Editor’s Note: The January 2012 issue of Health Affairs is a thematic volume titled “Confronting The Growing Diabetes Crisis.”

Ariella was a different child, thin and shy, when I first met her about a year and a half ago, just after her 6th birthday. Her mother had noted her thirst and hunger, and, despite this hunger, weight loss. When she began wetting the bed for the first time in three years, her mother brought her to her pediatrician. Her pediatrician checked her urine for sugar and ketones, and, when both were positive, she sent her to see us at the pediatric diabetes center.

Ariella is an amalgam of my (Michelle Katz’s) patients to better protect their identities. She is exceptional only in how typical her experience is. Her story, recounted in the first half of this post, illustrates the tremendous advances we have made in diabetes care; it also illustrates the equally tremendous challenges we face in assembling and paying for the interdisciplinary support systems needed to help children with diabetes manage their condition and thrive. In the second half of this post, my coauthor Lori Laffel and I address the policy challenges posed by managing a chronic condition in a health care system geared to acute illnesses.

The Personal: Ariella’s Story

Ariella never needed to be hospitalized. Her mother, who was the main caretaker for Ariella, and grandmother met with me, a diabetes nurse educator and a nutritionist that first morning after her diagnosis. After I had explained who I was, my role as the doctor on her diabetes team, and the plan for the morning, her grandmother interrupted with a question. “There’s always a chance, right Doctor, that she doesn’t have diabetes? I mean, what else could it be?” she said. I knew what she wanted me to say but I was straight with her: “Ariella’s blood sugar is much higher than it should be, she has ketones in her urine, and she has had classic symptoms of diabetes for the past two weeks. She has diabetes and she needs insulin.” I could tell it was not what she wanted to hear. I added, “You did nothing to cause diabetes and you could not have prevented it.” She nodded, and we moved on.

Our goal that morning, since Ariella was not acutely ill, was to give her mother and grandmother some basic knowledge and technical skills to manage diabetes and to give Ariella her first dose of insulin, which would work immediately to drive down her blood sugars and reduce her thirst and urination. Her mother and grandmother gamely learned to check blood sugars and give insulin injections. When it was time for them to give Ariella her insulin injection, she whimpered and cringed. There was no choice, however. Insulin is life-saving in type 1 diabetes and can only be delivered into the tissues beneath the skin. Ariella would have to get an injection from her family members before we could allow her to return home.

Over the next 2 days, we taught them basic diabetes metabolism and physiology, the symptoms and treatment of high and low blood sugars, how to adjust insulin dosage for big and small meals and how to deal with special situations such as illness or athletic activities. The diabetes social worker gave them contact information for community organizations and online message boards so that they could gain support and reassurance from others if they chose. Her family continued to call the diabetes center about three times a day before meals for support calculating her insulin dose and to make adjustments to her insulin regimen.

Ariella returned to kindergarten by the end of the week. Even in three days, she had adjusted to having her finger pricked. Her only choice was which finger; the prick was inevitable, as was the shot of insulin that generally followed.

Ariella changed in the eyes of her friends, teachers and coaches from Ariella, the adorable, initially shy but then slightly cheeky 6 year old, to Ariella, the little girl with diabetes. Ariella’s mother, with help from the center team, filed a 504 plan, a legal document that spelled out the care plan needed to keep Ariella safe and healthy at school. Although her mother attended every soccer game, Ariella’s soccer coach, another neighborhood mom, asked Ariella how she was feeling at every break in the action because she had been told that exercise could cause a critical drop in Ariella’s blood sugar.

Like many of our families, her mother called, panic in her voice, with the first low blood sugar. Her mother responded just as we had taught her, by giving her body the sugar it so badly needed (in this case, in the form of 4 oz. of juice). We got another urgent phone call with Ariella’s first high blood sugar. Our nurse helped her mom adjust the insulin dose for the high number. Low blood sugars and high blood sugars have long since become routine for Ariella and her family, and while their pulse may quicken a little bit with certain values, the numbers themselves are not met with outright fear.

Nine months following her first insulin injection, Ariella made the transition from injections to pump. The transition involved another period of close follow-up and another steep learning curve, but her mother appreciated the flexibility in insulin administration afforded by the pump. Ariella appreciated only having one big stick as the pump catheter is inserted every two to three days avoiding the many little sticks from insulin injections four or more times a day. Ariella’s blood sugars continued to be erratic, especially compared to someone without diabetes. We continued to see Ariella and her mother every 3 months with frequent phone calls to the team between visits to review her blood sugars and assess her changing insulin needs, and to develop strategies for each new situation. Things like a sleepover at a friend’s house, an airplane ride or a day at the beach require planning ahead and our certified diabetes educators have strategies for each of these common situations.

Just a few months ago, Ariella woke up and let her mother know that she felt lousy. When she pricked her finger and checked her blood sugar, the meter said “hi” which meant that her blood sugars were higher than could be measured accurately on the meter. Her mother remembered to check for ketones and these were elevated, suggesting that her body had turned to breaking down protein and fats for energy in lieu of glucose (sugar); as a byproduct, ketones, which are acidic and can change the pH of the blood, were being formed. If this process goes unchecked and medical care is not available, coma and death could result.

Ariella’s pump site had become dislodged overnight, and with no insulin being delivered, the sugar in her blood accumulated even as her cells were starving for it. When she vomited once, her mother contacted the on-call doctor. Because of Ariella’s blood sugar and ketone information available over the phone and her mother’s description of her relatively healthy appearance, the on-call doctor was able to direct her management remotely. Ariella improved over the next few hours after ongoing dialogue between her mother and the healthcare team and was able to avoid a visit to the Emergency Room. Following this episode, Ariella’s mother has a much better idea of the tradeoffs involved with choosing an insulin pump. It does make the insulin dose calculations easier and it adds even more flexibility and convenience to living with diabetes, but the risks cannot be ignored.

I am proud of what Ariella and her mother have accomplished. They are attentive to her diabetes care without letting it overwhelm their life. However, as proud as I am at all that Ariella and her mother have accomplished, I worry too. Ariella is still relatively recently diagnosed with what is currently a lifelong disease. Diabetes burnout is not infrequent. Children and families often get sick and tired of all of the tasks involved, but diabetes is relentless and can never be totally ignored. Ariella is still a couple of years before adolescence. However, once that turbulent period arrives, diabetes management can be much more complicated. Newfound independence, adolescent invincibility and an inability to visualize, plan and worry about the future makes adolescence a tricky time for most youth, but the risks of bad decisions are so much greater for a teenager with diabetes.

For so many of my patients’ families, including the patients upon which Ariella is based, having a child with a chronic disease is only one of a host of stressors for the family. It is the rare family that does not have something additional that further complicates their diabetes care, whether it is mental illness on the part of the patient or caretakers, another serious chronic disease in the family, or limited literacy, numeracy, or other learning or attention problems. There are frequently financial stressors such as limited health insurance, housing and food insecurity and unemployment that, when added to the high costs and missed work of routine diabetes care, lead to significant concerns. These issues are so common that diabetes centers usually employ child psychologists and social workers to work with children and families.

The Policy: Finding The Village

The care of children with type 1 diabetes has become increasingly complex, as providers and families strive to achieve near normal blood glucose targets in efforts to prevent long term diabetes complications such as vision loss and kidney failure. Families need frequent support and extensive education in diabetes self-management in order to have the knowledge and skills necessary to successfully manage the condition. We encourage parents and caretakers to call as often as they need, sometimes multiple times per day, in order to learn to safely manage diabetes at home. Parents frequently send pages of blood glucose information by fax or email so that we may contact them for adjustments in their child’s insulin regimen between scheduled visits. Parents also can contact the diabetes team 24 hours a day 7 days a week for any an emergency situation.

Ariella was diagnosed with type 1 diabetes in the 21st century, an era surfeit with modern technologies, Internet communications, and diabetes management advances, and yet no cure for type 1 diabetes. Twenty-five years ago, it would have been more likely that she would have presented to her pediatrician in extremis with diabetic ketoacidosis, requiring not only emergency hospital admission but intensive care in order to gingerly correct her metabolic derangements without compromising her central nervous system function. As you can see from Ariella’s presentation, she was spared a hospital admission and managed entirely in the outpatient setting by a multi-disciplinary team of pediatric diabetes experts.

Despite the lack of cure, the 21st century has seen tremendous advances in diabetes care, such as virtually painless blood glucose monitoring devices that require less than 1 microliter of blood (less than 1/1000 of a teaspoon) to provide accurate results in 5 seconds or less, ultrafine needles to deliver insulin, and designer insulin preparations that can provide either a rapid onset of insulin or background, basal insulin action. In addition, there are sophisticated insulin pen delivery devices and advanced insulin pumps, such as the one Ariella uses, that can calculate insulin doses based upon input of the blood glucose level and anticipated carbohydrate intake. Now, there are some devices that can provide continuous, real-time glucose measurements that employ a glucose sensor placed under the skin that connects to a transmitter, which, in turn, wirelessly transmits 288 glucose readings per day (at 5 minute intervals) to a remote receiver.

But these technologies offer only a form of imperfect insulin replacement, as remarkable rigor is required to orchestrate the changing treatment demands of fluctuating glucose levels in an active, growing child. Just like any child, the child with diabetes will also experience multiple childhood infections. Every illness brings additional risk of metabolic decompensation and possible hospitalization unless there is timely round-the-clock phone support from the multi-disciplinary diabetes team.

Has our health care system kept up with the changing demands of managing a chronic illness such as type 1 diabetes? Our system has previously based its compensation upon illnesses that require acute, hospital care. But the goal of diabetes management in youth is to maintain normal growth and development, school attendance, and sports participation while preventing costly hospitalizations and emergency room visits. To do this requires tremendous assistance from experts who respond to frequent phone calls from parents, reply to questions regarding blood glucose results via email, and provide support often on the Internet through diabetes-specific bulletin boards or chat rooms.

Who provides the expertise for these virtual encounters that are not reimbursed by payers? Who taught Ariella’s mother and grandmother diabetes management on the day of her diagnosis? Who taught her mother the intricacies of insulin pump therapy and helped ensure that Ariella’s school nurses or school personnel were knowledgeable enough to manage her diabetes during the school day? The support derives from the multi-disciplinary pediatric diabetes team composed of a pediatric endocrinologist, a certified diabetes nurse educator, a pediatric dietitian, and mental health providers. The modern diabetes technologies noted above demand even more support from experts for successful implementation and ongoing use. With each advance comes a need for additional training of professionals so that knowledge can be transferred and translated to the family and to the community.

We are facing an epidemic of type 1 and type 2 diabetes in youth. The recent increase in type 2 diabetes derives from the epidemic of childhood obesity. No one knows why there is a similar epidemic of type 1 diabetes in youth. The last 25 years has seen a doubling of the numbers of children newly diagnosed with type 1 diabetes each year and the next doubling of annual cases is expected to occur in a mere 15 years.

While the numbers of youth afflicted is increasing, the numbers of doctors entering the field of pediatric endocrinology is not keeping pace. Further, there is a critical shortage of trained pediatric endocrinologists who focus on pediatric diabetes care and research. This shortage arises from the combination of the increased occurrence of diabetes in youth, the extraordinary demands required to care for youth with diabetes, and the financial burdens placed upon pediatricians prolonging their training to sub-specialize in pediatric endocrinology. A recent publication in the journal Pediatrics reported that pediatric endocrinologists have lower lifetime earning potential than general pediatricians, creating another deterrent to entering the field of pediatric endocrinology. Similarly, there is a need for additional pediatric diabetes nursing, nutrition, and mental health expertise to care for the increasing numbers of youth with diabetes.

So, while researchers are seeking a cure and engineers along with physicians are using technologies to derive better treatments and a possible “artificial pancreas” (coupling insulin pumps with continuous glucose sensors), we need health care reformers to find remedies for our health care system so that the time intensive, outpatient management of diabetes can be appropriately compensated.

In fact, when a child has diabetes, the family has diabetes. Further, the tasks of diabetes management are like an ever-expanding web that touches beyond the family to the school, athletic coaches, after-school day care providers, and in fact much of the community in which the child lives. When it comes to the care of a child with type 1 diabetes, it truly takes a well-trained multi-disciplinary village to raise that child. How will we fund this village?