We type 1s face danger at every curve: the yummy meal laden with carbs, the pump that suddenly malfunctions, the low that plunges to scary territory, the high that won’t come down, the infusion set that bleeds upon insertion, the CGM that needs constant calibration…the list goes on.
But there is perhaps a larger danger lurking out there, one that can have a devastating effect on our attitude if we let it. It is called one-upsmanship. What do we mean by that?
When speaking with fellow people with diabetes, how often do you hear some of the following lines?
- I have no problem with control. I have an A1c of 5.1.
- I’m in range 99% of the time.
- My pump is great. It keeps my average sugar at 95.
- I rarely, if ever, go low.
- My numbers could not be better.
- My endo tells me I’m doing perfectly.
- I never go above 150.
- If I’m at 200, I bring it down in minutes.
- I have no problem saying no to sugar.
- Managing diabetes is no big deal.
My reaction to such comments is: Really? I wonder what planet these folks live on. Are they being truthful? If so, why are my numbers so different? What are they doing that I’m not?
Am I the only type 1 who is not doing that well? Why can’t I be like them?
People with diabetes who brag or boast to others about their ability to handle diabetes are basically sending the message that they can manage better than you. They are putting themselves above you and playing a vicious game of one-upsmanship.
In our constant, ongoing battle with diabetes, our toughest job is to remain optimistic. When we hear others boast of great control, we tend to think less of ourselves. We lose confidence.
Without a strong belief in ourselves and our ability to stay in the diabetes fight, we can get discouraged. Not only do we feel depressed, but worse, we are tempted to say, “The heck with it.” Why should I eat so carefully if I can’t get results like my friend’s?
Some argue that it is human nature to promote ourselves over others or simply want others to know how good we are. Facebook, one might argue, is often a look-at-me activity, where people describe all the wonderful things in their lives. Multi millions around the globe participate in Facebook just to show the world their daily achievements.
How does this make others feel? If, for instance, someone on Facebook shows pictures of a delightful vacation to Paris, France, some readers might say to themselves, “Wish I had that kind of money.” Or: “Wish I had free time.” Or: Wish I had friends to go with.”
The same holds true with diabetes. When others flaunt their abilities to deal with the disease, we can easily start to feel incompetent.
Here’s some advice: Avoid those who would continuously boast about their victories over diabetes. Most of the stories simply are not true. Those that are don’t do us much good.
We need to choose our diabetes support circle as carefully as we choose insulin pumps and carbs at meals. We need to stay positive in the daily struggle and associate with those who provide us honest emotional support.
Since the day I was diagnosed, I have had people telling me I should consider an insulin pump. Seven and a half years later, I still say no. My A1c has always been in a healthy range, and I am fine with only having one device, the Dexcom G6 continuous glucose monitor (CGM), on my body. I know pumpers rave about their tight control and I am truly amazed by the pump’s capabilities, even more so now with the new features on the Medtronic 670G. However, I prefer a KwikPen, which is true to its word — it is quick and easy and just the way I like it!
Here are my five top reasons for being on team MDI (multiple daily injections):
1. No Kinks or Knots
I constantly hear stories of people waking up with a blood sugar in the 300s, and they had no idea. This is because there was a kink or knot in their tubing and the insulin wasn’t getting into their body all night long. Yes, if they are wearing a continuous glucose monitor (CGM), it should have alerted them, but that sounds like a pain you don’t get from the poke of a pen!
2. Fewer Bruises and Scar Tissue
Don’t get me wrong, the pokes of 6-8 injections a day does add up, and I do have bruises on my body. But have you seen the needle on those pump infusion sets? They are a lot longer and thicker than my Humalog pen. Also, the cannula stays in your body, therefore, leaving much larger holes. This means more bumps and bruises and also means more scar tissue.
3. No Crazy Calculations
As I mentioned above, I am amazed at what a pump can do. It can give you a precise amount of insulin right down to the decimal point. It can also tell you what your insulin on board (IOB) is. My pen can’t do either of these things! However, I do use Humalog Luxura, which is a half-unit pen so I can get more accurate dosing. Also, I mostly eat low-carb, so my dose is usually between 1-3 units. I prefer not having to count every carb I consume; math is not my strong suit!
4. Quick and Easy
KwikPens are quick and easy and take one second to use! I compare these seconds of my day to a lifetime of walking around with another device attached to me, tubing included, and that’s just not for me. Between CrossFit and being a mom, the tubing would not be kind to me.
5. I Don’t Have to Carry Around My Pancreas
When people first recommended the pump, I really only focused on not wanting to wear something else attached to my body. What I didn’t consider was the fact that I would have to actually carry around my new pancreas! When I went to my first type one weightlifting event, Bolus & Barbells, I was so surprised to see everyone with their phones in one hand and their stand-in organ in the other. I imagine that showering and going to the bathroom is a little more challenging than it is for the average Joe!
While I know there are many benefits to wearing a pump; it is just not something I am considering at this time. For me, the fewer reminders of this disease, the better. And with another device attached to me, especially with tubing, I would feel tethered. If I were to consider a pump, it would be the Omnipod since it is tubeless. For now, I will remain loyal to team MDI.
Are you someone who is on multiple daily injections and won’t have it any other way? Or are you someone who was MDI and made the switch to a pump and are glad you did? Share your story!
A previous version of this post has been updated.
This content originally appeared on Beyond Type 1. Republished with permission.
By Beyond Type 1 Team
In early 2021, Beyond Type 1’s advocacy division surveyed almost two thousand people living with or caring for someone with diabetes to determine key healthcare access issues faced by members of the Beyond Type 1 community throughout 2020. While other surveys on access have been conducted within the diabetes community, it was important to Beyond Type 1 to hear directly from the community they serve on issues faced, both throughout the COVID-19 pandemic and generally.
The survey follows ongoing advocacy work from Beyond Type 1 addressing the rising cost of insulin and other healthcare access issues such as implicit bias and equitable technology access, Medicare and Medicaid access, drug pricing and rebate reform, and more.
The survey ran in English and Spanish, was anonymous, and included survey respondents both within and outside of the United States. The survey was run independently by Beyond Type 1 and specific methodology can be found at the bottom of this article.
Access + Cost
A majority of respondents (56%) ranked access to affordable insulin and diabetes drugs as their most important access issue. This aligns with data reported from studies such as the 2018 Yale report showing that one in four insulin-dependent people ration insulin due to cost, while also nodding toward the high cost of other diabetes medications like SGLT2 inhibitors and GLP-1 receptor agonists.
Almost half of respondents (40%) ranked access to diabetes supplies as the second most important access issue (8.5% of respondents ranked access to supplies as their most important access issue), while nearly the same amount of respondents (36%) ranked access to affordable healthcare coverage as their third most important access issue. Just 6% of respondents ranked access to new therapies that cure, treat, or prevent diabetes as their top access issue (75% of respondents ranked it as their least important access issue).
In the United States, 66.4% of respondents indicated they used employer-based health insurance to access healthcare in 2020. This is slightly higher than the 2019 U.S. population health insurance coverage data provided by the Current Population Survey Annual and Social Economic Supplement (CPS ASEC) and the American Community Survey (ACS), which calculated 55.4%.
Of the remaining third of respondents:
- 8.1% received 2020 health coverage through Medicaid
- 7.7% through Healthcare.gov / State Marketplace
- 5.8% through Medicare
- 5% reported no insurance coverage in 2020,
- and 4.6% indicated ‘other’, which could include either a combination of coverage options, catastrophic care plans, COBRA, and/or other temporary plans
While two-thirds of respondents reporting employer-based health insurance could be seen as a positive—that access to healthcare is the norm rather than the exception—40.4% of respondents indicated they incur a deductible of more than $1500 per person for their insurance coverage. This indicates that over a third of respondents are covered by High-Deductible Healthcare Plans (HDHPs), a rising trend across American healthcare that, for those with chronic health needs, creates excessive financial burden.
HDHPs create a scenario in which a person often must pay full price for medications or supplies until the healthcare plan’s deductible is met, creating a significant out-of-pocket cost at the start of every calendar year. For people living with chronic conditions such as diabetes, this economic burden can create avoidance of healthcare treatment, unaffordability of life-essential medications, and inability to purchase or utilize supplies needed.
Out of Pocket Costs
Survey respondents reported excessive out of pocket expenses not only for medications, but for diabetes supplies (such as insulin pump or glucose monitoring supplies).
- 55% of respondents stated they have paid more than $100 out-of-pocket in any month for any diabetes medication
- 64% of respondents paid more than $100 out-of-pocket in any month for diabetes supplies
While the American healthcare system often creates an undue financial burden for people living with diabetes, access abroad remains a major issue as well.
- 55% of respondents could not get supplies
- 18.3% of respondents had run out of medications or rationed due to cost
- 23% of respondents made a decision between bills and diabetes supplies
The Impact of COVID-19
Of course, the COVID-19 pandemic exacerbated healthcare issues across the globe. For those living with diabetes or caring for individuals with diabetes,
- 30.7% of respondents did not see a healthcare professional or have lab work completed in 2020 due to fear of contracting COVID-19
- 38.4% of respondents experienced mental health issues related to the COVID-19 pandemic
- 7.8% of respondents experienced employment discrimination due to COVID-19 in relation to diabetes during 2020
The Bottom Line
Living with diabetes creates a major financial burden for many—the added medical cost of living with diabetes in the United States has been estimated at an average of $9,071 annually per individual—and the financial decisions that many are forced into making create short- and long-term consequences. Among survey respondents:
- 21.6% ran out of medications or rationed due to cost
- 15.0% skipped specialist visits or other healthcare to pay for diabetes care or supplies
- 16.8% did not see a medical professional due to cost
- 14.1% “borrowed” insulin or other diabetes supplies because of cost
- 20.1% utilized a copay card for any diabetes medication
- 22.8% made a decision between bills and diabetes supplies
These survey responses will continue to shape ongoing work being done by Beyond Type 1 ensuring everyone impacted by diabetes — type 1, type 2, and beyond — has a right to the best care possible for their unique situation. To learn more about Beyond Type 1’s advocacy work and to lend your voice to legislative actions, click here.
Details on Methodology
The Beyond Type 1 Diabetes Experiences Survey was created on Formsite, a secure platform for processing and hosting sensitive survey data in both English and Spanish versions. Both versions were identical in ranking questions, response offers, and language. The survey was logic mapped to offer additional questions for those who identified as individuals living outside the United States.
Questions were created by employees of Beyond Type 1 living with diabetes, with careful attention paid to plain, inclusive language in demographic self-identification inquiries.
The Beyond Type 1 Diabetes Experiences Survey was shared online through different avenues from mid-January to mid-February in English and mid-January to mid-March in Spanish through the Beyond Type 1 website (English and Spanish), the Beyond Type 2 website (English and Spanish), a targeted email from Beyond Type 1, and both organic and paid posts on Twitter, Facebook, and Instagram. There was no paper version available to print out; it was online responses only.
Respondents self-identified as people living with diabetes or caring for an individual living with diabetes.
The survey was completely voluntary; no one was paid to provide responses. All responses were mandatory for a survey to be deemed complete. If an individual did not click submit at the bottom of the survey, no results were recorded. A statement before the beginning explained that the survey results were anonymized, and only aggregate data and key learnings would be shared publicly.
1924 individuals fully completed the survey, with 1850 identifying as living in the United States.
The sample size of 1924 individuals is a small section of the global diabetes population, although larger than many similar surveys in the space. Additionally, respondents cannot be assumed as indicative of all people living with diabetes – 93% of respondents lived with or were caretakers of someone with type 1 diabetes, 91% lived in the United States, 85% were white, and 83% were female. Just 3.2% were 65+. All respondents had access to the internet and were either already following or in some way connected to Beyond Type 1 channels.
This content originally appeared on diaTribe. Republished with permission.
By Andrew Briskin
Andrew Briskin joined the diaTribe Foundation in 2021 after graduating from the University of Pennsylvania with a degree in Health and Societies. Briskin is an Editor for diaTribe Learn.
At the Milken Institute 2021 Future of Health Summit, leading experts in type 1 diabetes research and innovation discussed the path toward a cure, the latest in glucose monitoring technology, and the importance of screening for type 1 diabetes.
A group of leading experts in type 1 diabetes research and innovation took part in the panel discussion, “Tackling Type 1 Diabetes: Where the Science is Heading” at the Milken Institute 2021 Future of Health Summit last month. They exchanged insights on the advantages of continuous glucose monitoring, automated insulin delivery (AID), Time in Range for better diabetes management, as well as tantalizing new possibilities for curing type 1 diabetes.
The discussion from June 22nd was moderated by diaTribe Founder Kelly Close and included:
- Aaron Kowalski, Ph.D. – CEO, JDRF International
- Shideh Majidi, M.D. – Assistant Professor, Pediatric Endocrinology, Barbara Davis Center for Diabetes
- Felicia Pagliuca, Ph.D. – Vice President and Disease Area Executive, Type 1 Diabetes, Vertex Pharmaceuticals
- David A. Pearce, Ph.D. – President of Innovation, Research and World Clinic, Sanford Research
The panelists began by discussing how continuous glucose monitors (CGM) now provide people with type 1 diabetes even more information and the power to manage their glucose levels. CGM data provides people with crucial metrics such as Time in Range (TIR), which corresponds to the percent of time someone spends within their target glucose range – usually 70 to 180 mg/dL. This target glucose range may vary though, for example, if you are pregnant. You can learn more about the helpful metrics that CGM provides here. Alongside A1C, TIR allows more insight into your day-to-day diabetes management by showing fluctuations in glucose levels caused by factors like meals, exercise, illness, and more.
However, CGM is not perfect or widely accessible yet. The panelists touched on this issue of access to CGM and the existing disparities in care across race and type of insurance. Dr. Majidi emphasized that in populations with access to this technology, CGM use has increased from 20% to over 80% of patients over the last five years. However, some studies have shown that providers tend to prescribe technology only to certain patients due to unconscious biases about which patients may be able to handle using advanced technology.
Advocating for early and consistent training for healthcare providers on addressing these biases, as well as provider and patient education on CGM and other technologies for glucose management, Dr. Majidi said, “we need to look at these unconscious biases to start providing everyone with the opportunity to use and learn about new technology.”
The panel then explored the advantage of AID hybrid closed-loop systems. These systems combine a CGM, insulin pump, and an algorithm that allows the CGM and insulin pump to talk to each other. Dr. Kowalski said he was especially encouraged by the advancements in AID systems, emphasizing that it not only decreases the number of highs and lows, but it also removes much of the burden of diabetes management from patients and their families.
AID systems especially benefit families with children who have diabetes, reducing concerns from parents about the safety of their children during the night or at other times when the risk of hypoglycemia is high. The panelists said they were hopeful that these new innovations are bringing us closer to developing a fully closed-loop artificial pancreas, which could automatically respond to changes in glucose in real time without the need for a person to deliver manual boluses or calibrations.
Echoing their advice on how to address disparities in CGM use, the panelists noted the importance of education for healthcare providers to combat disparities in prescribing AID to ensure equal opportunity for all to achieve better health outcomes.
The discussion then shifted to the latest research towards a cure for type 1 diabetes, focusing on beta cell replacement therapies. Because type 1 diabetes occurs as a result of the body’s immune system attacking and destroying its own pancreatic beta cells (the cells that make insulin), scientists have been researching how to replenish the beta cell population from stem cells. Scientists believe that stem cells, not yet fully differentiated or mature cells, could potentially be directed to become functioning beta cells.
Dr. Pagliuca shared updates from her work at Vertex, studying stem cell-derived beta cell transplants in type 1 patients with impaired awareness of hypoglycemia. This initial study relies on systemic immunosuppressive drugs (these are drugs that “turn off” the body’s immune system so it won’t attack the implanted cells) to protect the implanted beta cells. The hope is that future studies will seek to use a different method called encapsulation, which protects beta cells from the immune system with a physical barrier, avoiding the need for immunosuppressant medications.
So far, with the successful conversion of stem cells into mature beta cells accomplished in controlled lab settings, the science has developed to the point of testing stem cell-derived beta cells in clinical trials, with Vertex first clinical trial now enrolling patients. This initiative will encompass the entire type 1 community, with Dr. Pagliuca stressing that “transitioning these breakthroughs into the clinical phase will require participation from all stakeholders, patients, researchers, and healthcare providers.”
Considering the latest research into the immunobiology of type 1 diabetes, the panelists advocated for significant increases in screening for type 1 across the general population.
Dr. Pearce advised that testing for the presence of specific autoantibodies (small molecules in the body that are the cause of the immune system attacking a person’s own beta cells) in the general population is essential for implementing prevention programs, given that the presence of at least two of these autoantibodies is a very predictive measure to assess the risk of developing type 1 diabetes.
According to him, the predictive power of these screenings make it is possible to classify an individual as having type 1 diabetes years in advance of any symptoms, even while they still have normal glycemic control. In this way, type 1 diabetes can be classified into 3 stages – stage 1 is when someone has two or more diabetes-associated autoantibodies, but normal glycemia and no symptoms. Stage 2 is when you have the autoantibodies, have begun to develop glucose intolerance or abnormal glycemia, but still no symptoms. Stage 3 is when symptoms begin and you are diagnosed with type 1 diabetes. Classifying diabetes in this way and identifying those in the early stages could increase patient involvement in clinical trials, and help connect individuals to new drugs such as teplizumab (not yet approved by the FDA), that aim to delay the onset of symptomatic type 1 diabetes or prevent it altogether.
Drs. Pearce and Kowalski agreed, recommending a screening strategy involving primary care providers and screening children during the toddler years. On the importance of this screening process for involvement in clinical trials, Dr. Kowalski noted, “Diabetes is a global problem. The voice of the patient is hugely important on new devices and therapies, and clinical trial pathways are delayed when there isn’t equal participation in the trials.”
You can watch the panel discussion and hear insights from the four incredible experts here.
This content originally appeared on diaTribe. Republished with permission.
By Katie Bacon
Katie Bacon is a writer and editor based in Boston. Her daughter was diagnosed with type 1 diabetes in August, 2012, when she was six. Katie’s writing about diabetes has appeared on TheAtlantic.com and ASweetLife. Katie has also written for The New York Times, The Boston Globe, and other publications.
Adolescence can be a confusing time, and this is doubly true for teenagers with type 1 diabetes. At a stage when everyone is starting to figure out who they are, the teenager with type 1 must also decide how much they want diabetes to be a part of their identity. Katie Bacon, the mother of a teenager with type 1, spoke with a range of experts and peers who shared their expertise and experiences on this subject.
Our daughter was diagnosed with type 1 diabetes at six years old, just before she started first grade. At the time, it was important both from a safety perspective and from an emotional one that the people around her knew about her diagnosis. Along with her teachers and the school nurse, we let all her friends and their parents know, and they rallied around us to support her. She quickly owned having type 1. It became an important and immutable part of her identity, one she was proud to share with others.
Fast forward eight years to this past fall, when she was doing orientation for her new high school. After being surrounded by a group of familiar and supportive friends from kindergarten through eighth grade, here she knew almost no one. Not to mention that, in the era of COVID-19 – with masks, cohorts, and strict rules about socializing – it would be much harder to meet people.
During orientation she was asked to create a timeline of important moments in her life. While chatting about what she might write, I asked if she was going to include her diagnosis. Her response seemed to come completely out of left field: “Why would I put that down? I’m not planning on telling anyone unless I become really close friends with them.”
She made it clear that she was now much less willing to acknowledge having type 1 as she entered high school. Although she didn’t express it quite this way, it seemed that the reason stemmed from a desire to avoid being judged or stigmatized – she didn’t want to be known as the new girl with diabetes. So, we agreed that we would tell the school nurse, her teachers, and her sports coaches – for her health and safety, it was non-negotiable that they all know. We also agreed that it would be up to her to choose when (and if) she would tell her friends.
Still, it felt like my daughter was cutting away her safety net. I wanted to know if this shifting perspective on her condition was typical for teenagers, and I wanted some advice on how to help her through it. I reached out to Rachel Rifkin, a longtime friend who was diagnosed with type 1 at age ten; to Dr. Ananta Addala, a pediatric endocrinologist at Stanford Children’s Health; and to Dr. Persis Commissariat, a pediatric psychologist at Joslin Diabetes Center who also has type 1. Through their expertise and experiences, they helped answer my questions about disclosing teenage diabetes versus hiding it; about stigma, perceived stigma, and how to deal with it; and about how to let go a little bit while still giving our daughter support through this process.
One of the crucial parts of adolescence is identity development, when teenagers figure out who they are in relation to their family and their peers. At this developmental stage, people are particularly sensitive to being different in any way; and if they are different, they want it to be in ways that they’ve chosen. All of this is complicated, of course, by having a chronic disease that requires frequent visible action and identifiable devices to manage (insulin shots, continuous glucose monitors or CGM, insulin pumps, etc.).
Dr. Commissariat took on this topic as the lead author of a paper on identity and treatment adherence in teens and young adults with type 1 diabetes, which appeared in Pediatric Diabetes. She and her co-authors looked at the differences between those who “incorporated” their illness versus those who “contained” it or tried to keep it separate from the rest of their identity. “Those who incorporate their illness … take it into account in their daily life and are able to find ways to include the illness as part of their sense of self. Those who contain their illness may try to keep their illness hidden, worry about stigma, or try to … maintain a sense of self [that is] unburdened by illness, often ignoring daily self-management needs.”
What they found, Dr. Commissariat explained to me, was that people who tend to take a more “positive approach to making diabetes part of their sense of self – people who view it as ‘it’s my burden and I’m okay with it’ – tended to have lower A1C levels. They were a little more engaged in treatment.” In other words, those teenagers who managed to incorporate diabetes into their identity usually did better.
Because of this, Dr. Commissariat works with her patients to help them develop an identity that has “an appropriate degree of type 1 in it. I don’t think anyone needs to identify first and foremost as a person with diabetes. But the fact of the matter is that there are secondary issues that come up if we don’t take care of diabetes. So, you must identify with it to some extent. And I think what oftentimes becomes difficult for teenagers is finding that balance between being a ‘normal teenager’ and being a teenager with diabetes. Because on its face, they don’t really go hand-in-hand, but they should and they can.”
As I’ve witnessed firsthand with our daughter, adolescence can be a time when children want to move away from their identity as someone with type 1. When Rachel Rifkin was a teenager, she found herself transitioning from being relatively open about having type 1 to having it be something that she preferred to keep to herself. “I always did whatever I could to avoid people knowing about it. I always wore my pump in a back pocket. I never wanted to clip it onto the front of my pants or anything.”
In her practice, Dr. Addala has seen people go both ways. While she says that it’s more common for teenagers to “minimize the thing that makes them different, which is a very normal teenage developmental thing to do,” she’s also had patients who have embraced that difference. And in fact, in those individuals she sees a “further doubling down on the fact that diabetes is what makes them who they are; it’s a source of strength and pride and something that defines their character.”
But for those teenagers who aren’t willing to talk about or share that they have diabetes, both Dr. Commissariat and Dr. Addala try to understand the reasons behind the hesitancy. As Dr. Addala explains, “I try to see where the source of the apprehension comes from. Is it specifically that they don’t mind taking care of their diabetes or they don’t mind wearing technology, but they just don’t want other people to see?”
In these situations, Dr. Addala treads lightly and tries to respect the teenager’s feelings while gently encouraging them to open up. “I let them lead a bit when this topic comes up. They might say, well, I think I could probably tell my closest friend that I have diabetes. Or maybe they’re not willing to tell anyone, and I do my best to support them even in those cases. I’m trying to find out where their internalized stigma is originating from, and then see how far they’re willing to go in terms of who they share the information with. I generally use this approach because then they have some ownership.”
Dr. Commissariat points out that there’s an essential difference between being private about having diabetes and being secretive about it. As she tells her patients, “You don’t need to advertise it. But for safety purposes, it is important that at least a couple of your close friends know.”
She also talks about helping teenagers learn to communicate that they have type 1 in a way that feels manageable and builds confidence. She tells her patients: “I want to know exactly what you wish other people knew about diabetes. And then let’s find a way to teach people in a way that is not burdensome to you. Teenagers are trying so hard to not draw too much attention to themselves, so I often practice with them in our visits – how can we bring this up in a way that is not going to bite you in the back? That could mean having a serious discussion with your best friend, or that could mean something as easy as wearing short sleeves around people who don’t know you have diabetes, just so that they can see your CGM. Wait for people to comment on it. Use a passive disclosure strategy where you just pull out your pump and you take a bolus, and you don’t say anything unless somebody asks you.”
It’s especially helpful for teenagers to have a disclosure strategy when it comes to romantic or physical relationships. As Rifkin says, “With people you’re interested in, it’s a whole other web that you have to navigate in terms of what you tell people and when. And as I’m sure you can imagine, if you have a CGM or a pump, there are physical things on your body that may come up. It’s helpful to have a strategy for how you deal with that.”
Teenagers tend to be both self-centered and self-conscious, so when it comes to diabetes, it’s easy for them to assume that everyone is noticing it in a negative way. Rifkin remembers being in a movie theater one time when her pump started beeping. “I was so horrified. I was like, ‘Oh my God. Everyone must hate me right now. I’m ruining this experience for them.’ You don’t have a lot of perspective at that age. Diabetes seemed like such a big deal.”
Dr. Commissariat points out that all teenagers tend to think the focus is on themselves – even when it’s not. She tells her patients, “Your friends don’t care that you’ve had to go to the bathroom to take an injection. Your friends are like, ‘Okay, let’s go to the bathroom, then I can check how my hair looks.’” And she comments that those who do ask about it are probably asking because “they’re interested and they’re curious, and maybe those will be the people who will help you in the future.”
Another tip Dr. Commissariat gives her patients is to make sure that they talk about diabetes in the way they want others to see it. “If you don’t want it to be a big deal, don’t make it into a big deal because people are going to mirror you.”
For both Dr. Addala and Dr. Commissariat, part of the process is working with the parents on learning how to give their children the space to develop independence, as teenagers need to do. This can be a difficult transition, since diabetes requires so much oversight from both the parent and the child. As Dr. Commissariat says, “One of the major tasks of this developmental stage is to be independent and become less attached to your parents. But it’s really hard with diabetes to be less attached to your parents and be more like your friends when you’re managing something that takes so much responsibility.”
Dr. Addala focuses on helping parents try to see the situation from their child’s perspective. “So often part of the conversation is helping the family understand why a teenager might not want others to know they have diabetes. Where safety is concerned, it helps for the family to create boundaries around what is a true concern, and what’s just an added buffer in terms of safety.”
For both Rifkin and Dr. Commissariat, owning type 1 was a long process, one that continued into adulthood. Now, Rifkin says, “I’m a lot more open about it. I think it makes sense that those feelings that teenagers have of wanting to be private and not wanting to stick out at all fade over time, as people feel more confident in their own skin. These days I don’t feel like I have to explain it to anybody.”
Dr. Commissariat describes a long process of slowly pushing herself to make diabetes a more public part of her identity; she started by keeping her pump on display rather than keeping it in her pocket. Then she moved to bolusing and checking her blood sugar in front of people she knew and then also in front of people she didn’t know. Part of the change, for her, started when her nurse practitioner sat her down and said, “You’re not a diabetic, you’re a person with diabetes.” (Dr. Commissariat has since learned about research suggesting that this shift in labeling helps people become “more accepting of their identity with diabetes.”)
“When I look back on it now,” she says, “that statement suddenly clicks for me [in terms of] everything I went through. I thought diabetes was trying to define me, and that was my big mistake. I own it, it doesn’t hold me. When I allowed diabetes to be a part of my day and created my own definition of myself with diabetes as just a part of who I am and what I do, it wasn’t quite as burdensome anymore, but still annoying, no doubt.”
As for our daughter, after a year at her new school, my sense is that she’s still private about her diabetes, but she’s no longer secretive. A couple of her closest friends at her school now know, and that feels like a good start. At an event at the end of the year, after what felt like months where she hadn’t been willing to bolus in front of anyone, I finally saw her pull out her pump and give herself insulin right there in public – even if she was a bit off to the side. No one except me seemed to notice. I felt like she was beginning to establish that place for herself where she could feel like any other teenager. A teenager who just happens to have diabetes.
Katie Bacon is a writer and editor based in Boston. Her daughter was diagnosed with type 1 diabetes in August, 2012, when she was six. Katie’s writing about diabetes has appeared on TheAtlantic.com and ASweetLife. Katie has also written for The New York Times, The Boston Globe, and other publications.
Note: Given the personal nature of this article, Bacon asked for and received her daughter’s permission to publish it.
This content originally appeared on diaTribe. Republished with permission.
By: Amber Clour
It may not be possible to anticipate every emergency, but for those with diabetes, it’s especially important to prepare for the unexpected. Hear how people with diabetes survived natural disasters, what they learned about planning ahead, and the advice they have for others.
Susan Hoagland, 70, who lives with type 1 diabetes, worked up until the day before Hurricane Katrina hit New Orleans in August 2005. Then like most people in the path of the hurricane, she headed out of town.
“In my mind, I was only heading to Austin [Texas] in anticipation of Katrina for a long weekend and didn’t pack all of my medications and supplies,” she said. Hoagland didn’t have a prepared container of supplies, including medications, food, hypo treatments, glucose monitoring devices packed and ready to go – something she would later regret.
Dealing with diabetes management every day takes considerable effort, and even when we’re on our A-game, things can at times get overlooked. It’s important to anticipate what might be needed in the case of a natural disaster, so that the fight or flight response due to an adrenaline rush doesn’t get the better or you and your health.
Growing up in Tornado Alley (Oklahoma) means long ago I developed a game plan for emergencies, so that an impending tornado, and the need to leave my home, would not imperil my diabetes management.
I wanted to reach out to others who have been in this situation, and to Carol Atkinson, an expert at the Diabetes Disaster Response Coalition, to hear more about surviving natural disasters and the tips and tricks they have found helpful. The bottom line is that everyone should be prepared to leave their home in case of an emergency with everything they need to make it through the crisis. Being prepared and having everything ready to grab and go means when a natural disaster strikes, you don’t have to face making layers of decisions, delay your departure, or augment your flight or fight response.
To be prepared, think about all the supplies you will need:
- Medications: Put a supply of all your medications in separate containers to last a week or longer, and think about how to keep insulin at the right temperature, such as an instant cool pack.
- Injection supplies: syringes, your insulin pens, extra pump supplies
- Food, a source of glucose, water to stay hydrated: a supply of glucose tabs works really well, some bottles of water, and some food that doesn’t spoil
- Monitoring supplies – like my CGM, a backup blood glucose meter and strips, and a way to measure ketones
- Copies of prescriptions
- An emergency contact list contact in case of an emergency
- Cellphone charger
- Batteries, an ID, and cash
The morning before Hurricane Katrina hit the banks of New Orleans, Hoagland was in a panic – not a good mindset when it comes to making sure she would have everything she would need to survive the catastrophic storm. As she gathered her things in a hurry, she realized she had nowhere to go. She called her son and daughter-in-law, who called friends until they found a place in Austin where she could stay. Despite the fact that it takes eight hours to drive to Austin from New Orleans, she left unprepared.
“I drove straight for two days because you couldn’t stop; there was nowhere to stay,” she recalled. “The rest areas were packed and I had to keep moving. I was fearful for my life and my animals – we had to make it to Austin. It was a nightmare and I wasn’t prepared. In retrospect, I was in survival mode, fueled by adrenaline and weathering high blood sugars.”
One of the many things we might forget as people living with diabetes is how much of an effect adrenaline and stress can have on our blood sugar. It is in our best interest to take the necessary precautions well in advance to lessen the burden on our health when disaster strikes. That includes having the technology you need to test your blood sugar, the medications you need to manage your glucose or other conditions, and back-up emergency supplies like food, batteries, and water.
I reached out to Atkinson, co-chair of the Diabetes Disaster Response Coalition (of which diaTribe is a member) and director of Insulin for Life USA, to find out what advice she has for how to survive the unexpected. She emphasized the importance of preparedness, especially for people living with a chronic illness.
“Always be prepared by building your preparedness kit well before disaster hits and make it customizable to your needs,” Atkinson said. “Be sure to check your kit every quarter to make sure nothing has expired. Other things to consider when packing your preparedness kit – a laminated copy of your prescriptions, photo identification, and cash.”
Atkinson suggests leaving the checklist to the experts so you don’t have to worry about making a list yourself. The Diabetes Disaster Resource Coalition makes it easy by providing a downloadable preparedness plan checklist. And you can find even more resources from the coalition here.
In 2016, Cynthia Celt and her husband, Mike, set off on an adventure in Costa Rica. After a four hour van ride in the middle of the night in heavy rain, the road was almost a foot deep with mud, and they found themselves stuck in a landslide.
Rescue trucks soon arrived to extract them from the sea of mud. Before Celt knew what was happening, her bag containing all her diabetes supplies was placed into a truck and took off into the dark hills of the unknown country without her. She rode in the back of another truck back to the now powerless resort safely, but without her bag.
“My phone was dead, so I didn’t have my Dexcom readings,” Celt said. “My meter, chargers, and cables were in the back of another truck, which didn’t matter because I had no electricity to charge them. I had little bits of all my diabetes supplies with me, but not nearly enough to sustain me for the entire trip. I was scared to dose as I couldn’t check and had just a candy or two that remained in my purse to treat possible lows.”
Not having access to your diabetes supplies is scary, but Celt said she learned some valuable lessons from this unfortunate experience, including:
- Always have a blood glucose meter and plenty of strips. “I had somehow failed to bring a meter,” she said. “Lesson learned 100 times over. I now carry a meter and more strips than I will need with me in my purse, even if only headed out for just a few hours!” Make sure that you have all the diabetes supplies you need to manage high or low blood sugar – including your medications and insulin, emergency glucagon, glucose tablets or small snacks, and a blood ketone meter.
- Having a cell phone battery charger can come in handy. “What saved me when I did get our bags was a 72-hour backup phone charger,” she said. “It allowed me to finally see my blood glucose digits in real time again!” Make sure you have emergency backup batteries and chargers.
- Research what services will be available to you in the event of an emergency (hospitals, pharmacies, stores to pick up low supplies, etc.). Though this was not her first diabetes travel fumble, being stuck in the dark in a landslide rattled her enough that she now packs back-up diabetes supplies for her back-ups!
- Don’t be afraid to cause a “fuss” or make a scene if it means having access to the things you need to stay alive. “I should have held onto my bag and helped them understand my life depends on these supplies,” she said. “I was afraid and embarrassed to make an already challenging situation difficult.”
Atkinson stressed that same point, “When evacuating or during any emergency situation,” she said, “define yourself as an insulin dependent person living with diabetes, if you are one. Speak up for yourself.”
In April 2021, Celt was thrown into yet another natural disaster scenario – one that that she had no way to prepare for.
She and her family were camping with friends in the sand dunes not far from their home in Boise, Idaho. They’re fairly seasoned campers, and this was supposed to be just a quick weekend getaway, nothing extreme as far as adventure goes.
She was cruising along in their kayak with her young daughter Madeline and her friend while her husband was in another boat fishing with the others.
“I began to feel the air change and heard sirens from a nearby air base,” Celt recalled. “I saw picnickers scrambling on the shore and then I looked up. What I saw was something I can hardly detail with words. The largest, most sky covering, thunderous sounding wall of sand was charging towards us. It was picking up trees and boats, tossing around bikes and pieces of campers on the land.”
Later they learned the storm had overturned semi-trucks and vehicles along the highway. It was what is known as a Haboob, a desert sandstorm common on the Arabian peninsula.
Thankfully before it hit, they were able to make it to shore. Celt grabbed the two small children and slung the dry bag carrying all her diabetes “gear” over her arm.
When out on the water all of her diabetes supplies are always stashed together in a single dry bag. That makes it easy for her to “grab and go”.
“I ran for the hopeful safety of our SUV perched on a shore ridge,” she said. “We piled in and watched as it thundered toward us.”
After several hours they were able to drive to their camper, only to find it ravaged by the storm. The winds did not let up for three days, and they slept in their SUV overnight. However, this time they were a bit more prepared. Celt said, “We always keep an emergency/hidden stash of low supplies, food, and water in the vehicle when camping.”
This scenario was a stark reminder of how quickly disaster can hit. Celt’s words of advice: “It’s impossible to be prepared at all times when living with diabetes. But having your supplies organized, and easy to access and grab on the way out, is incredibly valuable.”
In a different kind of emergency earlier this year, when the pandemic was raging, I packed my bags and relocated to San Antonio, Texas. My casita was the perfect isolation get away, until disaster struck. An unexpected cold front lingered in areas of central Texas where the people and the infrastructure were not equipped to handle below zero temperatures and power outages.
I lost power for days, but fortunately had a gas stove and access to a wood burning fireplace. I also was able to connect with neighbors, and we pooled our resources.
I didn’t fear freezing to death, but I worried my insulin might freeze. However, in the haze of stress I was feeling, I reminded myself the refrigerator wouldn’t get colder than it already was – and the insulation would keep my insulin from freezing. It wasn’t rocket science, but it was clear that my decision fatigue was in full swing. In a situation like this, when freezing your insulin is of great concern, diaTribe’s scientific and medical advisor Dr. Francine Kaufman suggested that you take out a fresh bottle of the insulin you need (basal, prandial, or both) and keep it either in a pocket or a small pack next to your skin. This way you know that you’ll have insulin that won’t freeze.
Stress, both mental and physical, can make diabetes management a nightmare. Keeping my cell phone charged for my CGM data was crucial. Luckily, my Subaru had plenty of gas, so once a day I would sit in the car parked on the street just outside my casita, crank up the heat and charge my phone.
But just when I thought we could get back to normal, our area was notified the water was not safe to drink. I’ve never been in a situation like this and was thankful to have the gas stove to boil water when needed. Not an ideal situation, but I managed.
This entire situation made me think deeply about what’s important when faced with a natural disaster and what things I can realistically do to prepare in advance. Here’s my checklist:
- HAVE THE EMERGENCY KIT READY TO GO way before an emergency, with a list of all the supplies already in it and what you need to add before you go – like your insulin
- If you are going to shelter in place, prepare by stocking up on your diabetes supplies and things like non-perishable food, water, batteries, toilet paper, etc., when your budget allows.
- STAY CALM. It’s okay to be scared and worried, but having your wits about you will make it easier to focus on the items you need to pack.
- It’s okay to ask for help whether it be for emotional support or supplies. Don’t be embarrassed to contact friends, family, neighbors, local shelters, food pantries, churches, and patient assistance programs. You can also always go to an urgent care facility or hospital if needed. Don’t hesitate in these situations and do what is best for your health and safety.
After some trial and error, I developed a system that makes chaotic situations easier for me to manage. I try to ask myself in these situations, what will I need to survive for at least the next 30 days? Below is a checklist that helps me stay focused.
- First, I inventory my supplies so I know what I have and where it is located.
- Then I locate a waterproof tub or bag (purchased well in advance) that I can pack my supplies into.
- Finally, I start packing my supplies, including:
- Insulin in a refrigerated case – this is the very last thing I throw in the tub when I am headed to an emergency shelter
- Syringes for my medication
- A copy of all my prescriptions
- Blood glucose meter and plenty of test strips
- Any CGM supplies I might need including sensors, applicators, and my phone
- Insulin pump supplies
- Low blood sugar snacks and glucose tablets
- Other medications I might need (such as an inhaler, blood pressure pills, glucagon pen, etc.)
- My driver’s license, passport, cash, and credit cards
- My diabetes bracelet or disability jewelry
- Emergency supplies like a flashlight
No one wants to prepare for a natural disaster, but if you take the time now to make sure you have everything you need, you won’t throw your diabetes under the bus when catastrophe strikes.
Below are a few helpful sites to make your natural disaster preparation easy:
- Diabetes Disaster Response Coalition website
- Patient Preparedness Plan, Diabetes Disaster Response Coalition
- Diabetes Disaster Preparedness Plan, Beyond Type 1
- Tips for Emergency Preparedness, ADA
- My Diabetes Emergency Plan, AACE
And check out some other articles you might want to visit for tips and tricks:
- Hurricane Danger: A Diabetes UPDATE on How to Get What You Need and Give What You Can
- Preparing for Natural Disasters: Strategies for People with Diabetes
- When Hurricane Harvey Arrived, They Kept the Diabetes Community Afloat
Amber Clour was born and raised in Norman, Oklahoma. Twenty-one days after her eighth birthday, she was rushed to Children’s Hospital where she spent two weeks learning how to live her new life with type 1 diabetes.
Since then, her life has been filled pursuing her passion for art, advocacy, non-profit ventures and travel. In 2015 she stepped down as Executive Director for a community artspace and gallery she founded to co-found DiabetesDailyGrind.com and the Real Life Diabetes Podcast. Amber’s – no filter – approach to sharing an honest look into her daily life resonates with many in the diabetes community. She hopes her story and those of podcast guests remind ALL people living diabetes – you are NOT alone.
There are many reasons we snack, both good and bad. Some snacks are healthy and helpful, but sometimes we snack out of boredom, stress, or anxiety.
Can snacking actually help your diabetes management? Yes! Some foods and habits can help keep your blood glucose in your desired range. We met with registered dietician and strength and conditioning coach, Ben Tzeel, to discuss snacking!
Best Overall Snacks
Snacks that include protein tend to keep you satiated, and promote stable blood sugars over time. A snack with a large amount of fast-acting carbohydrates may spike your blood glucose quickly and lead to a low afterward, while a snack high in fat may contribute to elevated blood glucose hours later.
For folks following a ketogenic or ultra low-carb diet, a mini charcuterie snack with cheese, meat, and pickles might work well. And for those looking for something quick and easy, staying under 15 net grams of carbs (like the ones found in this list) works well to get you to your next meal. One of Ben’s favorite brands is the NRG bites from NRG Foods, with ~110 calories per bar and 4 to 6 grams of fat, 8 to 10 grams of protein, and 8 to 12 grams of net carbs (depending on flavor).
Snacks and Dawn Phenomenon
While there isn’t a magical snack that stops dawn phenomenon, there are some foods that don’t contribute to higher blood glucose levels overnight. Dawn phenomenon, or dawn effect, is when blood sugar rises in the early morning from about 2 am until 8 am. In order to wake up, hormones such as cortisol and glucagon are released. These trigger the liver to increase glucose production. Normally, the pancreas would then produce insulin to adjust. However, the impaired (or complete lack of) insulin response characteristic of diabetes causes blood sugar to rise. Small snacks with protein and fat work better after dinner than snacks containing carbohydrates. Leftover protein from dinner or a small serving of nuts, such as low-carb trail mix, works well!
Best Snacks Prior to Exercise
While this may seem counterintuitive if you’re counting calories for weight loss, our bodies need fuel to stay active for longer periods of time. In certain situations, having a snack before exercising can help keep blood sugar stable. Please note, we don’t recommend having a snack and giving an insulin bolus to cover for the snack. For pumps using automated insulin delivery (AID) you’ll need to pay attention to timing. Eat it too soon and an AID pump will see a rise in BG and begin to adjust, giving you more insulin. Definitely not what you want right before exercising!
Ben recommends having your snack 30 to 45 minutes before exercise, giving your stomach enough time to start digesting the food and to stabilize your blood glucose. Try avoiding anything too high in fat or dairy products to prevent gastrointestinal upset. Staying below 20 grams of carbohydrate, mixed with some protein and fat, will help slow the absorption and blood glucose rise, and avoiding a large spike before exercising.
If you’re taking long-acting insulin or a medication that lowers your blood glucose, you may find having a small snack beneficial in preventing a low (hypoglycemia) during exercise. If you’re using an insulin pump and adjusting your basal rates or using an exercise profile, you may not need or want a snack prior to a short-duration exercise. If you’re using an insulin pump, you may find it useful to reduce your basal rates 30-90 minutes prior to exercise, or to use the exercise/activity function rather than snacking for short duration activity. Exercising for longer than an hour? You may want to include food as a way to manage your blood glucose levels and/or fuel your body for exercise. For more information about longer-duration exercise and type 1 diabetes, read more from Dr. Mike Riddell and his colleagues in the Exercise Management in type 1 diabetes: a consensus statement.
No matter the way of eating you follow, you can adjust snacks to fit your lifestyle and help keep your blood sugar in your desired range!
Our thanks to Ben Tzeel from Your Diabetes Insider for joining our online session and for providing his expertise and insights. To learn more about or contact Ben, you can find him on his website or Instagram page.
Riddell, Michael & Gallen, Ian & Smart, Carmel & Taplin, Craig & Adolfsson, Peter & Lumb, Alistair, et al. (2017). Exercise management in type 1 diabetes: A consensus statement. The Lancet Diabetes & Endocrinology. 5. 10.1016/S2213-8587(17)30014-1.
This content originally appeared on diaTribe. Republished with permission.
By James S. Hirsch
The discovery of insulin in 1921 was heralded as the cure for diabetes. The reality was different.
Insulin, to be sure, could temporarily lower blood sugars to near-normal ranges, but it could also cause hypoglycemia – blood sugars that are too low – that could lead to shakiness and confusion or, in extreme cases, seizures, loss of consciousness, or death. Insulin was a daily, self-administered drug, but if used incorrectly, it could kill a patient just as well as it could save a patient. No self-administered therapy, before or since, has quite those same attributes.
What’s more, insulin’s therapeutic powers were overestimated. Yes, insulin lowered blood sugars, but maintaining near-normal levels was still very difficult – and elevated blood glucose over time was still dangerous. As a result, by the middle of the 1930s, patients who were taking insulin began developing serious complications caused by elevated glucose levels, including damage to the eyes, kidneys, nerves, and heart. Insulin hadn’t cured anything but had turned diabetes from a deadly condition into a chronic condition, and a perilous one at that. At the dawn of the insulin age and for many decades thereafter, even those who understood the importance of maintaining near-normal blood sugars did not have the tools to do so. Blood sugar levels were measured by proxy through urine tests, in which samples had to be boiled for three minutes. Simpler methods were developed by the 1940s, but home glucose monitoring was not available until the late 1970s.
Until then, patients – unaware of their blood sugar levels – gave themselves insulin doses flying blind.
But few people outside the diabetes world knew about the daily rigors and risks of the disease – not only because it affected a relatively small percentage of people but also because the insulin narrative was too powerful.
Diabetes, after all, had been cured or at least resolved. That’s what all the pictures showed. That’s what the headlines blared. And that’s what the ads promoted.
Eli Lilly’s ads, for example, initially touted insulin as “An Epoch in the History of Medicine” and later featured a beautiful bride on her wedding day, kissing her beaming father, with the tagline, “Our favorite picture of insulin.”
Even that picture paled in comparison to the astonishing newspaper and magazine stories about insulin, and not just those about Elizabeth Evans Hughes. Insulin was a redemptive tale about science and survival.
Eva and Victor Saxl were Czech immigrants who fled to Shanghai during World War II. There, Eva was diagnosed with diabetes, and when her insulin supplies ran short, Victor, a textile engineer, found a book that described how to make insulin and, using the animal organs from a nearby slaughterhouse, brewed up enough insulin for his wife to survive. After the war, they immigrated to the United States, and when their story was discovered, they soon found themselves on numerous radio and television shows, including Edward R. Murrow’s, and a movie was also produced – about a husband’s devotion to his wife, expressed through the salvation of insulin.
Other life-saving medical breakthroughs occurred – antibiotics in the 1940s, the polio vaccine in the 1950s – and these would treat more people than insulin. But the unique circumstances of insulin’s discovery, with the young, untested scientists finding the potion that would bring children back from the brink of death, was too dramatic to ignore. In 1988, that story was the subject of a television movie on Masterpiece Theater called “Glory Enough for All,” based on Michael Bliss’s definitive book, “The Discovery of Insulin.”
I watched the movie on PBS when it was released, and it featured the brawling Toronto researchers – Banting and Collip literally came to blows over control of the experiments. But ultimately, the movie was about the triumph of medical science in saving dying children, and among the researchers, there was “glory enough for all.”
And then the movie ended.
There was nothing about living with diabetes – about the wildly fluctuating blood sugars, about the relentless demands, about the injections and the doctor visits and the complications, about the dietary restrictions, about the stigma and the isolation and the limitations of insulin.
“Glory Enough for All” was introduced by Alistair Cooke. An American-born Brit with a silver tongue, Cooke was enthralled not only by insulin’s inspirational story but also by the phrase “islets of Langerhans,” used to describe the island of pancreatic cells discovered by Paul Langerhans. “Islets of Langerhans” just rolled off Alistair Cooke’s tongue. To him, insulin was not just a miracle. It was poetry.
The lyrical beauty of insulin was lost on patients. Many of them, in fact, were frustrated that their own stories weren’t being heard. The parents of young patients were frustrated as well.
In 1970, a professional singer in Philadelphia, Lee Ducat, had a 10-year-old boy with type 1 diabetes, and she was miffed by the breezy disregard of his doctor, who told her that “insulin was the cure.” Ducat knew that wasn’t true, so with several other parents, she formed the first chapter of the Juvenile Diabetes Foundation (which is now the JDRF). Other parents soon opened chapters in New York, Washington, New Jersey, and Miami, and their mission was to educate the public about the stark challenges of diabetes in hopes of raising money and finding a cure.
They had no use for the American Diabetes Association, which was founded in 1940 and for many years was little more than a social club and referral service for physicians. As far as the parents were concerned, the ADA was complicit in perpetuating the jaunty insulin narrative that had hurt the cause for decades. Unless the truth about diabetes was known, how could lawmakers, regulators, philanthropists, and journalists – not to mention clinicians – do what had to be done to improve the lives of people with diabetes?
That question was driven home when the JDF chapter in Miami bought a full-page newspaper ad in 1972 to publicize its cause. The ad featured a little boy in a crib holding a glass syringe, and it described the many complications that could arise from diabetes, including blindness and amputations. The headline read, “The Quiet Killer.”
On the day the ad appeared, Marge Kleiman, whose son has type 1, was working in the JDF office, and the phone rang.
“I’m Charles Best,” the caller said, “and I discovered insulin.”
Now retired, Best had become an icon who, after Fred Banting died in 1941, carried the mantle for the Nobel-winning team that had discovered insulin. Best had been praised by the pope, the queen of England, and other heads of state, and he had given the keynote address at the ADA’s first meeting and later served as its president. He happened to be in Miami on the day the JDF ad appeared, and he was outraged.
“What kind of propaganda are you using?” he screamed. “You’re frightening people! This is not the way it is!”
Kleiman knew better. “Dr. Best, what you did was wonderful,” she said. “It allowed people to live longer. But we’re not trying to frighten people. If you tell the truth, maybe they can avoid these complications. Please don’t tell us to keep quiet.”
The JDRF, now a massive international organization focused primarily on type 1, has continued to tell the truth about diabetes – and fund research – ever since, but changing the insulin narrative was not going to be easy.
Patients could at least take solace that the insulins kept getting better. The first extended-action insulins were introduced in 1936 and continued with widely used NPH insulin (1946) and the Lente insulins (1951). But the real improvement came in the 1970s, spurred by concerns about actual insulin supply. Meat consumption was declining, and slaughterhouses were cutting production, while the number of people with diabetes had been rising steadily (in 1976, there were about 5 million Americans with the disease). At some point, insulin demand could outstrip the animal-based supply.
As described in the book Invisible Frontiers: The Race to Synthesize a Human Gene, by Stephen S. Hall and James D. Watson, the specter of an insulin shortage triggered a race to develop genetically engineered insulin using recombinant DNA technology. Investigators succeeded by inserting the insulin gene into bacteria, which produced insulin that was chemically identical to its naturally produced counterpart.
The first human insulins, Humulin (made by Eli Lilly) and Novolin (made by Novo Nordisk), were introduced in the 1980s. Whether they were superior to animal-based insulins is a matter of debate, but they alleviated fears about an impending global insulin shortage.
Moreover, researchers soon discovered that changing the order of two amino acids in the human insulin molecule created a faster-acting formulation, and that led to the introduction of Humalog (1996) and Novolog (1999). Known as “insulin analogs” because they are more analogous to the body’s natural release of insulin, they were considered clear advancements. Another huge leap came with long-lasting basal insulin analogs, specifically Lantus (by Sanofi in 2000) and Levemir (by Novo Nordisk in 2005). These insulins keep blood sugar levels consistent during periods of fasting and, typically taken once a day, replicate the insulin release of a healthy pancreas. They were immensely popular and also used by many type 2 patients – Lantus was a $5 billion a year drug by 2011.
The improved insulins changed how patients cared for themselves, as the new formulations led to “basal-bolus” therapy – a 24-hour insulin complemented by a mealtime insulin – and that became the standard of care for type 1 diabetes. (Insulin pumps use the same basal-bolus framework.)
A new era of diabetes care, thanks to these insulin breakthroughs, appeared to beckon.
Stay tuned for part three of this riveting story next week!
I want to acknowledge the following people who helped me with this article: Dr. Mark Atkinson, Dr. David Harlan, Dr. Irl Hirsch, Dr. David Nathan, Dr. Jay Skyler, and Dr. Bernard Zinman. Some material in this article came from my book, “Cheating Destiny: Living with Diabetes.”
James S. Hirsch, a former reporter for The New York Times and The Wall Street Journal, is a best-selling author who has written 10 nonfiction books. They include biographies of Willie Mays and Rubin “Hurricane” Carter; an investigation into the Tulsa race riot of 1921; and an examination of our diabetes epidemic. Hirsch has an undergraduate degree from the University of Missouri School of Journalism and a graduate degree from the LBJ School of Public Policy at the University of Texas. He lives in the Boston area with his wife, Sheryl, and they have two children, Amanda and Garrett. Jim has worked as a senior editor and columnist for diaTribe since 2006.
The brain affects diabetes, and diabetes affects the brain, a complex relationship that goes in both directions.
For many patients, the brain-metabolism connection means challenges and health declines. Most people that have experienced hypo- and hyperglycemia are well aware of the way that blood sugar troubles can inflict brain fog and other minor short-term malfunctions. Unfortunately, that’s just the start of it. The cognitive dysfunctions associated with diabetes can become permanent.
The first days of the recent American Diabetes Association Scientific Sessions featured several sessions on the intersections between brain health and diabetes. Some presenters sketched out the scope of the problem; others suggested potential solutions. Patients with both type 1 and type 2 have a lot to think about.
The Vicious Cycle
At the heart of the brain-diabetes relationship is a negative feedback loop that pushes people towards bad decision-making and bad health outcomes. Hyperglycemia leads to both short- and long-term cognitive impairment, which leads to increasingly poor glucose management decisions, which leads to more cognitive impairment, a vicious cycle if there ever was one.
Australia’s Dr. Fergus Cameron sketched out this dynamic:
This feedback loop helps define how and why brain issues tend to snowball as the years go by.
The Developing Brain
Diabetes can impact brain function at every age, but perhaps most important is its immense effect on the developing brain. Acute and chronic hyperglycemia during those early, critical years of development can easily cause lasting damage.
Many of the most important negative cognitive effects of type 1 diabetes seem to occur in the first days and weeks leading up to diagnosis. Just days after diagnosis, children already perform more poorly than expected on intelligence tests. “We’re seeing impacts right from the get-go,” said Dr. Ferguson.
The severity of hyperglycemia at diagnosis is also significant: children that are diagnosed during diabetic ketoacidosis (DKA) see much more cognitive impairment than children that never experience that critical state. That difference alone might mean as much as 6 points of IQ, on average.
We don’t like to dwell on immutable factors—today, you cannot change the circumstances around your diagnosis or that of a loved one. It is more important to people with diabetes to learn what they can do now to help improve their health and quality of life. The answer to that is clear: avoid chronic hyperglycemia.
Mental Issues Accumulate
The effect of chronic hyperglycemia is cumulative and comprehensive. As people with type 1 diabetes age, they perform worse on tests of executive functioning, IQ, information processing speed, and memory. The differences are bigger in high school than in elementary school, and the gap just continues to widen throughout adulthood. A 2019 study found that an incredible (and terrifying) 48% of older adults with longstanding diabetes displayed “clinically significant cognitive impairment.”
Dementia and Diabetes
Dr. Anna Marseglia, a neuropsychologist with Sweden’s Karolinska Institutet, took the baton to discuss cognitive impairment and dementia in old age. Most of her talk referred to patients with type 2 diabetes, although it’s possible that patients with other forms of diabetes could still benefit from her conclusions.
Diabetes is a major risk factor for dementia—in fact, the link between metabolic dysfunction and late age mental decline is so clear that Alzheimer’s disease has sometimes been called type 3 diabetes.
But diabetes is not destiny—the risk of dementia is significantly amplified by lifestyle.
The Power of Activity
Dr. Marseglia presented the results from her own study, a look at thousands of older Swedish adults with diabetes, to see if an active lifestyle might prevent progression to dementia. Researchers tried to track both the number of leisure activities that participants enjoyed and the strength and extent of their social connections. Would an active social life reduce the risk of dementia?
The answer was yes, and the correlation was enormous, as you can see in the graph below. “Inactive” adults with diabetes were vastly more likely to develop dementia than “active” adults, whose risk was barely higher than that of people without diabetes. Dr. Marseglia suggested that if all of the adults in the study had led “active” lives, as many as 48% of dementia cases could have been avoided.
The study suggests that while both diabetes and social inactivity are hazards in and of themselves, the real danger is when those two conditions coexist.
Accordingly, Dr. Marseglia highlighted two broad strategies to improve one’s risk of late age cognitive decline. The first is to employ strategies that reduce physical cardio-metabolic burden: improved glucose control, healthier diet, exercise, weight loss, quitting smoking, and so on. The second is to create a kind of resilience within the brain through education, challenging work, and vibrant social activities.
The protective effect of an active life is physically verifiable. Adults labeled “inactive” actually have significantly smaller brains than active adults. Activity, by preserving brain volume, somehow overrides the vascular damage associated with diabetes.
An active life to fight dementia doesn’t just start in old age—good health, mental stimulation, and social activity early in life will also protect the brain from decline decades later.
Executive Functioning in Teens
Teens have a particularly tough go of it; typically, they are the age bracket with the highest A1c.
Anxiety, depression, and diabetes burnout are distressingly common in the teenage years. Such mental health issues can easily throw diabetes decision-making out of whack. As Oregon’s Dr. Danny Duke stated, “When we’re emotionally dysregulated, it affects all of our other executive functions.”
Executive functioning, explained Oregon’s Dr. Danny Duke, is the part of the brain that’s “in charge of making sure things happen when and how they’re supposed to happen.” It’s like “the conductor of the orchestra of our thinking.”
Good executive functioning is of paramount importance to all humans, but especially to those with diabetes, who must almost continually balance short- and long-term costs and benefits. And because executive functioning usually does not fully mature until age 25, it’s no surprise that teens can have so much difficulty managing their conditions.
Some teens have better executive functioning than others, and those that struggle to make good diabetes management decisions need as much help as they can get. Otherwise, the vicious cycle will rear its ugly head once again: poor executive functioning leads to reduced glycemic control, and reduced glycemic control leads to poor executive functioning.
While Dr. Duke focused mostly on the ways that executive functioning failures could lead to dangerous blood sugar swings, he had little doubt that the converse was equally true:
I’ve worked with a lot of these kids that are hanging up there in the mid-300s [mg/dL], doing the bare minimum necessary to stay out of DKA. When we get them back down into range, they’ll often say ‘Wow, I had no idea how bad I felt and how foggy I was thinking.’
A Family Affair
For kids and teens, good diabetes decision-making is a family affair. Dr. Maartje de Wit, of Amsterdam University Medical Center, pointed to several studies assessing the role that parental executive functioning plays in diabetes management success.
Naturally, in younger children, parents will make all significant treatment decisions, but even as children age, parents continue to play a surprisingly big role in treatment success (or lack thereof). Studies show that, for example, maternal executive functioning skills have a significant influence on a child’s A1c levels, and that both the father’s and mother’s involvement played a big role in delivering better glucose control, especially when the children had executive functioning issues themselves. This did not change as children aged, even as they presumably took on more of their own management decisions.
This sounds obvious—less disciplined kids need more help—but it’s not necessarily so easy to determine who needs help, and how to help them.
Identifying and Improving Executive Function Issues
Children and teens with subpar executive function, when asked why they can’t adhere to their diabetes treatment regimen, may say things like “I forget” or “I’m lazy,” or “I don’t know why.”
Whether by nature or nurture, executive function problems are often shared between parents and children. In a presentation aimed at medical professionals, Dr. Rachel Wasserman encouraged practitioners to consider disorganized or scatterbrained parents a real warning sign of potential executive function issues in children.
If you recognize these sorts of behaviors in your child (or in yourself!), it might be worth trying to work with your child to improve his or her executive functioning skills.
Dr. Wasserman recommended activities that require repeated practice and offer progressive challenges. That could describe schoolwork and related academic pursuits; it could also describe athletics like martial arts and yoga.
Today there are also a dizzying number of scheduling apps that people with diabetes can use to help enforce good habits. More old-fashioned techniques, like alarm clocks and post-it notes, can be equally effective. Dr. Wasserman cautioned that advanced diabetes technology, such as insulin pumps and continuous glucose monitors, as helpful as they can otherwise be, do not necessarily lessen the cognitive load on the executive functioning system.
Diabetes has a significant negative effect on cognitive abilities. In type 1 diabetes, this effect can begin very early in life, with the first bouts of acute hyperglycemia leading up to diagnosis. In both type 1 and type 2 diabetes, the damage wrought by high blood sugars is cumulative, and symptoms are likely to get worse over the years.
Hyperglycemia can also set a vicious cycle in motion, whereby high blood sugars cause bad decisions, which just cause more high blood sugars.
The best way for a person with diabetes to avoid cognitive decline, probably, is to avoid chronic and acute hyperglycemia—the more time you spend with your blood sugar in a healthy range, the more likely that you will avoid accumulated damage to your brain.
It also may be possible to strengthen executive functioning skills and make the brain more resilient to age-related decline by enjoying a robust social and intellectual life. Hobbies, education, challenging work, and community involvement—in short, an active and stimulating mental life, at every age—may protect against eventual decline.