One Year into DIY Looping

One year ago, I built a DIY hybrid-looping insulin pump, using my Dexcom G6 and Omnipod. For those who aren’t in the know, DIY “looping” is basically “hacking” your insulin pump with a single-board computer, such a Raspberry Pi or Riley Link, to make it communicate with an existing continuous glucose monitor (CGM) to make basal adjustments accordingly.

It’s important to note that this is NOT FDA approved, but the #WeAreNotWaiting community has been sharing information on how to build your own DIY looping insulin pump for years now, and I took the plunge in 2019.

In July I celebrated one full year on my looping system, and wanted to share my thoughts on 365 days of looping.

I Still Have Diabetes

I remember when I first set up my Riley Link and switched on “auto-mode.” I had this magical vision of never counting carbohydrates again, limitless runs without lows, and forgetting what the thirst of a high blood sugar felt like. Then I realized, just as quickly, that I still have diabetes.

Even though my Dexcom continuous glucose monitor (CGM) readings now communicate with my insulin pump and make basal adjustments accordingly, the “hybrid” part means that it doesn’t anticipate, nor account for, any carbohydrates eaten. I also need to tell my pump when I’m about to exercise, and for how long. Since the insulin pump does not operate on artificial intelligence (AI), it cannot anticipate what I’ll do next.

So yes, I still have lows on runs and I still have highs when I eat something that isn’t appropriately accounted for. I still have to count carbohydrates and no, I haven’t forgotten what the Death Valley-like thirst of a 350 mg/dL feels like, although it happens less frequently.

My HbA1c Isn’t That Much Lower

I have always been maniacal about tight diabetes control. My A1cs have hovered in the low 6s for the last 10 or so years. With Loop, I immediately thought that my control would be *perfect* and I would ride out the 4s and 5s into an eternal sunset. NOPE. My latest A1c was 5.9%, which I am rightly ecstatic about, but it’s less than 1% point lower than I was on MDI and a CGM.

The key difference is that my time in range has increased from around 30% to 75%, and the number of lows that I experience has gone down from around 3 per day to 3 per week. It’s easy to have a low HbA1c when you have highs and lots of lows to average it out- it’s much harder (and healthier!) to have a lower HbA1c with few lows. And plus, I just feel healthier. And that has made all the difference.

Dexcom graph by Christine Fallabel

It’s a Mental Vacation

Being a human pancreas 24/7/365 is not easy (why didn’t anyone tell us this at diagnosis?!). In addition to running a household and having a full-time job (and texting everyone back, and maintaining some semblance of a fitness routine, and trying to eat something green at every meal), being an organ all of the time is hard work.

More than anything, a year into looping has given me the mental break I didn’t know I needed. Sure, I still have to count carbohydrates, adjust for exercise, and dose for meals, but hours can go by where I don’t think about diabetes at all, and that never used to happen. My mental distress has gone way down, and I don’t experience diabetes burnout at nearly the frequency I used to. This also helps maintain my motivation to continue to take care of myself and my diabetes.

Dosing Is More Discreet

As I make my way through my 30s, this is less of an issue (if you have a problem with me dosing in public, the problem is you, not my diabetes), but looping has definitely made checking my blood sugar (read: checking my phone) and dosing (also read: checking my phone) way more discreet in public than manually testing my blood sugar and dosing used to be. It’s also more hygienic (I change my insulin pump with plenty of alcohol swabs every 3 days from the comfort of my home), and more convenient. This is perfect when I’m out at a crowded concert, or squeezed into a small table at a restaurant.

It can also cause issues. For instance, if I’m in a public place where cell phones aren’t allowed, sometimes it’s difficult to explain that my iPhone is actually durable medical equipment (DME) that I need to survive. Let’s just say there have been some teachable moments.

Loop app screenshot by Christine Fallabel

I Am Happier

When I was diagnosed with type 1 diabetes in June of 2000, my doctor told me that the cure was just 5 years away. I thought the cure was just around the corner, we all did. And learning that the “cure” is still out of sight, 15 years hence, has been a hard pill to swallow.

I’ve dealt with anxiety and the impending depression of only someone who has a chronic disease with no cause and no cure can experience, but having something like Loop feels like someone is finally on my side, looking out for me, and making things just a little bit easier when the load becomes too heavy of a burden to carry. I can go to sleep and know that my basal will immediately shut off if I start to go low overnight. I can relax if I’m digging into dinner at a friend’s house and I don’t know the exact carb count for a meal, knowing my basal will tick up to cover the difference.

Having a Loop feels a little bit like you have a certified diabetes educator (CDE) and best friend just sitting on your shoulder, making constant adjustments, never judging, and ensuring that you have a better go of it, a little bit of help when you need it. And that help has been life-changing. The cure may never have been 5 years out, but with Loop, I finally feel okay waiting just a little bit longer.

Do you DIY Loop? How has your experience been? Share this post and comment below; we would love to hear from you. Follow the #WeAreNotWaiting hashtag on Twitter to learn more about the DIY movement.

Source: diabetesdaily.com

Teenage Boy Receives Novel Stem Cell Therapy

Editor’s note: This article was updated on 7/31/2020 for accuracy regarding the specific stem cell treatment used. 

A lot of research is ongoing to develop novel therapies for type 1 diabetes. Many investigators are now focusing on the potential of various stem cells therapies. One approach involves using mesenchymal stromal cells (MSCs) (which can be obtained from the umbilical cord) and directly injecting them into the pancreas in an effort to induce insulin production. These kinds of treatments are still in the early experimental stages, with some clinical trials ongoing.

Seeking an Experimental Treatment Abroad

Just last week, Vera and her son Aaron set out to have the procedure done at Cryovida in Mexico. After having a difficult time managing his diabetes, Vera vowed to do whatever it took to lessen the burden for both her son and herself. Since Vera first posted about their upcoming journey, the diabetes online community became intrigued. Vera even started a Facebook page where people could learn and ask their questions. I thought it would be good to hear from Vera about the whole experience and how Aaron is doing now.

At what age was Aaron diagnosed with type 1 diabetes?

He [had] just turned 15.

How have Aaron and your family been managing with his diabetes leading up to this life-changing procedure?

Probably the hardest time in our lives. In the honeymoon stage, my son’s attitude was almost impossible to deal with. As he got used to monitoring and stabilizing, he improved. My son is on the spectrum, so he was always difficult. He would forget to take his long-lasting insulin, not cover for the junk he would eat, and his sugars were almost always over 500. It was living in hell. Six months ago, my son came to live with me in Mexico (he was living with my mom in NJ, because he wanted to finish school, and we moved to Mazatlan, Mexico 3 years ago). When he came his blood work was so bad that the doctor didn’t know how he was walking. His A1C was over 20, his triglycerides were over 700! The doctor immediately changed his insulin. He said they had him on such a low dose, no wonder we could never control it, and put him on cholesterol meds, which my son never took. Just two months later my son’s triglycerides went down to normal (and he never took a single med for it; It is just the fresh food here), and his A1C was down to 18. By the time we went for the procedure, his A1C was down to 15.9. My son still doesn’t listen, and eats tons of junk, does not cover for it. I have to be on top of him 24/7 to check his blood and take his insulin. So, if this works I may retire from my position of a drill sergeant.

What prompted you to start looking for possible cures or treatments? How did you hear about Stem Cell Educator Therapy?

My son [was] almost dying, and his dream to go into the military was taken away from him. My husband is a retired Vet, his father is a retired Vet, my grandfather was a retired Vet. We are a military family. This may give him the opportunity to serve, which is all he wants. I heard about it from research. I started googling diabetes cures and ran across different articles for stem cells. I always read everything, I rarely follow what is being pushed by news or politicians. I sit and read.

What are the benefits of this procedure for a patient living with type 1 diabetes? And what are the risks involved?

Well, ultimately a full cure, but for those that do not get cured, it lowers their need for insulin substantially. Risks… honestly not much [from] the procedure itself, but the normal risk, possible bleeding, pain in the area. Long term, diabetes can come back. Scientists still have not figured out how to protect the new beta cells from being attacked again by your immune system. For me, that is a risk I can live with. Even if he gets a year diabetes-free, I would pay and do the procedure again. The longest known case has been diabetes-free for 3 years now.  I am hoping [the]  next huge development will be scientists figuring out how to protect the new beta cells.

How did Aaron feel about it? Was he nervous? Excited? Or a little bit of both?

OMG, he was a mess. At first, he was stoked about it. He couldn’t wait. Then came time for the procedure, and he was like, “nope”. He was sitting in the huge cat scan room where they were doing the procedure saying “no, I don’t want it”. I had to tell the anesthesiologist to get him sedated ASAP, or my son was about to run out of the hospital in the gown down the street!

How was it dealing with Renu and Cryovida? How were the doctors? Were they able to speak English so they could communicate with Aaron?

First, I am lucky enough to live in Mexico, but I speak horribly. We were able to set up the full thing in one week. The reps did everything. They spoke perfect English. Once at the hospital, the doctors spoke English, Went through every piece of paper I signed, explained everything to me and my son. Let my husband and I be in the room until the procedure started (even though the hospital had a rule; one person per family due to COVID). After the procedure, all the doctors came in, explained everything. Gave me all the paperwork. The reps from Renu came with us from Mazatlan to Guadalajara, a six-hour drive, and stayed the whole full three days with us to make sure everything was okay. It was an overall great experience.

Image credit: Vera Mazatlan

How long did the procedure take and generally speaking, how is it done?

They were done in an hour, but most of the time was prep. The actual procedure takes 10 minutes. They make a hole in the femoral artery and lead a scope into the pancreas, where they then inject the cells.

How does Aaron feel now after the procedure? Did he have a lot of pain right after?

He feels amazing. The first thing he noticed is that his eyesight was no longer blurry. He was only in pain on the first day. Now he is back to his crazy self. He also has tons of energy. He was so sluggish before. That is the biggest change.

Have you noticed any changes to his blood sugars yet? Do you notice any fewer peaks and valleys? Has he tried experimenting with new foods or is this too soon?

When can he expect to see some results? I have noticed his blood sugar is lower, even after he eats junks. He is 17, controlling him to eat right is IMPOSSIBLE! They said I should start seeing a real difference in about 45 days to 6 months. Depends on each person.

Now that is it over and behind Aaron, how is his perspective looking forward to living with this disease? Is he glad he did it? I bet he can’t wait to see the results!

He is beyond grateful to possibly be given a chance to be diabetes-free. He still wants to go into the military. To him, this is a gift he would never get. I made him a promise [that]  if there was a way to cure him, I would pay any amount of money, and go anywhere to do it. I have fulfilled my promise.

What would you share with our community who has been so intrigued by your story, any advice you could share having gone through this with your own child?

Never give up hope, and never take no for an answer. If the doctor is not giving you the answer you want, get a second, third, fourth, doesn’t matter how many opinions. There is always hope and new science out there. Yes, it can be expensive, but ask yourself, what is your child’s health worth to you? Also, READ EVERYTHING. Science changes monthly. Keep reading, keep joining groups, keep reaching out. Forget what you hear on the news and from politicians, you are the advocate for your child. Go against the grain, and be a trendsetter. Those are the people that make a difference.

Vera, thank you so much for sharing both you and your son’s experience. We wish Aaron nothing but health and happiness and we will continue to follow his journey!

What are your thoughts on this kind of experimental treatment? Is this something you would consider? Share and comment below!

Source: diabetesdaily.com

Would You Restrict Carbs to Ease Diabetes Management? (ADA 2020)

Children and adolescents with type 1 diabetes are currently living at a time of a big diabetes technology boom. Continuous glucose monitors (CGMs) and insulin pumps are becoming more popular and offer the promise of better glycemic management and more freedom and peace of mind. As research and clinical trials on automated insulin delivery systems are in full-swing, clinicians from The Joslin Diabetes Center, Yale University, and Harvard University were interested in understanding various patient preferences. In one study, they posed the following question:

Would young people with type 1 diabetes be willing to limit their carbohydrate intake to a maximum of 50 g per meal if this meant they wouldn’t have to administer a manual bolus using an artificial pancreas (AP) system? 

The outcomes of this research were recently presented at the American Diabetes Association (ADA) 80th Scientific Sessions.

To help understand patient perspectives and preferences on this subject,  39 participants (average age 17 +/- 4.7 years) were recruited at two study centers. These patients had an average diabetes duration of 9.4 +/- 4.9 years and an average HbA1c of 8.4 +/- 1.1 %. Interviews were conducted with each participant and parents to gauge their views on the willingness to “limit carb intake to 50 g per meal/snack if this would eliminate the need to manually bolus for food when using the AP system.”

Based on their analysis, the study authors derived the following major insights:

  1. The majority of participants (and their parents) would prefer to have the option of eating more than 50 g per meal/snack and were willing to manually bolus for the excess carbs.
  2. Most believed that 50 g per meal or snack was too restrictive.
  3. Young people generally agreed that automation would “reduce self-care burden.”

The researchers concluded,

“An aversion to food restrictions overpowers the desire for an AP system that can independently manage glucose levels though limited carbohydrate intake. Carbohydrate limitations appear to increase self-care burden more than the time and effort expended on carb counting and bolusing. Future AP systems should consider options that enable users to choose to bolus manually for large meals and to forego bolusing for smaller ones.”

Here are a few notable quotes from the participants, which were highlighted in the poster presentation:

“I think that, if I had to choose between bolusing or limiting my carb intake, I think I would rather bolus, just because nobody really wants to be told what to do.” (25-year-old female)

“Every once in a while she wants to have an ice cream. You know, I think she should be allowed to have these things sometimes when she wants them. I don’t want her to be too restricted.” (Mother of a 16-year-old.)

Sadly, despite continuing advances in technology, the glycemic management for youth with type 1 diabetes has been stagnant or worsening, depending on the age group, for decades. As per the most recent available data, the average HbA1c for young people with type 1 is about 8.7%, similar to what was observed in this cohort. Automated insulin delivery could offer an important solution to so many young people who do not meet the ADA-set glycemic targets (currently, the organization recommends individualizing the A1c goals, from as low as <6.5% all the way up to <8% for some patients).

This study provides an interesting snapshot into what many young people with type 1 diabetes appear to consider very important — the freedom to eat whatever they want and bolus for it. 

There has been a long-standing debate, often in the diabetes online community, and sometimes among healthcare providers, about a low-carbohydrate approach for young people. Many have highlighted the benefits, and exceptional success stories. They are not just anecdotes, either. At least one study has demonstrated exceptional outcomes of carbohydrate lowering for youth with type 1 diabetes, with excellent adherence and reported quality of life, a normal average A1c of ~5.7%, and a very low rate of adverse events.

Nevertheless, some question difficulty of maintaining a lower-carbohydrate diet, and concerns have been cited over the potential for the development of eating disorders as a result of “restricted eating”.

When it comes to developing AP systems, this study suggests that many young patients would prefer more flexibility in the upper threshold of their carbohydrate intake and are willing to put in the work to manually bolus for and accept the outcomes, whatever they may be, of higher carbohydrate eating patterns, in lieu of sticking to a recommended carb limit and not having to manually deliver their insulin dose. Of  course, this is just a small study, and the results may be skewed towards this perspective due to the predominance of teenagers in this cohort. Also, it may be interesting to evaluate a shift in this perspective, if any, following a formal diabetes education program to explain to patients and parents, in detail, the benefits of lowering carbohydrate intake for diabetes management in general, and in the context of AP technology.

What are your thoughts on the subject? We love hearing from our readers.

Source: diabetesdaily.com

Insulin Pump Therapy for Those Living with Type 2 Diabetes: Doris’s Story



LEARN MORE ABOUT THE MINIMED™ 630G SYSTEM

My name is Doris, and I am a wife, small business owner, volunteer and an Assistant Director at a non-profit agency. I’m always busy, which is why some are surprised that I also live with type 2 diabetes. Managing my diabetes hasn’t always been easy. In reading my story, I hope you can take away some of the lessons that it took me years to learn.

20 years ago, I noticed that I was feeling sick each morning and it was a struggle to get myself together. One morning, I arrived at work and was extremely tired and nauseous. A co-worker took me to the emergency room where I was diagnosed with type 2 diabetes. I was in my thirties then. At the time, I was dealing with other health challenges as well. Adding this serious disease to an already full plate was overwhelming to say the least. I knew very little about type 2 diabetes. I thought that diabetes was common and I could handle it, so I wasn’t really too worried. In my naivety, I thought if I just took the medication prescribed for me and avoided sugar, I would be just fine. Boy was I wrong! I learned very quickly that I needed to educate myself about the disease, causes, symptoms, treatments, and find a specialist.

I have been living with type 2 diabetes for over twenty years now. I have had so many changes in my drug therapy regimen, I can’t count. No matter what combination of medications and insulin I took, or changes I made to my diet or exercise, my A1C levels would not stay consistently at or below 7. I have been hospitalized twice due to elevated blood sugar levels. I even sought help from diabetes specialists, but I still wasn’t able to get control of my blood sugar the way I wanted. Throughout the years, I really struggled with always being tired and listless. Some days I couldn’t even make it out of bed. It was a struggle being able to do activities. My family and friends thought I was being lazy or anti-social because I would pass on so many events. They did not understand how I was being affected.

About 4 years ago, I had to change my primary doctor because of insurance coverage. The process of having to find a new doctor was always exasperating to me because I wanted to find someone that was truly solutions-based and took time with their patients. I ended up finding a family practice doctor near my home. I liked the fact that she was always very candid with me about my out of control blood sugar levels, high A1C, and the other medical complications I was dealing with due to type 2 diabetes. She was increasingly concerned as the test results showed that I was heading toward serious complications with my kidneys. One day, I visited her office to review my test results, and we had a serious discussion on what my prognosis looked like. She felt it was important to discuss my options. I began crying because I felt so defeated and helpless. She spoke to me about insulin pump therapy. I knew very little about it. I thought it was only offered to patients that have type 1 diabetes. She gave me some literature and told me to think about it and let her know if I wanted to pursue it further. I went home and discussed it with my husband and other family members. I was depressed about the situation because the quality of my life looked bleak. I did some research on insulin pump therapy but couldn’t find much information about it or how it was used with type 2 diabetes patients.  I called my doctor and asked her to give me some more details of what the therapy consisted of. My level of apprehension was pretty high at this point, so she scheduled some time for me to meet with a nurse who specialized in insulin pump therapy.

I spoke to Shelly, a nurse from Medtronic, who was able to give me better insight into what the therapy would involve and how I could benefit from it. Her knowledge about the therapy, the disease, and her willingness to answer what felt like a million of my questions gave me some hope. After that conversation and further research, I knew that I had to try insulin pump therapy. I put my initial skepticism away and without further hesitation, I told my doctor to sign me up.

When my MiniMedTM 630G pump arrived, I met with Shelly for my product training. I initially thought it was complicated. There were too many parts and too many steps for me to get this right! I became nervous, but I knew how important it was for me. I took a deep breath, concentrated, and with Shelly’s guidance, was able to successfully start insulin pump therapy. I still had a lot of questions concerning the pump. Shelly’s number was on speed dial for a while. The more I used the pump, the more my confidence with handling the pump grew. I was so amazed at this technology and how the device could adapt to my changing needs.

After a month of using the pump, my blood tests results came back and I was ecstatic. My A1C level had dropped and I was seeing much better blood sugar levels. I do the happy dance every time I get a blood sugar level under 100.

I have been using the pump for over 3 years, and have had such a positive experience using the pump. I can’t believe the difference it has made in my live. Most notable to me is more energy— I don’t feel tired and sluggish anymore. I’m able to be more active and participate more in daily activities. When it comes to my blood sugar levels, they are more stable now and my A1C level is at 7.1! I could have never imagined that happening before.

I am no longer a home body either. I am always busy, on the go, and wanting to do more. I look at my life 3 years ago and I was facing a totally different scenario. Things that I had put on hold, I am now pursuing. Using the pump has changed my life drastically. I no longer see just dark days ahead of me— I see the chance to live my best life. I get so emotional when I speak about my experience with the pump. It’s motivated me to figure out what I could be doing to help others. I believe in the product so much that I signed up to be an Ambassador for Medtronic, so I can share my journey with others.

As I reflect on my experiences researching and ultimately using the pump, one of my major takeaways is that you must be committed and dedicated to the process. Although I have certainly grown accustomed to using the pump, it was a bit of a struggle for the first few months. Even now, I have to always remember small things like having additional batteries and pump supplies on hand. In addition, I plan my schedule to ensure that I can continuously use the therapy, even when I travel.

Another takeaway is that it’s important to talk with someone that’s living with type 2 diabetes and using insulin pump therapy. Although I received excellent information form the nurse, nothing beats speaking to someone who has firsthand knowledge.

Finally, be proactive and learn about the coverage that your medical insurance provides when it comes to the cost of the pump and the supplies.

Overall, my experience using insulin pump therapy as a diabetes management tool has definitely benefitted me and what I do in my life. Things don’t always happen the way you plan them, but when you have the right information and know where to go to find answers, your possibilities keep growing and for that I am thankful!

LEARN MORE ABOUT THE MINIMED™ 630G SYSTEM

The testimonial above relates an account of an individual’s experience with a Medtronic device. The account is genuine, typical and documented. However, this individual’s experience does not provide any indication, guide, warranty or guarantee as to the response or experience other people may have using the device. The experience other individuals have with the device could be different. Experiences can and do vary. Please talk to your doctor about your condition and the risks and benefits of Medtronic devices.

Important Safety Information: MiniMed 630G System with SmartGuard Technology

Indicated for the continuous delivery of insulin, at set and variable rates, for the management of diabetes mellitus. MiniMed™ 630G system is approved for ages 14 years or older with Guardian™ Sensor 3 and MiniMed™ 630G system is approved for ages 16 years or older with Enlite™ sensor. Both systems require a prescription. Insulin infusion pumps and associated components of insulin infusion systems are limited to sale by or on the order of a physician and should only be used under the direction of a healthcare professional familiar with the risks of insulin pump therapy. Pump therapy is not recommended for people who are unwilling or unable to perform a minimum of four blood glucose tests per day. Pump therapy is not recommended for people who are unwilling or unable to maintain contact with their healthcare professional. Pump therapy is not recommended for people whose vision or hearing does not allow recognition of pump signals and alarms. Insulin pumps use rapid-acting insulin. If your insulin delivery is interrupted for any reason, you must be prepared to replace the missed insulin immediately. Replace the infusion set every 48–72 hours, or more frequently per your healthcare professional’s instructions. Insertion of a glucose sensor may cause bleeding or irritation at the insertion site. Consult a physician immediately if you experience significant pain or if you suspect that the site is infected. The information provided by CGM systems is intended to supplement, not replace, blood glucose information obtained using a blood glucose meter. A confirmatory fingerstick using a CONTOUR®NEXT LINK 2.4 meter is required prior to making adjustments to diabetes therapy. Always check the pump display when using a CONTOUR®NEXT LINK 2.4 meter, to ensure the glucose result shown agrees with the glucose results shown on the meter. Do not calibrate your CGM device or calculate a bolus using a result taken from an Alternative Site (palm) or a result from a control solution test. If a control solution test is out of range, please note that the result may be transmitted to your pump when in the “Always” send mode. It is not recommended to calibrate your CGM device when sensor or blood glucose values are changing rapidly, e.g., following a meal or physical exercise. The MiniMed™ 630G system is not intended to be used directly for preventing or treating hypoglycemia but to suspend insulin delivery when the user is unable to respond to the Suspend on low alarm and take measures to prevent or treat hypoglycemia themselves. Therapy to prevent or treat hypoglycemia should be administered according to the recommendations of the user’s healthcare provider.

WARNING: The SmartGuard™ Suspend on low feature will cause the pump to temporarily suspend insulin delivery for two hours when the sensor glucose reaches a set threshold. Under some conditions of use the pump can suspend again, resulting in very limited insulin delivery. Prolonged suspension can increase the risk of serious hyperglycemia, ketosis, and ketoacidosis. Before using the SmartGuard™ feature, it is important to read the SmartGuard™ feature information in the User Guide and discuss proper use of the feature with your healthcare provider.

See www.medtronicdiabetes.com/importantsafetyinformation and the appropriate user guides for additional important details.

Source: diabetesdaily.com

Is Healthcare Provider Knowledge of Diabetes Lacking?

People’s experiences with healthcare providers can vary widely. When it comes to living with diabetes, many people expect that their healthcare providers, even if they’re not specialists, will be at least somewhat knowledgeable about their health condition. Many have found however, that while endocrinologists and diabetes education specialists tend to be more attuned to the ins and outs of diabetes management, even their knowledge can be outdated, while the knowledge of other providers, is sometimes starkly lacking.

Meanwhile, two informal polls in two separate diabetes social media groups, highlighted that over 85% of people with diabetes expect any healthcare provider (even if not a diabetes specialist) to have a basic working understanding of diabetes, at the very least the two major types and general treatment options.

Nevertheless, when the asked to share their own experiences, many reported a lot of confusion and uneducated statements about diabetes from various healthcare providers. The consensus during the crowdsourcing research tended to be “while we expect it, we do not routinely see it.”

We asked people to share some of the comments that they received about diabetes from healthcare providers. Here are some surprising responses and stories to ponder:

“When did you have your insulin pump surgery?”

“Type 1 diabetes develops over 2-3 days, not months.”

“He was a big baby so clearly he’s was a diabetic when he came out.”

“You will kill your child with this low carb nonsense… I will not stand by and watch you do that… I’m sure one of the other doctors will call CPS with this.”

“Diabetics like you are only allowed 4 eggs a week. Period.”

“You should eat more carbs, it’ll stabilize your blood sugars.”

“Do not correct under 13 mmol/L [~234 mg/dL].”

“You need to eat a minimum of 45 g carbs per meal.”

“If you don’t like seeing high fasting blood sugar numbers in the morning, don’t test your blood sugar then.”

“You will likely be dead from diabetes by age 30. If by some miracle you are still alive, you will be blind, on kidney dialysis, and in a wheelchair due to amputations.”

“Are you sure you have type 1?”

“It’s probably best if you stop sports and strenuous exercise.”

“If you go low-carb, you’re going to kill yourself.”

“An A1c below 6.5 is dangerous.”

“You don’t have to bolus for corn or peas, they are freebies.”

“Your insides are destroyed from having diabetes so long.”

One woman shared the following story:

“When my daughter was diagnosed at age 2 (I had diagnosed her and had to fight with her pediatrician to test her blood, because her urine test was normal. We already ate low-carb, so I had to feed her a high-carb meal and take her back and storm the pediatrician’s office and force them to give her a test, which came back at around 500, at which point they finally sent us to the ER). After diagnosis, the endo told us she needed at least 100 g carbs for each meal (at age 2!!!), plus 30–50 g snacks in between meals. Insanity! They had her on massive amounts of Lantus, NPH, and Novolog. They told me to feed her lots of ice cream before bed every night to hold her steady at around 200, which was a great night-time number for a kid that age! I swear I still have PTSD from that whole experience! Nightmare! I had to fight with them every step of the way!”

Such stories amassed very quickly, with many nodding their heads at having similar experiences. Is there perhaps a gap in basic diabetes education, in particular for non-specialists?

Image credit: Haidee Merritt. Republished with permission. Please visit her Etsy store for more original work and gifts. 

Almost all will likely agree – while we cannot expect every healthcare provider to be fully attuned to the latest developments in diabetes diagnostics and treatment, an accurate knowledge of the basics should be a requirement – especially with the high number of diabetes diagnoses, and undiagnosed or misdiagnosed patients.

Moreover, ensuring better understanding of diabetes and its management across the board, for all providers, is highly likely to improve patient outcomes in various situations, including recovery from illness and surgery, and more effective prevention of numerous diabetes-associated complications.

***

What are your thoughts on this issue? Have you ever had a surprising conversation about diabetes with a healthcare provider?

Source: diabetesdaily.com

Are CGM Users Aware of Time in Range?

This content originally appeared on diaTribe. Republished with permission.

By Eliza Skoler and Rebecca Gowen

dQ&A surveyed 2,540 CGM users with type 1 or type 2 diabetes to find out how aware they are of their own time in range: 87% of respondents knew how much time they spend in range daily

Time in range is the percentage of time that a person spends in their target blood glucose range (70-180 mg/dl). This measurement of diabetes management along with time below range and time above range helps people assess patterns and trends throughout the day to inform daily treatment decisions in a way that A1C cannot. It is also becoming more well-known and accepted in the world of diabetes as a good indicator of diabetes management.

dQ&A, a market research company, wanted to measure people’s awareness of their own time in range. They surveyed 2,540 people with type 1 or type 2 diabetes who use continuous glucose monitors (CGM). The following question was posed to respondents: “Do you know roughly what percentage of your day (on average) you typically spend with your blood sugar between 70-180 mg/dl?” For those people who answered yes, dQ&A then asked them what percentage of time they typically spend in the target range (70-180 mg/dl) each day. It is important to note that the majority of people included in this survey were White, had type 1 diabetes, and were using an insulin pump.

Important survey results included:

  • 87% of all respondents knew roughly how much time they spent in range each day, while 13% did not. These results were generally consistent across several factors including people with type 1 and type 2 diabetes, adults and children, and people with type 2 diabetes who were or were not taking insulin.
  • 29% of respondents reported that they typically spend 71-80% of their day in range. 30% of the people surveyed reported a time in range above 80% while 41% of respondents reported a time in range lower than 71%.
  • People with type 2 diabetes who are not taking insulin are significantly more likely to report spending 91-100% of their day in range (36%), compared to adults with type 1 diabetes or people with type 2 diabetes on insulin (9% and 11%, respectively).
  • Time in range was higher in older age groups. The group with the lowest self-reported time in range was people under the age of 18: only 44% of people 18 years or younger spent more than 70% of the day in range, compared to 56% of people ages 18-44, 62% of people ages 45-65, and 68% of people over the age of 65.

Our takeaways from this data:

  • Among people who use CGM, the majority acknowledge time in range as a measurement of their glucose control. However, we believe more people can be educated on how to understand and act on their time in range data.
  • The majority of people with type 1 and type 2 diabetes report achieving the  time in range target of more than 70% and this was particularly true for those in older age groups.
  • An important focus should be placed on helping young people find strategies to improve their time in range and incorporate it into their self-management.

To learn more about time in range click here.

Source: diabetesdaily.com

How Racial Bias Impacts Health Outcomes

COVID-19 is killing black Americans at three times the rate of white Americans. But it is not just COVID-19. Four hundred years of systematic discrimination has created systems that leave black people with dramatically worse health outcomes than others. Many living with diabetes have faced discrimination in their lifetime. Diabetes still poses barriers to getting fair treatment in our society, whether in school or work, exclusion from sports teams, or mismanagement in the hospital setting. All too often, living with diabetes as a person of color will compound these barriers.

Studies have shown that there are systemic, negative biases against people of color embedded in our healthcare system. This is layered on top of inequitable social determinants of health that people of color face, leading to poorer health outcomes, additional complications, and earlier deaths.

Black People Have a Higher Rate of Diabetes

Black people are more likely to have diabetes. There are 4.9 million non-Hispanic African Americans aged 20 years or older who have diabetes in the United States, according to the CDC. They are 77% more likely to have diabetes than non-Hispanic Caucasians. Part of this trend may be genetic, but one’s environment and socioeconomic status play a significant role in the development of type 2 diabetes, especially in a society without a robust social safety net.  Among racial and ethnic groups, African Americans have the highest poverty rate at 27.4% (compared to Hispanics at 26.6% and whites at 9.9%). Additionally, 45.8% of young black children under the age of 6 live in poverty, compared to 14.5% of white children.

There are many factors that contribute to this, but a history of institutionalized racism (the legacy of slavery, redlining and Jim Crow laws) have largely prevented African Americans from cultivating intergenerational wealth (which for most Americans comes from buying and selling real estate), and breaking the cycle of poverty proves to be nearly impossible in most circumstances.

Poorer, segregated (de facto segregation) black neighborhoods are more likely to face food deserts (areas where there are few or no grocery stores), lack access to healthy foods (including fresh fruits and vegetables), families may lack access to reliable meals (especially in the summer, when schools are no longer serving children breakfast and lunch), and unsafe streets and a lack of green space (few or no public parks). Neighborhoods of lower socioeconomic status are all risk factors for obesity and the eventual development of type 2 diabetes. 

Black People Have Higher Rates of Complications and Death

Black children and families are more likely to develop diabetes, and when they do, they face graver health outcomes. One recent study found that black youth have an average HbA1c of 10.6% compared to 8.3% for their white peers, and black children are twice as likely as white children to die from diabetes. Blacks are also more likely to experience greater disability from diabetes complications such as amputations, blindness, kidney failure, and increased risk of heart disease and stroke. Diabetic retinopathy is 46% more prevalent in African Americans than non-Hispanic whites, and African Americans are at least 2.6 times more likely to have end-stage renal disease due to diabetes than Caucasians. Most telling: the premature death rates for blacks with diabetes are 27% higher than for whites with diabetes.

racism and diabetes

Photo credit: iStock

Racism Is Built into Our Healthcare System

Implicit bias plays a large role in the unfair treatment of black people in the health care setting. In 2005, the National Academy of Medicine released a study that found that “racial and ethnic minorities receive lower-quality health care than white people, even when insurance status, income, age, and severity of conditions are comparable.” This suggests that poverty and lower socioeconomic status does not account for the whole picture of poorer health outcomes in black people with diabetes.

The report continued, “…minority persons are less likely than white persons to be given appropriate cardiac care, to receive kidney dialysis or transplants, and to receive the best treatments for stroke, cancer, or AIDS. It concluded, “some people in the United States were more likely to die from cancer, heart disease, and diabetes simply because of their race or ethnicity, not just because they lack access to health care.” Simply put: people are dying at higher rates just because the color of their skin is darker.

One study of 400 hospitals in the United States showed that black patients with heart disease received older, cheaper, and more conservative treatments than white patients presenting with the same disease and symptoms. Black patients with diabetes have higher rates of amputations than white patients, even when less invasive interventions are available. Additionally, another study showed that physicians were more likely to prescribe pain medications to white patients, mistakenly believing that black people “feel less pain”.

COVID-19 is killing black Americans at three times the rate of white Americans.

Where Do We Go from Here?

Social determinants of health, physician and healthcare workers’ implicit bias and systemic racism in our healthcare system all contribute to higher rates of disease, complications, and death. Neighborhoods and schools remain dramatically segregated and unequally funded.

The United States has a two-tiered health care system that provides fantastic care to those who can afford private health insurance, and little to none to those who cannot (aside from Emergency Department visits). We, as a society, do not value or fund preventive health care as much as we should. We don’t prioritize feeding our babies healthy food, or making sure they have space and safety to exercise regularly. We step in with too little too late for those who need help the most. We are biased in our healthcare decisions and have not fought against institutionalized racism early or long or loud enough. Now is not the time to “not be racist”, but to actively dismantle institutionalized racism from the inside out.

We need more black physicians, and nurses, and emergency medical technicians. We need to put our dollars into segregated neighborhoods and schools and prevent diabetes before it devastates underserved communities even more. We need to listen to black patients in hospitals. We need to trust black people when they voice their health concerns. We need more black voices in the diabetes online community. We need to lift up the voices of black people.

We need to do more for those that we have failed for far too long. We have already lost so much, and we need to act before it is too late.

Source: diabetesdaily.com

FDA Approves Lyumjev – A New Rapid-Acting Mealtime Insulin

This content originally appeared on diaTribe. Republished with permission.

By Frida Velcani

Lyumjev reduces blood glucose spikes and can be taken at the beginning of a meal, or even 20 minutes into the meal; available through Lilly’s insulin affordability program

A new rapid-acting mealtime insulin has been approved by the FDA to reduce high blood sugar after meals and keep blood glucose levels in-range. The insulin is rapid-acting, meaning that it is absorbed into the bloodstream and the body more quickly. This approval provides another important mealtime insulin option for adults with type 1 or type 2 diabetes. Lilly’s Lyumjev was approved in Japan and Europe in March 2020, and the company is working to make Lyumjev available to people in the United States as quickly as possible.

Lyumjev will be offered at the same price as Humalog. Lilly will also offer Lyumjev through its newly launched Insulin Value Program, which makes the therapy available at $35 per month for people who are uninsured or have commercial insurance. The $35 cap applies regardless of the number of insulin doses required.

This approval was granted based on the results from the 2019 phase 3 PRONTO-T1D and PRONTO-T2D trials. The data showed that, compared to Humalog, Lyumjev reduced blood glucose spikes (hyperglycemia) one hour and two hours after a meal in people with type 1 and type 2 diabetes. The drug did not affect A1C reduction. In people with type 1 diabetes, Lyumjev reduced hypoglycemia four hours after meals, whereas in people with type 2 diabetes, the insulin slightly increased hypoglycemia both one to two hours and two to four hours after a meal.

Lyumjev can be taken at the beginning of a meal or 20 minutes after starting it. This flexibility is due to the faster onset and offset of the insulin. That said, it is still strongly recommended that whenever possible, people should take Lyumjev before the start of the meal.  Lyumjev by Lilly joins Fiasp by Novo Nordisk as the two faster acting insulins available giving people with diabetes more flexibility in mealtime insulin dosing.

Source: diabetesdaily.com

Research Shows High Blood Sugar Can Cause Brain Damage (ADA 2020)

New research presented at the American Diabetes Association (ADA) 80th Scientific Sessions last month revealed some startling potential consequences of hyperglycemia on brain function. Scientists from the University of California, Los Angeles, applied brain imaging and specialized analysis techniques to discern differences in the brain structure of patients with type 2 diabetes at different levels of HbA1c, along with nondiabetic control subjects. The work was funded by the National Institutes of Health/ National Institute of Nursing Research.

Study Design

A total of 49 patients with type 2 diabetes were enrolled in the study (12 controls, 22 with A1c>7%, and 15 with A1c<7%). The demographic information is summarized below.

For all subjects, magnetic resonance imaging (MRI) was used to gather images of the brain, and the “whole-brain mean diffusivity (MD)”, a measure related to certain brain functions, was assessed and compared between the three groups.

Study Outcomes

The main outcome of the study was as follows:

“Uncontrolled T2DM patients showed increased MD values in multiple brain areas, including the cingulate, insula, para-hippocampal, hippocampus, cerebellum, basal-forebrain, prefrontal, frontal, and temporal cortices over controlled T2DM patients and healthy controls.”

The study authors went on to explain that the brain regions that showed significant tissue damage are known to involve various aspects of cognition, including mood.

Conclusions

The main implications of this study are as follows:

  • Higher A1c levels are associated with higher likelihood of brain damage
  • The areas of the brain that are likely to be affected serve to regulate various cognitive aspects, including mood

Furthermore, the study authors noted that the brain injury incurred due to hyperglycemia may further hinder the patients’ ability to manage their blood glucose levels effectively. In the clinical implications discussed in their poster, the researchers concluded,

“Poor glycemic control is associated with increased brain injury. Brain injury is located in regions which can impair diabetes self-care. Patient education which require these brain regions may not be effective. If confirmed, brain protection should be considered as a benefit of good glycemic control in clinical discussions with T2DM patients”

While this work provides important insights into how persistent hyperglycemia may negatively affect cognitive function, it will need to be further validated through additional research. Also, as this study was performed on a cohort of patients with type 2 diabetes only, it is not clear at this time whether these findings may be relevant for those with type 1 diabetes, although it is logical to postulate that glycemia is the primary determining factor in these findings.

Source: diabetesdaily.com

Debate: Should the Artificial Pancreas Include Glucagon? (ADA 2020)

For the millions of people living with type 1 diabetes worldwide, the development of an effective system to automatically regulate blood sugar levels is of paramount significance. Artificial pancreas systems (APS) are being developed with the goals of automatically adjusting the delivery of insulin (and potentially, glucagon) based on glucose readings from a continuous glucose monitor (CGM), taking a lot of burden off patients, improving glycemic management, and enhancing safety.

What is the best way to approach the design of an artificial pancreas system? What are the pros and cons of including glucagon in the system alongside insulin?

Two experts debated this important issue at the American Diabetes Association (ADA) 80th Scientific Sessions last month.

Dr. Roman Hovorka, PhD, FMedSci from the University of Cambridge, argued against the inclusion of glucagon in the system, while Dr. Steven J. Russell, MD, PhD from the Massachusetts General Hospital, presented his case to support the use of a dual-hormone system. Both speakers disclosed several relationships with diabetes technology companies (including those working to develop APS).

Here is the summary of this interesting debate.

The Case for Single Hormone

Dr. Roman Hovorka highlighted some research outcomes of artificial pancreas systems that utilize insulin alone.  He presented data from several studies showing that these devices “improve time in target and time below target” as well as reduce A1c. However, the time in target range was only increased by ~11%, and the A1c improvements were modest, with the average A1c still above the ADA recommendations.

Dr. Hovorka explained that the vast majority of companies are currently moving forward with single-hormone systems. He also focused on a system developed by Cambridge that he’s very familiar with, showing data where ~95% time-in-range (TIR) was achieved. Notably, he remarked that a low-carb diet was also an important factor in this success case. Overall, however, only 7% of users were shown to achieve a time-in-range metric of >90%, although 28% achieved a TIR of >80%, 69% achieved a TRI >70%, and 86% achieved a TIR of >60%.

The presenter noted that one of the main issues currently hindering the efficacy of the APS is the delayed insulin absorption and action after subcutaneous insulin delivery. Adding glucagon into the system will not fix the issue, he noted, as “dual hormone delivery DOES NOT accelerate insulin absorption.”

While he acknowledged that glucagon could be useful in reducing low blood sugar risk in such systems, he also highlighted the complexity and high cost of such a system as barriers. In addition, he noted that the use of two separate cannulas could be burdensome, and for children, in particular. He also noted that the chronic delivery of glucagon subcutaneously requires more research to identify any risks.

In comparing the outcomes between single-hormone vs. dual-hormone systems, Dr. Hovorka noted that there was a slight increase in the TIR for the dual system (~78% vs. 71% in the longest studies), and the mean glucose (156 mg/dL vs. 140 mg/dL) was lower for those using the dual system. He also presented data to indicate that daytime hypoglycemia (in particular during exercise) could be reduced using a glucagon-insulin system, while a single insulin system was enough to eliminate hypoglycemia overnight. Furthermore, “comparative benefits of the single- and dual-hormone systems for improving HbA1c and preventing severe hypoglycemia remain unknown,” he underscored.

The Case for Dual Hormone

Dr. Steven Russell noted first that he believes “insulin-only hybrid artificial pancreas systems are the state-of-the-art in diabetes care” and that he is involved with projects that utilize both single- and dual-hormone approaches. Next, he went on to explain why he thinks a dual-hormone system would be more appropriate.

After pointing out that there are actually two hormones that are missing in type 1 diabetes – insulin AND glucagon, he suggested that in addition to further preventing hypoglycemia, a dual-hormone system can also help achieve lower average glucose and higher TIR than an insulin-only system. He presented several studies to support this point, including recent data from his project.

Importantly, Dr. Russell pointed out that by using micro-doses of glucagon to prevent or treat hypoglycemia could “oppose weight gain or encourage loss”. This is because using glucagon instead of carbohydrates to prevent or treat low blood glucose “promotes satiety and increases energy expenditure”.

While the speaker acknowledged the challenges associated with developing a dual-hormone system, he also noted that recent work has been bringing us closer to achieving this feat effectively. For instance, a number of stable glucagon formulations are now available (although not yet FDA approved for use in such a system). The safety studies that have been conducted have been reassuring.

Moreover, Dr. Russell addressed a common concern of glycogen store depletion, citing a 2015 study that indicated “no significant decrement in liver glycogen after repeated glucagon doses”. Importantly, he also presented some research showing that “users prefer the bi-hormonal system”, especially among those who aim for lower targets.

When addressing the potential increase in cost for a dual-hormone system, Dr. Russell had this to say:

“[The] significant increase in beneficial outcomes will justify the increase in cost… The difference in having no automation to single-hormone artificial pancreas is the same increment as you get going from a single-hormone artificial pancreas to dual-hormone… If one can justify adding automation, one could justify some additional expense to add the cost of the glucagon…”

Conclusions

Numerous artificial pancreas systems are currently being developed, with the vast majority opting for the insulin-only version. No doubt, the specific algorithms and insulin types used also play a paramount role in their efficacy and patient satisfaction. The use of glucagon remains a point of contention.

What are your thoughts on the subject?

Source: diabetesdaily.com

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