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Unsafe At School: Advocating for Children with Type 1 Diabetes* Lila Yewchuk, MD, FRCPC, and John Paul Morrison, Children’s Rights Advocate, Unsafe at School Type 1 Diabetes (T1D) is a chronic, life-threatening illness that affects children of all ages. It is an auto-immune disorder, where the body attacks the cells in the pancreas that are responsible for the production of insulin. Its cause is unknown and children, youth and adults affected lose the ability to process carbohydrates, the complex sugars that make up much of a normal diet. Before the discovery of insulin in 1922 at the University of Toronto, Canada, T1D was fatal. Type 1 diabetics are insulin dependent and require a lifetime of several insulin injections a day, and frequent testing to determine blood sugar levels. It necessitates continual daily monitoring and treatment to keep blood sugars as close to normal levels as possible. Although there is an abundance of promising research, there currently is no cure.
T1D affects at least 440,000 children under the age of 14 and millions of adults, with 70,000 children newly diagnosed each year.1 In Ontario alone, the incidence of T1D increased by 48% between 1992 and 2002.2 In British Columbia, 2004, T1D had an estimated prevalence of 0.15%, or 1477 children aged 0 to 18 years.23 According to researchers, by 2020, the incidence of T1D is expected to double in children under five years old.3 In adults with T1D, the negative impact of acute fluctuations in blood sugar on cognitive and motor function are well known.4,5 The goal in diabetes management is to optimize blood glucose control using hemoglobin A1c targets -a more precise measurement of blood sugar that tracks changes over a three to four month period. The purpose of this control is to avoid hyperglycemia (high blood sugar) and its well-documented, long-term microvascular consequences (including heart attack, stroke, kidney failure, blindness, amputation) while minimizing hypoglycemia (low blood sugar). Recent studies reveal that a 1.0% reduction in A1c (having fewer high blood sugar readings) lowers the risk of microvascular complications by 40%.3 Until recently, there were few studies examining these effects in children - likely due to a reluctance to induce extreme glucose levels, and possible neurological insults, in younger patients with developing brains. However, glucose fluctuations more extreme than those induced in studies occur routinely outside of the laboratory in children with T1D; these naturally occurring episodes of acute hypo- and hyperglycemia during daily routine have been shown to cause cognitive-motor disruptions in school-aged children.4 Recent research is uncovering the deleterious effects glucose extremes have on a child’s learning. Repeated hypoglycemia has been found to reduce spatial intelligence and delayed recall in children with T1D.5,6 In these same children, increased exposure to hyperglycemia reduces verbal intelligence and slows mental efficiency.6 “Hyperglycemia, not hypoglycemia, (is) associated with adverse effects on the brain polyol pathway activity, neuronal structural changes, and impaired long-term spatial memory. This finding suggests that the hyperglycemic component of diabetes mellitus has a greater adverse effect on brain functioning than does intermittent hypoglycemia.”7-9 The Canadian Diabetes Association (CDA) claims “studies have found chronic hyperglycemia in young children (is) associated with poorer cognitive performance.”10 Correcting high blood glucose is therefore essential for a child’s long term health as well as his/her learning needs. “The best and most current evidence-based clinical practice data for healthcare professionals,”10 is outlined in the Canadian Diabetes Association 2008 Clinical Practice Guidelines for the Prevention and Management of Diabetes in Canada. It states: “insulin therapy is the mainstay of medical management of type 1 diabetes.”10 It emphasizes tight glycemic control for patients with T1D, suggesting that “health outcomes depend on managing the disease effectively, and without access to the necessary tools and strategies, Canadians living with diabetes will not be able to achieve optimal results.”10 The CDA makes special mention of the pediatric population living with T1D when it emphasizes that “regardless of the insulin regimen used, all children should be treated to meet glycemic targets.”10 The American Diabetes Association (ADA) describes how “current standards for diabetes management reflect the need to maintain glucose control as near to normal as safely possible” and “based on substantial evidence of the relationship between glucose control and diabetic complications, each iteration during the past decade has lowered the target glucose level.”11 The ADA goes on to say: “The management of diabetes in (the 6 - 12 age-group) is particularly challenging, because many 6- to 12-year-olds require insulin with lunch or at other times when they are away from home. Many require insulin administration while at school, which demands flexibility and close communications between the parents, the healthcare team, and school personnel.12 The lack of abstract thinking in most children of this age limits management choices and dictates that parents or other adults make most of the treatment decisions. While children in this age-group may be more able to recognize and self-treat hypoglycemia, close adult supervision is still required…The ability of most children of this age to recognize, report, and seek treatment for hypoglycemia, combined with an absence of insulin resistance and psychological issues associated with puberty, makes this age-group perhaps the most amenable to intensive glucose control. An A1c goal of ≤8%... is recommended.”11 The Canadian Diabetes Association recommends an A1c goal of <8% in 6-12 year old children, while the International Society of Pediatric and Adolescent Diabetes 2009 Clinical Practice Consensus Guidelines recommends < 7.5% for all age-groups, although each child should have their targets individually determined.10, 27 If a young child with T1D, who cannot yet self-manage, is prevented from receiving insulin while at school due to an inadequate care plan, hyperglycemia may go untreated. This causes undue harm to the child and unnecessarily increases the risk for long term, devastating chronic complications of the disease as well as neurocognitive learning impairments which may appear immediately.4 Schools are in session for approximately 6 hours, five days a week. With approximately 187 instructional days each year, this calculates to over 1100 hours/year a child with T1D spends at school. While both the CDA and ADA promote optimal glycemic control in diabetes, it is Canadian, not American children who are unsafe at school.20 The ADA initiated the “Safe at School” campaign which resulted in a Statement of Principles to ensure children with T1D are guaranteed freedom from discrimination and access to medically necessary support while at school. This includes the administration of insulin and glucagon (a life-saving medicine used to treat emergency hypoglycemic reactions) and school assistance for young children not able to care for themselves -recognizing that “diabetes must be managed 24 hours a day, 7 days a week.”13 Like the UK, the United States believes “effective diabetes management during the many hours a child with diabetes spends at school and school-related activities is vital to the short- and long-term health of a child living with diabetes.”13 “Effective diabetes management is crucial for a) the immediate safety of students with diabetes, b) for the long-term health of students with diabetes, c) to ensure that students with diabetes are ready to learn and to participate fully in school activities, and d) to minimize the possibility that diabetes-related emergencies will disrupt classroom activities.”13 Canada has the 4th highest incidence of T1D,17 ranking ahead of Norway, the United Kingdom and the USA.1 To date, however, no Canadian diabetes organization has endorsed the principles of “Safe at School”, although the CDA continues to lobby at the Provincial and Territorial levels for legislative change.20 In 1922, a Canadian surgeon by the name of Frederick Banting discovered insulin -one of the most important scientific advances of the 20th century. He won the Nobel Prize in Medicine in 1923 and his name was immortalized as his birthday has been taken as World Diabetes Day, November 14th. Since that time, Canada has been a leading country in the area of diabetes research.14 The first continuous glucose monitor (CGM), a transmitting device used to communicate with the insulin pump, was developed in Toronto, Canada in the mid 1970’s. Canada, in conjunction with the U.S., conducted the ground-breaking Diabetes Control and Complications Trial (DCCT), the comprehensive ten year study ending in 1993 which clearly demonstrated the importance of glycemic control in preventing microvascular complications of T1D. This control was attained through intensive insulin therapy (more frequent insulin dosing), not conventional treatment (twice daily insulin dosing).15 This trial has been referred to as “the study that forever changed the nature of treatment of T1D,”22 as it revealed the need for better management. It is through these new, intensive insulin therapies, such as the insulin pump and multiple daily insulin injections, that many children with T1D now experience the best glycemic control currently available. When insulin is administered at a low level all day long by either of these regimes, it is possible to do as the DCCT recommended: the “reproduction of physiological insulin secretion,”15 a necessary way to improve glycemic control. The 2010 landmark STAR 3 trial, a 1-year multicenter, randomized, controlled trial that compared the efficacy of sensor (CGM)-augmented pump therapy with that of a regimen of multiple daily insulin injections in 485 adults and children with type 1 diabetes, concluded that “in both adults and children with inadequately controlled type 1 diabetes, sensor-augmented pump therapy resulted in significant improvement in (A1c) levels, as compared with injection therapy.”16 STAR 3 is the first study that confirms sensor-augmented insulin pump therapy provides superior glucose control for children and adolescents, an age group that is particularly challenging to treat due to the social and physiological changes due to growth and maturation. In STAR 3, nearly 44 percent of pediatric patients using sensor-augmented insulin pump therapy achieved the American Diabetes Association’s age-specific glucose control targets, compared to only 20 percent of patients in the multiple daily injection group.16 It is the longest and largest diabetes device trial of its kind, redefining what should be the standard of care for diabetes management. “For the first time, with the sensor-augmented insulin pump, adults, children and teens had a sustained improvement in A1c levels, which can greatly reduce the risk of complications from diabetes.”17 Although Canada is on the cutting edge of diabetes research and has made astounding contributions toward improving diabetes care, it has neglected to ensure children with this disease receive the medical treatment they require while at school. It is common to find Canadian children with T1D to be on traditional insulin therapies and not on newer intensive regimens just so that they can attend public school. Traditional regimens have less insulin injections and do not require a lunch time insulin bolus; the result of this is convenience for school personnel. But this means children must “fit” into the school, instead of the school meeting their care needs. The insulin strategies currently promoted by Canadian schools (twice-daily dosing) “rarely achieve optimal glycemic control because…they do not provide physiological or flexible insulin replacement…and may increase the risk of hypoglycemia.”15 In the past, people diagnosed with T1D lived highly regimented lives. They used “assigned fixed doses of insulin and had to follow a fixed meal schedule to fit the insulin regime. In other words, patients were asked to change their life to meet the demands of the insulin action, or face the consequence of high or low blood sugars. This took away the control of diabetes from the patient and placed rigorous demands on their lifestyle,”15 and as shown in the DCCT, glycemic control was rarely optimal on these traditional therapies. “The increase in options for patients with diabetes over the past decade is helping achieve the ultimate aims of physiological insulin replacement and the prevention and reduction of diabetes-related complications.”15 Today, all those living with Type 1 Diabetes can have better quality of life and improved glucose control, by choosing insulin therapies that best fit their individual needs. Diabetic nephropathy, the leading cause of end-stage renal disease, occurs in about 20 - 40% of patients with diabetes.18 For those with kidney disease, the average cost of dialysis treatment is $50,000 a year. The one-time cost of a kidney transplant in B.C. is approximately $20,000, with an additional yearly cost of about $6,000 for anti-rejection medications.19 It makes sense on all fronts to ensure Canadian children with T1D receive proper medical support during school hours. The cost to our health care system in not providing this support may be reason enough. Given Canada’s high incidence of T1D and its legacy as a world innovator in diabetes treatment advances, it is both ironic and tragic that Canadian school policy has not kept pace with medical recommendations to ensure its children receive care essential to them while at school. Although they are considered disabled by the federal government, and classified by the B.C. Ministry of Education as “physically disabled, chronic health impaired” (Level 2 D),21 unlike children with more visible physical disabilities, children with T1D are not always accommodated for. Until policy change occurs and a better standard of care is set, Canadian children with T1D will continue to face discrimination. It is imperative a school provide appropriate medical treatment for a diabetic child, regardless of what insulin regimen is used, to achieve glycemic target goals. The health, safety, educational potential, and emotional well-being of these children depends on it. Canadian constitutional jurisprudence and case law recognizes that persons with disabilities have the right to reasonable accommodation as, under the Canadian Charter of Rights and Freedoms, every individual has the right to equal protection and benefit without discrimination.24, 25 In Hewko v. B.C., Madame Justice Koenigsberg states “reasonable accommodation is an integral part of the [School’s] duty to consult”26 and that this “must include an accommodation of (the) home-based program.”26 Reasonable accommodation, as demonstrated in this case, involves providing a standard of care at school that considered the delivery model of and type of care provided at home so as best to provide a consistent educational program for the child. This standard required parental consultation “to ensure that [the Hewkos] were seriously considered, and, wherever reasonably possible, demonstrably integrated into the proposed plan of action.”26 For children with T1D, a consistent educational program would have staff trained in diabetes care to complement the care that they receive at home. However, this is presently not the case. Current Nursing Support Services (NSS) policy asserts that the services children with T1D need to “safely” attend school, namely the provision of insulin and glucagon administration, cannot be provided “safely” by an aide. While this policy may consider licensure, the question is raised: Does this policy or practice directly or indirectly effect, exclude, or negatively affect T1D individuals as is prohibited in the Canadian Human Rights Act.30 In the Grismer case: British Columbia (Superintendent of Motor Vehicles) v. British Columbia, it is reasonable to question if the argument that aides cannot safely care for the needs of a T1D child has a bona fide justification, especially in light of the fact that some BC school districts currently permit staff to be trained in the administration of insulin and glucagon. Has the policy put forth by NSS taken into account how these services could be provided safely, “or is this belief based in impressionistic assumptions?”30 For T1D students, the present NSS care plan policy does not consider the negative impact on learning or health that results when aides cannot give insulin to promptly treat hyperglycemia or to manage food. The current policy is unreasonable in that it forces families with young T1D children to regularly attend their child at school, and if this is not possible, to choose an insulin regime for their child they otherwise may not. The potential loss of glycemic control and consequently “instructional control, this choice implies ”26 begs the question raised in Grismer: “Is it necessary that all (T1D students) meet a single policy standard, or could varying standards be adopted”30 to meet the diverse insulin needs of T1D students? If varying standards can be adopted, then all children with Type 1 diabetes could be accommodated at school and see cognitive and health benefits that would ultimately allow them to be more receptive to learning. In March 2010, the Canadian Parliament with the support of provinces and territories ratified the United Nations Convention on the Rights of Persons with Disabilities. Canada and the Provinces are now bound by the Convention, which among other rights ensures that “effective individualized support measures are provided in environments that maximize academic and social development, consistent with the goal of full inclusion.”29 Given the ratified UN Convention and the case law in British Columbia and other Canadian provinces, parents of T1D children should have a right to expect that a home-based treatment program need not be altered to the detriment of their child’s health, simply for the convenience of Provincial Ministries or local School Boards. Every child has the right to be safe at school. References
*Unsafe At School: Advocating for Children with Type 1 Diabetes is a group of parents who are concerned about the lack of support in B.C. schools for children with T1D. Lila Yewchuk, MD, FRCPC, is a Pediatric Radiologist at B.C. Children’s Hospital in Vancouver and a Clinical Instructor in the Department of Radiology at the University of British Columbia.
John Paul Morrison is a Technology Consultant and Children’s Rights Advocate. He lives in North Vancouver, B.C. and is committed to helping children with diabetes receive the support they require in school. The following professionals in the medical community have reviewed and endorsed this letter:
GARTH L. WARNOCK, MD, MSc, FRCSC, FACS
Professor and Head Department of Surgery Co-Director, Ike Barber Human Islet Transplant Laboratory and British Columbia Islet Transplant Program University of British Columbia Vancouver General Hospital ROSS E. PETTY, MD, PhD, FRCPC Member of the Order of Canada, 2008 Professor Emeritus Division of Rheumatology Department of Pediatrics University of British Columbia BC Children’s Hospital UBC Divisional support c/o EHUD UR, MB, BS Professor and Head Division of Endocrinology and Metabolism University of British Columbia Vancouver Hospital and St. Paul’s Hospital DEREK HUMAN, MA, BM.BCh(Oxf), MRCP(UK), FRCPC Clinical Investigator, CFRI
Clinical Professor Division of Cardiology Department of Pediatrics University of British Columbia BC Children’s Hospital JANET SILVERSTEIN, MD
Head of ADA Committee that developed standards of care for children with diabetes
Pediatric Representative on the Clinical Practice Committee of the ADA
Professor, Researcher, Diabetes Advocate
Division Chief of Pediatric Endocrinology
Program Director for the Pediatric Endocrinology Fellowship
Department of Pediatrics
University of Florida
Diabetes Center of Excellence
SHUBHAYAN SANATANI, MD, FRCPC, CCDS, FHRS
Director, Cardiac Pacing and Electrophysiology
Children's Heart Centre, 1F9
British Columbia's Children's Hospital
Associate Professor, Department of Pediatrics
University of British Columbia
ERIC WEBBER, MD, FRCSC
Co-Associate Dean
Dean’s Office, Postgraduate Medical Education Associate Professor Division of Paediatric General Surgery Department of Surgery Faculty of Medicine BC Children’s Hospital MICHAEL SEEAR, MB, ChB, FRCPC Clinical Professor and Head Division of Respiratory Medicine Department of Pediatrics University of British Columbia BC Children’s Hospital JANIS DIONNE, MD, FRCPC Clinical Assistant Professor Director of Chronic Kidney Disease Division of Nephrology Department of Pediatrics University of British Columbia BC Children's Hospital KOUROSH AFSHAR, MD, MHSc, FRCSC, FAAP Assistant Professor Division of Urology Department of Surgery University of British Columbia BC Children’s Hospital MARYAM AROICHANE, MD, FRCSC Clinical Assistant Professor Division of Ophthalmology and Visual Sciences Department of Surgery University of British Columbia BC Children’s Hospital SONIA BUTTERWORTH, MD, FRCSC Clinical Assistant Professor Director of Postgraduate Education Division of Paediatric General Surgery Department of Surgery University of British Columbia BC Children’s Hospital SABRINA GILL, MD, MPH, FRCPC Clinical Associate Professor Division of Endocrinology University of British Columbia St. Paul’s Hospital PAUL MOXHAM, MD, FRCSC Clinical Associate Professor Program Director Division of Paediatric Otolaryngology-Head & Neck Surgery Department of Surgery University of British Columbia BC Children’s Hospital JOHN K. WU, MBBS, MSc, FRCP(C) Clinical Professor Division of Hematology/Oncology/BMT Department of Pediatrics University of British Columbia BC Children's Hospital CARON STRAHLENDORF, MB, BCh Clinical Associate Professor Division of Hematology/Oncology/BMT Department of Pediatrics University of British Columbia BC Children’s Hospital DAVID DIX, MBChB, FRCPC, FAAP Clinical Associate Professor Division of Hematology/Oncology Department of Pediatrics University of British Columbia BC Children’s Hospital S. ROD RASSEKH, MD, MHSc, FRCPC Clinical Assistant Professor Division of Oncology Department of Pediatrics University of British Columbia BC Children’s Hospital NAVID DEHGHANI, MD, FRCPC, FAAP Clinical Associate Professor Division of Emergency Medicine Department of Pediatrics University of British Columbia BC Children’s Hospital LISA DYKE, MD, FRCPC
Clinical Instructor Division of Emergency Medicine Department of Pediatrics University of British Columbia BC Children’s Hospital QUYNH DOAN, MD, MHSc, PhD(C), FRCPC Clinical Assistant Professor Division of Pediatric Emergency Department of Pediatrics and Emergency Medicine University of British Columbia BC Children’s Hospital JANE HAILEY, MD, FRCPC Clinical Associate Professor Division of General Pediatrics Department of Pediatrics University of British Columbia BC Children’s Hospital ROONA SINHA, MD, FRCPC Division of Hematology/Oncology Department of Pediatrics University of British Columbia BC Children’s Hospital MICHELLE ELLIOTT, OD, Hon BSc Optometrist SPECTRUM Optometry White Rock, BC MICHELLE CLARKE, MD, FRCPC Clinical Instructor Division of Emergency Medicine Department of Pediatrics University of British Columbia BC Children’s Hospital DAVID ISRAEL, MD, FCFP, FRCPC, FAAP Clinical Professor Division of Gastroenterology Department of Pediatrics University of British Columbia BC Children’s Hospital MARK RILEY, MD, FRCPC Clinical Assistant Professor Division of General Pediatrics Department of Pediatrics University of British Columbia BC Children’s Hospital NITA JAIN, MD, MCC, ABP, FRCPC Clinical Assistant Professor Division of General Pediatrics Department of Pediatrics University of British Columbia BC Children’s Hospital DAVID CABRAL, MBBS, FRCPC
Clinical Professor and Division Head
Division of Rheumatology
Department of Pediatrics
University of British Columbia
BC Children's Hospital
AVASH SINGH, MBBS, BCCE, ACLS, BCLS, FAAP, ECMO, PALS, RCPS(C)
Clinical Assistant Professor
Division of Neonatology
Department of Pediatrics
University of British Columbia
BC Children's Hospital
TARA TANDAN, MD
Clinical Instructor
Division of General Pediatrics
Department of Pediatrics
Department of British Columbia
BC Children's Hospital, Langley Hospital and Peace Arch Hospital
SUZANNE STOCK, MD, FRCPC
Clinical Assistant Professor
Division of Endocrinology
Department of Pediatrics
University of British Columbia
Lions Gate Hospital
MICHELLE JOHNSON, MD, FRCPC
Clinical Assistant Professor
Division of Endocrinology
University of British Columbia
St. Paul's Hospital
REENA KHURANA, MD, FRCPC
Endocrinologist
Fraser River Endocrinology
Surrey Memorial Hospital
GLEN WARD, MDCM, PhD, FRCPC
Clinical Faculty
Department of Pediatrics
University of British Columbia
COLLEEN POOLE, MD, FRCPC
Clinical Faculty
Department of Pediatrics
University of British Columbia
DENIS DANEMAN, MB, BCh, FRCPC
Professor and Paediatrician-in-Chief
Senior Associate Scientist (Primary focus: Type 1 diabetes)
Department of Paediatrics
Division of Endocrinology
University of Toronto
The Hospital for Sick Children
JEFFREY DAVIS, BEng, MD, FRCPC
Clinical Associate Professor
Division of Hematology/Oncology
Department of Pediatrics
University of British Columbia
BC Children's Hospital
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Helping the Student with Diabetes Succeed: A Guide for School Personnel |
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