How Type 1 Diabetes Brought My Father and I Closer Together

This content originally appeared on Beyond Type 1. Republished with permission.

By Samuel Frank

Lifelong Reality

I have no memories of my father without diabetes. My father was diagnosed with type 1 in 1989 when I was 3 years old. Diabetes and Papa Frank were always hand in hand, one and the same. As a chemistry professor and academic, he seemed to get a thrill from stable numbers and consistent control and he would never shy away from talking about it.

My father is incredibly loving, especially to his family. He loves to share a story or an exciting idea. I’m blessed to have grown up with such a loving, kind-hearted father — at no point were aggressive assertions of masculinity expected from me nor my brother. He is also very particular, specific, and regimented — presumably from having type 1 for so many years, or maybe, that’s just how he is.

Growing up, my father would work as a professor and come home around 5:00 p.m. And he had a list of maybe ten meals he would prepare, with occasional variations. He developed a “square meal” that was his baseline, average, expected, protein-and-vegetable rich meal. No snacks or sugary beverages, caution and restriction while eating out — all told, a marvelous diabetic. As a child, I don’t recall a moment when his health was in danger or his diabetes management was questioned. And it wasn’t a mystery; my father loved to disclose his diabetes management. A dinner out would often end with a round of, “Guess what my blood sugar is?!” And as a child, I knew enough about the symptoms of hyper- and hypoglycemia to make a prediction. When my father was on target after dinner, he was almost elated. The 115 mg/dL was a symbol of harmony for me. If my father was happy, I was too.

Kindred Spirits

I always saw myself in my father and he was always quick to relate to me. We both had one older brother, which created a powerful and unique dynamic of understanding. But it wasn’t just this. My father loved identifying our similarities and I loved being recognized, being seen, and losing that feeling of being alone. Today, I am 33, and this has remained ever so consistent. There have always been physical and emotional similarities between us. So, echoing my father, throughout my life, I imagined what it would be to have type 1. The poking and prodding of needles appeared horrific. And I often wrote it off, as he would be the first to remind us that he was 44 — later in life — when he was diagnosed. It happened the same way with his aunt and grandmother.

Samuel

Image source: Beyond Type 1

But it happened to me at 27, earlier than the other members in my family. I was in my second year of graduate school for social work and marvelously stressed. I went into DKA on December 27, 2013 while visiting my family in Fresno for the holidays. At one point in the weeks prior, I recognized some of the symptoms but attributed them to stress from graduate school and chose to ignore them. My family didn’t recognize the DKA since no one they knew had experienced it before, but they followed their instincts and my parents took me to the ER as I continued to get worse.

While traumatizing, it couldn’t have happened at a better time of year. After 3 days in the hospital, I took a week off from my internship in San Francisco and stayed home with my parents, acting as my father’s diabetes mentee. It was emotional and challenging and confusing, but I was so thankful not to have to do this alone.

So during that week, I dove into diabetes management, meals, and lifestyle adjustments. After meeting with a few endocrinologists and health educators, I learned about carb counting and daily totals. My father doesn’t carb count; since he has such a solid meal regimen, he knows how many units of insulin to take to maintain a functional rhythm. As I was learning how to bolus, he would lean over my shoulder, look at my plate, and create an approximation. My father owns his decision to use his square meal method instead of carb counting, stating, “I see it not as a calculation, but as an art.” I don’t think he’s wrong, but it felt divergent from the messaging I received from medical professionals. The nurse would tell me one thing but my Papa would tell me something else. I needed to make my own way.

The Same but Different

We were never apart, but diabetes brought my father and I closer together. To this day, it gives us something to talk about. I’m often captivated by his stories of obscure blood sugars at an inconvenient time, and I can share mine. When I’m fed up with abnormalities, my father is always there for support and advice. We learn together about modern technology to help our management and share information. Plus, most importantly, by growing up with a diabetic parent, he normalized the subject matter. I speak about my disease, my insulin pump, and management style with glee to my coworkers and friends. I think I notice a little bit of my father come through when I speak with good friends about a successful bolus for a carb-heavy meal.

Don’t get me wrong, we are also different people. I’m now 33 and don’t have children, so my lifestyle remains much more variable than my father’s ever appeared. My mealtimes are quite inconsistent, and my diet often fluctuates; I drink, I travel, I stay up late. But to this day, when he and I are eating the same meal and the same portion, it’s nearly the exact same size bolus that we give ourselves. I truly have my father’s disease. And that means I carry my family line ever so truly.

It always meant so much that I didn’t have to learn this alone. I wish for every parent of a child with diabetes to not just have compassion, but empathy and robust understanding, to normalize frustrations of the disease and its limitations for that child. I learned recently that type 1 isn’t always genetic, and often diagnosed earlier in life. The Frank family pancreas seems to just give out after a while, leaving us diagnosed later in life. But that makes our situation all the more unique, rare, and maybe even, special.

Source: diabetesdaily.com

Advancements in Treatment: The Use of Adjunctive Therapies in Type 1 Diabetes

This content originally appeared on diaTribe. Republished with permission.

By Paresh Dandona and Megan Johnson

Read on to learn about the research around GLP-1, SGLT-2, and combination therapy use in type 1 diabetes. Dr. Paresh Dandona is a Distinguished Professor and Chief of Endocrinology at the University of Buffalo, and Megan Johnson is a fellow on his team

For people living with type 1 diabetes, new treatments are finally on the horizon. The University at Buffalo (UB) Endocrinology Research Center is helping to revolutionize the treatment of this condition. Among the most promising new therapies are two non-insulin medications currently used in type 2 diabetes, SGLT-2 inhibitors and GLP-1 receptor agonists.

SGLT-2 inhibitors, such as Farxiga, act the kidney to help the body excrete more glucose in the urine. Meanwhile, GLP-1 receptor agonists like Victoza work in several different ways: increasing the body’s natural insulin production, decreasing the release of the glucose-raising hormone glucagon, slowing the emptying of the stomach, and curbing excess appetite. Some people with type 1 diabetes take these medications as an addition to insulin treatment as an “off-label” drug. To learn more about off-label, check out the article: Can “Off Label” Drugs and Technology Help You? Ask Your Doctor.

Why consider these medications?

In people without diabetes, the body is constantly releasing more or less insulin to match the body’s energy needs.  People with type 1 diabetes do not make enough insulin on their own and have to try to mimic this process by taking insulin replacement – but it isn’t easy.

People with type 1 diabetes often have fluctuations in their blood sugars, putting them at risk for both low blood sugars (hypoglycemia) and high blood sugars (hyperglycemia). Many individuals are unable to manage their blood sugars in a healthy glucose range with insulin alone. In fact, less than 30% of people with type 1 diabetes currently have an A1C at the target of less than 7%.

Can GLP-1 agonists be safely used in type 1 diabetes?

Over the past decade, the endocrinologists at the University at Buffalo and other research groups have been conducting studies to see whether GLP-1-receptor agonists can safely be used in type 1 diabetes.

  • The first of these was published in 2011 and showed a decrease in A1C within just four weeks of GLP-1 agonist treatment. Importantly, people given GLP-1 agonists plus insulin also had much less variation in their blood sugars, as measured by continuous glucose monitors (CGM).
  • Another study involved 72 people with type 1 diabetes who took GLP-1 agonist or placebo (a “nothing” pil) in addition to insulin for 12 weeks. The GLP-1 group had decreases in A1C, insulin requirements, blood sugar fluctuations, and body weight. People in this group did report more nausea – a common side effect of GLP-1 agonists.
  • Since then, multiple studies, some involving over 1000 people and lasting up to 52 weeks, have shown that GLP-1 treatment in people with type 1 diabetes can reduce A1C and body weight, along with insulin dosages.

Many of these studies, but not all, have suggested that GLP-1 agonists can do this without increasing the risk for hypoglycemia or diabetic ketoacidosis (DKA). There is also some evidence that GLP-1 agonists can improve quality of life in type 1 diabetes.

Who should consider GLP-1’s?

The effects of GLP-1 agonists seem to be especially strong in individuals who are still able to make some insulin on their own, although it also works in people who do not.

In one notable study, researchers gave a GLP-1 agonist to 11 people with type 1 diabetes who were still able to produce some insulin. To get an estimate of insulin production, they measured levels of a molecule called C-peptide, which is produced at the same time as insulin. In these 11 individuals, C-peptide concentrations increased after GLP-1 treatment. By the 12-week mark, they had decreased their insulin dosage by over 60%. Incredibly, five people were not requiring any insulin at all. Even though the study was very small, the results were exciting, because it was the first study to suggest that some people with type 1 diabetes had sufficient insulin reserve and thus, could – at least temporarily – be treated without insulin.

Can SGLT-2 inhibitors be used in type 1 diabetes?

SGLT-2 inhibitors like Farxiga have also shown tremendous potential. In two large studies called DEPICT-1 and DEPICT-2, adults with type 1 diabetes were randomly assigned to take either placebo or SGLT-2 inhibitor in combination with insulin. Over 700 people from 17 different countries participated in DEPICT-1, and over 800 people with type 1 diabetes participated in DEPICT-2. At the end of 24 weeks, people taking dapaglifozin had a percent A1C that was lower, on average, by 0.4 compared to people who had received placebo, and it was still lower, by over 0.3, at 52 weeks. The number of hypoglycemic events was similar in both groups.

As with GLP-1 agonists, people taking SGLT-2 inhibitors had weight loss and decreased insulin requirements. People taking SGLT-2 inhibitor, however, did have an increased risk of diabetic ketoacidosis (DKA). If individuals consider this therapy, they should be cautious about not missing meals or insulin, and not drinking large amounts of alcohol, as these behaviors can lead to increased ketone production.

Several other research groups, in trials recruiting up to 1000 individuals, have seen similar results when using this class of medications.  Researchers have been conducting additional studies to try to determine how best to minimize the risks associated with them. Farxiga (called Forxiga in Europe) has now been approved as the first oral agent as an adjunct treatment for type 1 diabetes in Europe and Japan.

Promising Combination Therapy

Now, endocrinologists are also looking at whether GLP-1 agonist and SGLT-2 inhibitor combination therapy could increase the benefits of each of these treatments. A study conducted on a small number of people showed that GLP-1 agonists can help prevent ketone production, so it is theoretically possible that this medication could reduce the risk of DKA that was seen with SGLT-2 inhibitors.

In an early study involving 30 people with type 1 diabetes who were already on GLP-agonist and insulin were randomly assigned to take SGLT-2 inhibitor or placebo, as well. People who received both drugs saw an 0.7% reduction in A1C values after 12 weeks, without any additional hypoglycemia. People on the SGLT-2 inhibitor did make more ketones, though, and two individuals in the combination group experienced DKA. Larger studies are now being conducted to expand on these results and learn more about how to give these drugs safely. The hope is that non-insulin therapies will soon be approved for type 1 diabetes. By unlocking the potential of these therapies, we can do more than manage blood glucose levels – we can improve people’s lives.

Source: diabetesdaily.com

Diabetes Love Letter: From Briana to Husband

By Briana Payne

Dear Aaron,

You are my husband, best friend, father to our children, and partner in crime. You were there in the instacare clinic on a Sunday morning April 24, 2016, when I got the dreaded diagnosis of diabetes. We later confirmed the following week that it was type 1 diabetes because I had the antibodies present that come with type 1. I walked into an instacare clinic confused why I was urinating so much, and found out it was sugar in my urine that was dumping out of my system, since I was dealing with undiagnosed diabetes. We thought it was a simple UTI that I could fix, and quickly found out it was a lifetime autoimmune disease.

Photo credit: Briana Payne

When I first got diagnosed, you were the one giving me my Levemir injections. Nine months into the diagnosis, I gave a continuous glucose monitor a chance. You helped me to put it on my body, especially in harder to reach places, like the back of my arm, or near my backside. You’ve always been patient with me and figuring out my diabetes with the technology, injections, cost of insulin, glucometers, diabetes appointments, etc.

Aaron, thank you for your sacrifices finding a job that will provide good insurance for me to switch to when I turn 26 in April 2020. You went out of your way to get a better insurance plan that will make your paychecks a little bit smaller, because you want to be able to afford our healthcare costs the best way.

Photo credit: Briana Payne

This disease is not pretty, nor is it cheap. I’ve dealt with some high and low blood sugars that have affected me, and you have been patient with me through it all. There are times to this day that I still feel guilty that I got this autoimmune disease six weeks after we got married. You could have left me after discovering that your new wife had a new chronic illness, but you didn’t. You have always been a very loyal and dedicated man — I cannot thank you enough. Amidst all of the struggles with costs and the daily to-dos is with this disease, I know we can continue to navigate this life together.

Happy Valentine’s, Aaron. Thanks for being my valentine.

Love,

Briana

Source: diabetesdaily.com

Diabetes Love Letter: From Eoin to Girlfriend

Editor’s note: I had the pleasure of meeting Eoin at a diabetes meetup in New York City last month. He had just won the Myabetic award for “Diabetic Male Fitness Influencer” and rightfully so since he motivates people every day to be the best version of themselves. He tackles affordability issues, stigmas and teaches his followers proper diet and exercise techniques. He is also a diabetic fitness trainer. You can follow him at @insuleoin on Instagram. 

By Eoin Costelloe

To my girlfriend,

Where can I start? It’s almost like we were both diagnosed. Just on different dates;

Myself with type 1 diabetes on 01.04.2012.

Without knowing, you were diagnosed with ‘second-hand type 1 diabetes’ on 08.10.18.

I feel it’s fitting for me, first of all, to thank you. Thank you for the time we’ve spent together, and thank you for everything you’ve done. I don’t think you truly understand how special you are.

When we started dating it was something you were interested in learning about, something you didn’t know much about, but something you didn’t know would almost become your full-time job, just as much as mine.

I remember explaining it to you, breaking things down; how we carb count, units of insulin required, the reasons, the complications, what it entails. At the time you knew a minimal amount. From then until now, you have become a diabetes expert.

Photo credit: Eoin Costelloe

Maybe looking back now, you wouldn’t have been so keen to take on such an admirable role as a girlfriend – as I’ve always said, ‘it’s an invisible disease.’

I often think of diabetes as a part of me that no one sees. It’s a disease that can let you live a normal life if you treat it with respect, but it’s always on your shoulder, it never takes any breaks and never leaves your side.

We often see in cartoons or movies how there is a devil on one shoulder and an angel on the other. For the past 8 years of my life, since being diagnosed, that devil has made a home on my shoulder. For 8 years he’s been there, day and night, sitting on my shoulder with no contender, no dispute or objection, no angel on the other side.

Since the day we met, you’ve been that angel. You’ve been the challenger.

Photo credit: Eoin Costelloe

You have always prioritized my health, even during the times when I didn’t. You’ve told me to ‘check your blood sugar’ when I was lazy about it, or prodded me to ‘take your insulin’ if it slipped my mind or yelled at me to ‘not eat another roll of sushi!’ You’ve cared more than I ever expected you to.

Sometimes I felt like it was a burden, almost like a third wheel in our relationship. Maybe there were times I didn’t want to stop and check my blood or pause to inject my insulin because we were in a perfect moment and didn’t want anything to ruin it. But you were the one to pause, you were the one to always reassure me that we were in it together no matter what.

Every injection, every high, every finger prick, every 3 am low blood sugar and every ‘regretful pizza’ eaten, you’ve been there. You’ve shown passion and intrigue to learn about this condition for the sole reason to help look after me. You’ve lived through it by my side and never once complained.

There are no words or phrases that can articulate my appreciation for you. You’re a star, chaim sheli!

Source: diabetesdaily.com

An Argument for Kindness in the Diabetes World

This content originally appeared on Beyond Type 1. Republished with permission.

By Lauren Salko

This is what I used to tell people when asked the difference between type 1 diabetes and type 2 diabetes: “type 1 diabetes is an autoimmune disease and type 2 diabetes is caused by poor diet and lifestyle choices”.

I still cringe when I think about how inconsiderate and sophomoric my comments were. Honestly, I was afraid of the stigma attached to type 2 diabetes and I wanted to make sure that people knew that my diabetes was not my “fault”.

Now, the way many people with type 1 talk about those with type 2 makes me absolutely livid. The worst part is this seems to be a growing trend in the type 1 diabetes (T1D) community. Growing up, my mom always told me that dimming someone else’s light would never make mine shine brighter.

I compete as an individual in professional skiing. This lesson is something that I strive to implement every day. The performance of others never has and will never have any bearing on my own success. When my teammates or friends grow and succeed, so do I. I do not need others to fail to reach my goals.

I understand that type 1 diabetes and type 2 diabetes are different diseases, and I’m aware that there are differences between the two. But hear me loud and clear: there is absolutely no reason for the type 1 community to put down those living with type 2 or to devalue their experiences as people with diabetes. I know this comes from fearing the blame people often place on those living with T2D being placed on you or your child. No matter how inaccurate it is, it still hurts when people pass judgment.

Here’s the thing: when you make negative statements about type 2 diabetes and its causes, you aren’t helping yourself. You’re just hurting others. Dimming someone else’s light doesn’t make yours shine any brighter.

Did you know that type 2 diabetes has a stronger link to family history and lineage than type 1? Did you know that insulin resistance causes weight gain, which can cause even more insulin resistance? What a vicious cycle.

We also need to recognize that a lot of the advances in technology and diabetes treatments we have come to rely on are available now because of the type 2 community. Only 5% of people with diabetes have T1D, so the type 2 diabetes community has a lot to do with the incentives and direction driving diabetes innovation.

The next time someone asks you about the difference between type 1 and type 2 diabetes, I hope you take the opportunity to educate! Don’t just take the easy way out and make negative (and often times incorrect) comments about type 2 diabetes. Be the biggest ally you can for everyone living with diabetes by standing up for all of us in the face of ignorance.

Diabetes is rough, no matter what kind you have, so have some compassion for your brothers and sisters who also deal with high and low blood sugars, counting carbs, taking medication, insurance fights, and fearing complications. Kindness will get us further than stigma and othering ever will.

Source: diabetesdaily.com

Automated Insulin Delivery: Six Universal Observations and Understandings

This content originally appeared on diaTribe. Republished with permission.

By Laurel Messer

Six universal facts about automated insulin delivery systems, and the things you should keep in mind about this revolutionary technology

Automated insulin delivery (AID) systems are moving towards the forefront of diabetes management. AID systems combine continuous glucose monitors (CGM) with smart algorithms to automatically adjust insulin delivery.

The Tandem Control-IQ system was recently cleared by the FDA, and the Insulet Horizon and Medtronic Advanced Hybrid Closed Loop systems are beginning pivotal trials. These are encouraging developments. As more systems move through the pipeline and eventually into the commercial market, important patterns are emerging in user expectations and user experience. As a diabetes nurse, certified diabetes educator and research investigator, I, along with my team at the Barbara Davis Center, have worked with nearly every AID system in the pipeline, and other systems that will never make it to market. Here are six insights we have gleaned, which seem to be universal (thus far) to all AID systems:

1. You can always beat an AID system with compulsive diabetes management

Many people with diabetes compulsively attend to diabetes care in order to achieve ultra-tight glucose ranges – and are the first to ask about automated systems. What ends up happening is that these “super-users” are invariably frustrated that the system is not yielding the same results that they were able to achieve with their own calculations and management. An important point is that many automated systems are excellent at reducing mental burden for taking care of diabetes, excellent at reducing hypoglycemia, and adequate at improving glucose levels. Humans can beat automated systems if they attend to diabetes care near-constantly. The individuals who will likely be satisfied with AID are those who are comfortable with an A1C in the 7s or above, but they want to reduce the mental load of adjusting settings and micromanaging high glucose levels. The most important question to ask is, “Why do I want to start using an automated system?” If it is to achieve near-perfect glucose levels, the system will likely disappoint. If it is to reduce the burden of “thinking like a pancreas” all the time, it may be a good option. AID will excel at the marathon of diabetes care but may disappoint in the hour-to-hour sprint.

2. Systems work best when you let them work

Using both research and commercial systems, we have seen all the ways to “trick” AID systems—entering phantom carbohydrates, changing set points, performing manual corrections, overriding recommended doses. More often than not, these behaviors lead to glucose instability – reactionary highs and lows from the system destabilizing. All systems will perform best if they are used according to user instructions. This is difficult for the individual who would prefer to micro-adjust settings or desire control over all insulin delivery. Most systems work best when users learn to trust them.

3. Give the system a chance – 2-4 weeks before deciding long term potential

It may benefit us to think about AID like a new significant relationship – it can take some time to “settle.” I mean this both on an interaction level (learning how to respond to alerts, when to intervene, when to let it ride) and on an algorithm level (allowing the system to adjust internal algorithm parameters based on usage). In addition, programmable user settings may need some adjustment in the first few weeks of use, so working with diabetes educators can be helpful for initial set-up and early follow-up.

4. Bolusing is still king

If I could go back in time, I would caution device manufacturers against any whisper of not needing to bolus with AID systems. Bolusing is the singular most important action a person with diabetes can do to optimize insulin delivery on current and near-future automated systems. This will be true until insulin action time gets exponentially faster or artificial intelligence gets better at predicting human behavior, neither of which is on the immediate horizon. In order for people with diabetes to see the best performance on any system (automated or manual), they need to bolus before carbohydrates are consumed. Specific to AID, the timing of the bolus (prior to carb intake) is especially important, as the system will automatically increase insulin delivery after an initial rise of glucose levels, so a late bolus (e.g., after the meal) could lead to insulin stacking and hypoglycemia.

5. Rethinking low treatments

Low glucose levels (hypoglycemia) still happen when using automated systems. What is different with AID is that the system has been trying to prevent the low by reducing/suspending insulin, possibly hours before the low occurs. This means that an individual may need to consume significantly fewer carbs to bring glucose levels back into range – perhaps 5-10 grams of carb at first, reassessing 15-20 minutes later. This can be difficult when wanting to eat everything in sight; however, it can reduce the chance of rebounding into the 200s after over-treating.

6. Infusion sets are still infusion sets

While AID algorithms are revolutionary, the infusion set is not. It is the same plastic or steel cannula that occludes, kinks, or inflames. This hardware limits automated systems and can very quickly lead to hyperglycemia or diabetic ketoacidosis (DKA). It is important for people using AID to recognize signs of infusion set failure – persistent hyperglycemia, boluses that do not bring glucose levels down, ketones, vomiting, etc. Knowing how to treat ketones (via syringe injection of insulin and set change) can prevent a hospital admission or worse.

I love that the diabetes community learns from its members and experiences. Check out our Barbara Davis Center PANTHER (Practical Advanced THERapies for diabetes) website for our team’s latest insights on automated insulin delivery, and tools for people with diabetes, clinicians, and engineers.

Are you considering AID? Feel free to share this article with your healthcare team. For more information about AID systems that are currently available or in the pipeline, click here.

About Laurel

Laurel H. Messer is a nurse scientist and certified diabetes educator at the Barbara Davis Center for Diabetes, University of Colorado School of Medicine, Aurora, CO. She has spent the last 15 years studying how to best utilize new diabetes technologies, and remembers fondly teaching families to wrap up their corded CGM system in a plastic shower bag for bathing. Ok, not that fondly, but look how far we have come! Dr. Messer works with the Barbara Davis Center PANTHER team (Practical Advanced Therapies for diabetes), conducting clinical research trials on promising technologies to make life better for children, adolescents, and adults living with type 1 diabetes. Get in touch at Laurel.Messer@cuanschutz.edu

Source: diabetesdaily.com

Parenting with Diabetes: I Taught My Two-Year-Old Daughter How to Be My Caretaker

This content originally appeared on diaTribe. Republished with permission.

By Cherise Shockley

diaTribe Community Manager, Cherise Shockley, shares the story of her diabetes diagnosis and how that diagnosis affected her family

I was diagnosed with latent autoimmune diabetes in adults (or LADA, a type of diabetes between type 1 and type 2) in July 2004, at the age of 23. I was a newlywed, my husband, Scott, was deployed, and I had just finished five-and-a-half years in the Army Reserve. I was placed on oral medication (glipizide), and I began to manage this form of diabetes with diet and exercise, knowing that someday I would require regular insulin for the rest of my life.

In March of 2005, Scott returned from deployment, and a month later we found out I was expecting our first child. Nine months into my diabetes diagnosis, I was carrying my first child; I was temporarily placed on Regular and NPH insulins, because I had to stop taking my oral diabetes medication during pregnancy. At the time, I did not have a continuous glucose monitor (CGM) – the first version of the Dexcom STS wasn’t invented until March 2006,  as my colleagues at diaTribe wrote about here.

My pregnancy was smooth-sailing aside from my diabetes, which took quite a toll on me, but I knew if I did what I could to manage the condition, my little girl would be okay.

Eight months after I gave birth to my daughter, Niya, we said our good-byes to our families and moved from Kansas City, Missouri, to our new duty station in Southern California.

From the time my daughter was one year old, until she was reached two, I was taking oral medication, and my hypoglycemic episodes were few and far between. When I did experience hypoglycemia, I was either at home or at work, and my husband or my coworkers could help me out.

After my daughter turned two, I noticed that my medication was no longer working. With the help of my nurse practitioner, I tried everything in my power to get oral medication to work for me, but it was time to see an endocrinologist.

A few days after my first visit, I met with a nurse practitioner. He told me, “Your beta cells are still present, but we do not want to burn out what little function you have, so I recommend you start taking insulin.” I paused. Although I knew this day was coming, it was like hearing “you have diabetes” all over again.

When we began talking about pump therapy, I asked for something easy to use, knowing that my two-year-old daughter would be my primary caretaker.  I wanted Niya to be able to help me if she needed to.  With my husband working late hours and traveling, we made a decision to teach my daughter how to manage my diabetes. We taught her how to call 9-1-1, how to treat my lows with apple juice, and eventually, how to shut my pump off. In the back of my mind, I wanted her to know how to manage diabetes just in case she received her own diagnosis later in life.

Parenting

Image source: diaTribe

Many parents of children with diabetes share stories of not being able to sleep because they are worried about waking their child up in the middle of the night to check their blood glucose levels. In my family, my daughter was the person I woke up in the middle of the night when I experienced low blood glucose. Before I had a CGM, Niya was the person helping me check my glucose levels and stuffing glucose tabs or candy into my mouth in the middle of the night when my husband was not home.

From the time she was two, my daughter was my primary or secondary caretaker. Scott retired two years ago, so now Niya only helps me out when it’s just the two of us together. If she hears the alarm from my CGM, she asks if I am okay.

I never asked Niya how she felt about her role in helping me manage diabetes; I was nervous to interview my 13-year-old daughter, but I wanted to know how she felt.

Me: How did it feel growing up with a mother with diabetes?

Niya: I was a normal kid. I can eat what I want. I was able to learn how to manage your diabetes and help you when you needed help. I know how to recognize when you are okay.

Me: How old were you when you realized I had diabetes?

Niya: I was four or five. You asked me to film a diabetes video for you.  The hook in the song, “Who has diabetes? Help us stop diabetes,” made me realize that diabetes was a bigger issue. Diabetes was my normal – but the video helped me see that diabetes was also serious.

Me: Was there ever a situation that scared you?

Niya: We recently went to Disney Springs together during Friends for Life. You went really low, and I was scared that you weren’t going to be okay. I didn’t want anything to happen to you when I was with you; I didn’t want to be responsible. Diabetes is a lot of responsibility for a kid, but in some ways, I’m used to it.

Me: That was a scary moment for me, as well. It was the first time in a long time that I was not able to get my blood glucose levels to go up (with glucose tabs or candy). It was important to me to let you shop with your friend while the team at Disney Springs sat with me.

Niya: Thank you for letting me be a kid and not forcing me to live as if I had diabetes. I love you.

Me: Is there anything you would like to say to other children who have parents with diabetes?

Niya: It is sometimes difficult having a parent with diabetes. I now have two parents with diabetes, since my dad has type 2. I want other kids to know that they can navigate it – they will feel extra pressure that other kids don’t feel, but hang in there. When your mother is as special as mine, it’s worth it; diabetes is a big part of my family.

Source: diabetesdaily.com

Onederland: Poems About a Childhood with Type 1 Diabetes

This content originally appeared on diaTribe. Republished with permission.

By Eliza Skoler and Kelly Close

Jamie Kurtzig, a high school student living with type 1 diabetes, just published a book of 100 poems that she has written over the last ten years

Onederland: My Childhood with Type 1 Diabetes is a book of 100 poems recently published by a 15-year-old diabetes advocate, Jamie Kurtzig. The book takes readers through Jamie’s childhood, touching on themes of growing up, navigating challenges, and finding hope. We attended the book launch yesterday and were so impressed by Jamie’s discussions about diabetes. We asked her if she could give one piece of advice to families that reflected the sentiments of her own family, and she answered eloquently with a single word “Hope.” She continued, “Never lose hope.”

Jamie was diagnosed with type 1 diabetes when she was one year old and has been writing poems since the age of five. Her book is now available from Book PassageBarnes & Noble, and Amazon. We sat down with Jamie to learn about her poems and her vision for this book.

Jamie: I’ve always liked writing poetry; I wrote my first poem when I was five, and it’s actually included in the book. Writing poetry helps me express myself and make sense of things and think about things, so it’s been a really fun process. I’m excited that Onederland is now published.

What did you learn about yourself during this process?

Jamie: Diabetes has really influenced who I am, and it has also given me a passion for finding a cure, something I want to do for the rest of my life. I realized this while writing my book.

What do you most want people to know about Onederland?

BookJamie: All of the proceeds are going to diabetes non-profits – including The diaTribe Foundation – to help find a cure, one of my main goals. I would love to experience just one day where I do not need to check my finger or bolus for a meal or have glucose tabs for low blood sugar. I’m so lucky to live in the Bay Area and have access to tools to help me manage diabetes; we need to find a cure not only for people like me, but for people everywhere.

How did you go from the poems you’ve written over the last ten years to this incredible, finished book?

Jamie: I had these poems but didn’t know what to do to get them on paper, so I talked with Book Passage, an awesome local bookstore. They introduced me to great mentors, who helped me create a story arc — my story — so that the book evolves along with my life. I start with an intro of me (“Where I’m From”), and then move into some of the challenges in my life and how I’m dealing with them and working with them, and then into more hope. I also wanted to include an index so people could see how old I was when I wrote each poem.

What was the hardest part of publishing a book?

Jamie: Getting all the details right! I had to order three proofs before I caught all the mistakes.

Who are your favorite poets?

Jamie: Mary Oliver – I have a giant quote of hers on my wall. And also Emily Dickinson.

How did your family respond to your choice to publish a book of poetry?

Jamie: My mom has been so supportive of me. In everything I do she always supports me and helps me get things done – which is awesome because sometimes it’s hard for me to get from ideas into… a book!

We asked Sara Kurtzig, Jamie’s mom, to tell us a bit more.

How do you feel about Jamie’s book of poems?

Sara: So, so proud. She’s so graceful to me, and I so appreciate her way and her spirit, and I think it comes through in her book. I had never read her book until she asked me to read her proof. I read the whole thing on the airplane and I was in tears. She had to do a lot of work to make this happen. She had to figure it out. She picked the paper, she picked the font, she picked the title. It’s a lot of thinking. I feel that she did not cut corners and took the time to do all of it. And I am so proud. She did this all in her own way. And she is donating every penny to various diabetes non-profits. We can get a lot of places with that power.

Find Onederland: My Childhood with Type 1 Diabetes at Book PassageBarnes & Noble, and Amazon.

Jamie was a Junior Summer Associate in 2019, working with college students and recent college grads at The diaTribe Foundation and Close Concerns. She is also now a writer for diaTribe – read about her experience with Loop and her advocacy work at the 2019 JDRF Children’s Congress.

Source: diabetesdaily.com

Benefits of Time in Range: New Study Shows Cost Savings

This content originally appeared on diaTribe. Republished with permission.

By Eliza Skoler and Albert Cai

A new paper suggests that as people with diabetes increase their time in range, healthcare costs decrease

IQVIA, a healthcare consulting firm, published a 22-page paper describing the limitations of A1C and the potential financial benefits of improving time in range, the time a person spends with blood glucose levels between 70-180 mg/dl. The paper was sponsored by Lilly Diabetes.

The paper predicts that if the average time in range for people with diabetes in the US increases to 70% or 80%, healthcare costs will be reduced. The savings could be up to $9.7 billion for the US healthcare system over ten years if the average time in range for people with diabetes is increased to 80%.

The graphic below shows how much money is saved over ten years just by reducing hypoglycemic (low blood sugar) events in people with type 1 diabetes. Other costs saving would likely come from a reduction in diabetes-related complications. Studies (Diabetes Care 2019, Diabetes Care 2018) have suggested that greater time in range is associated with a lower risk of health complications.

Stat

Image source: diaTribe

Unsurprisingly, the biggest reductions in healthcare costs were seen in people with high baseline A1C. While a 5% increase in time in range for a person with an A1C under 7% would save only $20 over ten years, the same 5% increase in time in range for a person with an A1C over 8% would lead to $1,470 in savings over ten years – mostly due to a greater reduction in the risk of diabetes-related complications. This means that to get the greatest health and cost benefits, it is essential to bring time in range practices to people who are most struggling to manage their blood glucose.

To calculate the effects of improving time in range, the study assumed an average time in range for people in the US of 58% (type 1 and type 2 diabetes). This 58% came from a 2019 review of four major CGM studies. However, these four studies were done at top diabetes centers and the participants had relatively low A1Cs (~7.5%). Additionally, the majority of people with type 1 diabetes and almost everyone with type 2 diabetes still don’t have access to CGMs. In other words, the actual population average is likely much lower than 58% time in range and the $9.7 billion calculated in cost savings would actually be much higher if the population’s time in range reached 80%.

IQVIA provides several reasons why CGM should be used to support blood glucose management in people with diabetes:

  • A person with diabetes can understand how variables like food, exercise, and sleep habits affect blood glucose and can use that information to improve decisions and outcomes.
  • Healthcare professionals can provide more individualized care to support people with diabetes.
  • The healthcare system will save money on diabetes care.

The illustration below outlines how CGM can be used to monitor blood glucose and guide shared decision making for a healthcare professional (HCP) and person with diabetes (PwD).

Stat

Image source: diaTribe

The last eight pages of the paper discuss how time in range can become more commonly used, asking policymakers, healthcare professionals, and people with diabetes to drive the time in range movement forward. IQVIA’s ideas include:

  • promoting CGM to help people measure and understand time in range;
  • educating healthcare professionals and people with diabetes about the health benefits of time in range; and,
  • tackling affordability and access issues to make sure all people with diabetes (or even prediabetes) can use CGM.

This paper not only emphasizes the importance of time in range for well-being but also highlights time in range as a public policy matter. While there is clearly much work to be done, this study is an important step in underscoring the need to bring CGM and time in range to more people.

Source: diabetesdaily.com

Banned from Policing Due to Diabetes

Meet Craig Roth. He’s a fit, formidable man. By day, he helps to keep people safe from violence, crime, and illegal activities that often plague city streets. By night, he’s an active, well-respected, and engaged citizen. He loves his community, and they, him. He’s also been living with type 1 diabetes (T1D) since 1999.

This is Craig’s story, and it’s sadly not that unique. People with diabetes are often told that they can do anything, and having the grit and fortitude that we do, we believe them. We run track, we excel in school, we apply to colleges, we have first kisses, we make varsity, we travel abroad, we run marathons–we do a lot. But there’s still a lot that we can’t do, some barriers that we haven’t been able to crush. For Craig, becoming a Nassau County Police Officer was one of those barriers.

People with diabetes can be police officers. It varies by state, but minimum qualifications typically include being at least 21 years of age with United States citizenship and state residency (of where you’re applying), possessing a high school diploma or GED and a valid driver’s license, and demonstrating strong moral character. For people with diabetes, a medical doctor must also approve of the applicant prior to attending the police academy. The process is grueling, and the checklist is long:

  1. Meet the aforementioned minimum qualifications for prospective officers
  2. Complete an online application and self-assessment
  3. Take a written and video test and submit a background history packet
  4. Complete language skills and written suitability tests
  5. Pass the polygraph examination
  6. Attend an interview with a psychologist for psychological screening
  7. Pass the physical agility test
  8. Pass the background investigation
  9. Attend at least one formal interview with representatives from the police department
  10. Pass the background investigation
  11. Complete fingerprinting, a drug screen, and a medical exam
  12. Complete a second psychological exam
  13. Attend police academy training
  14. Complete field training as a probationary officer
  15. Begin working as a police officer

Craig Roth excelled at every step of the way, except the county medical exam.

After applying through the Nassau County Civil Service Commission (who’s in charge of hiring police in that municipality) in January 2015,  he was told that his application was on hold and that he needed to supply additional information regarding his type 1 diabetes, and also to undergo a cardiovascular stress test. This wasn’t all that abnormal, and he willingly complied.

By all accounts, Mr. Roth is healthy and fit. He wears an insulin pump, and maintains his HbA1c below 8%. He likes to run and stay active. But he, and other people with diabetes, are held to a higher standard when it comes to their health. The world expects excellence, perfection. A misstep, a low blood sugar, a seemingly innocuous pump failure, and we’re judged harshly.

In April 2015, his application was denied by the civil service commission. The reason given was, “endocrine condition which precludes ability to fulfill the physical requirements of a police officer,” according to official documentation. He appealed and submitted documentation from his endocrinologist proving that he was fit to serve. Due to his appeal, he was then referred to a county doctor, hired by the commission, for an additional health screening.

Despite having well-controlled glucose levels, normal heart rate, blood pressure, lung capacity, eyesight, hearing, mental agility, weight, and all normal blood draws, when Mr. Roth had his medical exam, the county doctor assigned to his case became concerned that “extreme physical exertion” required of police officers would cause “glycemic instability” in the patient, according to his deposition. In layman’s terms: exercise causes low blood sugars. The doctor was also concerned that the job could damage his insulin pump. He wasn’t “fit” for the job. Roth was ultimately rejected from the position.

We trust doctors. They save lives every day. But the problem here is that Craig Roth was 23 at the time of his medical examination, and had been living with diabetes for over 16 years at this point. Additionally, he had also previously been both a Long Beach Police Officer, a New York City Police Officer, and a security detail with the Nassau Community College, and never had any issues on the job. His endocrinologist gave him the green light to be a police officer. He was young, motivated, and in the prime of his life. He just wanted the opportunity to do what he loved.

Despite all of that, Mr. Roth was denied employment by Nassau County Civil Service.

Craig Roth

Photo credit: Craig Roth

In chatting with him for this story, Mr. Roth has said that he’s met many other women and men who have been denied the opportunity to become police officers simply due to their diabetes diagnosis. Dr. Marlaine Tapply, a doctor who works frequently with the civil service commission, found that Roth was only ever the third person with type 1 diabetes to apply as a police officer with the Nassau County Police Department. All three applicants were rejected.

Dr. Tapply said in her deposition that Roth was denied a job because of, “how brittle and fragile his diabetes was.”

These county doctors people are referred to oftentimes don’t know the patients, their histories, or their stories. They don’t specialize in diabetes (usually, they’re family doctors or internists). They’re often times unfamiliar with the nuances of type 1 diabetes. They simply see them for a 15-minute exam and make a determination that changes the course of their lives. Despite having adequately controlled HbA1c levels, and no complications, doctors can sometimes let their fear of the unknown and common stigmas around diabetes dominate their decisions to approve medical examinations for police officers, intelligence officers, the military, Peace Corps volunteers, pilots, and other professions that people with diabetes can have trouble accessing.

Wanting his story to prevent future issues for other people with diabetes, Mr. Roth says, “With additional light, I hope that people can understand that discrimination is alive and well against diabetics – however people turn a blind eye and choose not to care.”

In filing a lawsuit against Nassau County, Mr. Roth unfortunately lost. Nassau County offered a small cash settlement, albeit requiring he never be employed by the civil service commission in the future. He did not accept the terms. Appealing to the United States Supreme Court, they have decided not to hear the case.

This seems to only have fueled his passion, “I want people to know how the current system stands. Fighting this as a T1D is an uphill and costly battle, and needs to change.”

Mr. Roth has since found employment with another police precinct and hopes his story helps to spread awareness of the struggles people with diabetes face when seeking employment, even in 2020.

In Mr. Roth’s case, many turned a blind eye, and few were willing to help him seek the justice he so desperately deserves. Issues like these can arise when there are no standard hiring procedures around people living with a chronic disease, and determinations are made on a case-by-case basis, or “feeling.”

According to court documents, hiring officials homed in on five 911 calls made by the Roth family due to episodes of hypoglycemia, that Craig experienced while sleeping, over 3 years ago (at the time of his employment application). Only one resulted in Roth needing transport to a medical facility. At the time, Craig was not on a Continuous Glucose Monitor (CGM). He is now.

Little did his family know that those calls would change the course of their son’s future.

These are people’s real stories, and they need to be told. Our voices need to be amplified. We need to spread awareness of what’s going on, even in 2020, so that we’re finally listened to.

We thank Craig Roth for sharing his story and hope that someday he can find justice and peace.

If you feel that you have been discriminated against in the workplace, you can file a complaint with the U.S. Equal Employment Opportunity Commission.

You can file an Americans with Disabilities Act complaint alleging disability discrimination with the U.S. Department of Justice.

Have you ever been barred from a job because of your diabetes? Share this story and comment below!

Source: diabetesdaily.com

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