Diabetes affects more than 29 million Americans and is the 7th leading cause of death in the US today. While Diabetes Research Connection fights to find a cure for type 1 diabetes every month, we give an extra push during the month of November for National Diabetes Month. There are many ways you can contribute during National Diabetes Month, including our Double Your Dollars campaign, shopping with AmazonSmile, volunteering at a hospital or research center or participating in a walk/run benefiting diabetes. Read below for more details on how you can get involved.
Make Your Donation Count Twice As Much With Double Your Dollars
In honor of National Diabetes Month, DRC is matching every dollar donated to the General Fund (up to $50,000) between now and November 30 through our Double Your Dollars campaign. It is the perfect time to make a difference in the T1D community by donating to our campaign and making your charitable act go twice as far.
Every donation helps early-career scientists launch their ideas and allows 100% of funds directed for T1D research to go directly to the researcher’s laboratory. Donations are critical for us to operate our innovative platform, even though DRC’s operating costs are kept less than 10% of gross revenue.
Make a Difference While Shopping on Amazon
November is the month where most of us start our holiday shopping- the excitement of the good deals of Black Friday and Cyber Monday are almost too much to bear. If the crowds and late hours of Black Friday intimidate and overwhelm you and Cyber Monday is more your speed, try using AmazonSmile to accommodate all your holiday shopping needs. AmazonSmile is Amazon’s nonprofit charitable support arm and allows the shopper to choose from a variety of charities who will benefit monetarily from their purchases, without any additional cost to the shopper.
To honor National Diabetes Month, you can do your holiday shopping through AmazonSmile and select Diabetes Research Connection as your charity of choice so that a portion of your purchase goes to finding a cure for those with T1D. Visit smile.amazon.com to get started.
Participate in a Walk or Run
A great way to get involved with the fight to find a cure for T1D and honor National Diabetes Month is to participate in a walk/run benefiting diabetes. Not only would it be benefitting a great cause, but doing a walk/run is a great way to be active with a big group of people. There are many options available depending on what area you live, so it helps to do some research to find one that suits your fitness level needs.
Volunteer at a Hospital or Research Center
It’s very easy to find places that need volunteers, such as hospitals or research centers. Not only is it a good time of year to donate your time because of the holiday giving season, but also because of National Diabetes Month- you can opt for a research center or a hospital that specializes in T1D. This is the perfect way to give back for those who can’t donate money.
For more information on how you can get involved in the fight to find a cure for T1D, and to receive frequent updates about DRC, sign up for our newsletter!
The air is cool and crisp, the leaves are beginning to turn and we’re already halfway into October – fall is in full force!
With fall comes many great seasonal foods and treats – pumpkin pies, apple cider and halloween candy, to name a few. However, we know that with so many delicious treats available, it can be hard to choose the right foods to help manage your T1D, or to decide what to offer to your friends or family member with T1D.
Below we’ve rounded up our favorite diabetes-friendly treats and recipes for this season.
No Tricks, Just Treats for Those with T1D
Struggling to decide what to pass out to the adorable little ghosts and goblins who will be knocking on your door at the end of the month? T1D-friendly candies are a great option – in addition to being ideal for your diabetic neighbors, they tend to be healthier for kids in general, something every parent will appreciate.
Fun-sized candy bars generally contain less sugar. Consider offering Kit Kat bars – these wafer-based chocolates have only 7 g sugar, 70 calories, 4 g fat and 9 g carb.
Almond M&Ms are a healthier choice than regular M&Ms, as the heart-healthy nut displaces some of the sugar-dense chocolate. One snack size bag will only set you back 10 g sugar, 110 calories, 6 g fat, 2 g saturated fat and 12 g carb.
Dark Chocolate contains heart-healthy antioxidants, but some dark chocolates are better than others. The nuggets of Hershey’s Special Dark with Almonds Nuggets contains only 12 g sugar, 150 calories and 15 g carb.
Strawberry Twizzler Twists are the perfect combination of chewy, fruity and sweet. One twist contains 5 g sugar, 40 calories, 0 g fat and 9 g carb.
Jolly Ranchers are a great choice as far as hard candies go. Three pieces of these long-lasting sweet and sour treats will set you back 11 g sugar, 70 calories and 17 g carb.
Chocolate and Peanut Butter Treats are a classic at Halloween and year-round. Sugar-Free Reese’s Peanut Butter Cups are a great option, as four treats contain 145 calories, 22 g carb and no sugar.
Delicious Fall Treats for Those With T1D and Those Without
As you’re gearing up for your next bonfire, football watch party, halloween party or other fall-themed gathering, consider bringing a delicious, diabetes-friendly fall dish.
If you’re responsible for bringing finger-foods, consider these fresh, healthy Touchdown Tortilla Wraps.
[su_spoiler title=”View recipe for Touchdown Tortilla Wraps”]
Ingredients
3 7- or 8-inch flour tortillas
1/2 8-ounce tub light cream cheese with chive and onion or roasted garlic
18 – 24 fresh basil leaves
1/2 7-ounce jar roasted red sweet peppers, well drained and cut into 1/4-inch-wide strips
4 ounces thinly sliced cooked roast beef, ham, and/or turkey
1 tablespoon low-fat mayonnaise dressing or light salad dressing
Directions
Spread each tortilla with one-third of the cream cheese. Cover cream cheese with a layer of basil leaves, leaving a 1-inch border. Arrange roasted red peppers on basil leaves. Top with sliced meat. Divide mayonnaise among tortillas, spreading over meat.
Roll up each tortilla tightly into a spiral. Cut each tortilla roll in half crosswise. Wrap in plastic wrap; chill for up to 4 hours. Tote in an insulated cooler with ice packs. Makes 6 servings.
Nutrition Facts Per Serving:
Servings Per Recipe: 6
Per Serving: 135 cal., 6 g total fat (3 g sat. fat), 24 mg chol., 186 mg sodium, 10 g carb. (1 g fiber, 2 g sugars), 8 g pro. Diabetic Exchanges
Prepare graham cracker crust (see below); set aside. In a small saucepan, stir together gelatin and the water; let stand for 5 minutes to soften. Cook and stir over low heat until gelatin dissolves; set aside to cool slightly.
In a large bowl, beat cream cheese with an electric mixer on medium speed until smooth. Add pumpkin, sugar, the 1 teaspoon cinnamon, and the gelatin mixture; beat until well mixed. Fold in the three-quarters container of dessert topping. Spread mixture into crust in springform pan. Cover and refrigerate for 4 to 24 hours or until set.
Using a thin metal spatula or table knife, loosen the cheesecake from the side of the springform pan. If desired, use a wide spatula to remove cheesecake from bottom of pan and place on a serving plate. Cut into wedges to serve. If desired, top with additional whipped topping and garnish with additional cinnamon, chopped pecans, and/or pomegranate seeds**. Makes 14 servings.
Tip
*Sugar Substitutes: Choose from Splenda® Granular, Equal® Spoonful or packets, or Sweet ‘N Low® bulk or packets. Follow package directions to use product amount equivalent to 2 tablespoons sugar for both crust and filling.
*Sugar Substitutes: PER SERVING WITH SUBSTITUTE: same as above, except 136 cal., 11 g carb.
**Test Kitchen Tip: To remove the seeds from a pomegranate, cut the pomegranate in half through the skin. Remove the peel and break the fruit into sections. Then separate the seeds from the membrane.
Tip: To toast nuts, spread in a shallow baking pan lined with parchment paper. Bake in a 350 degrees F oven for 5 to 10 minutes or until golden, shaking pan once or twice.
Graham Cracker Crust: Ingredients
3/4 cup finely crushed graham crackers,
3 tablespoons canola oil
2 tablespoons sugar or sugar substitute* equivalent to 2 tablespoons sugar
Directions
Preheat oven to 350 degrees F. In a small bowl, combine crushed graham crackers, canola oil, and sugar. Mix well. Spread evenly in bottom of an 8- or 9-inch springform pan; press firmly onto bottom. Bake for 5 minutes. Cool on a wire rack.
Nutrition Facts Per Serving:
Servings Per Recipe: 14
PER SERVING: 150 cal., 8 g total fat (4 g sat. fat), 11 mg chol., 144 mg sodium, 14 g carb. (1 g fiber), 5 g pro.
Dogs are often called a man’s best friend – but for some, this common phrase has a much deeper meaning.
Groups like Canine Hope for Diabetics and Diabetic Alert Dogs of America help type 1 diabetics safely gain independence through training and providing working service dogs. These Diabetic Alert Dogs are trained to pick up on low (hypoglycemia) or high (hyperglycemia) blood sugar events and alert their owners before it becomes dangerous. These dogs are able to detect the chemical change produced by blood sugar high and lows and alert their owners so they can take steps to return their blood sugar to normal levels and avoid a diabetic emergency.
How Diabetic Alert Dogs Make Life Easier for Those With T1D
To get a glimpse of just how much of a difference these dogs make for adults and children with T1D, consider Luke’s story. Luke was diagnosed with T1D at just two years old. His mom took him to the doctor after noticing he was tired, thirsty and irritable, and a fingerprick confirmed that he had T1D. The doctor sent Luke straight to the hospital, where his mom began to learn how to take care of him with the new diagnosis: how to prick his finger, how to check his blood sugar and how to administer insulin.
So why did Luke need a Diabetic Alert Dog? He is hypoglycemic unaware, which means that he can’t tell when his blood sugar is getting too low. Diabetic Alert Dogs are trained to notice when blood sugar gets too low and notify their owners. Getting a dog would give Luke more independence; he’d be able to play sports, go to friends’ houses and be a “normal” kid again.
Luke received Jedi, a Diabetic Alert Dog who has saved his life many, many times. Jedi knows when Luke’s blood sugar gets too low, and alerts him and his mom so that they can take the necessary steps to correct his blood sugar. Just recently, at a Friends for Life conference, Jedi alerted Luke’s mom twice while he was playing with other children with type 1 diabetes. Luke was too low the first time and too high the second time.
It’s not just Luke benefitting from from having a Diabetic Alert Dog, either. Many children and adults with T1D have dogs that warn them of extreme blood sugar fluctuations, often saving their lives.
If you have T1D and are interested in learning more about Diabetic Alert Dogs, we encourage you to contact Canine Hope for Diabetics, Diabetic Alert Dogs of America or a similar group that trains alert dogs for diabetics.
Research suggests that diabetes could be due to failure of beta cell ‘hubs’
Original article published by University of Birmingham on July 21, 2016. Click here to read the original article.
The significant role of beta cell ‘hubs’ in the pancreas has been demonstrated for the first time, suggesting that diabetes may due to the failure of a privileged few cells, rather than the behaviour of all cells.
Researchers used optogenetic and photopharmacological targeting to precisely map the role of the cells required for the secretion of insulin.
The team believe that the findings, published in Cell Metabolism, could pave the way for therapies that target the ‘hubs’.
Dr David Hodson, from the University of Birmingham, explained, “It has long been suspected that ‘not all cells are equal’ when it comes to insulin secretion. These findings provide a revised blueprint for how our pancreatic islets function, whereby these hubs dictate the behaviour of other cells in response to glucose.”
According to the NHS, there are currently 3.9 million people living with diabetes in the UK, with 90% of those affected having type 2 diabetes.
Type 2 diabetes occurs when the pancreas fails to produce enough insulin to function properly, meaning that glucose stays in the blood rather than being converted into energy.
Beta cells (β cells) make up around 65-80% of the cells in the islets of the pancreas. Their primary function is to store and release insulin and, when functioning correctly, can respond quickly to fluctuations in blood glucose concentrations by secreting some of their stored insulin.
These findings show that just 1-10% of beta cells control islet responses to glucose.
Dr Hodson, who is supported by Diabetes UK RD Lawrence and EFSD/Novo Nordisk Rising Star Fellowships, continued, “These specialised beta cells appear to serve as pacemakers for insulin secretion. We found that when their activity was silenced, islets were no longer able to properly respond to glucose. “
Prof Guy Rutter, who co-led the study at Imperial College London, added “This study is interesting as it suggests that failure of a handful of cells may lead to diabetes”.
Studies were conducted on islet samples from both murine and human models.
The team noted that, though the findings present a significant step forward in understanding the cell mechanisms, the experiments therefore may not be reflected in vivo, where blood flow direction and other molecule dynamics may influence the role of the hubs and insulin secretion.
Artificial Pancreas Protocol Deemed Feasible for Younger Kids
Original article published by HealthDay News on May 12, 2016. Click here to read the original article.
Artificial pancreas linked to three-fold reduction of time-in-hypoglycemia for 5- to 9-year-olds
THURSDAY, May 12, 2016 (HealthDay News) — A child-specific version of the modular model predictive control (MMPC) algorithm is feasible and safe for 5- to 9-year-old children with type 1 diabetes, according to the first outpatient single-hormone artificial pancreas (AP) trial in a population of this age, published online May 10 inDiabetes Care.
Simone Del Favero, Ph.D., from the University of Padua in Italy, and colleagues conducted an open-label, randomized, crossover trial involving 30 children, aged 5 to 9 years, with type 1 diabetes. The authors compared three days with an AP with three days of parent-managed sensor-augmented pump (SAP).
The researchers observed a reduction in overnight time-in-hypoglycemia with the AP versus the SAP (median, 0.0 versus 2.2 percent; P = 0.002), with no significant change of time-in-target (56.0 and 59.7 percent, respectively; P = 0.430); there was an increase in mean glucose (173 versus 150 mg/dL; P = 0.002). The AP was associated with a three-fold reduction of time-in-hypoglycemia (P < 0.001) at a cost of reduced time-in-target (P = 0.022) and increased mean glucose (P < 0.001).
“This trial, the first outpatient single-hormone AP trial in a population of this age, shows feasibility and safety of MMPC in young children,” the authors write. “Algorithm retuning will be performed to improve efficacy.”
Several authors disclosed financial ties to pharmaceutical and medical device companies, several of which provided equipment for the study.
Islet Transplantation May Correct Type 1 Diabetes, Study says
Original article written by Stephen Feller and published by United Press International on April 26, 2016. Click here to read the original article.
WASHINGTON, April 18 (UPI) — Transplants of islet cells, the cells responsible for producing insulin in the pancreas, helped people with type 1 diabetes establish near-normal control of their glucose levels, get free of hypoglycemic events and in many cases no longer need insulin therapy.
Just under 90 percent of patients receiving islet cell transplants in a National Institutes of Health-sponsored clinical trial showed significant improvement in management of their condition during the course of a year, inching researchers closer to a cure for the genetically-caused disease.
Type 1 diabetes is an autoimmune disorder, in which the immune system attacks islet cells, preventing the release of insulin, making it difficult for the body to break down sugars for use, storage or excretion.
The clinical trial, spearheaded by the Clinical Islet Transplantation Consortium, announced in September that the first patient in the study no longer needed insulin therapy.
With results from the rest of the phase 3 trial in hand, the researchers said they will look to license technology to manufacture purified human pancreatic islets for mass use, while also continuing studies on the safety and efficacy with varied groups of patients.
“For people unable to safely control type 1 diabetes, islet transplantation offers real hope for preventing severe, life-threatening hypoglycemia,” Dr. Tom Eggerman, a researcher at the National Institute of Diabetes and Digestive and Kidney Diseases, said in a press release.
For the study, published in the journal Diabetes Care, researchers recruited 48 patients at eight university medical centers around the United States.
All patients received purified islet cells from deceased human donors, with each participant given the transplant into the portal vein, which carries blood from the intestine to the liver. Each of the patients was also given immunosuppressive drugs to prevent their immune systems from rejecting the cells.
After one year, 87.5 percent of participants had no hypoglycemic events, near-normal control of glucose and better awareness of their condition. After one year, 52 percent of patients no longer needed insulin therapy.
Of patients who did not see results within 75 days — they still needed insulin treatments — 25 patients received a second transplant, and one patient received a third.
The researchers worked with the U.S. Food and Drug Administration to run the trialwith future plans for mass manufacture in mind, potentially speeding up the approval process.
“The findings suggest that for people who continue to have life-altering severe hypoglycemia despite optimal medical management, islet transplantation offers a potentially lifesaving treatment that in the majority of cases eliminates severe hypoglycemic events while conferring excellent control of blood sugar,” said Dr.Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases.
Children with type 1 diabetes may not need to start screening for eye disease as early as currently recommended, a new study suggests.
Most children with type 1 diabetes probably don’t need a yearly exam for diabetes-related eye disease (diabetic retinopathy) until age 15, or 5 years after their diabetes diagnosis, whichever is later, the study authors reported online Sept. 1 in the journal Ophthalmology.
“Many of our young patients with diabetes diligently come in every year for screenings that consistently show no sign of the disease,” study co-author Dr. Gil Binenbaum, attending surgeon in the ophthalmology division at The Children’s Hospital of Philadelphia, said in a journal news release.
“Of course, that’s good news for them, and it is very important to have annual eye exams once the risk of vision loss develops. But, is it worth the burden on the family and the health care system if evidence shows that diabetic retinopathy doesn’t reach a treatable stage until years later?”
Early detection and treatment of diabetic retinopathy reduces vision loss in adults, the researchers said. Some medical groups currently recommend that screening start at age 9, or three to five years after a type 1 diabetes diagnosis.
But, this study found no evidence of diabetic retinopathy in 370 children who had at least one screening. And, that was true regardless of how long they had diabetes. It was also true whether their blood sugar levels were well controlled or not, the research showed. The children were all 18 or younger, and had type 1 or type 2 diabetes.
Children with type 2 diabetes and those at high risk for diabetic complications should begin screening as soon as they are diagnosed with diabetes, the study authors said. Many people with type 2 diabetes live with uncontrolled disease before they are diagnosed, the researchers explained.
Diabetic retinopathy is the leading cause of blindness among working-age Americans, according to the U.S. National Eye Institute (NEI). The eye disease affects nearly 8 million people in the United States, the NEI said.
Early Signs in Young Children Predict Type 1 Diabetes
New research shows that it is possible to predict the development of type 1 diabetes. By measuring the presence of autoantibodies in the blood, it is possible to detect whether the immune system has begun to break down the body’s own insulin cells.
“In the TEDDY study we have found that autoantibodies often appear during the first few years of life,” said Professor Åke Lernmark from Lund University, who is leading the study in Sweden.
The TEDDY study, funded by the US National Institutes of Health (NIH), involves 8 600 children from Sweden, the US, Germany and Finland. The children have an increased hereditary risk of type 1 diabetes, detected at birth through tests on blood from the umbilical cord. TEDDY stands for “The Environmental Determinants of Diabetes in the Young.”
Antibodies are part of the body’s immune system and the presence of antibodies in the blood is a sign that the immune system has reacted to an intruder such as a virus or a bacteria. Sometimes, the immune system mutinies and attacks the body. Autoantibodies are a sign of an autoimmune disease and form markers indicating that an attack is underway, for example on the body’s own insulin cells.
The new findings from the TEDDY study have been published in the journal Diabetologia and show that there are three ways to predict the development of type 1 diabetes.
Three ways to predict development of type 1 diabetes:
1. If the autoantibody first discovered attacks insulin (IAA) In Sweden this usually takes place at the age of 18 months. However, in the study as a whole most babies affected were less than a year old.
“If a second autoantibody is detected later, then the person will get diabetes — but it may take up to 20 years,” said Åke Lernmark.
2. If the first autoantibody targets GAD65 (GADA), a protein inside the insulin-producing cells In Sweden this usually happens at the age of two and half, whereas in the study as a whole it was most common at the age of two.
3. If both autoantibodies are first found together
“In TEDDY, 40 per cent of these children had already developed diabetes,” said Åke Lernmark
Of the participating children, 6.5 per cent had their first autoantibody before the age of six.
In 44 per cent of cases, they only had an autoantibody against insulin (IAA). Most of them had this by the age of 1-2.
In 38 per cent of cases, GAD65 autoantibodies (GADA) were detected. The numbers increased until the age of two and then remained constant.
In 14 per cent of cases both autoantibodies were found at the same time, with a peak at the age of 2-3.
The hereditary risk of type 1 diabetes determined which autoantibody the children had. However, it is still not known what causes the immune system to start attacking the body’s own insulin cells to start with. One theory is that a viral infection could be the trigger.
“It is possible that there are two different diseases involved. Perhaps one virus triggers the autoantibodies against insulin and another one the autoantibodies against GAD65,” said Åke Lernmark.
Footnote: Since the birth of the children in the TEDDY study, their parents have kept regular, detailed food diaries, submitted blood and stool samples, nail samples and information about illnesses and medication. When autoantibodies are detected in a child’s blood, the researchers begin the sizeable task of analysing all the material in the hunt for what it is that may have caused the immune system to mutiny.
Type 1 Diabetes Increasing As Medical Teams Shrink
Before heading off to swim practice, Brian Lybeck of Avon tests his blood glucose level, which will tell him how much food he needs to eat and also calculates the amount of insulin he needs from a pump he programs to deliver the medication. (John Woike)
By THERESA SULLIVAN BARGER, Special to The Courant
Type 1 diabetes can strike at any age
It takes a medical team to help type 1 diabetics stay healthy
In the 15 months since Brian Lybeck’s type 1 diabetes’ diagnosis, the seventh grader and his family have worked with four different diabetes educators at Connecticut Children’s Medical Center. Like their counterparts at other diabetes practices, the educators left for other jobs.
Jonathan Chappell, 38, developed the chronic disease, formerly called juvenile diabetes, at the age of 23. When the Wallingford resident sought to switch endocrinologists a decade ago, several practices were too full to take new type 1 diabetics unless they had aged out of pediatric care. Yale-New Haven Hospital’s Diabetes Center would take him, he said, but the office had such a backlog, he had to wait six months to see an endocrinologist.
Brian Lybeck, age 13, is among the growing number of Type 1 Diabetics. This form of diabetes in children has increased 21 percent in eight years. (John Woike)
Nationally, there’s a shortage of about 1,500 adult and 100 pediatric full-time equivalent endocrinologists, the Journal of Clinical Endocrinology & Metabolism reported in June. Several factors contribute to a national imbalance between the supply of doctors and the patients who need them: With medical advances in the treatment of type 1 diabetes, adults are living longer with the disease; the prevalence of type 1 diabetes in children has increased 21 percent in eight years; and as endocrinologists retire and leave clinical care, the number of new endocrinologists has remained static.
While some states with large rural swaths have starker shortages, Connecticut’s shortage is expected to grow as demand for endocrinologists outstrips supply. In Connecticut, nearly 7 percent of the adult population, about 186,000 people, has diabetes, according to the state Department of Public Health. Some 5 to 10 percent of those people, or 9,300 to 18,600, has type 1 diabetes.
The Connecticut shortage is most pressing among endocrinologists who treat adults. There is also a shortage of APRNs and diabetes educators who work with adults, teens and children.
Type 1 diabetes can strike at any age, and when it does, the person’s pancreas stops producing insulin, the hormone needed to turn food (also called sugar or glucose) into energy. Those with type 1 diabetes (T1D) need insulin, either through a shot or an insulin pump, with every meal and snack. Several factors affect blood glucose levels — including hormones, growth, stress, exercise, diet, illness and medications — so keeping levels in a healthy range is a daily, lifelong challenge.
To be effective, the medical team that cares for type 1 diabetics has to be knowledgeable, empathetic, patient and diplomatic. Not only are patients seen quarterly, but they often need to check in with a nurse, diabetes educator or endocrinologist between appointments.
“Diabetes educators, RNs, RDs, APRNs, they’re the blood and guts of a practice. Where we get a lot of turnover is in these critical team members,” says Karen Rubin, MD, chief, diabetes & endocrinology, Connecticut Children’s Medical Center. “They’re the ones who do a lot of the day-to-day management.”
While genetics and lifestyle factors cause type 2 diabetes, only 15 percent of people with type 1 have a family history. Scientists believe that environmental triggers play a role and the onset of type 1 is not caused by diet or lifestyle. Also, there is no known prevention or cure.
Demand Outstrips Supply
“Everybody’s booked out,” says Torrington-based endocrinologist Egils Bogdanovics, who expanded his clinical time from 8 to 10 hours a day to accommodate the demand.
Endocrinologists treat patients with metabolic diseases that are increasingly common, especially type 2 diabetes, osteoporosis and thyroid disease, said Sylvio Inzucchi, MD, medical director of the Yale Diabetes Center. “It’s difficult to get an appointment with an endocrinologist without having to wait, two, three or four months,” Inzucci said. “We can’t keep up with the demand.”
Rubin, at Connecticut Children’s, said the on-the-job training requirement feeds the dearth of diabetes educators. Colleges don’t offer diabetes educator courses, so nurses and registered dieticians learn on the job, logging at least 1,000 hours of patient care before they’re permitted to take the exam to become a certified diabetes educator (CDE).
“We get them; we train them. It could take a year or two to get them up to speed,” Rubin says. “They’re such critical members of the team; they’re implementing the demanding care. … It’s so emotionally heart wrenching working with these kids and families, trying to keep these kids safe.”
Scary Days
Brian Lybeck’s diagnosis of type 1 diabetes began with three days in Connecticut Children’s Intensive Care Unit because of diabetic ketoacidosis, a life-threatening condition caused by his body using fat for fuel, releasing acids that made him sick in the process. His mother Susan Lybeck said Brian, now 13, is doing well using a monitor to keep him apprised of his blood glucose and a pump he programs to deliver insulin.
“I think the level of care is phenomenal,” the Avon resident said. “I’m very happy with everyone I’ve worked with.”
Between seeing patients, responding to a stream of calls and emails, lobbying insurance companies on behalf of patients and completing paperwork, nurses and diabetes educators can get burned out. Some leave because they’re lured away by better hours and higher pay working for pump or pharmaceutical companies, Rubin said, while others leave to raise their families.
Complicated Disease
Without proper disease management, a diabetic faces a host of long-term health complications and risks death if blood sugars go too low or too high. The American Diabetes Association recommends that even people like Trudi White, who has had diabetes for 51 of her 55 years, meet face-to-face with their diabetes healthcare team every three months. In Connecticut, most endocrinology practices have a team approach to care, with at least an endocrinologist, an APRN and a diabetes educator.
When White’s endocrinologist left the state, it took the Glastonbury woman a year to find an endocrinologist who fulfilled her preference for someone knowledgeable about therapy advances who would also see patients himself at each quarterly visit.
“I find that the difficulty in finding a doctor who you can sit down with and meet with is overwhelming in this area,” she says. She meets in a group of 15 people who wear insulin pumps, 12 of whom never see their endocrinologist; they see other team members instead. “Diabetes doesn’t fit the same way on each person and that’s why the care of medical professionals is so important.”
With the complicated nature of the disease, endocrinologists and APRNs must spend more time on these cases than with other patients.
Several endocrinologists say their practices couldn’t break even if they only saw T1D patients, so their other patients help supplement the practice. While practices can bill insurance for a doctor and an APRN visit, the paperwork involved in billing for a registered dietician’s time costs the practice more than the reimbursement rate, said Dr. Cem Demirci, director, type 1 diabetes program at Connecticut Children’s. And several practices’ staff said they don’t get reimbursed for diabetes educators’ or social workers’ time.
Connecticut Children’s, which, along with Yale Pediatric Specialty Center, sees the vast majority of the state’s children and teenagers with type 1 diabetes, has one social worker for about 1,000 patients. The social worker works full time but is paid a part-time salary, Demirci said. The practice is trying to add a part-time psychologist to help address the psychological challenges families face coping with a complex disease, he added.
“Every family struggles with the condition, even if they’re not struggling financially,” he said. “One person for a practice of 1,000 Type 1 Diabetics is clearly not enough.”
At some point in their lives, 50 percent of T1D patients face depression, said Jean Kostak, a registered dietician, CDE, and program coordinator with UCONN Health.
“There are a lot of people who need to be connected with mental health services,” she said.
Some doctors become endocrinologists because working with such a complex disease allows them to get to know their patients.
Endocrinologist Elizabeth Fasy, with Hartford Health Care Medical Group, herself a type 1 diabetic, says she works “part time” because she has a young family, but that means 25 to 30 hours a week seeing patients and 30 hours per week returning their calls, emails and doing paperwork.
“Part of that may be because I tend to want to call patients myself. I take advantage of doing that on my days off,” she said. “When you’re a diabetic, you’re your own doctor, and I have to be there to support people.”
Theresa Sullivan Barger is a freelance writer and mother of a son who has type 1 diabetes and is a patient at Connecticut Children’s.
