer for. But the same is true of the pharmaceutical agencies.
NEWS REPORT: Eli Lilly tonight is planning on selling a cheaper version of its top selling insulin Humalog. The drug maker hopes this will ease the financial strain for patients. But an advocacy group says much bigger changes are needed.
NARRATOR: The manufacturers, under public pressure, have supported programs to cap insulin costs. But they’re not available to everyone. And people without insurance, like Alec, may still pay full list price.
VIKAS SAINI: Pharmaceutical companies. It’s their product, it’s their price, and it’s their customers that are dying because they can’t afford their product. That makes no sense and I think it’s a matter of responsibility. Own up to what’s going on. People who have no insurance, all sorts of people fall through the cracks. These are casualties of a broken system.
NARRATOR: In a broken system, it’s even harder to follow the rules.
MONTEIL LEE: Yeah man. I mean, it feels great to be back in the studio, active, working on good music again. Got some good news from the doctors saying I'm healing right, everything's coming along. here I am with Dr. Schillinger all excited, talking about man, it looks like everything is closed up! And we felt a little bit of an opening still but like he said, it's 80% to 90% closed back so I'm not 100% but I'm getting close. So it's definitely a great feeling to be able to be back doing what I love.
MAN: You better hope he doesn't see this video because you've been standing up this whole time.
MONTEIL LEE: Yeah, I know, man. I'm a get in trouble, but at least he can see I'm doing something positive and enjoying myself while I'm doing it.
MONTEIL LEE: When I'm at the house, doctor's orders to stay off my foot, so it's like a bed rest thing. It's been challenging, very challenging. I'm kind of like having that type of tug of war with wanting to be on my feet but having to stay off of it, you know. So it's been a challenge but I'm maintaining, staying prayed up and I've been getting blessed.
MONTEIL LEE: Hi, son.
MONTEIL JR: Hi.
MONTEIL LEE: How are you?
MONTEIL JR: Good.
MONTEIL LEE: How was school today?
MONTEIL JR: Good.
MONTEIL LEE: My son his name is Monteil, he’s a junior, has my whole name. His nickname is Lil Money, everybody calls him Lil Money.
What’s up, fella?
MONTEIL JR: What’s up?
MONTEIL LEE: Not much. Daddy just chilling. What’s wrong?
MONTEIL JR: I was praying that you wouldn’t have to get your toe cut off. And my prayer came true.
MONTEIL LEE: Yeah, see. I was scared. Daddy glad you was able to pray for me too because I was scared because that’s what my main worry is for you to do good in school.
MONTEIL JR: And play sports.
MONTEIL LEE: And also take care of yourself.
MONTEIL JR: And then follow my dreams.
MONTEIL LEE: Yeah, and to take of yourself because health is wealth and daddy don’t want you to be sick like me with this disease that I’ve got so you got to …
MONTEIL JR: I’m not eating too much sugar.
MONTEIL LEE: My son, I love him to death. He’s like my whole world. So I’m talking to him about not eating so much candy and the sweet stuff that could build up and might make you feel good now but affects your body later type stuff, so he’s learning.
Let’s see your daddy make one. Let’s see if I still got it. Uh-oh, too short. Ahh...
So, he’s kinda alert now to what’s going on.
Look at that! I’m flat, son, there I go.
DR. DEAN SCHILLINGER: Monteil at really the prime of his life, at the age of 36, almost 37, he’s facing a really big challenge which is, is he going to lose his foot?
MONTEIL LEE: Look, here's the famous guy.
DR. DEAN SCHILLINGER: You feeling me? Hey, buddy.
MONTEIL LEE: How you doing, Doc?
DR. DEAN SCHILLINGER: Good to see you. Tell me about...the last time, we talked about the insulin, right?
MONTEIL LEE: Yeah. I need more pens, too, and I think I just dropped the last two I had in my Uber, when I jumped out.
DR. DEAN SCHILLINGER: Oh, that's not good. That's not good because they're not going to fill that. Because that's expensive. But we'll try. Just to be frank with you, I love you, but we didn't make any progress since the last visit. You didn't pick up your cholesterol medicine...
MONTEIL LEE: Yeah, I know.
DR. DEAN SCHILLINGER: ...you didn't change your insulin. I'm not scolding you.
MONTEIL LEE: I know.
DR. DEAN SCHILLINGER: What I'm doing is just saying reality.
MONTEIL LEE: I'm thinking about personally just changing my diet. I was about to fast for 30 days.
DR. SCHILLINGER: What do you mean by fasting?
MONTEIL LEE: I'm trying to just...water and juice.
DR. DEAN SCHILLINGER: Okay, so that will kill you. That's off the table, okay? And this is...
MONTEIL LEE: That's going to kill me?
DR. DEAN SCHILLINGER: Yes, that will kill you. And I'm not joking. You have diabetes, okay? You need to be on insulin. Your problem is the kind of food you're eating.
MONTEIL LEE: Yeah.
DR. DEAN SCHILLINGER: But I think that's partly because of the income problem you have, too.
MONTEIL LEE: Yeah, right.
DR. DEAN SCHILLINGER: So what I would say is let's get you some food and some income, and then you can make some better choices around things that will actually make your body healthy. But I pray you don't fast. We want you making slow and careful adjustments at the right time and the right way. Okay?
MONTEL LEE: Okay
DR. DEAN SCHILLINGER: Don’t go be on a superhero on that…
MONTEL LEE: No...no…I’m not. I remember a lot of days I was just, like, ready to give up.
DR. DEAN SCHILLINGER: I know you were.
MONTEIL LEE: Then I was like, I can't give up. I had a talk with my son that kind of tripped me out, just to let me know that it's on his mind as well as mine.
DR. DEAN SCHILLINGER: Mm-hmm.
MONTEIL LEE: When I see that he's concerned, it just make me want to fight harder. Pretty much.
DR. DEAN SCHILLINGER: I was asked a number of years ago to serve in a public health capacity for the California Department of Public Health to direct the diabetes prevention and control program, and it was a very challenging job.
SCHILLINGER ARCHIVAL: We need to spend less on healthcare and more on the social determinants of health that disproportionately affect minority communities. The health field has to talk more about healthy food access.
Whenever I tried to take the step back and look at the bigger picture that was causing the Type 2 diabetes epidemic, the food systems, the poverty, the food, and insecurity, when I tried to bring these things up with policymakers it was glazed eyes and I was doing it until I was blue in the face. And it was then I realized that maybe it’s just I’m not the guy to be transmitting this information because clearly, it’s not effective. Maybe I really need to turn to the community and identity community spokespeople who could be powerful voices for change from within. And that realization really led to the creation of what’s now called The Bigger Picture Campaign, which is a collaboration with youth of color, poets who really tell the story about the bigger picture behind the Type 2 diabetes epidemic.
EJ WALLS: So try to jot down any last minute stuff you’re thinking of…. Raise your hands, how many people know somebody Type 2 diabetes… 5, 6, 7 out of 8, that’s like 90+% of the room.
EJ WALLS: The art of being able to illustrate the urgency of an issue through words in a way that like people otherwise wouldn’t be able to hear it or process it is really important, and I think that it’s an opportunity to like turn heads to the issue, Type 2 diabetes, in the way that like hasn’t necessarily been done.
DR. DEAN SCHILLINGER: So, I’m a primary care doctor at San Francisco General Hospital, taking care of a lot of people with Type 2 diabetes. And it used to be that the only diabetes kids have was Type 1. Like if you ever said I got a kid with type 2 diabetes with your doctor they would be like “Wow write that up for some amazing journal this is such a rare thing.” We now see among youth of color, the majority of new cases of diabetes are Type 2 diabetes.
WORKSHOP STUDENT: How does it impact children and young people in a daily sense? Like, does it create other health issues, does it affect their lifespan? I’m just wondering what are the like…
DR. DEAN SCHILLINGER: Having diabetes?
WORKSHOP STUDENT: Yeah.
DR. DEAN SCHILLINGER: We’ve discovered that Type 2 diabetes in a young person is more aggressive than in an older person. And what I mean by that is you get the complications of diabetes, the consequences of it a lot sooner and a lot more frequently and you just go from head to toe. You can have strokes, blindness. Keep going, tooth decay, tooth loss, need for dentures early in life. Heart attack. Number one cause of heart attack, diabetes. Kidney failure, dialysis, And then numbness in your feet which leads to amputations. It’s like hundreds of thousands of amputations a year in the United States from diabetes. It’s insidious and slow progressive. So, it’s nasty stuff.
WORKSHOP FACILITATOR: So, we’re going to transition to like 10 minutes of writing.
MAN: So, what do you reach for when you’re hungry and/or what reaches for you?
WOMAN: Oh, wow.
MAN: Today, anyone would like to share, bless us with some words?
GRETCHEN CARVAJAL: Okay, you guys are staring at me.
When I’m hungry the first instinct isn’t to eat
but to ask myself if I need to
as if my body wasn’t calling out to me.
Being hungry feels like...
So, the Bigger Picture project is a collaboration between Youth Speaks and Dr. Dean Schillinger in which we do workshops based around health and food accessibility with our young folks with poetry. So, it sounds a little, like, disconnected but it’s really crazy how connected it is. Your relationship with health is also your relationship with your community, your relationship with health is also your relationship with your family and with your body, and how poetry will help.
WORKSHOP STUDENT: But the Bigger Picture is counting quarters to make ends meet.
It is choosing between rent and this month’s groceries.
It is my mother turning government beans into memory of homeland.
It is her strict hand keeping soda cans out of our fridge
knowing what a fountain of sugar can make of our insides.
GRETCHEN CARVAJAL: I want to be able to eat without second guessing
Without thinking about smaller version of myself
Without thinking about food as a weapon or a setback.
I want to be able to be hungry and eat
Without feeling like I’m killing myself.
My body is a landmine of insecurities
My bloodline a generation of curses
a system that nobody has been able to break.
When I’m hungry, I think about
the bodies of women in my life, serving and eating last.
DR. DEAN SCHILLINGER: I really like the line when you said, “Food is a weapon.” What did that mean to you?
GRETCHEN CARVAJAL: Yeah, like all the intersections of my identity, food is a weapon. As a Filipino and somebody from the East Bay who doesn’t have the access, that’s like a direct threat but it’s hard to grasp like, “What does that violence look like?” And it’s like, it looks like my whole family having diabetes and my mom having glaucoma because of her high blood sugar and, like, it looks like this and this and this. You know? But it’s like for people who don’t go through that and don’t have, it’s like, “It’s not even that bad. All you have to do is do those minuscule choices,” when it’s like you literally don’t have those choices sometimes.
I moved to America in 2001. This is peak early 2000s, second grade, Halloween. Trick or treating was like a brand-new experience for me which was like, “Oh yeah, you’re going to go around and people are going to leave free candy.” And I was like, “What the ?” As a seven-year-old coming from a Third World country and getting free candy I was like, “Yo, I’m so down for America right now. This is tight.” Diabetes runs in my family through my mother’s side. Her mother had it, her sister had it as well, and then my mother has it too. And now my older sister has it as well.Filipino food is like so good, but it’s also like, yeah, just a mix of a lot of different struggles we have been through.
ENRIQUE CABALLERO: Diabetes is definitely a family affair. Food is at the center of our social gatherings, our celebrations. I think it would be, honestly, not only impossible but irresponsible to ask someone to totally forget about their traditions and their foods. Imagine telling someone not to eat rice at all. In many cultures, that would be impossible. But how about saying, "Well, there's the correct amounts of rice that you can have in your meals, there's different options in terms of the type of rice that you can bring to your table." That may be doable.
GRETCHEN CARVAJAL: I think my family avoids talking about diabetes because they know it’s a problem that they have to address. A cycle of not being concerned about your health, like I think that, a big cycle of my family. These things could be inevitable, but they are the things that are also preventable. When I think about ending the cycle of diabetes, it’s always going to be my family.
DR. DEAN SCHILLINGER: Hi, this is Dean. Dr. Schillinger. There's been some confusion around your insulin. They keep changing the brand name of which insulin your Healthy San Francisco health plan will cover. But I want to make sure that that you did get it and that you did pick it up and that you are using the insulin as we have, you know, in the way we discussed in the last visit.
So, frankly, I'm, I'm kind of worried about Monteil. We set things up for him, you know, in the hopes of him succeeding and avoiding an amputation. I think he's done a great job of basically trying to avoid sugar sweetened beverages, which is, you know, the big thing that got him in this problem to begin with. To a large extent, you know, the health system hasn't made it easy for him. First of all, he's been having problems getting Medicaid. The forms are very hard for him to complete. Then it’s quite challenging to take the kind of insulin regimen that he takes now, which requires four injections a day. So, the best that I can tell, he's been doing that. And so he's trying to tackle both his personal choices and simultaneously improve the environment in which he has found himself in since childhood.
NARRATOR: Many people with diabetes struggle with the same complex problems as Monteil. But they can also manage blood sugar with remarkable new tools that no one even imagined a few years ago.
DAN HURLEY: Technology is getting us where biology hasn't gone yet. When I developed Type 1 diabetes in 1975 there was no such thing as doing a finger prick test to find out what your blood sugar was. It was a big deal when in the early ‘80s this became available. People could get a little drop of blood, put it on a little strip, and voila, there is your sugar level. This was a huge breakthrough, then the insulin pumps soon after. People say, “Why do you need an insulin pump? Can’t you just take injections?” Yes, but when you take that injection then you're taking the insulin and it's starting and going for hours and hours, and the pump allows you to release like your body does a little bit every few minutes and it gives you just what you need as you need it.
NICOLE: I have the pod and it also comes with a needle
I have been on an insulin pump for 16 years.
I turn it around, and I am going to fill it with insulin. So this is what the insulin comes out of it. A needle does go into my skin, but then it retracts, and all the left is in this little tube. Okay, now it’s in. And that’s it.
NARRATOR: The next big step in technology was the continuous glucose monitor, which measures blood sugar every five minutes and transmits the information.
DAN HURLEY: And I can take my phone and check what my blood sugar levels. Let's see. Let's take a look. It's 101. It's perfect. But this would have been a crazy fantasy even 10 years ago. There was no such thing.
NICOLE: My continuous glucose monitor is by far my favorite way to manage my diabetes, and it’s what makes me feel the safest. And then my mom is also on what they call the share app, and so she is able to get my blood sugar too. So, if I went dangerously low and passed out in the kitchen, and she got an alert, she could send paramedics. These things keep me alive.
DAN HURLEY: The next step for diabetes is connecting this monitor with my pump so that the two talk to each other, and it controls my pump and decides how much insulin I need without me having to think about it all day. And that would be essentially an artificial pancreas.
NARRATOR: It’s what Ed Damiano and other scientists have been working towards for decades.
ED DAMIANO: The bionic pancreas really builds on the shoulders of, really, decades of technology development in medical devices. It comes from the synthesis of continuous glucose monitors, from insulin pumps, from smartphones, and it's the integration of those three technologies that makes a system which is really better than the sum of its parts. It’s basically got automated decision-making software that determines how much drug to deliver to the person with Type 1 diabetes every 5 minutes. It makes 288 decisions every day that you no longer have to make.
ED DAMIANO: So, David is a teenage boy. Now, I was a teenage boy so I know where of I speak. And teenage boys are not human. Teenage boys are highly complex multicellular organisms at best. They’re a disconnected mass of excitable cells but they’re a danger to themselves. As I was many times over again. David once nearly stabbed himself with a toothbrush. Imagine that for just a moment. All of the worries and the fear of Type 1 diabetes and we almost lost him to stabbing, self-stabbing by a toothbrush. I feel like as long as he’s with us he’ll be safe, but the worry is when he leaves home, when he’s on his own, when he’s in college and he’s got to check those blood sugars at night. Will he wake up at night? Will he wake up to see another day? We cannot, we must not get that phone call. The bionic pancreas is a sturdy bridge to a cure…
DAN HURLEY: I'm glad to see Ed with other people all in a race to bring the artificial pancreas to the market because the more players, the better the odds that someone will come up with the right system.
KELLY CLOSE: The race for the “best” closed loop system -- are you kidding? The “best,” I mean, the best is going to depend on what do you need or what do you need or what I need, right? It's not the right question to ask at all, because it's not going to be just one system. We want many, many closed loop systems to do well, and they're going to do well.
ED DAMIANO: So where we are with the bionic pancreas right now is we’re in the midst of doing out-patient feasibility studies. You do those studies where you can start to learn what works and what doesn’t, and then revise it and you try again.
ED DAMIANO: Alex, how are you?
ALEX BEIRWAGEN: Good.
ED DAMIANO: So, what are you studying?
ALEX BEIRWAGEN: Computer science.
ED DAMIANO: Very good. Excellent. How long have you had Type 1?
ALEX BEIRWAGEN: About a year.
ED DAMIANO: A year? Oh my goodness.
ALEX BEIRWAGEN: Yeah.
ED DAMIANO: We have a handful of subjects that are, you know, young adults 18 to 22 years of age. Some of them are in college. I’m hopeful if everything works as we expect the bionic pancreas will allow them to think about their diabetes much less and get nevertheless much better control.
ALEX BEIRWAGEN: Well, life before diabetes, I didn’t really have to think about my body that much.
ED DAMIANO: You got diagnosed at one of the hardest times, I’ve got to tell you. So this is the device right now. This is not the commercial unit, this is what we call the clinical unit or the Gen 3 iLet. We have several generations of this technology I could show you but this is the one that is our really first fully integrated one that we’ve ever brought to an outpatient experiment. So, it’s a glass cartridge and we have a fillable cartridge where you can put insulin into the cartridge, just type in your body weight and the device adapts to your basically ever-changing insulin needs every day.
ALEX’S MOM: That’s so cool.
ED DAMIANO: There’s no other device that works that way.
ALEX’S MOM: I know, right?
ED DAMIANO: Now, you know, I do want to emphasize this is not a cure by any means, right? This is far from a cure but it is so far beyond what anything, you know, anything that we’ve had for Type 1 diabetes. I do believe there will be a cure in your lifetime, but it’s not around the corner. And this device is around the corner and that’s really what we’re trying to do is get much better therapy to people that requires much less of their participation and provides much better care. And thank you for participating, guys.
The FDA requires a clinical trial to show that it’s safe and effective, that’s how we get these medical devices approved.
This just shows you my glucose level. I don’t have diabetes but I wear all the stuff all the time, like, I’ve got a Senseonic sensor here. So, this is streaming data from me every five minutes, the Senseonic has me at 95 and you can see my glucose varying and the dosing going on here. It doesn’t know I don’t have diabetes so it’s just dosing a little bit. My pancreas doing all the work. But it’s streaming the data in and it’s then pumping insulin out of this chamber here. So, this is what the cartridge looks like. This is the insulin cartridge that you’ll be using.
Whenever you automate something like this, where really literally lives are at stake, how do you reassure people and ourselves that we really are doing better? It comes from clinical trials. And that’s really how we know ultimately if this is going to work.
MAN: Okay, so you’re rolling now
KAYLA CROOMS: When I got to lows, severe lows I am too scared that what if I don’t wake up and I don’t have my Dexcom beeping at me, or if I’m too high, what if I don’t hear and I just sleep through it? I hear stories about people going into comas and that’s like the scariest part.
YASMIN KAFI: My first semester I wanted to make new friends. I wanted to have fun all the time, I wanted to go out. And then sometimes I’d forget I need to be careful about my blood sugar. And I wouldn’t check for days. And then I would check and it’d be 400, 300 and I was not taking care of myself and I had to realize, “Wait a minute, I’m a diabetic, I need to be more cautious.”
ALEX BEIRWAGEN: Coming to terms of the fact that I had to deal with needles every day more than once, at least twice a day for the rest of my life pretty much was not a fun fact to come to terms with.
ED DAMIANO: All right, so I’m going to cock it again. I’m going to put this in the notch, all right? I’m going to make it go down like this. So, now just put this dome here. You can hold it over here and then just hit the pinch points and it’ll deploy. And then I just pull it straight out. Now, the needle’s gone.
ALEX BEIRWAGEN: When a needle is there I just sort of freak out and shut down, I guess. I don’t really know how to describe it but it’s not a fun experience because I just hate needles in general. And when they have to go in me, no.
ALEX’S MOM: Pull back till it clicks. Great. Okay? You want to try this to do it yourself?
ALEX BEIRWAGEN: No.
WOMAN: Okay. It’s not nearly as bad as you make it in your head.
ALEX BEIRWAGEN: Oh, yeah. Yeah. I know that so well.
WOMAN: Every single person that I have-- so I’ve started a lot of people on insulin pumps and then as soon as I put it in they’re like, “Oh, I can’t believe I was worried about it.” Every single person, there was no exception.
ALEX BEIRWAGEN: I can be the exception. Okay, yeah. I don’t like this. I really don’t like this.
ALEX’S MOM: So noted. Can we just get this done?
ALEX BEIRWAGEN: I’m trying.
ALEX’S MOM: Okay.
ALEX BEIRWAGEN: Was that it, really?
WOMAN: Push slightly just to get the tape on. Hold on the tubing.
ALEX BEIRWAGEN: That is so much less worse than the Dexcom.
WOMAN: Hold it from here. Pull it straight out. Ta-da. Done.
ALEX BEIRWAGEN: Yeah. Yay.
WOMAN: See, you were not the exception.
ED DAMIANO: All right. Way to go.
WOMAN: How’d it feel? Fine?
KAYLA CROOMS: Yeah.
WOMAN: I know.
KAYLA CROOMS: At first, I thought it was going to hurt like so much worse and I was like, “Oh, that was it?”
The system itself, like, one day it’s going to be on market hopefully. I really hope so but I would want to know more about it and then I think just participating in it helps other people and it helps them make corrections so that it can be on the market.
ED DAMIANO: One, two, three. All right.
WOMAN: Yeah. Oops. Awesome.
ED DAMIANO: Go and get your first dose, yep.
So this study that we're doing now really is one of many stepping stones toward final USFDA approval, at which point we can then begin selling the device commercially throughout the U.S.
ENRIQUE CABALLERO: We've come a long way with technology for diabetes management. Hopefully, at some point, we will have a cure for the disease. But in addition, there's the possibility of giving some organs, a kidney and a pancreas transplant, to a patient that requires that.
NICOLE: So I had just gotten back from-from Las Vegas, I go to dialysis, I come back and I had 310 number calling me. I answered it, and it was a nurse, and she proceeded to tell me that they had found a match for me, and it was between me and two other people in my blood group. At 5 o’clock, she called and said “Don’t eat and drink anything, the organs are for you. The other two people that were supposed to get them, that were in the running for them, can’t.”
SOCIAL MEDIA: I am happy and positive. I’m just nervous. That’s like mostly what I am feeling. And just to think that I’m not going to be diabetic anymore is crazy.
My dad and my mom and I all went. We got there, and everything started going really fast. It was scheduled for 3AM that I was going to be getting the organs, and then they said that “Well, we are going to push it to 4AM.” So I was like okay. People are calling me, people are texting, and this was happening. My donor who was an 18-year-old male, when they open him up, the pancreas was scarred. So they wouldn’t be able to give me those organs. So just like quiet for a minute, and I was just like burst into tears. My parents were like quiet because like what can you really say. I feel stagnant. Like I am just kind of waiting for a transplant. And everybody else around me is getting married. They are having families. They are buying houses. So I’m just waiting again, and you just wait.
NARRATOR: For Monteil, the wait is over: with all the help and support, he was unable to keep his blood sugars in range. His toe re-infected, and now there’s only one way to save his whole foot or even his leg.
DR. DEAN SCHILLINGER: Why the initial improvements we saw didn't sustain is never entirely clear. It was tough to get his blood sugar in optimal control, and it's really hard to heal wounds when the blood is, is full of sugar. The bacteria love that, and the white blood cells that normally fight infection can't function that well. I think the other problem is just the diabetes is so far advanced that getting the healing cells to do their job is probably quite limited in him to begin with.
NURSE: Hi. Good morning. My name is Marco, I'm one of the nurses here. I'm going to help get you ready for your procedure, okay? And can you tell me, in your words, what procedure you're having done today?
MONTEIL LEE: They about to cut my toe off.
DR. DEAN SCHILLINGER: He did pretty well in terms of not bearing weight on that foot, but I don't think it was 100% adherent. That's hard to do for three months, four months, you know.
NURSE: No pain right now? So you are getting started pretty soon. Um… any questions yet? Again. Um dr. Anand is going to come see you.
MONTEL LEE: I just really want it to be over with.
DR. NEELESH ANAND: Remember me? I'm Dr. Anand, and I'm going to be your anesthesiologist today.
MONTEIL LEE: Okay.
DR. NEELESH ANAND: So, we're going to take good care of you today, all right? Let me review a few things with you. And I know... so, your blood sugar was pretty high this morning. So we're going to treat you with a little insulin, all right, to get that a little more normal. When was the last time you took any of your insulin?
MONTEIL LEE: Sometime yesterday.
DR. NEELESH ANAND: Sometimes yesterday, okay. And when was last time you had anything to eat or drink.
MONTEIL LEE: I would say, like, in the morning yesterday.
DR. NEELESH ANAND: Okay.
MONTEIL LEE: Last night, at 8:30.
DR. NEELESH ANAND: So, I know you've had multiple of these operations for that foot, all right? Hopefully, this is one of the last ones, all right?
MONTEL LEE: It better be the last one.
DR. DEAN SCHILLINGER: We need to be fighting a war against diabetes as a nation, just like we're, you know, in conflict now, in Iraq and Afghanistan. We’re fighting a war as a nation there. When you think about the soldiers fighting for the last decade, there have been about 2,000 soldiers who've lost a limb in combat. In that same period of time in the United States, about a million US civilians have lost a limb to diabetes. And the only way we can turn it around is if the public sees this as a very important social problem that we need to address.
NICOLE SMITH-HOLT: I think people hadn’t really been talking about it, Type 1 diabetics not being able to afford their insulin. They’ve been keeping it kind of private. And I know before I shared them my story I felt as if Alec was probably the only person that had ever died from diabetic ketoacidosis because he couldn’t afford his insulin.
NICOLE SMITH-HOLT: I was shocked to hear all the people that had reached out to me through social media saying, “Hey, my brother died the same way,” or, “My son died the same way, my friend died the same way.” And I knew that it was an issue that needed to be addressed. Alec’s story has been shared all over the world.
NEWS STORY: This story is generating quite a conversation on the 11 Alive Facebook page. Alec’s story has been reaching more than 200,000 people on Facebook with hundreds of comments, and the common themes we’re seeing: outrage and people wanting something done about this.
NICOLE SMITH-HOLT: Advocates are putting little messages in those bottles of things that they have forgone or have lost or have given up so they can afford their insulin. And those vials will be delivered to Eli Lilly today.
JAMES HOLT: One special vial of insulin is going to have some of my son’s ashes in that went in to present to Eli Lilly this afternoon. This is something that she’ll do until the day she dies because this cost her son’s life.
JAMES HOLT: Honk for affordable health care!
WOMAN 1: I’ve had Type 1 diabetes since I was four years old. In those 20 years, this company right behind me has raised the price of their insulin by over 1,000%.
WOMAN 2: I don’t want what happened to Alec Smith to happen to my son. He’s 14, I feel like I have 12 years to make a difference before he turns 26 and gets off my insurance.
WOMAN 3: My mom has actually reached retirement age, but she can’t retire because of the prices of insulin.
NICOLE SMITH-HOLT: My son Alec Smith was one of those diabetics who died because he did not have enough insulin. He died because he could not afford to live. His insulin was too expensive. Alec’s body was found three days prior to payday. Rationing is not uncommon among the diabetic community. And their company is projected to have a revenue in 2018 of over $23 billion dollars.
NICOLE SMITH-HOLT: All of this when diabetics are starving themselves, working two and three jobs, cashing in on their retirements, dropping out of college, filing bankruptcy, maxing out credit cards, buying expired insulin from the black market. We will not go away. We will not stop sharing our stories. We will not stop.
JAMES HOLT: Hey, hey, ho, ho, price gouging has got to go, hey, hey, ho, ho, price gouging has got to go.
WOMAN: Medicines for people.
TOGETHER: Not for profit!
MAN: Tell me what democracy looks like!
TOGETHER: This is what democracy looks like!
WOMAN: So this is some messages from people who have struggled from the cost of living. And now in addition to [inaudible] message we’ve also got Eli Lilly’s insulin vials and all the things that people are sacrificing for the cost of insulin. We want them to have this.
MAN: [crosstalk]. Thank you.
MAN: Tell me what democracy looks like!
TOGETHER: This is what democracy looks like!
NICOLE SMITH-HOLT: Part of Alec is now in that building. I hope they realize that the advocates are not going away. I hope it hits their heart. Medications that keep somebody alive especially should be made readily available and at a very, very low cost. We shouldn’t be fighting for our lives.
ED DAMIANO: Our goal initially was to try and get this technology on David before he went to college, and David is now a rising junior. So it was a much, much bigger task than I ever envisioned taking on myself. I think what we have to look forward to is that our device will play a meaningful role in keeping all those people with Type 1 diabetes who use it safe and healthy, until there's a biological cure.
NICOLE ON PHONE: Hi everybody! Hey, I'm alive. Some of you don't know that I had a kidney-pancreas transplant about 11 days ago. I'm doing really great. The kidney is functioning at almost 100% and the pancreas is working great.
So, everyone has two kidneys and one pancreas. So now that I've had my dual transplant, I have three kidneys. So my two that I had failed plus the new one. The donor organs are right here, so the kidney and the pancreas. So you have a bunch in there. They're hanging out. And then the pancreas is just… doing its thing. I can eat whatever I want. I haven’t had a banana in a year. So my mom, "I got you a surprise, I got you this banana," and she was, like, so excited. And then I ended up with another one this morning. So, I'm excited to eat it. They said I could eat the whole thing, too. But I did have cereal this morning, and before I would never have cereal. I would look at cereal and my blood sugar would be like 350.
DR. TODD BRENNAN: Thought about what you’ll do with all your spare time now?
NICOLE: I don’t know...
DR. TODD BRENNAN: Well, you don’t have to be on dialysis?
NICOLE: I don't know. I mean I feel like I think I'm in shock a little bit.
DR. TODD BRENNAN: Yeah, it's pretty exciting. This is basically at this point the only cure for Type 1 diabetes. And the cure is pancreas transplant. So you no longer are diabetic.
NICOLE: Thanks. Yeah.
WOMAN: That's a big point.
NICOLE: So, in the medical industry, they do consider a cure. They use that word "cure", they don't just say treatment?
DR. TODD BRENNAN: You make your own insulin. You regulate your own sugars. And so that is the definition of not being diabetic.
NICOLE: Today I'm not a diabetic anymore. Next month, 10 years from now like who knows what it’ll look like. I mean I hope this transplant will last a very, very, very long time. My surgeon said on paper it looked great!
SOCIAL MEDIA: Hi everybody! Hey girl! No more dialysis!
Uh my blood sugar is between 100 and 115, and it doesn’t really move from there.
Yeah it does feel very weird.
I am still like checking my blood sugar ‘cause, I don’t know why. I’m just like so used to doing it. It doesn’t really seem real to me.
SOCIAL MEDIA: And just so you guys know, I'm not going anywhere. I'm still going to be very connected to the diabetes community, Love you, Kayla. Bye, you guys.
I don't have to count carbs. I don't have to get up, like, in the night and drink juice. I don't have to count 10 chips. You know, like, I could... It's like you're free.
SARAH: Thank you so much, I’m here with the Bigger Picture Project. We’re here to talk about health in community.
My mother’s strict hands kept soda cans out of our fridge,
knowing what fountain of sugar can do.
Thank God for her intuition and deepest trust for what this nation paints pretty..
EJ WALLS: There always has been and forever will be a family cookout first Saturday in August every year.
As for the menu,
fish filets and chicken parts battered just bright enough
to reflect the sun’s gracious glow.
The plumpest pecan pork chops smothered in gravy,
more tender than the grateful patch of farm land
swallowed by rainfall.
DAN HURLEY: We're living in a world that is perfect for making diabetes flourish.
EJ WALLS: Corn bread, soft like a crumbly pastry,
like too sweet not to be dessert.
DAN HURLEY: To really change things, we need to start re-making the environment in which we live.
GRETCHEN CARVAJAL: Hi. My name is Gretchen Carvajal. I'm a Youth Speaks alum. I'm now a poet mentor for the organization and so, just, yeah, I just feel real blessed to be in the building.
I want to be able to eat without second guessing
Without thinking about a smaller version of myself
Without thinking about food as a weapon or a setback
MONTEIL LEE: As of now, the way I feel, I feel great. I got my shoes on, I got the inserts in there, you’ll see me, I’m in the gym trying to run around a little bit. I'm just, I'm just thankful that I was able to have a successful surgery and be able to move forward afterwards.
DR. DEAN SCHILLINGER: I think we learned with Monteil that social factors are the main driver, uh, of who gets diabetes, who suffers the complications from them, and why so many people are disabled from it, particularly in vulnerable communities. And that needs to change.
GRETCHEN CARVAJAL: My mother's side has diabetes.
Diabetes is more and more a curse
that we thought we brought to ourselves.
We try to break it with a spell, a potion, and a ritual.
What is insulin, but a potion?
What is a spell, but a diagnosis?
We take a tiny needle and prick our finger.
What is a blood sacrifice to a blood test?
KELLY CLOSE: Maybe the next step is a movement, a shared war on diabetes fought by Type 1’s, Type 2's, families, communities, everyone, everywhere. In order to win the war on diabetes, everyone has to be in!
KAREN WASHINGTON: You got one life to live. Make it your best. Eat healthy. In the end, diabetes can be a thing of the past.
GRETCHEN CARVAJAL: Give a droplet of yourself every night and see
one day the sugar won't be as sweet. But
the food isn't what cursed us, I promise.
It's what nourished.
It's what kept our stories true.
Thank you all so much.
DIRECTED AND WRITTEN BY
S. Epatha Merkerson
Alisa Placas Frutman
William Ryan Fritch
AP Photo/NKP, Nigel Kinrade
CBS News / Veritone
Ed Damiano and Toby Milgrome
Division of Medicine and Science, National Museum of American History, Smithsonian Institution
Joseph Fanvu Photography
Brett Carlsen/Andrew Harrer/Bloomberg/ABC News VideoSource via Getty Images
Literacyworks, Health Literacy Summitt
Papyrus Ebers from Papyrus and Ostraca Collection, Leipzig University Library
Sanofi Pasteur Canada, Connaught Campus Archives, Toronto
The Thomas Fisher Rare Book Library, University of Toronto
Camilo José Vergara
UC-Mexico Initiative, University of California
University of Maryland School of Public Health
Tim Van Mullem
SOUND DESIGN AND MIX
FOR WGBH BOSTON
LEAD BUSINESS MANAGER
NATIONAL AUDIENCE DEVELOPMENT
LEGAL & BUSINESS AFFAIRS
Pablo Velez, Jr.
Salme López Sabina
A Production of Structure Films for WGBH Studio Six
©2020 WGBH Educational Foundation
- Neelesh Anand, Alex Beirwagen, Todd Brennan, Enrique Caballero, Gretchen Carvajal, Carolyn Chapman, John Chapman, Kelly Close, Kayla Crooms, Ed Damiano, Laura Grueser, Anthony Hatch, Alexis Holt, James Holt, Dan Hurley, Yasmin Kafi, Montiel Lee, Daniel Lieberman, Toby Milgrome, Bonnie Rife, Denzil Roberts, Vikas Saini, Dean Schillinger, Brittany Smith, Nicole Smith-Holt, EJ Walls, Karen Washington