This content originally appeared on diaTribe. Republished with permission.
By Brett Goerl and Matthew Garza
Recent studies have shown a link between brain diseases like Alzheimer’s and Parkinson’s and diabetes. Unfortunately, these conditions are becoming more common as our population grows older. Find out more and ways to improve brain health.
What are neurodegenerative diseases?
The term “neurodegenerative diseases” refers to a range of diseases in which the cells in our brains break down and can no longer perform their designated functions associated with movement or mental ability, according to the EU Joint Programme – Neurodegenerative Disease Research. The most common neurodegenerative diseases that affect people with diabetes are mild cognitive impairment (MCI) and dementia, which includes Alzheimer’s disease.
As we age, it is completely normal for our memory, thinking, and judgment to slightly decline. However, MCI occurs when our mental abilities decline faster than expected and begin to interfere with our daily lives. Age is by far the biggest risk factor for MCI, but diabetes, smoking, high blood pressure and cholesterol, obesity, and depression can further increase a person’s risk of developing MCI.
In around 10-15% of cases each year, the mental decline seen in MCI may progress further, making it difficult for us to carry out a healthy and happy life. When this happens, it is called dementia. The two most common types of dementia that affect people with diabetes are Alzheimer’s disease (AD) and vascular dementia.
While the symptoms of AD and vascular dementia are similar, they are caused by two different processes that occur in our brains. AD is thought to be caused by the abnormal build-up of proteins in the brain. One protein is “amyloid,” which clumps together in spaces around brain cells. The other protein is “tau,” which get tangled up inside brain cells. Vascular dementia, on the other hand, occurs when the blood vessels in our brain become narrow or start to bleed. This reduces the brain’s ability to get the oxygen it needs to keep brain cells healthy and for the brain to function properly. In both cases, brain cells become damaged, leading to a wide range of problems such as memory loss, worsened judgment, and personality changes.
AD is the most common form of dementia in the US, making up 60-70% of dementia cases. In the US, an estimated 5.4 million people of all ages are affected by AD, and one in eight people 65 years and older suffer from it. Considering the 14.3 million adults aged 65 and older in the U.S. who have diabetes, and it is easy to see why Alzheimer’s disease and diabetes are two of the most common diseases of aging. And recent research has suggested that they may be linked in various ways.
How do neurodegenerative diseases like Alzheimer’s and vascular dementia relate to diabetes?
We often think of diabetes as a problem with our metabolism since the lack of insulin (in type 1 diabetes) or insulin resistance (in type 2 diabetes) affects our body’s ability to maintain normal blood glucose levels. However, our brain consumes the most glucose compared to any other organ in our body. While the brain accounts for roughly 2% of our body weight, it uses almost 20% of the sugars we eat or release from our body’s stores.
An increasing amount of research shows that people with AD and other forms of dementia experience insulin resistance in the CNS (central nervous system, which includes the brain and the spinal cord), similar to what people with type 2 diabetes experience in other areas of the body, such as the muscles, the liver, and the fat. Scientists have yet to determine exactly what the relationship between diabetes and AD or other forms of dementia may be caused by, but there are a few theories that have been proposed.
- One of these theories focuses on brain insulin resistance, which is when brain cells stop responding normally to insulin, leading to problems related to the ways our brain cells communicate, use energy, and fight infection.
- Insulin receptors can be found in many areas of the brain, where they are involved with brain cell growth, communication, and survival. While insulin levels are lower in the brain than in the bloodstream, all the insulin that makes its way to the brain comes from the same insulin produced in the pancreas – it crosses over what is known as the blood-brain barrier (or BBB). This barrier prevents unwanted things from the bloodstream from entering the brain. However, injected insulin does not cross the BBB. The reduced transport of insulin across the BBB may be why brain insulin levels are lower when the body experiences insulin resistance (such as in pre-diabetes and type 2 diabetes) and in diseases such as AD.
- Insulin in the brain is known to help control our metabolism in certain other organs of the body, like the liver and fat tissue. The hypothalamus, the part of our brain that controls hunger, thirst, and emotions, is highly sensitive to levels of insulin in the brain. The association between type 2 diabetes and brain health may be due to problems with insulin’s actions in the hypothalamus, increasing a person’s likelihood of developing whole-body insulin resistance.
- Diabetes also increases the risk for damaged blood vessels, leading to heart disease and stroke. Damaged blood vessels can starve the brain of oxygen, leading to cognitive decline and vascular dementia.
- Diabetes disrupts how our bodies produce amylin, a hormone related to insulin that helps our bodies digest food. People with obesity and pre-diabetes often have high amounts of amylin, some of which can circulate and cross into the brain. Studies have shown that amylin can interact with the same protein deposits in the brain known to cause AD.
- Experiencing hyperglycemia for long periods of time can degrade the myelin sheath (a protective layer that surrounds your neurons). This leads to issues in how your nerves send and receive signals to your body. It can also lead to your brain cells dying.
Type 1 diabetes could be a risk factor for dementia for many of the same reasons as type 2 diabetes. In particular, the cardiovascular complications such as heart disease and stroke that are associated with type 1 diabetes could provide an explanation for its relationship with vascular dementia. Additionally, higher rates of cognitive dysfunction for those with type 1 diabetes could be related to frequent cases of hyperglycemia and hypoglycemia. Indeed, severe hypoglycemic and hypoglycemic events are associated with increased dementia risk for older adults with type 1 diabetes.
Is diabetes a risk factor for developing neurodegenerative disease?
On average, people with diabetes experience slightly more cognitive difficulties associated with MCI across their lifespan, but experiencing cognitive difficulty does not mean you will eventually get diagnosed with dementia or AD. The prevalence of type 2 diabetes and neurodegenerative diseases, however, both increase with age, meaning it is more common for older people (65+ years) with type 2 diabetes to get diagnosed with vascular dementia or AD.
Data suggests that people with diabetes have a 73% increase in the risk of developing any type of dementia and 56% increase in the risk of developing AD compared to people who do not have diabetes. This makes diabetes one of the strongest risk factors for getting dementia aside from aging. Health measures like A1C, cholesterol, high blood pressure(or hypertension), and eGFR are negatively impacted by diabetes and may also be associated with cognitive performance and neurodegenerative diseases.
- In the ACCORD-MIND trial, the largest and most rigorous study on diabetes and the brain to date, higher A1C levels were associated with lower cognitive function in people with diabetes. Similarly, another study found that the risk for dementia increased as a person’s A1C level increased, regardless of whether or not the person had type 2 diabetes.
- A recent analysis of over 100 studies found that higher levels of LDL cholesterol (known as “bad cholesterol”) was an independent risk factor for the development of AD.
- High blood pressure in middle-aged people has been linked to future cognitive decline and dementia, and in particular, vascular dementia. This may be due to high blood pressure in the brain causing damage to blood vessels, such as small blockages and bleeding.
- In a study on kidney health and dementia recently published recently, researchers found that lower rates of kidney filtration (as measured by eGFR) were associated with higher risk of onset of both vascular dementia and AD.
What about Parkinson’s Disease?
Parkinson’s Disease (PD) is another neurodegenerative disease associated with aging. In PD, the cells in your brain deteriorate and begins to affect a person’s ability to perform daily activities associated with movement. Symptoms can include tremors (rhythmic shaking), muscle stiffness and rigidity, and PD can even slow your movement in a process called bradykinesia. It can also lead to other symptoms not associated with movement such as disrupting sleep, constipation, anxiety, depression, and fatigue.
As with other neurodegenerative diseases, research has been conducted to identify if there is a link between diabetes and PD. In particular, one study from 2018 showed an association between the two conditions. The researchers looked at the English National Hospital Episode Statistics and Mortality Data from 1999-2011 and divided the data into two cohorts, those with type 2 diabetes (2,017,115 people) at the time of hospital admission and those without (6,173,208 people). It was found that those with diabetes had a 30% higher chance of developing PD than those without, and the younger a person was with diagnosed type 2 diabetes, the more likely their chance of developing PD.
Though researchers do not yet understand the exact way that diabetes and PD are related, they do have a few hypotheses. Namely, there is the chance that certain genetic abnormalities that lead to diabetes may also lead to PD; even if one of these conditions does not directly cause the other, people who have one may be more likely to also have the other. In addition, when diabetes and PD coexist in a person, they may create a more hostile environment in the brain, leading the neurodegenerative processes underway in PD to speed up and be more severe.
What are strategies to reduce the risk of developing a neurodegenerative disease?
There is evidence that leading a healthy lifestyle can reduce your risk of developing diabetes-related complications like dementia or PD. For example, heart attacks and stroke can increase the risk of developing vascular dementia; therefore, lifestyle modifications that help you maintain an ideal blood pressure and levels of cholesterol for your age and health status are important. This can be accomplished by exercising regularly and consuming a diet low in saturated fat, salt, and sugar.
Below are some other tips for improving brain health, which can go a long way in reducing the risk of neurodegenerative diseases like AD. The good news is that many of these strategies are also recommended for managing diabetes.
- Take control of your blood glucose levels by aiming for a greater time-in-range (TIR). To learn more about time-in-range goals, click here.
- Smoking is associated with higher rates of dementia. In a recent review, smokers were 40% more likely to develop AD than non-smokers. Given that people with diabetes are at an increased risk of developing dementia, smoking is likely to increase this risk further. If you smoke or experience nicotine addiction, talk to your healthcare professional about a plan to quit or cut back.
- Keep blood pressure at the target discussed with your health care provider (which might be 130/80 mmHg or less, if you are at high risk of cardiovascular disease) by exercising regularly and eating a diet low in salt (aim for less than 2,300 mg of sodium each day)
- Take your diabetes medications consistently and as directed by your healthcare team. Some early evidence shows that certain diabetes drugs, like GLP-1 receptor agonists, may be beneficial for brain health. In fact, exenatide, a GLP-1 receptor agonist, is currently in clinical trials for treating PD.
- A very active area of research focuses on the dementia-preventing effects of having an active and stimulating mental life and rich social networks. Working to maintain an active and socially rich lifestyle could help prevent some of the effects of diabetes on dementia risk.
If you are 65 years of age or older and have memory concerns or other cognitive complaints (i.e., brain fog, depression, personality change), talk to your healthcare provider about getting a cognitive assessment. Learn more here.
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.
The United States has fallen behind other countries in the effort to make pancreatic islet cell transplants available for patients with type 1 diabetes. As the technique grows in popularity through much of the developed world, in America innovation has come to a standstill.
Islet transplantation is an advanced treatment for type 1 diabetes. Briefly, doctors take a donor’s islets of Langerhans (the clusters of cells in the pancreas that contain the insulin-producing beta cells) and inject them into patients with diabetes, typically into the liver. When successful, patients can discontinue insulin use altogether, or greatly reduce it. Some transplant recipients have remained free of insulin therapy for many years following the procedure, with only minor side effects, although most patients require some insulin therapy at five years post-transplant.
Islet cells are harvested from the pancreas of a deceased organ donor, and immunosuppressive drugs are required to prevent rejection by the recipient’s immune system. These donor cells are scarce, and while there are many ongoing attempts to find other sources of usable islet cells (such as the use of pluripotent stem cells or even genetically engineered pigs), the procedure is not expected to become a mainstream treatment in the foreseeable future. But for patients with a dire need—for example, those with extreme glucose management challenges, hypoglycemia unawareness, or advanced kidney disease—islet transplantation can be a lifesaver.
Unfortunately, in the United States, the procedure has been “effectively halted,” according to an official report on the American Diabetes Association’s recent Scientific Sessions conference. While the technique was largely investigated and defined by scientists working in the US, it has never become available to the general public, and there is little hope that it will become available any time soon. Meanwhile, some medical centers in Canada, Australia, Europe, and Asia are now performing the technique routinely.
Dr. Camillio Ricordi, a leading researcher on the treatment with the University of Miami, blamed the issue on “outdated regulation” from the FDA. Because of a quirk in the National Organ Transplant Act of 1983, subparts of organs (such as the islets of Langerhans) don’t count as organs and are not covered by the network of rules and programs governing organ transplantation. Instead, transplanted islet cells are regulated as if they were drugs. Treating the cells as pharmaceuticals subjects them to standards for precision and consistency that they cannot meet.
Phase 3 trials have already proved that islet cell transplantation can deliver impressive results, and do so safely. And yet, America’s leading experts have agreed that it is all but impossible for a research institution to apply for and secure full approval for the technique.
Around the world, other medical authorities have taken a more practical stance. This has also allowed insurers to pay for the procedure, just as they would any other organ transplant. Most of the countries that lead the world in islet transplantations have robust social healthcare systems.
But islet transplantation is still considered purely experimental in the United States, and today can only be performed under the auspices of an official clinical trial. While the ADA and other advocates have pushed for change, so far, the regulation still stands in the way.
As islet transplantation becomes more available across the globe, the treatment is going nowhere fast in the USA.
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.
Beer has a special place among the foods and beverages that are problematic for people with diabetes. Enjoy a few cans or pints and the carbohydrate content can push your blood sugar way up … just before the alcohol brings you back down with a thud. While there are lower-carb beers available, it’s mostly “lite” megabrews, the type of stuff that the beer lover might find thin and tasteless.
As exciting as the explosion of the craft beer industry has been, those delicious, lovingly-made microbrews can be even more trouble. The more flavorful the beer, the higher the carbohydrate count is likely to be. And the smaller the brewery, the less likely you’ll have any idea how many carbs are in a bottle.
Beer lover Seán Deeney had never given much thought to beer’s sugar content until last spring, May 2020. That’s when, in the midst of the coronavirus pandemic, he was diagnosed with type 1 diabetes.
“I only figured that out because I’d just been diagnosed with Crohn’s disease a couple of months before, in February. So, it was not a great year.”
Seán, age 23, lives in Dublin. He’s just completed his university degree. And despite the incredible bad health luck, he’s bounced back pretty quickly.
His transition to life with diabetes was smooth in part because he was already fairly familiar with the disease: his brother James had also been diagnosed with type 1 diabetes, only a few years previous.
Actually, it was James that first alerted Seán to the likely meaning of his symptoms. James used his own blood sugar meter on his brother, and “it was way up, above 20 mmol/L [360 mg/dL].” By the time Seán went into the hospital, he was in the beginnings of ketoacidosis.
“But it wasn’t even too bad. I kind of had a general idea of all the stuff you have to do, how you take insulin, how you check your blood sugars. And it was helpful to have someone I could ask all the time.”
The two had already been collaborating on homebrewed beers, and with each now sharing notes on diabetes management, they were bound to start talking about diabetes-friendly beer.
“My brother has been brewing his own beer for years, and he worked in a brewery as well, Carlingford Brewing Co. We’ve made all sorts of types of beers. Basically anything you can think of, we’ve at least made an attempt at doing.”
“It was only a few months ago that I started really liking these brut beers. It’s a really dry style of beer, so it isn’t very sweet, and I’d wanted to do one for a while, so we looked up how you actually go about doing them. But we didn’t know before we looked it up that there was almost no sugar in them.”
“It turns out it’s basically similar to a normal beer, except you put in glucoamylase, an enzyme that breaks down the complex sugars into more basic sugars.”
“Normally, the reason that the beers have sugar in them – which is what will mess with your blood sugar levels – is that there are unfermentable sugars that remain in the beer, sugars that the yeast isn’t able to convert into alcohol. It’s just a byproduct of how you make it. But this enzyme glucoamylase actually breaks down these unfermentable sugars and makes them into fermentable sugars, so the yeast can convert all of the sugar into alcohol, and there will be no sugar left in the beer at all.
“We were looking at this and thinking, ‘If there’s no sugar left in the beer, surely it shouldn’t affect your glucose levels.’ So we tried one out, and it worked! You can go and drink eight pints of it and it won’t affect your blood sugars at all. Neither myself nor my brother has seen levels rising from drinking it.”
A warning – please don’t take this as an endorsement to drink eight pints of beer, which is probably a bad idea, diabetes or not. Seán (who is still in the honeymoon period) and James have never noticed their blood sugars drop after drinking beer, but your experience may significantly vary. It’s well-known that alcohol, which prevents the liver from releasing glucose the way it normally does, can cause blood sugar drops and dangerous hypoglycemia, especially when taken in excess. I cautioned to Seán that his own experience might change over the years, too.
To be clear, Seán hasn’t had his beer scientifically analyzed or anything. He’s not a chemist. But he’s convinced that his brut homebrew has significantly less sugar than any other beer style he’s tried, if not absolutely zero. It’s been nothing but steady blood sugar lines for both brothers:
“We both have CGMs. He has the Dexcom, I have the Libre. You can really see the lines, and it just won’t go up at all.”
Brut beers are usually done in a clean, bitter, highly fizzy IPA style, almost like a beery champagne, but Seán has tried the glucoamylase in other recipes as well.
“Normally it’s only a pale ale or IPA that people put this enzyme into. But I really like German wheat beers. So I decided I’d try and make a wheat beer with this enzyme as well.”
“It did exactly what it was supposed to do. You end up with no sugar at the end, and a really tasty beer. So I’ve been doing it with a few others – a rye, and a Kolsch, and all the sugars completely ferment out.”
“We’ve had some fun in naming them as well. The first one, the IPA style, we call it Insulin, because it keeps the levels down. The wheat that I like to make we have now called Diawheaties.”
And his non-diabetic friends approve:
“Everyone seems to like it. They tend to be quite nice, easy-drinking beers. We wouldn’t make them just for the zero sugar if they were no good. They’re as good as the normal beers.”
“It’s really handy. It’s one less thing to worry about.”
This content originally appeared on Beyond Type 1. Republished with permission.
By Kayla Hui, MPH
In 2020, Ariel Lawrence, a diabetes advocate and creator of Just A Little Suga–a storytelling platform that centers people of color with diabetes–found out that she was pregnant. Although Lawrence was excited, she couldn’t help but feel anxious. As a Black woman living with type 1 diabetes, Lawrence worried about how the intersection of having diabetes and being a Black woman would impact her and her baby.
According to Christopher Nau, MD, a doctor of maternal fetal medicine based in Cleveland, Ohio, timely access to diabetes and maternal health care is crucial, especially for Black women who—due to multiple factors including systemic racism and implicit bias— are three times more likely to die from childbirth compared to white women in the U.S.
“Once I found out that I was pregnant, I was experiencing a lot of anxiety. And although I was working with the care team to make sure that my management was tighter and my blood sugars were in range, the reality was that there were moments where it wasn’t in range, there were high blood sugars, and sometimes, there were high blood sugars for extended periods of time,” Lawrence tells Beyond Type 1.
Lawrence’s blood sugar level concerns lingered since getting diagnosed with type 1 when she was in the tenth grade. “In college, there was a nurse who had said to me, type 1 diabetes and pregnancy don’t mix,” Lawrence recalls. “At that point in my diabetes journey, I remember struggling to get my A1c below a 7.2. So for the longest, there was this question of can I actually do what I need to sustain a healthy pregnancy while living with diabetes?”
According to research, Black women are four times more likely to receive zero to five prenatal care visits when compared with white women. In addition to receiving statistically lower levels of care, “Black women are less likely to get into care early in the first trimester, which is important specifically for someone who has diabetes,” Nau says.
One of the contributing factors to poor health outcomes for pregnant Black people is systemic racism. Compared to pregnant white people, pregnant Black people are more likely to experience unfair treatment and discrimination within the healthcare system, such as being spoken to disrespectfully by healthcare personnel, being ignored after expressing fears/concerns, and experiencing poor bedside manner.
In addition to systemic racism, implicit bias–attitudes and stereotypes of other groups that manifest in overt and intentional discrimination–hampers maternal health for Black pregnant people. Implicit bias can impact a medical professional’s judgement to provide treatment and care in a timely manner. It can also hinder patient and provider communication.
When racial biases are expressed in a condescending manner, it can decrease the likelihood that patients will feel valued or heard and providers will recommend treatment options for patients.
Research shows that implicit bias is directly correlated with lower quality of care. A 2012 study found that cesarean deliveries–deliveries that can lead to more negative health outcomes for the pregnant individual and baby, including maternal mortality–were more common among Black and Latina women than white women.
From 2007 to 2016, there were 40.8 pregnancy-related deaths for Black women per 100,000 live births, triple the mortality rate compared to white women, who had 12.7 pregnancy-related deaths per 100,000 live births.
“I’m concerned as a Black woman with my own health, and whether or not I’ll live to share the experience of my birth because there have been so many women who unfortunately have passed away,” Lawrence says.
When Black pregnant people with diabetes do not receive timely maternal and diabetes care, Nau says that their blood sugar levels can rise, increasing the risk of miscarriage and birth defects increases. “The risk can be as high as 20 to 25 percent in someone who’s very poorly controlled,” Nau explains.
As a result, fetuses can have birth defects, such as cardiac malformations. Poorly controlled diabetes may also result in increased risk for stillbirth, respiratory distress, and jaundice, Nau explains. He adds that babies are at risk of hypoglycemia, also known as low blood sugar, initially after delivery.
When pregnant people have consistently elevated blood glucose levels, it can also increase the chances of having a c-section. When a baby is delivered by a c-section, pregnant people may take longer to recover post childbirth.
Strength of a Medical and Health Support System
Aware of the maternal health outcomes for Black women, Lawrence hired a doula, which helped ease her anxiety surrounding pregnancy. “I was aware that when it came to Black maternal health outcomes, Black women are more likely to experience a C-section and have complications as a result,” Lawrence says. “To help minimize my anxiety, I decided to find a doula.” For Lawrence, having a doula meant having an advocate and support system.
According to DONA International, doulas offer physical, emotional, and partner support throughout the pregnancy, birth, and early postpartum period. Research shows that women who use a birth doula are less likely to have a c-section, use pain medication, need pitocin, and more likely to rate their childbirth experience positively.
During the birthing process, Lawrence’s doula liaised and communicated between Lawrence and medical professionals to ensure that Lawrence knew what the doctors were doing.
Coupled with a doula, Lawrence also leaned on her therapist for support. “I was afraid that something bad might happen. So, I had a therapist supporting me through that,” Lawrence says.
Improving Maternal Health Outcomes for Black Pregnant People With Diabetes
Alissa Erogbogbo, MD, medical director of operations at Hospitalist Group, says that there are opportunities to improve maternal health outcomes for Black pregnant people with diabetes through legislation. She says that an ideal bill would include postpartum follow up. “Whether it’s a nurse that they follow up with, a phone call to make sure they [pregnant people] are checking their blood sugars, there’s a lot of opportunity to really decrease the maternal mortality rate,” Erobogbo says.
In the U.S, the Medicaid program provides coverage for almost half of all births. Unfortunately, coverage only lasts 60 days postpartum. States have the option to extend Medicaid postpartum coverage for 12 months by applying for a section 1115 waiver. In April 2021, Illinois became the first state to extend Medicaid coverage for up to one full year after pregnancy. Joining Illinois’s postpartum Medicaid expansion are Missouri and Georgia.
However, there is still a long way to go, according to Erogbogbo. A handful of states including Colorado, Texas, Wisconsin, and Florida have enacted legislation to seek federal approval of their 1115 waiver, but the majority of states have taken no direction.
“Most states need to follow that bandwagon. Continuity of care helps you understand how your health is progressing, what preventative measures that you can take,” Erogbogbo tells Beyond Type 1.
While postpartum coverage is available in some states, Medicaid program expansion is far from sufficient. To build on current maternal health efforts, Congresswoman Alma Adams, Senator Cory Booker, and members of the Black Maternal Health Caucus introduced the Black Maternal Health Momnibus Act of 2021, a bill that would not only expand postpartum coverage for up to 24 months postpartum under the Special Supplemental Nutrition Program for Woman, Infants, and Children, but improve maternal health among racial and ethnic groups by addressing the social determinants of health.
If the Momnibus Act is passed, it would implement several actions such as providing funding to community-based organizations that are working to improve the maternal health space, diversifying the perinatal workforce to ensure that pregnant people are receiving culturally sensitive maternity care, improving data collection to better understand the causes of maternal health outcomes, and promoting innovative payment models to incentivize high-quality maternal health care and non-clinical perinatal support.
The bill was first introduced to the house on February 8, 2021 and was referred to the subcommittee on Crime, Terrorism, and Homeland Security on April 23, 2021. Since the bill’s inception, it has been endorsed by over 240 organizations.
The aforementioned policies are not an end-all solution, but serve as a start to addressing disparate health outcomes for Black pregnant people on the policy level. People can also advocate to improve Black maternal and health conditions by:
- Reaching out to the U.S. House of Representatives or U.S. Senators to voice concerns about Black maternal health or to voice support for the Momnibus Act
- Spreading social media awareness using already-available social media posts
- Following the Black Maternal Health Caucus on Twitter to stay informed
- National Birth Equity Collaborative
- Just A Little Suga’
- Diabetes and Pregnancy (CDC)
- Gestational Diabetes (Mayo Clinic)
- Pregnancy If You Have Diabetes (NIH)
This content originally appeared on diaTribe. Republished with permission.
By: Amber Clour
It may not be possible to anticipate every emergency, but for those with diabetes, it’s especially important to prepare for the unexpected. Hear how people with diabetes survived natural disasters, what they learned about planning ahead, and the advice they have for others.
Susan Hoagland, 70, who lives with type 1 diabetes, worked up until the day before Hurricane Katrina hit New Orleans in August 2005. Then like most people in the path of the hurricane, she headed out of town.
“In my mind, I was only heading to Austin [Texas] in anticipation of Katrina for a long weekend and didn’t pack all of my medications and supplies,” she said. Hoagland didn’t have a prepared container of supplies, including medications, food, hypo treatments, glucose monitoring devices packed and ready to go – something she would later regret.
Dealing with diabetes management every day takes considerable effort, and even when we’re on our A-game, things can at times get overlooked. It’s important to anticipate what might be needed in the case of a natural disaster, so that the fight or flight response due to an adrenaline rush doesn’t get the better or you and your health.
Growing up in Tornado Alley (Oklahoma) means long ago I developed a game plan for emergencies, so that an impending tornado, and the need to leave my home, would not imperil my diabetes management.
I wanted to reach out to others who have been in this situation, and to Carol Atkinson, an expert at the Diabetes Disaster Response Coalition, to hear more about surviving natural disasters and the tips and tricks they have found helpful. The bottom line is that everyone should be prepared to leave their home in case of an emergency with everything they need to make it through the crisis. Being prepared and having everything ready to grab and go means when a natural disaster strikes, you don’t have to face making layers of decisions, delay your departure, or augment your flight or fight response.
To be prepared, think about all the supplies you will need:
- Medications: Put a supply of all your medications in separate containers to last a week or longer, and think about how to keep insulin at the right temperature, such as an instant cool pack.
- Injection supplies: syringes, your insulin pens, extra pump supplies
- Food, a source of glucose, water to stay hydrated: a supply of glucose tabs works really well, some bottles of water, and some food that doesn’t spoil
- Monitoring supplies – like my CGM, a backup blood glucose meter and strips, and a way to measure ketones
- Copies of prescriptions
- An emergency contact list contact in case of an emergency
- Cellphone charger
- Batteries, an ID, and cash
The morning before Hurricane Katrina hit the banks of New Orleans, Hoagland was in a panic – not a good mindset when it comes to making sure she would have everything she would need to survive the catastrophic storm. As she gathered her things in a hurry, she realized she had nowhere to go. She called her son and daughter-in-law, who called friends until they found a place in Austin where she could stay. Despite the fact that it takes eight hours to drive to Austin from New Orleans, she left unprepared.
“I drove straight for two days because you couldn’t stop; there was nowhere to stay,” she recalled. “The rest areas were packed and I had to keep moving. I was fearful for my life and my animals – we had to make it to Austin. It was a nightmare and I wasn’t prepared. In retrospect, I was in survival mode, fueled by adrenaline and weathering high blood sugars.”
One of the many things we might forget as people living with diabetes is how much of an effect adrenaline and stress can have on our blood sugar. It is in our best interest to take the necessary precautions well in advance to lessen the burden on our health when disaster strikes. That includes having the technology you need to test your blood sugar, the medications you need to manage your glucose or other conditions, and back-up emergency supplies like food, batteries, and water.
I reached out to Atkinson, co-chair of the Diabetes Disaster Response Coalition (of which diaTribe is a member) and director of Insulin for Life USA, to find out what advice she has for how to survive the unexpected. She emphasized the importance of preparedness, especially for people living with a chronic illness.
“Always be prepared by building your preparedness kit well before disaster hits and make it customizable to your needs,” Atkinson said. “Be sure to check your kit every quarter to make sure nothing has expired. Other things to consider when packing your preparedness kit – a laminated copy of your prescriptions, photo identification, and cash.”
Atkinson suggests leaving the checklist to the experts so you don’t have to worry about making a list yourself. The Diabetes Disaster Resource Coalition makes it easy by providing a downloadable preparedness plan checklist. And you can find even more resources from the coalition here.
In 2016, Cynthia Celt and her husband, Mike, set off on an adventure in Costa Rica. After a four hour van ride in the middle of the night in heavy rain, the road was almost a foot deep with mud, and they found themselves stuck in a landslide.
Rescue trucks soon arrived to extract them from the sea of mud. Before Celt knew what was happening, her bag containing all her diabetes supplies was placed into a truck and took off into the dark hills of the unknown country without her. She rode in the back of another truck back to the now powerless resort safely, but without her bag.
“My phone was dead, so I didn’t have my Dexcom readings,” Celt said. “My meter, chargers, and cables were in the back of another truck, which didn’t matter because I had no electricity to charge them. I had little bits of all my diabetes supplies with me, but not nearly enough to sustain me for the entire trip. I was scared to dose as I couldn’t check and had just a candy or two that remained in my purse to treat possible lows.”
Not having access to your diabetes supplies is scary, but Celt said she learned some valuable lessons from this unfortunate experience, including:
- Always have a blood glucose meter and plenty of strips. “I had somehow failed to bring a meter,” she said. “Lesson learned 100 times over. I now carry a meter and more strips than I will need with me in my purse, even if only headed out for just a few hours!” Make sure that you have all the diabetes supplies you need to manage high or low blood sugar – including your medications and insulin, emergency glucagon, glucose tablets or small snacks, and a blood ketone meter.
- Having a cell phone battery charger can come in handy. “What saved me when I did get our bags was a 72-hour backup phone charger,” she said. “It allowed me to finally see my blood glucose digits in real time again!” Make sure you have emergency backup batteries and chargers.
- Research what services will be available to you in the event of an emergency (hospitals, pharmacies, stores to pick up low supplies, etc.). Though this was not her first diabetes travel fumble, being stuck in the dark in a landslide rattled her enough that she now packs back-up diabetes supplies for her back-ups!
- Don’t be afraid to cause a “fuss” or make a scene if it means having access to the things you need to stay alive. “I should have held onto my bag and helped them understand my life depends on these supplies,” she said. “I was afraid and embarrassed to make an already challenging situation difficult.”
Atkinson stressed that same point, “When evacuating or during any emergency situation,” she said, “define yourself as an insulin dependent person living with diabetes, if you are one. Speak up for yourself.”
In April 2021, Celt was thrown into yet another natural disaster scenario – one that that she had no way to prepare for.
She and her family were camping with friends in the sand dunes not far from their home in Boise, Idaho. They’re fairly seasoned campers, and this was supposed to be just a quick weekend getaway, nothing extreme as far as adventure goes.
She was cruising along in their kayak with her young daughter Madeline and her friend while her husband was in another boat fishing with the others.
“I began to feel the air change and heard sirens from a nearby air base,” Celt recalled. “I saw picnickers scrambling on the shore and then I looked up. What I saw was something I can hardly detail with words. The largest, most sky covering, thunderous sounding wall of sand was charging towards us. It was picking up trees and boats, tossing around bikes and pieces of campers on the land.”
Later they learned the storm had overturned semi-trucks and vehicles along the highway. It was what is known as a Haboob, a desert sandstorm common on the Arabian peninsula.
Thankfully before it hit, they were able to make it to shore. Celt grabbed the two small children and slung the dry bag carrying all her diabetes “gear” over her arm.
When out on the water all of her diabetes supplies are always stashed together in a single dry bag. That makes it easy for her to “grab and go”.
“I ran for the hopeful safety of our SUV perched on a shore ridge,” she said. “We piled in and watched as it thundered toward us.”
After several hours they were able to drive to their camper, only to find it ravaged by the storm. The winds did not let up for three days, and they slept in their SUV overnight. However, this time they were a bit more prepared. Celt said, “We always keep an emergency/hidden stash of low supplies, food, and water in the vehicle when camping.”
This scenario was a stark reminder of how quickly disaster can hit. Celt’s words of advice: “It’s impossible to be prepared at all times when living with diabetes. But having your supplies organized, and easy to access and grab on the way out, is incredibly valuable.”
In a different kind of emergency earlier this year, when the pandemic was raging, I packed my bags and relocated to San Antonio, Texas. My casita was the perfect isolation get away, until disaster struck. An unexpected cold front lingered in areas of central Texas where the people and the infrastructure were not equipped to handle below zero temperatures and power outages.
I lost power for days, but fortunately had a gas stove and access to a wood burning fireplace. I also was able to connect with neighbors, and we pooled our resources.
I didn’t fear freezing to death, but I worried my insulin might freeze. However, in the haze of stress I was feeling, I reminded myself the refrigerator wouldn’t get colder than it already was – and the insulation would keep my insulin from freezing. It wasn’t rocket science, but it was clear that my decision fatigue was in full swing. In a situation like this, when freezing your insulin is of great concern, diaTribe’s scientific and medical advisor Dr. Francine Kaufman suggested that you take out a fresh bottle of the insulin you need (basal, prandial, or both) and keep it either in a pocket or a small pack next to your skin. This way you know that you’ll have insulin that won’t freeze.
Stress, both mental and physical, can make diabetes management a nightmare. Keeping my cell phone charged for my CGM data was crucial. Luckily, my Subaru had plenty of gas, so once a day I would sit in the car parked on the street just outside my casita, crank up the heat and charge my phone.
But just when I thought we could get back to normal, our area was notified the water was not safe to drink. I’ve never been in a situation like this and was thankful to have the gas stove to boil water when needed. Not an ideal situation, but I managed.
This entire situation made me think deeply about what’s important when faced with a natural disaster and what things I can realistically do to prepare in advance. Here’s my checklist:
- HAVE THE EMERGENCY KIT READY TO GO way before an emergency, with a list of all the supplies already in it and what you need to add before you go – like your insulin
- If you are going to shelter in place, prepare by stocking up on your diabetes supplies and things like non-perishable food, water, batteries, toilet paper, etc., when your budget allows.
- STAY CALM. It’s okay to be scared and worried, but having your wits about you will make it easier to focus on the items you need to pack.
- It’s okay to ask for help whether it be for emotional support or supplies. Don’t be embarrassed to contact friends, family, neighbors, local shelters, food pantries, churches, and patient assistance programs. You can also always go to an urgent care facility or hospital if needed. Don’t hesitate in these situations and do what is best for your health and safety.
After some trial and error, I developed a system that makes chaotic situations easier for me to manage. I try to ask myself in these situations, what will I need to survive for at least the next 30 days? Below is a checklist that helps me stay focused.
- First, I inventory my supplies so I know what I have and where it is located.
- Then I locate a waterproof tub or bag (purchased well in advance) that I can pack my supplies into.
- Finally, I start packing my supplies, including:
- Insulin in a refrigerated case – this is the very last thing I throw in the tub when I am headed to an emergency shelter
- Syringes for my medication
- A copy of all my prescriptions
- Blood glucose meter and plenty of test strips
- Any CGM supplies I might need including sensors, applicators, and my phone
- Insulin pump supplies
- Low blood sugar snacks and glucose tablets
- Other medications I might need (such as an inhaler, blood pressure pills, glucagon pen, etc.)
- My driver’s license, passport, cash, and credit cards
- My diabetes bracelet or disability jewelry
- Emergency supplies like a flashlight
No one wants to prepare for a natural disaster, but if you take the time now to make sure you have everything you need, you won’t throw your diabetes under the bus when catastrophe strikes.
Below are a few helpful sites to make your natural disaster preparation easy:
- Diabetes Disaster Response Coalition website
- Patient Preparedness Plan, Diabetes Disaster Response Coalition
- Diabetes Disaster Preparedness Plan, Beyond Type 1
- Tips for Emergency Preparedness, ADA
- My Diabetes Emergency Plan, AACE
And check out some other articles you might want to visit for tips and tricks:
- Hurricane Danger: A Diabetes UPDATE on How to Get What You Need and Give What You Can
- Preparing for Natural Disasters: Strategies for People with Diabetes
- When Hurricane Harvey Arrived, They Kept the Diabetes Community Afloat
Amber Clour was born and raised in Norman, Oklahoma. Twenty-one days after her eighth birthday, she was rushed to Children’s Hospital where she spent two weeks learning how to live her new life with type 1 diabetes.
Since then, her life has been filled pursuing her passion for art, advocacy, non-profit ventures and travel. In 2015 she stepped down as Executive Director for a community artspace and gallery she founded to co-found DiabetesDailyGrind.com and the Real Life Diabetes Podcast. Amber’s – no filter – approach to sharing an honest look into her daily life resonates with many in the diabetes community. She hopes her story and those of podcast guests remind ALL people living diabetes – you are NOT alone.
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.
It was 2020 – right around the dawn of the pandemic in the United States – when Charlotte Drury’s athletic abilities mysteriously began to decline.
“I wasn’t building any muscle, I wasn’t getting any better. And I was training more and more because I could feel myself regressing. My skills just got worse and worse.”
Charlotte, now 25, is a trampoline gymnast. She’s a former world champion and knows her body well. She knew something was wrong.
“Am I just past my prime? Am I not trying hard enough?”
“Looking back, it’s nice to have an explanation that it wasn’t my fault.”
It wasn’t her fault. Charlotte Drury was about to find out that she had type 1 diabetes.
The Lost Year
If gymnastics fans already know Charlotte Drury for one thing, it’s for an earlier and unrelated health catastrophe. In 2016, with the Rio Olympics about to take place, Charlotte was considered America’s best female trampoline gymnast. In previous years she had won individual gold at both the World Cup and the USA Gymnastics Championships. But her Olympics dream was crushed when she broke her ankle during the final qualifying event of the season.
The tragic injury could have ended her competitive career, but Charlotte decided to give the Olympics another shot. She’s fearless—you sort of have to be to make a living flying 30 feet into the air while flipping and twisting.
“I was on top of my game when the pandemic hit. But suddenly, I was all by myself, and training started to get really, really hard. At first, I just chalked it up to training alone in the middle of a pandemic.”
“Later, I was struggling with some depression. I told myself, you’re probably just fatigued from the depression, it’s in your head, you just have to push through.”
It wasn’t in her head. Charlotte was suffering from acute hyperglycemia due to her undiagnosed type 1 diabetes. The critical lack of insulin in her body meant that she wasn’t getting energy from the food she ate. Insulin is a growth hormone and promotes fat storage; without it, our muscles falter, our bodies wither, and the calories we desperately need are flushed uselessly out with our urine.
Later she would recognize that there were other red flags – a bizarrely increased thirst, a new tendency to pee in the middle of the night. But as her body failed her in real-time, she found reasons to disbelieve what was happening.
“I basically gaslit myself into believing it was all in my head for almost a year.”
In December 2020, Charlotte visited her doctor to discuss her depression, which she mistakenly thought was at the root of her troubles. Shockingly, she was still four months away from understanding what was plaguing her. Finally, the mounting setbacks just became too much to ignore.
“In April , we had a national team training camp. I knew how hard I’d been working, and I was looking at everyone around me and realized that there was something wrong with me. There’s absolutely no way I could be this far behind. Something was wrong.”
“There’s a lot of power needed in this sport. I could barely make my triples anymore, and I’ve been making those skills since I was 16.”
As soon as Charlotte got home from the camp, she called her doctor, who ordered up bloodwork. Soon thereafter the doctor called her and told her that she was experiencing a medical emergency.
“She said, ‘You have type 1 diabetes. You need to come in right now.’”
Charlotte’s A1c was 14.6%, and her blood glucose over 500 mg/dL. Despite the length of time it took to get a proper diagnosis, she can probably still thank her uncommon awareness of her own physical condition for avoiding diabetic ketoacidosis. Had she not been so in tune with her physical fitness, as professional athletes need to be, who knows how long it would have taken to make that call to the doctor?
Now at last she had an explanation, but a bittersweet one—her life had changed unalterably. And, oh yeah, if she wanted a chance to join the competition she’d spend her entire life preparing for, she had just a few months to figure everything out.
Charlotte Drury Bounces Back
For the first two weeks, she was “miserable.”
“Mentally I was just done. I thought there was no way I could go to the Olympics. There’s no way I can figure out how to manage this, get healthy and strong enough, and train in three months. It was really, really overwhelming.”
At first Charlotte was only taking basal insulin, so “I was still having these crazy mealtime spikes.” It took days of advocacy by her diabetes educator to get the prescription for fast-acting mealtime insulin that she so clearly needed. And she was still coming to grips with the enormity of her diagnosis.
“When I first was told that I had to start mealtime insulin, I just broke down and started crying. I have to do what every time I eat?
But once Charlotte started using rapid mealtime insulin, “it was an incredible turnaround.”
“After two weeks of getting my blood sugars back in range, I literally felt like a different person. A completely different person.”
Her training improved overnight. She regained energy and mental clarity. Her muscles came back to life.
“I had no idea how bad I was feeling until I started to feel good. And now I will do anything to feel this good. I will do the injections, I will monitor, I will wear whatever devices you want – anything to feel good again.”
And suddenly, the Olympics didn’t seem so far-fetched after all.
Trials and Tribulations
Charlotte’s comeback was never going to be easy.
In a mini-documentary filmed prior to her diagnosis—highly recommended for a good look at how insane trampoline gymnastics really is—Charlotte says that repeatedly bouncing as high as 30 feet into the air feels like riding a rollercoaster. The blood sugar rollercoaster was not what she had in mind.
Consider, for a moment, just how dangerous hypoglycemia could be in the life of a trampoline gymnast. Imagine first perceiving a severe blood sugar low while you’re soaring through the air, and what might happen when you land with anything less than precise technique.
The first time Charlotte got hit with a blood sugar low on the trampoline, “I immediately started crying and hyperventilating. ‘Something’s wrong, get me off the equipment!’”
Now imagine developing a comprehensive eating and insulin dosing regimen that allows you to maximize your athletic potential on the global stage, and doing it in a matter of weeks.
“I’m still in the days of figuring it out.”
Charlotte told me that trampoline training is more or less like the most difficult HIIT or CrossFit exercise you’ve ever imagined. 20 seconds of pure max effort, a minute or two of rest, and repeat. For two hours. Those intense workouts are usually preceded by some 30 minutes of vigorous warmup work, cardio that can drive blood sugar down before the stress and effort of the routine drives it back up. Good luck preparing properly for all that.
“It’s a lot of moving parts.”
Life still throws up curveballs. Just when Charlotte thought she had a system down, a trip to Italy for an important round of Olympic trials taught her just how powerfully unanticipated variables can impact diabetes management.
“Everything I knew went out the window.”
During her first practice in Italy, her blood sugar dropped from 100 mg/dL to 48 within 5 minutes. “It felt like I got hit by a wall. It took me three juiceboxes to get back to 70.” That hypo took a full 30 minutes to recover from, 30 minutes of vital practice time on competition equipment that she lost and couldn’t get back.
A Gold Medal Teammate
One of her “saving graces” has been her roommate, the Olympic gold medalist Laurie Hernandez, who has had close family members with insulin-treated type 2 diabetes. Actually, it was Laurie who first told me Charlotte’s story.
“Laurie came in clutch. She came to my doctor’s appointment, she came to my endo appointment, she was taking notes, she’s my Dexcom pal and when I go low in the night she opens a juicebox and brings it to me.”
“There’s a lot of things that I’m very grateful for. When it rains, it pours, but I’ve got a lot of friends and support to help hold an umbrella up.”
The 2021 Olympics
When I first talked to Charlotte, she had completed two of the three trial events that would determine which Americans would make the Olympic team. Despite her remarkable turnaround since beginning insulin treatment, she still wasn’t yet performing at her peak, and her scores reflected that. To make the Olympics, she told me, “I’m gonna have to pull out something pretty amazing in the last trial.”
She almost did exactly that. At the USA Gymnastics Championships in late June, Charlotte nailed her routine and placed second. It didn’t get her the coveted single spot as an Olympic competitor, but was good enough to get her named the alternate on the team. In the following days, she was downgraded to second alternate after a controversial decision to let another teammate re-try her routine. So, Charlotte will be going to Tokyo as a member of the Olympic team, but with an exceedingly low chance of actually competing.
There’s no question in Charlotte Drury’s mind that if she hadn’t developed type 1 diabetes, she’d be competing in Tokyo. But an entire year of frustrating and ineffective practice was just too much to overcome.
Charlotte hasn’t ruled out another run on the Olympics. The Paris games are only three years away, after all, and her strong final performance has her optimistic about her potential to earn the spot that she might have already won twice were it not for medical disaster. She told me that she’d like to see what she’s capable of after she regains her peak physical condition and combines it with the hard-earned wisdom of the last five difficult years.
Meanwhile, she’s strategizing how to get started on her dream career, a good one for an uncommonly sensitive and fearless young woman. Charlotte wants to be a photojournalist, documenting global suffering and conflict, and is ready to throw herself into war zones to do it.
No matter what comes next, she’s determined that her new condition won’t get in her way: “This won’t stop me.”
“I want to be proud of how far I’ve come so quickly, but at the same time, I didn’t really have a choice, just like anyone with type 1.”
All photos courtesy of Charlotte Drury.