This content originally appeared on diaTribe. Republished with permission.
By Arvind Sommi, Andrew Briskin
Quality measures are tools to evaluate the effectiveness and quality of healthcare. Measures such as A1C, blood pressure, and cholesterol are used to understand health at the population level to ensure people with diabetes are getting the best care possible. At The diaTribe Foundation, we believe that Time in Range would be a valuable addition to the quality measures for diabetes care.
During a routine office visit, your healthcare provider may check certain health measures such as your A1C, blood pressure, and cholesterol. These tests are primarily used to assess your individual health and the effectiveness of your diabetes treatment plan. They are also used to evaluate the overall quality of care provided when these results are combined across all patients in a healthcare professional’s office, healthcare system, or health plan.
Recent advances in glucose monitoring, and the increasing use of continuous glucose monitors (CGM), has led to wider use of the metric Time in Range (TIR), which is a helpful supplement to A1C in assessing your glucose management. Because of this, TIR could be a valuable addition to the quality measures for diabetes care if it became a more widespread metric – a feat that is challenged by barriers to accessing CGM and integrating it into electronic health records.
What is a quality measure?
Quality measures can encompass many things but generally include different types of measurement domains, as outlined below.
Some tests, such as A1C screening or blood pressure monitoring, can serve as both a healthcare process and an outcome measure.
At the population level, outcome measures evaluate whether certain established goals are reached for a group of people. For example, this might be the percentage of patients in a healthcare practice with an A1C greater than or less than 9.0%. Quality measures, in this way, are used by insurance providers, people with diabetes looking for the best healthcare professionals to use, researchers, employers, and reporting agencies to better understand the effectiveness of diabetes treatments and evaluate how effective healthcare professionals or health systems are.
How are quality measures used in diabetes care?
Quality measures are important in diabetes care because achieving these goals can decrease the risk of diabetes complications and lead to improved health outcomes for everyone. There are several quality measures in diabetes care, many of which you may be familiar with through routine office visits with your healthcare team, such as:
- A1C levels
- Blood pressure levels
- LDL cholesterol levels
- Eye exams
- Tests for kidney function
- Foot exam
Primarily, the combined data from these tests across many people with diabetes is used to determine if certain treatment methods are effective for the entire population. The data can also be used to reinforce or dispute established standards of diabetes care and respond to new care innovations (such as the latest technology or treatments).
Along with their use in evaluating treatments and standards of care, quality measures can also be used to evaluate healthcare professionals. In some cases, healthcare provider reimbursements from Medicare or other insurance providers may be tied to results, particularly under a value-based care model (learn more about value-based care here). For example, A1C screenings might be reimbursed only if enough patients meet A1C targets below certain thresholds.
Why might including Time in Range in quality measures be helpful to you?
While A1C is the current quality measure used to assess glucose management in people with diabetes, A1C has limitations. The accuracy of A1C measurements can vary based on factors such as race/ethnicity or chronic kidney disease. A1C tests are also generally limited to every two to three months and only represent an average blood glucose level over that time, which means daily highs and lows are not explicitly captured. Additionally, while low blood sugar may lower your A1C, it can also increase your risk of severe hypoglycemia – meaning a lower A1C may be dangerous if you experience frequent low blood sugars or mild hypoglycemia.
Time in Range is a glucose metric typically measured by a CGM. It is the amount of time you spend in the target range – generally between 70 and 180 mg/dL. The goal for most people with diabetes is to have at least 70% of your glucose readings within this range. Understanding your TIR as well as your time above and below range can help you and your healthcare provider assess how your body responds to medications, food choices, daily activities, stress, and a variety of other factors that affect your glucose. The increased use of TIR could help equip people with diabetes and their healthcare team with the information they need to make vital healthcare decisions and experience better diabetes care.
“Time in Range allows for quick, actionable steps to improve diabetes management and corresponding health outcomes,” said Dr. Diana Isaacs, a diabetes care and education specialist from the Cleveland Clinic. “Time in Range can be assessed more frequently and provides more actionable insight into glucose management. Making it a quality measure would increase the utilization of this powerful tool. It has the potential to revolutionize how we take care of people with diabetes.”
Increases in TIR have been associated with a reduced risk of microvascular complications such as eye (retinopathy) and nerve disease (neuropathy), with similar evidence emerging for other macrovascular complications such as heart disease. Plus, the use of CGM has increased dramatically over the last few years (for example in people with type 1 diabetes in the T1D Exchange registry, this number rose from 6% in 2011 to 38% in 2018), allowing more people with diabetes to use TIR data on a regular basis.
However, there are still barriers to integrating TIR as a quality measure for diabetes care. One major challenge is the many barriers to using a CGM. For instance, most insurers cover CGM only for a limited number of people with diabetes (for example, those with type 1 diabetes who take insulin). Until access is substantially expanded and more people are able to use CGM who wish to, TIR adoption into the standard quality measures will be difficult.
An additional challenge is that TIR data is not integrated into most electronic health records (EHR) used by clinicians, making it difficult for providers to analyze TIR data for all patients and to assess TIR at the community level. Efforts are currently underway to change these systems so that TIR can be integrated into her systems, similar to metrics like A1C and blood pressure; at the ADA Scientific Sessions this year Dr. Amy Criego spoke to the success that the International Diabetes Center in Minnesota has had with integrating Abbott LibreView data into their EHR.
Through the efforts of the Time in Range Coalition, diaTribe is working to increase awareness and hopefully the eventual adoption of TIR as a meaningful quality measure in diabetes care.
This content originally appeared on diaTribe. Republished with permission.
By Andrew Briskin
Andrew Briskin joined the diaTribe Foundation in 2021 after graduating from the University of Pennsylvania with a degree in Health and Societies. Briskin is an Editor for diaTribe Learn.
At the Milken Institute 2021 Future of Health Summit, leading experts in type 1 diabetes research and innovation discussed the path toward a cure, the latest in glucose monitoring technology, and the importance of screening for type 1 diabetes.
A group of leading experts in type 1 diabetes research and innovation took part in the panel discussion, “Tackling Type 1 Diabetes: Where the Science is Heading” at the Milken Institute 2021 Future of Health Summit last month. They exchanged insights on the advantages of continuous glucose monitoring, automated insulin delivery (AID), Time in Range for better diabetes management, as well as tantalizing new possibilities for curing type 1 diabetes.
The discussion from June 22nd was moderated by diaTribe Founder Kelly Close and included:
- Aaron Kowalski, Ph.D. – CEO, JDRF International
- Shideh Majidi, M.D. – Assistant Professor, Pediatric Endocrinology, Barbara Davis Center for Diabetes
- Felicia Pagliuca, Ph.D. – Vice President and Disease Area Executive, Type 1 Diabetes, Vertex Pharmaceuticals
- David A. Pearce, Ph.D. – President of Innovation, Research and World Clinic, Sanford Research
The panelists began by discussing how continuous glucose monitors (CGM) now provide people with type 1 diabetes even more information and the power to manage their glucose levels. CGM data provides people with crucial metrics such as Time in Range (TIR), which corresponds to the percent of time someone spends within their target glucose range – usually 70 to 180 mg/dL. This target glucose range may vary though, for example, if you are pregnant. You can learn more about the helpful metrics that CGM provides here. Alongside A1C, TIR allows more insight into your day-to-day diabetes management by showing fluctuations in glucose levels caused by factors like meals, exercise, illness, and more.
However, CGM is not perfect or widely accessible yet. The panelists touched on this issue of access to CGM and the existing disparities in care across race and type of insurance. Dr. Majidi emphasized that in populations with access to this technology, CGM use has increased from 20% to over 80% of patients over the last five years. However, some studies have shown that providers tend to prescribe technology only to certain patients due to unconscious biases about which patients may be able to handle using advanced technology.
Advocating for early and consistent training for healthcare providers on addressing these biases, as well as provider and patient education on CGM and other technologies for glucose management, Dr. Majidi said, “we need to look at these unconscious biases to start providing everyone with the opportunity to use and learn about new technology.”
The panel then explored the advantage of AID hybrid closed-loop systems. These systems combine a CGM, insulin pump, and an algorithm that allows the CGM and insulin pump to talk to each other. Dr. Kowalski said he was especially encouraged by the advancements in AID systems, emphasizing that it not only decreases the number of highs and lows, but it also removes much of the burden of diabetes management from patients and their families.
AID systems especially benefit families with children who have diabetes, reducing concerns from parents about the safety of their children during the night or at other times when the risk of hypoglycemia is high. The panelists said they were hopeful that these new innovations are bringing us closer to developing a fully closed-loop artificial pancreas, which could automatically respond to changes in glucose in real time without the need for a person to deliver manual boluses or calibrations.
Echoing their advice on how to address disparities in CGM use, the panelists noted the importance of education for healthcare providers to combat disparities in prescribing AID to ensure equal opportunity for all to achieve better health outcomes.
The discussion then shifted to the latest research towards a cure for type 1 diabetes, focusing on beta cell replacement therapies. Because type 1 diabetes occurs as a result of the body’s immune system attacking and destroying its own pancreatic beta cells (the cells that make insulin), scientists have been researching how to replenish the beta cell population from stem cells. Scientists believe that stem cells, not yet fully differentiated or mature cells, could potentially be directed to become functioning beta cells.
Dr. Pagliuca shared updates from her work at Vertex, studying stem cell-derived beta cell transplants in type 1 patients with impaired awareness of hypoglycemia. This initial study relies on systemic immunosuppressive drugs (these are drugs that “turn off” the body’s immune system so it won’t attack the implanted cells) to protect the implanted beta cells. The hope is that future studies will seek to use a different method called encapsulation, which protects beta cells from the immune system with a physical barrier, avoiding the need for immunosuppressant medications.
So far, with the successful conversion of stem cells into mature beta cells accomplished in controlled lab settings, the science has developed to the point of testing stem cell-derived beta cells in clinical trials, with Vertex first clinical trial now enrolling patients. This initiative will encompass the entire type 1 community, with Dr. Pagliuca stressing that “transitioning these breakthroughs into the clinical phase will require participation from all stakeholders, patients, researchers, and healthcare providers.”
Considering the latest research into the immunobiology of type 1 diabetes, the panelists advocated for significant increases in screening for type 1 across the general population.
Dr. Pearce advised that testing for the presence of specific autoantibodies (small molecules in the body that are the cause of the immune system attacking a person’s own beta cells) in the general population is essential for implementing prevention programs, given that the presence of at least two of these autoantibodies is a very predictive measure to assess the risk of developing type 1 diabetes.
According to him, the predictive power of these screenings make it is possible to classify an individual as having type 1 diabetes years in advance of any symptoms, even while they still have normal glycemic control. In this way, type 1 diabetes can be classified into 3 stages – stage 1 is when someone has two or more diabetes-associated autoantibodies, but normal glycemia and no symptoms. Stage 2 is when you have the autoantibodies, have begun to develop glucose intolerance or abnormal glycemia, but still no symptoms. Stage 3 is when symptoms begin and you are diagnosed with type 1 diabetes. Classifying diabetes in this way and identifying those in the early stages could increase patient involvement in clinical trials, and help connect individuals to new drugs such as teplizumab (not yet approved by the FDA), that aim to delay the onset of symptomatic type 1 diabetes or prevent it altogether.
Drs. Pearce and Kowalski agreed, recommending a screening strategy involving primary care providers and screening children during the toddler years. On the importance of this screening process for involvement in clinical trials, Dr. Kowalski noted, “Diabetes is a global problem. The voice of the patient is hugely important on new devices and therapies, and clinical trial pathways are delayed when there isn’t equal participation in the trials.”
You can watch the panel discussion and hear insights from the four incredible experts here.
This content originally appeared on Beyond Type 1. Republished with permission.
By Beyond Type 1
Imagine Spotlights is a weekly video series produced as part of ADA’s virtual Imagine Camps for kids and teens. Hosted by Rob Howe, this series features conversations with inspirational individuals affected by diabetes and offers a fun learning experience for campers and their families. Watch the first interview with Tiana Cooks below!
*Partial transcript of the conversation below, edited for content + clarity.
You were a senior in high school when you were diagnosed – did you have the typical symptoms?
That’s a great question, and I always think back to that time since I remember it so clearly, and I think it was at least a month before I started feeling a little sick. I don’t know if any of you have bathroom passes, but at my school, they gave us this sheet. And on this sheet, we had about 15 passes to use the entire school year. And if we didn’t use our passes, we received extra lunchtime. I had saved all of my bathroom passes. I had all 15 passes left. And then I remember in one week, I went through the entire sheet of bathroom passes and I was so mad at myself. I remember telling my teacher, “I have to go to the bathroom,” but I was all out of my bathroom passes. So my teacher said, “Tiana, are you okay?” And I said, “That’s a great question.”
I wasn’t feeling great. I was obviously using the restroom a lot. I was very thirsty. I was losing a lot of weight. And then I went to my track coach and said, “Coach, I’ve lost 10 pounds in the first two weeks of the season, what is going on?” And he said, “Well, you probably just lost it because you’ve been running so much.” And then I remember this is when it really hit me. I thought, why is my vision blurry? I remember waking up one morning and I couldn’t see. And so I pulled out my phone and I typed in my symptoms. The first thing that popped up was type 1 diabetes, and I thought, this is it.
Do you ever try to strike up conversations with others you see wearing a pump or continuous glucose monitor (CGM)?
If I see someone else with diabetes, we’re automatically friends. There was one time I was waiting in this line to order food for 15 minutes, and all of a sudden I saw someone with a Dexcom on and I thought, Am I going to stay in line? Am I going to go talk to them? And I chose to go talk to them. I went over and introduced myself to them because I just feel like it’s so rare. They call it seeing a diabetic in the wild. And it’s so rare to see someone that has their equipment on as well.
Can you speak to stigma and stereotypes in the pageant world? How do you battle people’s assumptions about living with diabetes?
People do often stigmatize people with diabetes. They think that just because we’ve got diabetes, we can’t eat certain things or we can’t participate in certain events and that is totally not true. It is present in pageantry as well, people don’t think that we can do pageants because we have diabetes. People don’t think that we can participate in different athletic events because of diabetes. And I think one thing that I’ve learned after participating in various events, whether that be track or softball or basketball or pageantry, there’s always going to be people that have their own opinions. And sometimes those opinions will not be positive, and that’s okay because we just have to educate others about diabetes.
Before I started competing in pageantry, I also had stigmas about people who competed in pageants. Before I had diabetes, I didn’t know what it was. And so until we continue to educate ourselves and others, it will be hard to be fully aware of what people go through. So the more we advocate and the more we continue to tell people and educate them about diabetes, I think the more that stigma is going to go away. I just want to say this, even if people at school say mean things about you because you have diabetes, you just have to know that you’re special and that you have to have that confidence. You have to be confident regardless of what people are saying about you because you know that you’re enough and regardless of what anybody says, you’re capable of doing anything in this life just as good or even better than anybody else.
What advice do you have for people who want to get involved and give back to others living with diabetes?
I would say, if you want to get involved, do what makes sense for you. Just because Tiana is very vocal about her diabetes and just because Tiana loves to talk to other people about it doesn’t mean that you have to. If getting involved for you just means telling people that you meet the warning signs of diabetes, then do that. It might look like being vocal in your community and not online. There’s this huge misconception that in order to be making an impact, you have to be posting or talking about it, and that’s totally false. You can make an impact in your own way. Maybe you write cards to people at your local hospital. That’s how I started, I volunteered at my local hospital.
There are also support groups going on in the community. And we have an online community, our Beyond Type 1 app, and that community is just a great way to meet other people with type 1. There are just so many ways to get involved and it doesn’t look like competing in a beauty pageant all the time. It doesn’t. Or it doesn’t look like having a platform online. I actually helped set up support groups in my community, and those were super fun. Sometimes there would be five people, and other times there would be 50 people at the support groups. It’s just cool to build that community and that support network.
This content originally appeared on diaTribe. Republished with permission.
By Katie Bacon
Katie Bacon is a writer and editor based in Boston. Her daughter was diagnosed with type 1 diabetes in August, 2012, when she was six. Katie’s writing about diabetes has appeared on TheAtlantic.com and ASweetLife. Katie has also written for The New York Times, The Boston Globe, and other publications.
Adolescence can be a confusing time, and this is doubly true for teenagers with type 1 diabetes. At a stage when everyone is starting to figure out who they are, the teenager with type 1 must also decide how much they want diabetes to be a part of their identity. Katie Bacon, the mother of a teenager with type 1, spoke with a range of experts and peers who shared their expertise and experiences on this subject.
Our daughter was diagnosed with type 1 diabetes at six years old, just before she started first grade. At the time, it was important both from a safety perspective and from an emotional one that the people around her knew about her diagnosis. Along with her teachers and the school nurse, we let all her friends and their parents know, and they rallied around us to support her. She quickly owned having type 1. It became an important and immutable part of her identity, one she was proud to share with others.
Fast forward eight years to this past fall, when she was doing orientation for her new high school. After being surrounded by a group of familiar and supportive friends from kindergarten through eighth grade, here she knew almost no one. Not to mention that, in the era of COVID-19 – with masks, cohorts, and strict rules about socializing – it would be much harder to meet people.
During orientation she was asked to create a timeline of important moments in her life. While chatting about what she might write, I asked if she was going to include her diagnosis. Her response seemed to come completely out of left field: “Why would I put that down? I’m not planning on telling anyone unless I become really close friends with them.”
She made it clear that she was now much less willing to acknowledge having type 1 as she entered high school. Although she didn’t express it quite this way, it seemed that the reason stemmed from a desire to avoid being judged or stigmatized – she didn’t want to be known as the new girl with diabetes. So, we agreed that we would tell the school nurse, her teachers, and her sports coaches – for her health and safety, it was non-negotiable that they all know. We also agreed that it would be up to her to choose when (and if) she would tell her friends.
Still, it felt like my daughter was cutting away her safety net. I wanted to know if this shifting perspective on her condition was typical for teenagers, and I wanted some advice on how to help her through it. I reached out to Rachel Rifkin, a longtime friend who was diagnosed with type 1 at age ten; to Dr. Ananta Addala, a pediatric endocrinologist at Stanford Children’s Health; and to Dr. Persis Commissariat, a pediatric psychologist at Joslin Diabetes Center who also has type 1. Through their expertise and experiences, they helped answer my questions about disclosing teenage diabetes versus hiding it; about stigma, perceived stigma, and how to deal with it; and about how to let go a little bit while still giving our daughter support through this process.
One of the crucial parts of adolescence is identity development, when teenagers figure out who they are in relation to their family and their peers. At this developmental stage, people are particularly sensitive to being different in any way; and if they are different, they want it to be in ways that they’ve chosen. All of this is complicated, of course, by having a chronic disease that requires frequent visible action and identifiable devices to manage (insulin shots, continuous glucose monitors or CGM, insulin pumps, etc.).
Dr. Commissariat took on this topic as the lead author of a paper on identity and treatment adherence in teens and young adults with type 1 diabetes, which appeared in Pediatric Diabetes. She and her co-authors looked at the differences between those who “incorporated” their illness versus those who “contained” it or tried to keep it separate from the rest of their identity. “Those who incorporate their illness … take it into account in their daily life and are able to find ways to include the illness as part of their sense of self. Those who contain their illness may try to keep their illness hidden, worry about stigma, or try to … maintain a sense of self [that is] unburdened by illness, often ignoring daily self-management needs.”
What they found, Dr. Commissariat explained to me, was that people who tend to take a more “positive approach to making diabetes part of their sense of self – people who view it as ‘it’s my burden and I’m okay with it’ – tended to have lower A1C levels. They were a little more engaged in treatment.” In other words, those teenagers who managed to incorporate diabetes into their identity usually did better.
Because of this, Dr. Commissariat works with her patients to help them develop an identity that has “an appropriate degree of type 1 in it. I don’t think anyone needs to identify first and foremost as a person with diabetes. But the fact of the matter is that there are secondary issues that come up if we don’t take care of diabetes. So, you must identify with it to some extent. And I think what oftentimes becomes difficult for teenagers is finding that balance between being a ‘normal teenager’ and being a teenager with diabetes. Because on its face, they don’t really go hand-in-hand, but they should and they can.”
As I’ve witnessed firsthand with our daughter, adolescence can be a time when children want to move away from their identity as someone with type 1. When Rachel Rifkin was a teenager, she found herself transitioning from being relatively open about having type 1 to having it be something that she preferred to keep to herself. “I always did whatever I could to avoid people knowing about it. I always wore my pump in a back pocket. I never wanted to clip it onto the front of my pants or anything.”
In her practice, Dr. Addala has seen people go both ways. While she says that it’s more common for teenagers to “minimize the thing that makes them different, which is a very normal teenage developmental thing to do,” she’s also had patients who have embraced that difference. And in fact, in those individuals she sees a “further doubling down on the fact that diabetes is what makes them who they are; it’s a source of strength and pride and something that defines their character.”
But for those teenagers who aren’t willing to talk about or share that they have diabetes, both Dr. Commissariat and Dr. Addala try to understand the reasons behind the hesitancy. As Dr. Addala explains, “I try to see where the source of the apprehension comes from. Is it specifically that they don’t mind taking care of their diabetes or they don’t mind wearing technology, but they just don’t want other people to see?”
In these situations, Dr. Addala treads lightly and tries to respect the teenager’s feelings while gently encouraging them to open up. “I let them lead a bit when this topic comes up. They might say, well, I think I could probably tell my closest friend that I have diabetes. Or maybe they’re not willing to tell anyone, and I do my best to support them even in those cases. I’m trying to find out where their internalized stigma is originating from, and then see how far they’re willing to go in terms of who they share the information with. I generally use this approach because then they have some ownership.”
Dr. Commissariat points out that there’s an essential difference between being private about having diabetes and being secretive about it. As she tells her patients, “You don’t need to advertise it. But for safety purposes, it is important that at least a couple of your close friends know.”
She also talks about helping teenagers learn to communicate that they have type 1 in a way that feels manageable and builds confidence. She tells her patients: “I want to know exactly what you wish other people knew about diabetes. And then let’s find a way to teach people in a way that is not burdensome to you. Teenagers are trying so hard to not draw too much attention to themselves, so I often practice with them in our visits – how can we bring this up in a way that is not going to bite you in the back? That could mean having a serious discussion with your best friend, or that could mean something as easy as wearing short sleeves around people who don’t know you have diabetes, just so that they can see your CGM. Wait for people to comment on it. Use a passive disclosure strategy where you just pull out your pump and you take a bolus, and you don’t say anything unless somebody asks you.”
It’s especially helpful for teenagers to have a disclosure strategy when it comes to romantic or physical relationships. As Rifkin says, “With people you’re interested in, it’s a whole other web that you have to navigate in terms of what you tell people and when. And as I’m sure you can imagine, if you have a CGM or a pump, there are physical things on your body that may come up. It’s helpful to have a strategy for how you deal with that.”
Teenagers tend to be both self-centered and self-conscious, so when it comes to diabetes, it’s easy for them to assume that everyone is noticing it in a negative way. Rifkin remembers being in a movie theater one time when her pump started beeping. “I was so horrified. I was like, ‘Oh my God. Everyone must hate me right now. I’m ruining this experience for them.’ You don’t have a lot of perspective at that age. Diabetes seemed like such a big deal.”
Dr. Commissariat points out that all teenagers tend to think the focus is on themselves – even when it’s not. She tells her patients, “Your friends don’t care that you’ve had to go to the bathroom to take an injection. Your friends are like, ‘Okay, let’s go to the bathroom, then I can check how my hair looks.’” And she comments that those who do ask about it are probably asking because “they’re interested and they’re curious, and maybe those will be the people who will help you in the future.”
Another tip Dr. Commissariat gives her patients is to make sure that they talk about diabetes in the way they want others to see it. “If you don’t want it to be a big deal, don’t make it into a big deal because people are going to mirror you.”
For both Dr. Addala and Dr. Commissariat, part of the process is working with the parents on learning how to give their children the space to develop independence, as teenagers need to do. This can be a difficult transition, since diabetes requires so much oversight from both the parent and the child. As Dr. Commissariat says, “One of the major tasks of this developmental stage is to be independent and become less attached to your parents. But it’s really hard with diabetes to be less attached to your parents and be more like your friends when you’re managing something that takes so much responsibility.”
Dr. Addala focuses on helping parents try to see the situation from their child’s perspective. “So often part of the conversation is helping the family understand why a teenager might not want others to know they have diabetes. Where safety is concerned, it helps for the family to create boundaries around what is a true concern, and what’s just an added buffer in terms of safety.”
For both Rifkin and Dr. Commissariat, owning type 1 was a long process, one that continued into adulthood. Now, Rifkin says, “I’m a lot more open about it. I think it makes sense that those feelings that teenagers have of wanting to be private and not wanting to stick out at all fade over time, as people feel more confident in their own skin. These days I don’t feel like I have to explain it to anybody.”
Dr. Commissariat describes a long process of slowly pushing herself to make diabetes a more public part of her identity; she started by keeping her pump on display rather than keeping it in her pocket. Then she moved to bolusing and checking her blood sugar in front of people she knew and then also in front of people she didn’t know. Part of the change, for her, started when her nurse practitioner sat her down and said, “You’re not a diabetic, you’re a person with diabetes.” (Dr. Commissariat has since learned about research suggesting that this shift in labeling helps people become “more accepting of their identity with diabetes.”)
“When I look back on it now,” she says, “that statement suddenly clicks for me [in terms of] everything I went through. I thought diabetes was trying to define me, and that was my big mistake. I own it, it doesn’t hold me. When I allowed diabetes to be a part of my day and created my own definition of myself with diabetes as just a part of who I am and what I do, it wasn’t quite as burdensome anymore, but still annoying, no doubt.”
As for our daughter, after a year at her new school, my sense is that she’s still private about her diabetes, but she’s no longer secretive. A couple of her closest friends at her school now know, and that feels like a good start. At an event at the end of the year, after what felt like months where she hadn’t been willing to bolus in front of anyone, I finally saw her pull out her pump and give herself insulin right there in public – even if she was a bit off to the side. No one except me seemed to notice. I felt like she was beginning to establish that place for herself where she could feel like any other teenager. A teenager who just happens to have diabetes.
Katie Bacon is a writer and editor based in Boston. Her daughter was diagnosed with type 1 diabetes in August, 2012, when she was six. Katie’s writing about diabetes has appeared on TheAtlantic.com and ASweetLife. Katie has also written for The New York Times, The Boston Globe, and other publications.
Note: Given the personal nature of this article, Bacon asked for and received her daughter’s permission to publish it.
This content originally appeared on Beyond Type 1. Republished with permission.
By Alexi Melvin
Dr. Steve Edelman, MD, is a diabetes specialist as well as the Founder of Taking Control of Your Diabetes (TCOYD) — an organization focused on empowering those with diabetes and encouraging them to “take a more active role managing their diabetes, and being self-advocates.”
Dr. Edelman recently took the time to chat with Beyond Type 1 about the importance of glucagon, among other key issues around hypoglycemia.
BT1: Thanks so much for speaking with us today Dr. Edelman — to start, can you talk about your personal background with type 1 diabetes?
Dr. Edelman: When I turned 15, I came down with all the drastic signs and symptoms and was diagnosed with type 1. 1970, they really were in the dark ages. So, my doctor put me on one shot of insulin and regular in the morning and we had urine testing and that was it. Could you imagine being on regular insulin just with breakfast?
And then eventually when I was an undergrad at UCLA, I ran into some really good diabetes doctors and they got me on the right track, but I did have really poor control for a long time. I didn’t really realize the importance of it. Unfortunately, as a result, I do have complications, but the good news is they’re stable.
What inspired you to create TCOYD?
It dawned on me that the education to people with diabetes was really quite lacking way back to 1995. I went to the Joslin clinic for my training. I went to UCSC to do clinical research, and I realized, all of the education was just going to healthcare professionals.
Not that it wasn’t good, but that’s the only direction it was going. I decided to put on a conference for people with diabetes at the San Diego convention center in September of 1995 and that was the beginning of TCOYD. And I was just going to do one conference here. I had two young kids and so I was just going to do it once a year. And that was a lot of work. But the feedback was so powerful, and people were, it’s a great phrase, so thirsty for information that I just said, “you can’t just stop at one a year” and then slowly spread. And then we started putting them on around the United States.
I felt that it was still important to educate healthcare professionals and about 15 years ago I kind of gave up on healthcare professionals. They were really stuck in the mud, really hard to change their practice habits, so that’s why I focused on patients. Then about 15 years ago, we started this program called Making the Connection, where we brought people with diabetes and healthcare professionals together in the same learning environment. The healthcare professionals got their own lectures in their own room at the convention centers and patients got their own, but in parts of the day, we brought them together. It was all in an effort to improve the doctor-patient relationship because our system is pretty broken. People are pretty pissed off at their caregivers. And if you don’t have trust in your caregiver and if the caregiver doesn’t have empathy back, it’s a bad combination.
So now we do our CME programs in parallel with our patient programs, and now we converted to virtual and I think we did a really good job. I don’t get much credit myself. If you’ve seen some of the crazy videos we do to try to keep education entertaining. I think we have a combination of good content and entertaining. I think the future’s going to be virtual learning for us. We have a conference on Saturday and we have people signed up from 60 different countries, about 3000 people across the United States, every state.
What sparked your desire to bring awareness to hypoglycemia and the need for glucagon options in particular?
A lot of people do not remember that in the old days there were people dying of hypoglycemia and it still occurs. Thanks to the continuous glucose monitor (CGM), it has gone down dramatically. I haven’t had any patients recently pass away from hypoglycemia, but I’ve had 10 people through the years, and they all were the same. They all had really good control. They were told a zillion times that they need to avoid complications, get their blood sugars down, but we didn’t have tools to prevent severe hypo. After having type 1 diabetes for 10 years, you kind of lose your response to hypoglycemia and you lose your symptoms. It’s really a sad thing.
What are some of the main issues that lead to severe hypoglycemia today?
Being a diabetes specialist, I see some pretty serious stuff all the time including people who failed at using the old glucagon kit, which delayed therapy and caused unbelievable hassles. I also have an uncle who had type 1 and he died from hypoglycemia and he had severe hypoglycemia unawareness. He had no complications of diabetes. He was treated at the Joslin Clinic when he was diagnosed, but he was so strict. I could not get him to back off like my other patients. And he basically got low and didn’t realize it. And that was it.
How have glucagon options progressed?
With the old glucagon kits, you had to be almost like a chemist to put these things together. And think about it, the person administrating and getting the glucagon ready to give, they’re typically not medically oriented. They’re the mother, the sister, coworker. And you’ve got to squirt diluted fluid into a little vile of powdered glucagon, mix it up, make sure it’s all dissolved. Then you got to suck it back out into the syringe. Then you got to take the syringe and jab it into someone on the ground that’s typically having a seizure or biting their tongue or rolling over, or demonstrating pretty bizarre behavior, which can occur. And when someone’s like that, time is of the essence. Anything that could make the quick administration of glucagon in an easy way for almost anybody, no matter what type of background is, is so important.
What would you say is the biggest obstacle around glucagon access today?
I think the biggest issue today is people do not have a valid prescription for it. I always have this analogy, if you have a house or an apartment and it gets robbed and they steal everything that’s important to you, what do you do next? You get an alarm system on your house. And I always say that same analogy. If someone’s had a bad hypo, they always have glucagon with them, but they did not have one at the time that they really needed it when they had a bad hypo. So, we have to really say, “Yeah, it can occur even if you’re on CGM, especially if you’re a type 2 on insulin as well,” cause that happens. And you got to have a valid glucagon kit with you, a valid meaning unexpired. These new glucagon kits last much longer. They don’t expire as fast as the older ones do, so that’s also helpful.
What are some ways that the CGM can most effectively help avoid hypos?
Well, one of the things I do in clinic is to really check where people set their upper and lower alerts. I had a patient yesterday in clinic who has had type 1 for 60 years. Her A1C is unbelievable, but she does have hypo unawareness and her lower alert was 65. You have to convince people that the extra alerts are worth it to you.
A lot of people said they put their lower alert at 65 and they don’t realize this situation called the “lag time.” So, when your blood sugar is dropping, even if you have a diagonal arrow down compared to, even worse, one arrow down or two arrows down, looking at the Dexcom arrows, they don’t realize that the glucose in your circulation is probably much lower than it appears on the Dexcom monitor or your phone. Because the Dexcom sensor and other sensors too, they measure the glucose in the subcutaneous tissue, and there’s a lag between the subcutaneous tissue and the circulation.
When your Dexcom goes off or when your CGM goes off at 65, and if your trend arrow’s going down, you could be 45 or 40. So that’s really an important issue, especially for people that their symptoms aren’t as obvious anymore. You could be caught off guard. And I had multiple patients that has occurred with. And then unfortunately, as you know, the majority of T1Ds in this country do not wear a CGM and that’s the topic of a whole other story.
Does this lag time issue apply to a regular glucometer as well?
Yes. If your blood sugar is dropping, your meter or CGM may be perfectly accurate of the subcutaneous tissue at 65. If you checked your blood sugar with a meter, it’s still going to say 65, but your circulation that’s going to your brain might be 45. So, the lag time is key. You could have the most accurate meter or CGM in the world, it doesn’t affect the lag time.
Is there anything else that you would want people to know about glucagon options that you don’t think is discussed enough?
I would say this, people have to ask their caregiver for it because in a busy clinic, it’s typically the last on the list and it’s important that they ask for a glucagon prescription.
I think they need to know that there’s two now that are just as easy to use as an EpiPen. Obviously, one is the nasal spray (BAQSIMI). But these devices aren’t for them, they’re for people who are going to be around them and that they should get more than one if they’re going to be at work or out of the house a significant part of the day. And have their best friend or their coworker be on the cautious side because when you least expect it, it can happen.
The continuous glucose monitor is an extraordinary tool.
Studies have shown that continuous glucose monitoring (CGM) use by people with diabetes can have a multitude of health benefits. Patients on CGM technology often have lower A1c levels, fewer highs and lows, and spend more time in their target blood glucose range. Also, CGM use has been associated with a higher quality of life; users often report a diminished fear of low blood sugar levels, increased self-confidence in making diabetes treatment decisions, and feeling more independent. CGM users are also less likely to experience diabetes distress.
The CGM also gives doctors and researchers an unprecedented wealth of glucose data. It has also given rise to a new statistic, time in range, which assesses how often blood glucose is within a safe range. Looking at comprehensive and real-world data trends in different patient populations can help us understand what is working and what’s not, and over time, adjust recommendations accordingly, and perhaps with a more personalized approach.
Unfortunately, the latest data shows that most people with diabetes fail to reach recommended glucose targets.
The Latest Time in Range Data
A recent study led by expert Richard M. Bergenstal, MD aimed to evaluate just how many people with diabetes in the US are achieving the recommended time in range (TIR), by looking at CGM data from almost 500 people with type 1 and type 2 diabetes over four years (2016-2020). This was an observational study – researchers did not interfere with participants in any way, and simply collected the real-life data. They ended up with close to 5,000 ambulatory glucose profiles (AGPs), and assessed TIR and hypoglycemia trends.
The results, which were just presented at the American Diabetes Association (ADA) 81st virtual Scientific Sessions, offer a unique glimpse into common glucose trends.
Dr. Bergenstal’s team looked at how frequently people with CGMs were able to achieve the most widely accepted TIR targets.
The International Consensus in Time in Range (TIR) … defined the concept of the time spent in the target range between 70 and 180 mg/dL while reducing time in hypoglycemia, for patients using Continuous Glucose Monitoring (CGM).
The team also evaluated how many participants spent less than 1% of the time with severe hypoglycemia (under 55 mg/dL).
Vast Majority Are Not Meeting TIR Goals
On average, only 39% achieved the recommended TIR goal. Only about 32% were able to meet both the TIR goal and meet the goal for minimal time in severe hypoglycemia (less than 1% of glucose readings <55 mg/dL). Of note, there was no appreciable difference between the first AGP evaluated and the average over the four years, suggesting that these trends didn’t change much over time.
The differences between those with type 1 diabetes and type 2 diabetes, however, were staggering.
Only 35% of type 1s achieved the recommended TIR, with fewer than 30% also being able to avoid significant hypoglycemia. In contrast, 53% of type 2s were able to meet the TIR target, with exactly half achieving this without experiencing severe low blood sugar levels frequently.
It may not come as a surprise that the targets were achieved more frequently by those with type 2 diabetes. People with type 1 diabetes, who have little or no insulin production, tend to experience more significant blood sugar swings than those with type 2. Hitting management targets is often more complex in this population, especially given the fear of hypoglycemia, which for so many goes hand in hand with insulin use.
The authors conclude,
Less than half of the population achieved ≥70% TIR, ~30% with ≥70% TIR and <1% time in clinically-relevant hypoglycemia. This indicates an opportunity to improve attainment of TIR goals, and an ongoing need to support the use of CGM data to help optimize care.
What Can Be Done to Improve Outcomes?
This investigation provides a sobering glimpse into the reality of life with diabetes, even as technology becomes more widely used. How exactly do we use this information to begin to help people with diabetes reach their treatment goals and improve their health outcomes?
The answer to this question is complicated. We know that achieving better health outcomes, in the short and the long term, largely rests on optimizing blood glucose levels in people with diabetes. It is well-established that blood sugar levels are directly responsible for the mountain of diabetes-associated complications that patients are repeatedly warned about. It follows, that if it was easy, everyone would be getting an A1c of <7%, and possibly opting for even tighter goals.
Where are we failing in helping people achieve their diabetes management goals?
This is the ultimate question, and one that likely has many components, and varies for different individuals. Leading health organizations should be taking deep dives to figure out these answers so that we can actually begin to develop more effective solutions. Here are just some of my thoughts on the matter:
Some people posit that outdated dietary recommendations are largely to blame. They may have a point. Despite the existence of a slew of literature showing the benefits of lowering carbohydrate intake, there is still a lack of widespread understanding and patient counseling on this approach, especially in the clinic. The quantity and quality of carbohydrate intake is absolutely at the heart of diabetes management, and has a huge role to play in dictating success vs. disappointment.
Carb restriction is not necessarily the only eating pattern that confers glucose benefits, it’s just a prominent example. At the very least, all patients should be educated on a variety of dietary approaches in detail, and understand the pros and cons of their options, so that they can make the best choices for their overall health.
Moreover, there likely needs to be more comprehensive guidance on self-adjusting medications around lifestyle variables. Diabetes is not static. Blood sugar levels are dictated by a complex and extensive array of factors. From our current weight to our exercise patterns, to stress and travel, among many others variables, patients need to feel confident and empowered to self-adjust their management dynamically. Too many people with diabetes rely entirely on a diabetes specialist to change their treatment plan on a quarterly basis, at best. We need to empower people with diabetes to become their own “diabetes specialists”.
Armed with knowledge, the tools they need, along with the support of a well-informed provider, I hope we can begin to see a change in these trends.
Recent decades have brought incredible advances in diabetes technology, but children and teens are still struggling to meet recommended glycemic targets.
There are almost a quarter-million young people in the US with diabetes (more than 75% with type 1 diabetes), according to the American Diabetes Association. For youth especially, early detection and optimal management are of utmost importance; with many decades of life ahead, keeping blood glucose levels in check today can help reduce unpleasant (and deadly) diabetic complications decades down the road. Prudent diabetes management also has immediate benefits and can have a huge impact on quality of life.
What’s the scope of the problem, and what can be done about it? Scientists at the American Diabetes Association (ADA) 81st virtual Scientific Sessions relayed the striking results of several studies on the state of things today for kids and teens with diabetes. Here are some of the most notable findings.
Youth A1c’s Are Not Improving
It has long been the case, unfortunately, that the majority of pediatric diabetes patients routinely do not meet their treatment goals, most often assessed via quarterly A1c testing. A team of researchers across the US reported on recent trends in recently diagnosed youth, as part of the SEARCH for Diabetes in Youth initiative. The major conclusion?
HbA1c levels remained stable but higher than recommended across discrete cohorts of SEARCH youth with type 1 diabetes duration ≤ 30 months, particularly among non-white youth.
In fact, the average A1c levels among young people with diabetes remain quite high; despite rapid advancement in technology use and newer insulin formulations, the report shows no significant change between average A1c levels between 2002 and 2016. The average A1c held steady at about 7.9%.
How Much is Technology Helping?
Now, for some better news. It appears that early use of continuous glucose monitoring (CGM) technology is associated with lower A1c levels. As reported by Dr. Priya Prahalad of Stanford Children’s Health, newly-diagnosed youth (2018-2020) who were offered CGM initiation early on had markedly lower A1c levels than those from a previous cohort that did not initiate CGM therapy.
Unfortunately, while the A1c differences between the two groups were significantly different at 6, 9, and 12 months after diagnosis, the average A1c level was still at or above 7%, for a considerable proportion of study participants. These results underscore the value of CGM use in improving diabetes management in young people, but also demonstrate the need for more effective management strategies in this group.
Trouble at School
A report from Dr. Christine March and her team at the University of Pittsburgh illustrated the unique challenges that children face on school days vs. weekends. In this study, CGM data from hundreds of children with diabetes were analyzed to assess trends in blood glucose levels (specifically, the time-in-range, TIR metric) across hours of the day and night, as well as on weekdays vs. weekends. The main result?
For weekday school hours, median TIR (70-180 mg/dL) was 52.4%; only 34 (15%) of youth met a TIR goal of >70%… Weekday and weekend CGM metrics were clinically similar, though TIR was statistically higher and time high/very high (>180 mg/dL) lower on weekends… Notably, TIR early in the school day was nearly half of TIR during similar weekend hours, perhaps relating to sleep/meal schedules.
Moreover, the team looked at various attributes, like insulin pump use, duration since diabetes diagnosis, and A1c level to see if there was a connection with the time-in-range metric. They report that younger age, shorter diabetes duration, and lower A1c levels were associated with more TIR during school hours. Interestingly, insulin pump use appeared to have no effect in this study.
Technology and Diabetes Distress
Several researchers posited that youths with diabetes and their caregivers have very different perceptions regarding the emotional impact of advanced diabetes technology.
Can Tech Reduce Family Conflict?
One study presented this week sought to determine whether the use of diabetes technology devices improved “family conflict” in teens with type 1 diabetes. In this evaluation of 60 participants, researchers found lower A1c levels in those using closed-loop technology. The technology also led to a significant increase in caregivers reporting lower levels of family conflict surrounding diabetes management. Perhaps surprisingly, the teenagers themselves did not seem to think that family conflict had been reduced by the closed-loop pumps.
Does Tech Alleviate Diabetes Worries, or Exacerbate Them?
A second study suggested that advanced technology use may actually provoke anxiety in children.
Dr. Fatemah Abdulhussein and colleagues from UCSF evaluated whether the use of advanced insulin delivery systems alleviated worry and fear of low blood glucose levels among patients and caregivers. The major findings?
Longer duration of diabetes, duration of pump use, and duration of CGM use were all associated with higher mean worry scores [among children, but not their caregivers].
That’s the cruel paradox of childhood diabetes in a nutshell: the longer a child has had diabetes, the more stress it causes. And superior management tools may only add to the emotional burden, rather than alleviate it.
Management Success Still Leads to Peace of Mind
The UCSF researchers also looked at diabetes treatment satisfaction scores and found that the only variable in the study that was associated with a lower treatment satisfaction score was higher GMI (glucose management indicator). They conclude,
These data suggest that despite recent advancements in diabetes technology, FOH [fear of hypoglycemia] and diabetes treatment satisfaction still remain significant concerns and need to be addressed in clinical contexts.
Parents Experience Diabetes Distress, Too.
A lot of burden falls on the diabetes caregiver, too, and understandably so.
A team of researchers based in Washington, DC and Nashville, TN looked at “parental reports of diabetes distress [DD], diabetes-related family conflict, quality of life” along with patient A1c levels. A key finding that that higher A1c levels in young people were associated with a higher incidence of parental diabetes distress, related family conflict, and quality of life. Notably, female caregivers were more likely to experience distress than male caregivers. Researchers summarize,
Importantly, parental DD is related to children’s glycemic control, suggesting that increased psychological support for parents with teens with DD is warranted.
A1c levels remain steady at about 7.9% for young people with diabetes in the US, still considerably higher than what is recommended by major health organizations. Some research shows that CGM utilization and the use of closed-loop insulin pumps can help improve diabetes management. Of course, cost and access also remain barriers for many when it comes to technology access.
Sadly, even with the use of advanced technology, it appears that patients and caregivers alike experience a considerable amount of distress in dealing with the demanding nature of diabetes management. Perhaps patients and families would benefit from increased emotional support as much as improved access to diabetes technology.
Importantly, A1c levels stood out in several studies as important determinants in patient and caregiver treatment satisfaction, as well as distress levels. Glycemic control should remain a paramount goal, not just for short- and long-term health, but also for emotional wellbeing. Helping youth with diabetes achieve or exceed recommended targets is likely to help lessen the mental burden of diabetes management and improve quality of life and family dynamics in the long term.
This content originally appeared on diaTribe. Republished with permission.
By Cheryl Alkon
We’re already thinking about carbs and calories all the time, and adding alcohol into the mix makes things more complex. Experts share their best advice on how to safely drink when living with diabetes.
People who choose to drink alcohol typically do so for a few main reasons: to cope with challenges, to be sociable, or just because they enjoy having a drink. But while alcohol may make some people feel more comfortable, drinking can be especially complicated for people with diabetes. If you’re choosing to drink with friends or loved ones, let’s talk about how you can do so safely with diabetes.
First, alcohol is a drug, and it can be highly addictive. If you don’t drink now, there’s no reason to start. In fact, avoiding alcohol is the healthiest choice for people with or without diabetes. Drinking more than is healthy for the body has been linked to issues in the brain, heart, liver, pancreas, and immune system and is associated with several kinds of cancer, according to the National Institute on Alcohol Abuse and Alcoholism. Drinking is also connected to other health problems, such as unintentional injuries (car accidents, falls, drownings), domestic violence, alcohol use disorders, and fetal alcohol spectrum disorders, per the Centers for Disease Control and Prevention.
So, with all that said, how can you best manage your diabetes if you choose to drink?
What happens in the body when you drink?
Your liver works to create glucose when your blood sugar levels are low, but it also processes any alcohol present in your body, says Sandra Arevalo, a certified diabetes care and education specialist and spokesperson for the Academy of Nutrition and Dietetics. More specifically, “Alcohol gets broken down by your liver. The liver is also in charge of making sugar when your blood sugar levels are low, by converting stored glycogen into glucose, and releasing that glucose into your bloodstream. When you drink, your liver is busy processing the alcohol and has a hard time producing glucose,” she said.
This process “puts people with diabetes at high risk of low blood sugar when they drink,” Arevalo said. “If you are on basal insulin, you may not make enough glucose for the amount of basal insulin you have taken, and you may suffer a hypoglycemic episode.” This applies primarily to people with type 1 diabetes, but people with type 2 diabetes are still at risk for low blood glucose levels when they drink.
What’s in a drink?
That’s a tricky question. What you are drinking and how much of it you choose to drink can make a big difference. Like most things with diabetes, there aren’t simple answers.
According to the CDC, moderate drinking is defined as two drinks or less per day for men, or one drink or less per day for women. The US Dietary Guidelines Advisory Committee recommends one drink or fewer per day for people of any gender. It is illegal for people under 21 to drink alcohol in the United States.
What does the CDC classify as “a drink?” One drink contains 14 grams, or 0.6 ounces, of pure alcohol, which normally equates to 12 ounces of beer, 8 ounces of malt liquor, 5 ounces of wine, or 1.5 ounces of hard liquor or spirits such as gin, rum, vodka or whiskey.
What influences your intoxication?
Several factors – including diabetes medications, food, and exercise – can all make things even more complicated, said Carrie S. Swift, a dietician and spokesperson with the Association of Diabetes Care & Education Specialists. “Overall, alcohol intake leads to less predictable blood glucose whether you have type 1 or type 2 diabetes,” she said. But “the impact of alcohol on blood glucose isn’t always the same.”
This can be caused by:
- Carbohydrate content of drinks: Beer and sweet wines contain a lot of carbohydrates, and can increase your blood sugar level despite the alcohol content. On the other hand, quickly cutting down your intake of these drinks, or quickly making the switch to dry wine or spirits, can carry a high risk of hypoglycemia.
- Diabetes drugs: Insulin and sulfonylurea medications such as glipizide, glyburide, and glimepiride – all of which help to lower blood glucose levels – “are more likely to cause low blood glucose when alcohol is consumed,” said Swift. Insulin and alcohol work similarly whether you have type 1 or type 2 diabetes. If you take metformin, pay attention to these specific symptoms when you are drinking: weakness, fatigue, slow heart rate, muscle pain, shortness of breath, or dark urine. “Excessive alcohol intake while taking metformin may increase the risk of a rare, but dangerous condition, called lactic acidosis. If you have these symptoms – get medical help right away,” she said. There are no specific or predictable ways that blood glucose levels react when taking other oral diabetes medications or GLP-1 medications, Swift added.
- Food: “If you drink on an empty stomach, you are more likely to experience hypoglycemia,” said Swift. Yet, eating while drinking “may also increase your blood glucose, especially if you eat more than usual or make less healthy food choices when you drink.”
- Exercise: If you are physically active either before or after drinking alcohol, it can cause your blood sugars to drop and lead to hypoglycemia.
What and how are you drinking?
If you have diabetes and choose to drink, what should you keep in mind?
- Alcoholic drinks can have as much added sugar as some desserts, so think about what kinds of drinks you are having. “It’s best not to choose alcohol mixed with punches or soft drink mixers, such as Pepsi, Sprite, or Coke, daiquiris, margaritas, or sweetened liquors like Kahlua or Bailey’s Irish Cream,” said Swift. Regular beer and sweet wines are also higher in carbohydrates. “These drinks not only add carbohydrate, but excess calories from the added sugars,” she said.
- If you have a continuous glucose monitor (CGM), use it. While you are drinking, you can see where your glucose is at all times and if it drops quickly. If you don’t have a CGM, “test your blood sugar more often,” said Arevalo. “Mainly if you are not feeling well, you want to know if your sugar is dropping, or if you are getting drunk. Even though both feel equally bad, you will want to know if your sugars are low so you can correct them quickly.”
- Never drink on an empty stomach. Instead, “Have a good meal before or during drinking,” said Arevalo. But know the carb count of what you are eating and work with your healthcare professional to determine how to take medication for that meal along with the alcohol you are consuming.
- Exercise and alcohol can make your numbers plummet. “Avoid drinking while dancing or exercising,” said Arevalo. “Physical activity helps to reduce blood sugar levels, and if the liver is not able to keep up with the production of glucose, the risk of hypoglycemia is even higher.”
- Have your supplies handy, such as a hypoglycemia preparedness kit. Always bring your blood glucose testing kit and enough supplies for you to test frequently. It’s a good idea to have extra test strips, alcohol swabs, lancets, as well as fast-acting forms of glucose, including emergency glucagon in case your blood sugar level doesn’t come up with food or glucose.
- If you take basal insulin in the evening, it’s not an easy answer on what to do if you plan to consume alcohol that evening, said Swift. “Depending on what type of diabetes the person has, and other factors, the results of drinking and taking a long-acting insulin before going out, may contribute to a different result,” she said. If you have type 1 and you take your usual amount of long-acting insulin and then you drink alcohol, “It may contribute to delayed hypoglycemia when drinking too much alcohol,” she said. If you have type 2 diabetes and are overweight or have significant insulin resistance, “Taking your usual amount of long-acting insulin may be a good strategy to avoid high blood glucose numbers,” she said. “No matter what your type of diabetes, frequent blood glucose checking will help you take the right action to avoid high or low blood glucose when choosing to drink alcohol.”
- If you use an insulin pump or a CGM, make sure you check that they are working properly before you leave the house, without any low-power indicators. If you need to fill your pump with insulin or change out either your infusion set or CGM sensor, do it before you begin drinking or get drunk. As Dr. Jeremy Pettus and Dr. Steve Edelman say in this video, “Protect yourself from drunk you as much as you possibly can.”
It’s important for everyone to avoid getting drunk to the point of not being able to protect yourself. For people with diabetes, this includes protecting yourself from hypoglycemia.
Navigating social situations
If you find yourself in situations where people around you are drinking, or your friends like to party, there are ways to fit in without feeling left out:
- “It’s okay to choose sparkling water with lemon or a diet soda instead of an alcoholic drink in a social setting,” said Swift. “If you do choose to drink alcohol, have a glass of water, or another no-calorie beverage between alcohol-containing drinks.” It’s also okay to hold a drink and not consume it, if that makes you more comfortable.
- Tell a trusted friend ahead of time where you keep your supplies, such as your blood glucose monitor or CGM reader, how to get glucose tabs or juice if you need it, and, if necessary, how to give emergency glucagon, either by injection or by nasal inhalation, said Arevalo. It’s also good to have a designated non-drinker in your group, who can watch out for everyone’s safety. And be sure the group you are with knows that the signs of a low blood sugar and the signs of being drunk are the same, said Swift: slurred speech, blurry vision, dizziness, confusion, lack of coordination, irritability, and potentially, loss of consciousness.
- Make sure you’re hanging out with people you want to be with, and consider where drinking fits in to your health goals and your life. “Friends are only friends if they accept you the way you are and help to take care of you,” said Arevalo. “If you feel peer-pressured to drink, let them know that you have to take care of yourself because of your diabetes. Good friends will respond in a positive way, and will understand and help you. If you want to have a good time and don’t want to keep an eye on how much you are drinking, alert your friends about your diabetes. Let them know where you have your supplies, how to use them, and who to call and what to do in case of an emergency.” Remember, never drive if you (or your driver) have been drinking.
Finally, if you’re going to drink, be smart about it. Always start with a blood glucose level that’s at a healthy, in-range level, sip—don’t chug—your alcohol, and avoid drinking to excess. Your body, your brain, and your diabetes will all be easier to manage once you’re done drinking, either for the evening, the event, or for good.
Cheryl Alkon is a seasoned writer and the author of the book Balancing Pregnancy With Pre-Existing Diabetes: Healthy Mom, Healthy Baby. The book has been called “Hands down, the best book on type 1 diabetes and pregnancy, covering all the major issues that women with type 1 face. It provides excellent tips and secrets for achieving the best management” by Gary Scheiner, the author of Think Like A Pancreas. Since 2010, the book has helped countless women around the world conceive, grow and deliver healthy babies while also dealing with diabetes.
Cheryl covers diabetes and other health and medical topics for various print and online clients. She lives in Massachusetts with her family and holds an undergraduate degree from Brandeis University and a graduate degree from the Columbia University Graduate School of Journalism.
She has lived with type 1 diabetes for more than four decades, since being diagnosed in 1977 at age seven.
This content originally appeared on diaTribe. Republished with permission.
By Katie Mahoney, Hanna Gutow, and Diana Isaacs
If you just got a continuous glucose monitoring system, you may be wondering how to use it most effectively and how to understand your glucose data. Read our tips, tricks, and things to consider.
Congratulations – you got a continuous glucose monitor (CGM), an excellent tool to support diabetes management. Hopefully you’re feeling optimistic and excited that you have the opportunity to use this technology.
It’s most likely that you and your healthcare team decided that using a CGM is the optimal way for you to manage your diabetes. Perhaps you were given a prescription for a personal CGM. Or maybe you’re trying CGM as part of Dexcom’s Hello Dexcom program (a free ten-day trial), through Abbott’s MyFreestyle program (a free 14-day trial), or as part of Medtronic’s CGM Discount Access program. You might also be trying professional CGM, which is owned by your healthcare clinic and worn on a short-term basis.
If you haven’t yet been able to get CGM, ask your healthcare team if you can get a trial device or get a prescription. CGM is recommended for anyone with diabetes who takes mealtime insulin. While many people with diabetes currently don’t have access to CGM, we’re hopeful that more and more individuals will be able to use this technology in the future. Regardless of what brings you to using a CGM, we’ve created a three-part guide to help you get started, including tips, tricks, and considerations.
Click to jump down to a section:
- Part 1: Before you start using your CGM
- Part 2: Applying your CGM sensor
- Part 3: Understanding your CGM data
- Part 4: Other tips, tricks, and considerations
- Brand-specific resources
Learn the basics.
Before you start using your CGM, it can be helpful to understand its basic features. Continuous glucose monitors (CGM) measure the body’s glucose (or sugar) levels by sensing the glucose present in tissue fluid (also called interstitial fluid). While a blood glucose meter (BGM) provides a measurement of the blood glucose level at a specific moment in time (when you prick your finger), CGMs provide a new glucose level every one to five minutes – depending on the device, that’s 288 to 1,440 times per day. A CGM provides a constant stream of information on glucose levels, trends, and patterns.
A CGM can either be transcutaneous (it goes through your skin) or implanted (it lies under your skin). CGMs require three basic parts:
- A sensor that monitors real-time glucose levels under your skin.
- A transmitter that sits on top of the sensor and sends glucose information to a smartphone app, reader, or receiver. In transcutaneous systems, the sensor and transmitter are connected as one small on-body device. Some transmitters are disposable with the sensor while others require an additional step to attach. In implanted systems, the transmitter is attached to the skin and can be removed without harming the sensor below the skin.
- A smartphone app, reader, or receiver to collect and display your data.
CGMs have a variety of features that differ by brand and model, including the amount of time the CGM needs to “warm up” before glucose readings are available, how long you can wear a CGM sensor before needing to replace it, and alarms that alert you to highs and lows. You can learn more about CGM devices here. For brand-specific resources and information, click here to jump down.
Personal CGM vs. Professional CGM
The CGMs that we just described are called personal CGMs – they are owned by the person with diabetes and used for a long period of time. They are available as real-time CGMs, where the data can be continuously viewed, or as intermittently-scanned CGMs, where information is recorded all of the time, but you need to scan the sensor to view the data.
Another type of CGM is called “professional CGM.” Professional CGMs are given to someone with diabetes for a short session (usually one to two weeks) to better understand that person’s glucose levels. After the wear period, the person will review the data with their healthcare professional. This can provide insights that inform the person’s diabetes treatment, and it can help healthcare professionals recommend therapy and lifestyle recommendations that lead to better glucose management.
Some professional CGMs have a real-time mode, meaning that the user can see their glucose levels while wearing the device. Other professional CGMs have a “blinded” mode. Blinded CGM means that you cannot look at their glucose values on-demand; instead, all of your glucose data is stored and shared with your healthcare professional. This can help your healthcare team identify hypoglycemia (or low blood sugar levels). If you get a blinded professional CGM, your healthcare team will analyze the data and discuss it with you once your wear period is complete.
While long-term, real-time CGM is most effective for day-to-day diabetes management, especially for insulin users, professional CGM can be an important tool for people who are not using personal CGM. Periodic use of CGM can help people learn the effects of food and physical activity on glucose levels, even for those not taking any diabetes medications.
Reflect on your goals, know your targets, and make a plan to respond to highs and lows.
It can be helpful to reflect on your CGM goals, set your glucose targets, make plans for responding to your glucose readings, and decide with whom you want to share your data:
- Reflect on your CGM goals. Perhaps you want to use CGM to prevent hypoglycemia using its alert system, or to prevent hyperglycemia and increase your Time in Range, or to manage glucose during exercise. Or, maybe you and your healthcare team are going to use professional CGM for two weeks to explore how your lifestyle habits affects your glucose levels. Regardless, the ultimate goal of CGM is to improve your diabetes management.
- Know your personal glucose targets and make a plan with your healthcare team for how you’ll respond to hyperglycemia and hypoglycemia. Knowing your target glucose range is important for responding to your real-time glucose values. For most people with diabetes the target range is 70-180mg/dl – learn more about Time in Range goals here. Make a plan that incorporates glucose trend arrows from your CGM to help you prevent big spikes out of range. Here are some prompts for you to discuss with your healthcare team:
- What is my glucose target when I wake up and before meals?
- What should my glucose level be two hours after a meal? If it is above that value, what actions should I take to bring my glucose levels down?
- What is my glucose target before bed?
- What high glucose level should I try to avoid? What should I do if my glucose gets that high?
- What low glucose level should I try to avoid? What should I do if my glucose gets that low? What should I do if my glucose levels are trending down?
Connect the CGM to the app and set the system up.
Download the mobile app associated with your CGM system if available. If you’re using a receiver (Dexcom device) or reader (Libre device), make sure it’s charged daily. The CGM should come with instructions for applying the sensor (every seven, ten, or 14 days) and pairing the app, reader, or receiver with your sensor and transmitter. If you have an implanted CGM, it will be applied by a healthcare professional and can last up to 90 days. To jump to brand-specific instructions and tutorials, click here. To learn about CGM adhesives and tips for keeping your CGM on, check out Adam Brown’s suggestions on the topic.
Once your system is set up, your CGM will need to “warm up” before you can see your data. Different models have different warm-up periods, but this will generally take one to two hours, after which your data will be accessible either directly (Dexcom, Guardian, Eversense) or by scanning your sensor (FreeStyle Libre). The warm up period for the implantable Eversense system is 24 hours.
For many people starting to use a CGM, video tutorials can be quite helpful. If you have the opportunity, it’s good to meet with a diabetes care and education specialist or your local pharmacist (if picking up your CGM from a pharmacy). Here are set-up and application tips and tutorials for your CGM:
- Abbott: FreeStyle Libre 14-day Tutorials
- Abbott: FreeStyle Libre 2 Tutorials
- Dexcom: G6 Tutorials
- Medtronic: Guardian Sensor Tutorials
- Senseonics: Eversense Tutorials
Once you’re set up with your CGM and the warm up period is complete, you can access your data. There are two types of data you’ll want to pay attention to: real-time data and past data.
Interpret your real-time data.
Depending on the CGM brand you’re using, you can either access your glucose data at any time by looking at an app on your phone, your smart watch, or your receiver. For those using an intermittently-scanned CGM, you can view your glucose levels by scanning your sensor with your smart phone or reader. Looking at your data can feel overwhelming at first, so we recommend focusing on two aspects of your real-time data:
- First, look at your CGM glucose value. Is it in your target range? If your glucose level is out of range, which steps of your plan should you follow?
If you’re experiencing hypoglycemia in particular, make sure you act right away to increase your glucose levels.
- Second, look at the trend arrow. Your CGM provides a “trend arrow,” to tell you the direction and speed with which your glucose values are changing. The trend arrow is helpful for understanding what’s going on and how you can respond. For example, if your glucose value is 90 mg/dl and your trend arrow shows that your glucose levels are going down, you may need to take action to prevent hypoglycemia; if your glucose value is 90 mg/dl and your trend arrow shows your glucose levels are increasing, you are likely not going to develop hypoglycemia.
Trend arrows can help with premeal insulin dosing, before and after exercise, before bed, and to understand where your glucose will be trending in the next 30 minutes. Trend arrows are particularly beneficial when used with insulin on board (short-acting insulin that was recently taken for food or to correct a high glucose level and is still working in the body). For example, if your trend arrows are going down and you have insulin on board from an insulin dose given two hours previously, your risk of hypoglycemia is even greater.
For those not using insulin, trend arrows can help understand how different foods and activities affect glucose levels. For example, if a person sees that the arrow is rising rapidly after a certain meal or snack, they can go for a walk to try to bring it down. It may also signal that next time you should consider a smaller portion size or try to add protein or fat to prevent glucose levels from rising as quickly.
Each CGM has a slightly different interpretation of the arrows, but here’s a general idea of what the trend arrows can tell you.
We recommend working with your healthcare team to decide how often to check your glucose levels. Many people benefit from checking glucose when waking up, before meals, before physical activity, and at bedtime. Some people benefit from checking one to two hours after meals. A person should also check their CGM any time they feel symptoms of high or low glucose. CGM alarms are especially helpful for monitoring glucose levels as they change – more on this below.
Interpret your past data.
Once you’ve used your CGM for a few days, you can see your recent daily trends and the amount of time you’re spending in the target range (70-180 mg/dl). This is also called retrospective data. It is beneficial to review your glucose data regularly to understand how your lifestyle – like the food you eat, your exercise habits, your stress levels, and medications you use – affects your glucose levels. Look at your glucose levels over the past two weeks, one month, and three months; talk with your healthcare team about trends that you are noticing and how they might be addressed. Learn about the many factors that affect glucose here.
During diabetes care appointments, your healthcare team can view this data in an Ambulatory Glucose Profile (AGP) report and use it to talk with you about how your diabetes management is going and any potential adjustments to your care plan. This should be a collaborative discussion between you and your healthcare team about how your diabetes data compares to your management goals and what changes could be made.
Each CGM system offers a standardized one-page report, called an ambulatory glucose profile (AGP). The AGP includes three important components:
- CGM key metrics
- 24-hour profile
- Daily glucose patterns
Although there are many ways to view your glucose data, the AGP report often has all of the information that you need. We’ll explain the three main pieces below. To learn more, read our in-depth piece on understanding your AGP report: “Making the Most of CGM: Uncover the Magic of Your Ambulatory Glucose Profile.”
CGM key metrics
More green, less red.
The time in range bar shows the percentage of time you spend in five glycemic ranges:
Time in Range: glucose levels between 70-180 mg/dl
- Time Below Range: glucose levels below 70 mg/dl
- Time in severe hypoglycemia: glucose levels below 54 mg/dl
- Time Above Range: glucose levels above 180 mg/dl
- Time in severe hyperglycemia: glucose levels above 250 mg/dl
Your goal is to grow the green bar and shrink the red bars – in other words, increase Time in Range and decrease time Below Range and time in severe hypoglycemia. See more on Time in Range goals and standard targets.
24-hour profile, also known as Ambulatory Glucose Profile (AGP).
How do you figure out how to change your diabetes management to increase your Time in Range and decrease your Time Below and Above Range? That’s where the 24-hour profile is helpful, which shows your daily glucose trends across the full 24-hour day.
- Understanding what the 24-hour profile shows: The black line represents your median glucose level throughout the day based on data from a set period of your CGM use (e.g., the last two weeks). The blue shaded areas help show how much your glucose levels vary at different points in the day.
- Using the data: Compare different times of day to see what might be influencing your glucose numbers. For example, while the person shown above has glucose readings that vary greatly at 3pm (indicated by a very wide shaded area), their 8am glucose numbers are much more consistent (the shaded area at 8am is narrower), despite being higher. This person also regularly sees a spike in sensor glucose readings at around 9am. What’s causing that increase? Maybe it’s a higher carbohydrate breakfast choice, forgetting to bolus, not bolusing early enough, or not accounting for all the carbs in breakfast. Reflecting on what is causing a spike or valley can help you make behavior changes to reduce fluctuations and increase your Time in Range.
The goal: The overall goal is to keep your glucose levels in your target range without big spikes or valleys, sometimes called “flat, narrow, in range” (FNIR). In the AGP above, the green box represents the user’s target sensor glucose range (70-180 mg/dl). While the user stays in range overnight and in the afternoon, they tend to see spikes in the morning and evening. With the goal of FNIR in mind, you can look at your long-term data and ask, what’s making it possible for me to stay in range? What is making my glucose spike or fall?
- The good news is the goal for most people is to spend 70% or more Time in Range. However, increasing your Time in Range by even 5% (an extra hour per day in range!) can be helpful. You don’t have to reach perfection to improve clinical outcomes.
Daily glucose profiles.
With your trend data, you also can see your daily 24-hour glucose profiles from the last two weeks. The figures show the target range (70-180 mg/dl) in gray, spikes above 180 mg/dl (hyperglycemia) in yellow, and valleys below 70 mg/dl (hypoglycemia) in red. Viewing the data day by day can help you evaluate how specific factors and behaviors impacted your glucose values on a certain day.
To make the most out of your daily glucose profiles, it can be helpful to log your daily food and exercise to compare with your glucose profile and see which behaviors help you stay in range and which ones tend to make you go out of range.
A helpful tool when reviewing your data with your healthcare team is called DATAA. Which stands for:
- Data – look at your diabetes data together
- Assess Safety – Look for and try to solve Time Below Range (hypoglycemia) first
- Time in Range – Discuss what’s working and how to replicate that by looking for the times of day or the days of the week when Time in Range was the highest
- Areas to Improve – Note when you spent more Time Above Range (hyperglycemia) and discuss ways to reduce this
- Action Plan – Develop an action plan together
Other Tips, Tricks, and Considerations
1. Exercise & your CGM
To learn about how to use your CGM before, during, and after exercise, check out our article “Exercise Well with Your CGM – Recommendations, Glucose Trends, and Strategies.”
An important note about exercising with a CGM: There can be a difference between CGM glucose measurements and BGM glucose measurements due to what we call a “lag.” Changes in glucose levels in interstitial fluid are not seen as quickly as they are in the blood. At rest, the interstitial glucose lags about five minutes behind the blood glucose; in situations when glucose changes rapidly, such as during exercise, lag time can increase up to 24 minutes. This means that your CGM readings aren’t always going to be accurate during exercise. This lag can also occur outside of exercise, any time your glucose levels are rising or falling quickly.
2. How to make CGM alarms your friend
Adam Brown has written about how it can be helpful to think about your CGM as a partner in your diabetes management, rather than a nag that points out when you’re not in range. Alarms can be useful tools. By alerting you to current or predicted highs and lows, as well as rate of change, you can increase your Time in Range and see your 24-hour glucose profile become flatter, narrower, and more in range. You can personalize your CGM alarm settings to your preferred thresholds or turn them off completely (though some devices won’t let you turn off an urgent low alarm at 55 mg/dl). It’s helpful to work with your diabetes care team to determine your individualized alarm settings.
3. Sharing data with friends, family, and care-partners
The ability to share your real-time glucose data with your care-partners and loved ones is a huge plus of using CGM – your support network can help you track your glucose levels and keep them in range. At the same time, sharing your data with others makes some people nervous and self-conscious. Decide who you want to share your data with and talk with that person about boundaries and how you want to communicate about your data. For more on how to approach these conversations, check out Kerri Sparling’s “To Share or Not to Share: My Approach to Diabetes Data,” and “How to Coach Your Care-Partner on CGM Data.”
Now that you’re using a CGM, talking with your healthcare team about your CGM data should become a key part of every visit.
Ahead of the visit: To help visits go smoothly, many healthcare professionals will ask you to upload your CGM data before you come into the office (or before your telehealth appointment) so they can review the data and be prepared to talk with you. Learn about uploading your data here. Note: some CGM systems upload automatically once connected to the clinic’s data portal. It’s also helpful to look over your data – like your AGP report – and come up with questions to ask your healthcare professional ahead of the visit. You may have questions about parts of your daily glucose profile that you don’t understand, areas where you’re having a hard time staying in range, or just general questions to help you navigate your data.
During the visit: To make sure that you and your healthcare professional are on the same page, it can be helpful to take a few minutes at the beginning of your appointment to explain your interpretation of your data in your own words. This may be a good time to start a conversation on any questions you may have prepared ahead of your visit. It is also important to take time with your care team to develop an action plan based on your CGM data with a few straightforward priorities for you to focus on before your next visit.
While any CGM can help improve your diabetes management, there are some differences between the currently available systems that you may want to consider or talk about with your healthcare team – see our chart comparing different CGMs here. Specifically, we recommend asking your healthcare professional about how alarms may be able to alert you to times of hyperglycemia or hypoglycemia, what it means if you have to calibrate your CGM, and how to use your CGM with smart insulin pens, mobile apps, or even insulin pumps in an automated insulin delivery (AID) system.
To reach out to CGM companies for product support, contact their customer service departments:
- Abbott: +1-855-632-8658
- Dexcom: +1-888-738-3646
- Medtronic: +1-800-646-4633
- Senseonics: +1-844-736-7348
This article is part of a series on Time in Range.
The diaTribe Foundation, in concert with the Time in Range Coalition, is committed to helping people with diabetes and their caregivers understand Time in Range to maximize patients’ health. Learn more about the Time in Range Coalition here.