2016 Report on. Diabetes in Saskatchewan

Transcription

1 2016 Report on Diabetes in Saskatchewan

2 2016 Report on Diabetes in Saskatchewan ABOUT THE CANADIAN DIABETES ASSOCIATION The Canadian Diabetes Association (CDA) is a registered charity that helps the 11 million Canadians living with diabetes or prediabetes. We lead the fight against diabetes by helping those affected by diabetes to live healthy lives, preventing the onset and consequences of diabetes, and discovering a cure. Dr. Charles Best, co-discoverer of insulin, helped create the Diabetic Association of Ontario in the 1940s which became the CDA in The CDA s Diabetes Charter for Canada sets out a vision that all Canadians with diabetes have the supports needed to achieve their full health potential. 1 The vision of the Canadian Diabetes Association for the Diabetes Charter for Canada is a country where people with diabetes live to their full potential. SUPPORT CARE EQUI TY The guiding principles of the Canadian Diabetes Association in developing this Charter are to: Ensure that people who live with diabetes are treated with dignity and respect. Advocate for equitable access to high quality diabetes care and supports. Enhance the health and quality of life for people who live with diabetes and their caregivers. Canadians Living with Diabetes* Have the Right to: Be treated with respect, dignity, and be free from stigma and discrimination. Affordable and timely access to prescribed medications, devices, supplies and high quality care, as well as affordable and adequate access to healthy foods and recreation, regardless of their income or where they live. Timely diagnosis followed by education and advice from an interprofessional team which could include the primary care provider, diabetes educator, nurse, pharmacist, dietitian and other specialists. Emotional and mental health support, as well as support for their caregivers if needed. Be an active partner in decision making with their health care providers. Have access to their medical records and other health information when requested, and have it easily understood. Diabetes information, education and care that take into account a person s age, culture, religion, personal wishes, language and schooling. Have their eyes, feet, kidneys, blood glucose control, cardiovascular risk factors and mental health checked as often as recommended by current clinical practice guidelines. *and their informal caregivers where relevant Affordable access to insurance coverage. Fully participate in daycare, pre-school, school and extracurricular activities, receiving reasonable accommodation and assistance if needed. Supportive workplaces that do not discriminate and make reasonable accommodation as needed. Appropriate and seamless transitional care that recognizes the progression of the disease. Canadians Living with Diabetes Have the Responsibility to: Self-manage to the best of their abilities and personal circumstances, including a healthy diet, exercise, following care plans and attending appointments. Be honest and open with health providers about their current state of health so that the most suitable care plans can be created. Actively seek out education, information and support to live well with diabetes. Respect the rights of other people with diabetes and health care providers. Governments Have the Responsibility to: Form comprehensive policies and plans for the prevention, diagnosis, and treatment of diabetes and its complications. Collect data on diabetes burden, such as costs and complications, and to regularly evaluate whether progress is being made. Guarantee fair access to diabetes care, education, prescribed medications, devices, and supplies to all Canadians, no matter what their income or where they live. Address the unique needs and disparities in care and outcomes of vulnerable populations who experience higher rates of diabetes and complications and significant barriers to diabetes care and support. Implement policies and regulations to support schools and workplaces in providing reasonable accommodation to people with diabetes in their self-management. Health Care Providers Have the Right to: Ongoing training, funding and tools needed to provide high quality diabetes care. Work in well-coordinated teams, either at the same location or virtually where support from specialists who provide diabetes care can be obtained within a reasonable time. Health Care Providers Have the Responsibility to: Treat people with diabetes as full partners in their own care. Learn and apply up-to-date evidenced-based clinical practice guidelines when caring for people with diabetes. Diagnose people living with diabetes as early as possible. Help people with diabetes and their caregivers navigate the health care system. Schools, Pre-schools, and Daycares Have the Responsibility to: Ensure staff and the child s peers have accurate information about diabetes, provide a safe environment for diabetes self-management and protect children with diabetes from discrimination. Workplaces Have the Responsibility to: Create an environment where people can reach their full potential by providing accommodation and eliminating discrimination against people with diabetes. The Canadian Diabetes Association Has the Responsibility to: Strongly advocate for the rights of people living with diabetes on behalf of Canada s diabetes community. Raise public awareness about diabetes. Work to ensure the accuracy of information about diabetes in the public domain. Partner with researchers to improve the planning, provision and quality of diabetes care by promoting and applying research. Advocate for equitable access to diabetes care, education, medications, devices, and supplies. diabetes.ca BANTING CARE EQUITY SUPPORT CARE EQUITY SUPPORT CARE EQUITY SUPPORT CARE EQUITY SUPPORT The report was supported by an unrestricted grant from Novo Nordisk Canada. Suggested citation: Canadian Diabetes Association. (2016) Report on Diabetes in Saskatchewan. Toronto, Ontario: CDA.

3 TABLE OF CONTENTS About the Canadian Diabetes Association 1 Executive Summary 3 Introduction 3 Methods and data sources 4 Diabetes in Saskatchewan 5 Modifiable risk factors 5 Chapter 1: Diabetes cost and care gaps 7 Renee s story 7 Insulin pump coverage 8 Cost of diabetes management 9 Diabetes care gaps 10 Chapter 2: Diabetes among Indigenous Peoples 11 Florence s story 11 Indigenous Peoples and diabetes 12 Food insecurity 14 Chapter 3: Diabetes in schools 14 Melissa s story 14 Children with diabetes in school 15 Chapter 4: Canadian Diabetes Association s recommendations 16 Implementing a diabetes care pathway 16 Expanding insulin pumps and supplies coverage 17 Keeping children with diabetes safe in schools 18 Conclusion 19 References 19 diabetes.ca/charter 1

4 EXECUTIVE SUMMARY Approximately 314,000 people in Saskatchewan, or about 29 per cent of its population, are living with diabetes or prediabetes. In the next decade, the number of Saskatchewanians diagnosed with diabetes will increase by 37 per cent. Uncontrolled diabetes puts people at higher risk of serious and costly complications, including heart attack, stroke, vision loss, kidney disease and amputation. Diabetes is costing Saskatchewan s health-care system $96 million a year. Saskatchewan has high rates of many modifiable risk factors that contribute to the rising diabetes prevalence: the province has low fruit and vegetable consumption, low physical activity rates, heavy tobacco use and a high prevalence of overweight and obesity. Approximately 57 per cent of adults and 20 per cent of youth are either overweight or obese. The prevalence of most of these risk factors in the province remained consistently higher than the Canadian average over the past decade. Some populations bear a disproportionately heavier burden of diabetes, including those of Asian, South Asian, African, Hispanic descent and Indigenous Peoples. In addition to far higher prevalence of diabetes and diagnoses at younger ages, Indigenous communities can face multiple barriers to effectively prevent and manage diabetes, such as higher prevalence of food insecurity, higher food prices, higher prevalence of risk factors related to type 2 diabetes, less access to programs and services, lack of proper infrastructure and a wide range of social determinants of health such as low income, low level of education and inadequate housing. The burden of diabetes and associated risk factors, along with the lack of access to essential supports for healthy living for Indigenous communities, demand the Government s urgent attention, given the large Indigenous representation in this province. This report brings attention to the financial constraints that limit people s ability to effectively manage their diabetes in the province. A considerable proportion of Saskatchewanians with diabetes said they faced difficulty affording prescription medications and supplies. Public coverage for diabetes supports is available, but to varying degrees, and not to everyone who needs it. For example, due to the age limit within the qualifying criteria for public funding of insulin pumps and supplies, many people with type 1 diabetes are denied access to this option. In addition to the cost burden, diabetes care gaps create a significant barrier to optimal diabetes management. A significant percentage of people with diabetes in Saskatchewan are not receiving screening tests at the frequency recommended by the CDA s Clinical Practice Guidelines (Guidelines), such as A1C tests, foot exams, urine protein tests and dilated eye exams. These tests are essential to ensure diabetes is optimally managed and facilitate early detection of complications. The stories you will read within this report are true experiences of people living with diabetes in Saskatchewan. The CDA advocates to governments for policies on a broad range of issues that will improve the health of people with diabetes, prevent diabetes and its complications, and reduce health-care costs associated with diabetes. Given the burden of diabetes and the findings presented in this report, the CDA urges the Government to implement the following priority recommendations in this province: Develop and implement a standard provincial diabetes care pathway, including strengthened interprofessional team care and enhanced access to endocrinologists, diabetes educators and diabetes centres across RHAs, in consultation with the CDA. Expand the insulin pump programs to all people with type 1 diabetes who are medically eligible; Support, adopt and promote the CDA s Children with Diabetes in Schools Guidelines Report on Diabetes in Saskatchewan

5 INTRODUCTION Diabetes is increasing at an alarming rate in Saskatchewan, affecting many people and their families, and contributing to the ever-increasing health budgets across the province. The 2016 Report on Diabetes in Saskatchewan presents the burden of diabetes and the tough realities of living with diabetes in this province. We invited three individuals to share their stories of living with diabetes. They touched upon the availability and accessibility of services, supports, and the psycho-social aspects of the disease. We also present the most up-to-date data related to the burden of diabetes, complications, risk factors, and the care received. In the final chapter of the report, we offer the Government of Saskatchewan our recommendations on priorities that require urgent attention in order to bend the impact curve of diabetes in the province. Effective diabetes management can prevent or delay the devastating and potentially life-threatening complications, such as heart attack, stroke, vision loss, kidney failure and amputation. However, some Saskatchewanians with diabetes do not have the financial resources to pay for prescribed medications, devices, supplies or other supports to avoid complications. To these people, diabetes management means choosing between rent and medications, or stretching their use of supplies so they would last longer (e.g. glucose monitoring strips, decreasing medication doses). Every year, uncontrolled diabetes contributes to 30 per cent of strokes, 40 per cent of heart attacks, 50 per cent of kidney failure that requires dialysis and 70 per cent of non-traumatic amputations in hospitals. All people with diabetes deserve affordable and timely access to medications, devices, supplies, high quality care, healthy foods and other needed supports to effectively manage their diabetes, regardless of their income, or where they live. This is our vision for all people with diabetes in Saskatchewan. We also believe all Saskatchewanians with diabetes deserve to have full support from government and the whole of society to achieve their health potential. This report acts as guide to achieve this vision. This vision was outlined in the CDA s Diabetes Charter for Canada (Charter) released in Built by over 200 people affected by diabetes across the country including the diabetes community in Saskatchewan, this Charter presents what the diabetes community believes are fundamental rights and responsibilities for people with diabetes, their caregivers, health-care professionals, governments, employers and schools in Canada that will allow people with diabetes are well supported to live healthy lives. METHODS AND DATA SOURCES Data provided in this report were drawn primarily from Government of Saskatchewan and Statistics Canada sources. CDA estimated out-of-pocket costs for Saskatchewanians with type 1 and type 2 diabetes based on composite case studies. CDA also estimated diabetes prevalence and projections based on national surveillance data. This report includes the most recent available data to describe the prevalence of diabetes and modifiable risk factors. The provincial rates of modifiable risk factors are presented in age-standardized rates for ease of comparison with Canadian average rates, but crude rates were used to indicate the prevalence of these factors in the regions. It is important to note that onreserve First Nations Peoples are excluded from national surveys administered by Statistics Canada; so are people without a fixed address. Also note that Statistics Canada estimates presented in this report are self-reports, which may be subject to reporting bias, especially for socially undesirable behaviours. Hence, these data likely underestimate the burden of diabetes and modifiable risk factors in the province. To facilitate a deeper understanding of how diabetes impacts everyday lives of Saskatchewanians with the disease, we included personal stories from people with diabetes and their family members who shared their experiences about the challenges and successes in managing diabetes. diabetes.ca/charter 3

6 DIABETES IN SASKATCHEWAN MODIFIABLE RISK FACTORS Based on government surveillance data, the CDA estimates that 97,000 people are living with diabetes (diagnosed) in Saskatchewan, representing 8.8 per cent of the total population. Between 2006 and 2016, the number of people diagnosed with diabetes has increased by about 58 per cent. By 2026, we estimate that the number of Saskatchewanians diagnosed with diabetes will increase to 132,000, representing a 37 per cent increase.2 While diabetes risk is influenced by a number of factors that are out of an individual s control, such as age, ethnicity, gender and family history, several risk factors can be modified through behaviour change to reduce the risk of type 2 diabetes and improve the management of diabetes. In this report, we focus on unhealthy diet, physical inactivity and tobacco use. We also report on the prevalence of overweight and obesity, which are key risk factors for type 2 diabetes. The fact that approximately 8.8 per cent of the population have diabetes is alarming, but this does not represent the full burden of diabetes because many people have diabetes but are undiagnosed. Many others also have prediabetes, a precursor to type 2 diabetes. With undiagnosed diabetes and prediabetes factored in, the CDA estimates that 314,000 people are currently live with diabetes or prediabetes in Saskatchewan, representing 29 per cent of the province s population. A significant proportion of Saskatchewanians are inactive and do not eat enough fruit and vegetables. In 2014, 47 per cent of Saskatchewan residents were inactivei during leisure time (43 per cent in men and 51 per cent in women).4 The most active age group was those between years old, but from this point on, physical activity decreased with age. Only 36 per cent of Saskatchewan residents reported eating fruits and vegetables at least five times a day, which was lower than the Canadian average; the rate was much lower in men (29 per cent) than in women (43 per cent). The lower consumption of fruits and vegetables was consistently reported between 2003 and The Government of Saskatchewan recently reported that diabetes is 2.8 times higher among those with ischemic heart disease (reduced blood supply to the heart) and 3.2 times higher among those with heart failure. 3 The CDA estimates that in 2016, diabetes costs the province over $96 million in direct healthcare costs, including hospitalizations, doctor visits and inpatient medications. i Respondents are classified as active, moderately active or inactive based on an index of average daily physical activity over the past 3 months Report on Diabetes in Saskatchewan

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8 CHAPTER 1: Diabetes cost and care gaps Report on Diabetes in Saskatchewan

9 Renee s story Renee Mochnacz was diagnosed with type 1 diabetes at age 10. As an adult, she finds it hard to juggle grocery bills and expensive diabetes supplies. Her $6,000 insulin pump will need to be replaced in two years, at her own personal expense. Renee told us how she makes the best of what she has to manage her diabetes. It is not unusual for a young working person to scrimp and save in order to afford a big purchase. But while other 30-somethings look forward to buying new cars or vacations, Regina-based Renee Mochnacz has to set aside a few dollars from every pay cheque in order to afford a new insulin pump. The 33-yearold hospital unit support service worker, who has had type 1 diabetes since the age of 10, figures she has just two years to come up with $6,000 to replace her current insulin pump, which is already halfway through its five-year life expectancy. I am a good saver, but I do find it a bit of a struggle to budget for everything, she says. Managing her diabetes puts a significant dent in Renee s income. Infusion sets, insulin and test strips cost about $4,000 per year, and that price tag doesn t account for incidentals such as alcohol wipes, lancets, needles or dextrosol (for treating hypoglycemia). With no public plan to cover these costs, Renee considers herself lucky to have workplace health insurance to help ease the financial burden. But even though her insurer recently increased coverage of diabetes supplies, with no limit on test strips, Renee estimates she will still have to pay close to $2,000 a year out of pocket for her infusion sets and insulin alone. That s a significant amount of money and the cost can add up quickly, she says. Renee s limited budget is also stretched by her grocery bills. You can t underestimate how important it is to a person with diabetes to eat healthy foods, but vegetables and fruits for a week and a half can cost me up to $100 or more, she says. You need to be rich to have diabetes. Despite the financial challenges, Renee does all that she can to maintain her health. She started using an insulin pump two years ago on the advice of her endocrinologist, who suggested that it would offer her better blood sugar control and flexibility. She was training for a triathlon at the time, and the pump allowed her to quickly adjust her insulin dose to her activity level. Although arthritis has recently restricted her ability to run, she still regularly works out at the gym. I m choosing to stay active so that I will avoid or at least limit the short and long-term complications that can come with diabetes, she says. Renee gives a lot of credit for her current diabetes management to the early care and education she received as child. But she worries about the limited availability of specialized diabetes care in Saskatchewan, especially since the number of people with diabetes is rising significantly. There is a shortage of certified diabetes educators, she says, and with only eight endocrinologists in the city (none of them specializing in pediatrics and not all working full-time), people often wait six to eight months or even two years (depending on the endocrinologist) for appointments. We need more certified diabetes educators and more endocrinologists. And we need to take the age limit off public funding of insulin pumps, Renee urges. I have been so lucky to have a loving family, a support system through my diabetes clinic, and doctors who want to help me continue to do well. Not everyone is so fortunate. 7

10 Report on Diabetes in Saskatchewan

11 INSULIN PUMP COVERAGE Coverage for diabetes medications, devices and supplies varies across Canadian provinces, resulting in inequitable access to these essential supports for diabetes management. For people with type 1 diabetes in Saskatchewan who are using an insulin pump, or for whom insulin pump therapy is recommended, not all of them have access to public funding for pumps and supplies. Saskatchewan has an insulin pump program that provides financial support for people with type 1 diabetes aged 25 and younger who require a pump to adequately stabilize glycemic levels and who meet eligibility criteria. 11 The program covers the cost of a pump at an average of $6,000 $7,000; a pump is typically replaced every 5 years. Pump supplies are covered for individuals aged 17 years old and under. 12 For people with type 1 diabetes relying on insulin pump therapy, turning 26 means they will need to find other means to pay the cost of the pump and supplies or pay out of their own pocket. Currently, Alberta, Ontario, the Territories and NIHB fund insulin pumps and supplies for eligible individuals without age restrictions (Table 1). Table 1: Public funding for insulin pumps and supplies in Canada, age thresholds PROVINCE/TERRITORY INSULIN PUMPS PUMP SUPPLIES British Columbia 25 and under All ages Alberta All ages All ages Saskatchewan 25 and under 17 and under Manitoba 17 and under 17 and under Ontario All ages All ages Quebec 17 and under 17 and under New Brunswick 18 and under 18 and under Nova Scotia 25 and under 25 and under Prince Edward Island 18 and under 18 and under Newfoundland and Labrador 24 and under 24 and under Yukon/Nunavut/Northwest Territories All ages All ages Non-Insured Health Benefits program All ages All ages COST OF DIABETES MANAGEMENT In Saskatchewan, public coverage for drug therapy to treat diabetes varies based on a person s income level and prescribed therapy the level of coverage impacts out-of-pocket costs. For insulin pump therapy, qualifying for public funding is based on age. People with type 1 diabetes who rely solely on public plans to cover diabetes management costs may spend thousands a year managing their disease. The CDA estimates that a person taking insulin through multiple daily injections can spend anywhere between $700 $2,700 a year to manage their diabetes.ca/charter 9

12 diabetes; a person using an insulin pump may need to spend over $6,000 a year. People living with type 2 diabetes may have to pay between $900 and $1,900 for their medications and supplies depending on their income and whether they have reached retirement age. A person earning an average income of $40,000 may receive zero coverage from the public plan, but could have half of his costs covered when he reaches 65 years of age. The outof-pocket costs can be particularly challenging for people earning a lower income. Even with private insurance, cost may still be an issue for those with diabetes, due to incomplete coverage or difficulty in obtaining insurance for an existing illness. A considerable proportion of Prairies residents ii with diabetes surveyed by Statistics Canada in 2011 indicated they had no insurance to cover for prescription drugs (13 per cent), blood glucose monitoring equipment or supplies (32 per cent), dental expenses (35 per cent), and eye care visits (23 per cent). Insurance plans are not always accessible to those with diabetes: 27 per cent of people with diabetes in Saskatchewan and Manitoba said they had difficulty obtaining insurance due to their diabetes, and 22 per cent said the cost of diabetes impacted their adherence to treatment. 13 The impact was most significant on lower income earners. DIABETES CARE GAPS Regular screening for complications and comorbidities, and assessment of glycemic control are essential in diabetes care and management. The CDA s Guidelines recommend, among other tests, that people with diabetes receive an A1C test every 3 months (every 6 months for those who have consistently achieved targets), a foot exam every year to identify risk for ulceration and infection, a urine protein test every year to screen for kidney disease iii, and a dilated eye exam every one to two years iv to check for retinopathy. 14 A high percentage of people with diabetes in Saskatchewan do not receive recommended screening tests as frequently as they should for optimal diabetes care. A Statistics Canada survey found significant gaps in diabetes care: in 2007, over half of people with diabetes in Saskatchewan did not receive an annual foot check by health-care professionals, about 20 per cent did not have a urine protein test, and 18 per cent did not have any A1C test done in the previous year; about 30 per cent did not receive a dilated eye exam in the previous 2 years. 15 Only 37 per cent received all four care components. As CDA Guidelines recommended an A1C test for a six-month interval at the least, Statistics Canada survey data on A1C tests may not reflect the actual proportion of Saskatchewanians with diabetes that had A1C tests at the recommended frequency. iii The initial urine protein test should be done at diagnosis for type 2 diabetes, and five years after diagnosis for type 1 diabetes. The test should be repeated yearly. iv A dilated eye exam should be done at diagnosis for type 2 diabetes with ii Saskatchewan-specific information is unavailable. rescreening every 1-2 years, and five years after diagnosis for type 1 diabetes II Saskatchewan-specific information is unavailable. (15 years and older) with annual rescreening. iii The initial urine protein test should be done at diagnosis for type 2 diabetes, and five years after diagnosis for type 1 diabetes. The test should be repeated yearly. iv A dilated eye exam should be done at diagnosis for type 2 diabetes with rescreening every 1-2 years, and five years after diagnosis for type 1 diabetes (15 years and older) with annual rescreening Report on Diabetes in Saskatchewan

13 Table 2: Percentage of Saskatchewan residents with diabetes who reported having received recommended care components, 2007, age-standardized rates RECOMMENDED CARE COMPONENT SASKATCHEWANIANS WITH DIABETES RECEIVING TEST A1C test in the past 12 months 82% Feet check by health-care professionals in the past 12 months 48% Urine protein test in the past 12 months 79% Dilated eye exam in the past 2 years 71% All four exams as per recommendations 37% Source: Canadian Institute for Health Information, based on 2007 Canadian Community Health Survey Education is another important component in diabetes management. For people with type 2 diabetes, diabetes education is associated with benefits such as reductions in A1C, improved quality of life, weight loss and cardiovascular fitness. 14 Diabetes education is imbedded in chronic disease management programs across the RHAs, but according to CDA s survey of Canadians with diabetes in 2015, 21 per cent of people residing in Saskatchewan and Manitoba said they were not directed to diabetes education when diagnosed with diabetes, and many said they had never attended these programs or seen a diabetes educator. 13 While diabetes education is usually available somewhere within an RHA, access to other essential aspects of diabetes care, such as endocrinologists, foot care/podiatry services, gestational diabetes care, and rural diabetes clinics varies from region to region. Residents of northern Saskatchewan do not have similar access to diabetes care as those residing in other regions due to lack of health services and shortage of health-care professionals amidst other challenges unique to the North. 16 Provincial initiatives have been introduced to improve chronic disease management, such as the Chronic Disease Management-Quality Improvement Program (CDM-QIP) which aims to improve the continuity and quality of care for patients by encouraging the best practice in chronic disease management by healthcare providers. Whether these services have reached or are available to the majority of people with diabetes across RHAs has yet to be evaluated. diabetes.ca/charter 11

14 CHAPTER 2: Diabetes among Indigenous Peoples Report on Diabetes in Saskatchewan

15 Florence s story Cree Elder Florence Highway sees first-hand the devastating impacts of diabetes on reserves. Living with type 2 diabetes herself, she shares her story of learning to effectively manage her diabetes and observations of what is urgently needed in reserve communities to address the burden of diabetes. When Florence Highway was diagnosed with type 2 diabetes 24 years ago, she knew little about the disease and received next to no information about how to care for herself. My doctor handed me a big bag of pills and some lancets and told me to gain some weight (she was underweight at the time). I didn t feel sick or in pain, so I only took the pills occasionally, she says. It wasn t until she was referred to a dietitian two years later, when her blood sugar and blood pressure levels were out of control, that she finally learned how to manage her diabetes through healthy eating, regular physical activity and taking her medication as prescribed. Receiving proper education about managing her diabetes has made an incredible difference in Florence s life: today, at age 68, her blood sugar control, blood pressure and overall health are good, and she has yet to show any signs of long-term complications from her diabetes (such as kidney disease or nerve damage). For the past eight years, she has been sharing her journey about living well with diabetes as a volunteer with the Canadian Diabetes Association s travelling diabetes resource program. Along with fellow volunteer Evelyn Linklater, she travels from her Saskatoon home to remote areas of the province to talk to First Nations people about diabetes prevention and management. Language is often a barrier to getting good diabetes information, but Evelyn and I are First Nations and speak Cree, she says. We use simple, non-medical terms to explain diabetes and to encourage people to take their medication and look after themselves. Florence knows that translating information into action can be very difficult for people living on reserves and in isolated communities. I get frustrated because food is so expensive on the reserves, she says. We can make all kinds of recommendations about healthy eating, but how can people make healthy choices when they can t afford to pay megabucks? When milk is $15 and pop is only $2, when fresh fruits and vegetables if you can get them! are a luxury? Physical activity, too, can be challenging in communities that don t have indoor facilities, parks or even paved roads. Florence and Evelyn try to make suggestions that fit the realities of reserve life. For example, they encourage people to go for walks in groups of two or three in case they run into wild dogs. Community Elders also have a role to play, passing along traditional knowledge about hunting and fishing. The kids watch them and start to get interested, then the Elders invite them to join in. It is a gentle way of teaching kids about traditional ways, she says. Florence also worries about the limited availability of health services, as many First Nations people receive care only from a nursing station or fly-in healthcare providers. In those communities with limited access to health-care and information, you see a lot of wheelchairs, she says, referring to people who have lost limbs due to diabetes-related complications. Increased funding for services in these communities would certainly help, she says, but she would also like to see increased understanding of the realities of living with diabetes on a reserve. I would like politicians to spend one day in an isolated community, see how people eat and experience the hardships that they go through. 13

16 INDIGENOUS PEOPLES AND DIABETES Close to 158,000 First Nations, Métis and Inuit people live in Saskatchewan, representing about 16 per cent of the province s population. 17 In 2011, Regina and Saskatoon were among Canadian cities with the largest proportion of Indigenous Peoples. 18 About 72,000 First Nations people in Saskatchewan live on reserves v. 19 The prevalence of type 2 diabetes among First Nations Peoples has been consistently reported as higher than the general Canadian population. Studies have shown that First Nations and Métis children and youth have higher rates of type 2 diabetes, and First Nations people are diagnosed with type 2 diabetes at an earlier age. In addition, Indigenous women have higher rates of gestational diabetes, and Indigenous people with diabetes experience high rates of complications and higher mortality rates. A population-based study found that diabetes was non-existent among Saskatchewan First Nations in 1937, almost 10 per cent were diagnosed by 1990, and over 20 per cent had diabetes by 2006, while diabetes rates in the general population remained around 6 per cent. 21 Between 1980 and 2005, diabetes prevalence more than doubled among First Nations women, and more than tripled among First Nations men (Table 3). The number of new diabetes cases peaked between ages 40 49, while it was age 70 or older for the non- Indigenous Canadian population. v Table 3: Age-standardized diabetes prevalence rates in First Nations and non-first Nations in On Reserve includes individuals living on Crown land and on other lands affiliated with First Nations operating under Self-Government Saskatchewan, 1980 and 2005 Agreements First Nations men 4.9% 16% First Nations women 9.5% 20.3% Non-First Nations men 2% 6.2% Non-First Nations women 2% 5.5% Source: Dyck et al Throughout Canada, on-reserve and remote communities face unique challenges such as poverty, poor housing, insufficient infrastructure, fragmented program delivery, lack of accurate data, and limited access to essential health services. These challenges and the remoteness of these communities contribute to a heavier burden from diabetes complications, lack of access to health services, higher prevalence of modifiable risk factors, low retention of health-care professionals and delayed diagnosis of diseases. 23 Indigenous people who have migrated to urban cities also face barriers to health services, as they are over-represented in Canada s overall homeless population. These issues combined with a lack of trust or faith in the health system and other factors associated with colonization can prevent optimal management of diabetes. The table below illustrates higher prevalence of key risk factors that contribute to type 2 diabetes in First Nations people living off-reserve and Métis people in Saskatchewan compared to non-indigenous people; the differences in rates are most pronounced in food insecurity (3 4 times higher) and tobacco use (more than twice as high). 24 v On Reserve includes individuals living on Crown land and on other lands affiliated with First Nations operating under Self-Government Agreements Report on Diabetes in Saskatchewan

17 Table 4: Modifiable risk factors in First Nations and Métis, compared to non-indigenous population, four year estimates, Saskatchewan, , age-standardized OVERWEIGHT OR OBESITY IN ADULTS (18+) OVERWEIGHT OR OBESITY IN YOUTH (12-17) FRUITS & VEGETABLE ( 5 TIMES/DAY) FOOD INSECURITY, MODERATE OR SEVERE PHYSICAL INACTIVITY TOBACCO USE First Nations (off-reserve) 58.8% 36.6% 27.7% 21% 52.6% 54.5% Métis 65.4% 22.3% 38.2% 16.3% 48.4% 40.8% Non- Indigenous 54.6% 19.7% 39.4% 5.1% 46.6% 21.6% Source: Canadian Community Health Survey Results from the Canadian First Nations Diabetes Clinical Management Evaluation (CIRCLE) study confirm the dire situation caused by diabetes burden and gaps in care and services in these communities. 25 Among the 19 First Nations communities recruited for the study, more than 40 per cent of the diabetes patients were diagnosed before age 40, 55.1 per cent suffered from chronic kidney disease, 17.7 per cent from eye disease, 13.3 per cent from coronary artery disease among other complications. Many diabetes patients were living with co-morbidities: 92.6 per cent had hypertension, 82.8 per cent had dyslipidemia, 23.4 per cent were overweight, 68.7 per cent were obese and 21.1 per cent were depressed. Diabetes care was found to be lacking based on clinical measures: about one-third were at target for key clinical measures (A1C, blood pressure, LDL-C), and only 6.7 per cent were at target for all three. The outcomes were worse in isolated communities. FOOD INSECURITY Food security is defined as having physical and economic access to sufficient, safe and nutritious food to meet one s dietary needs and food preferences for an active and healthy life at the WHO s 1996 World Food Summit; Canada adopted this definition at the summit. 26 When a person experiences food insecurity, this may mean he/she is concerned about running out of food, unable to afford a balanced diet or nutritious foods, hungry, or skipping meals. The inability to afford a healthy diet can, in turn, compromise one s ability to adhere to prescribed treatment for their diabetes. According to CDA s 2015 survey of people with diabetes, many had to choose between paying for food, rent and utilities and buying medications. In 2014, close to 11 per cent of Saskatchewan households were reported to experience some level of food insecurity, similar to the Canadian average. 27 Statistics Canada survey shows off-reserve First Nations and Métis Peoples are far more likely to report moderate or severe food insecurity than non-indigenous people. 24 diabetes.ca/charter 15

18 CHAPTER 3: Diabetes in schools Report on Diabetes in Saskatchewan

19 Melissa s story Melissa Johnson s two children both have type 1 diabetes. She told us about how this journey began and what she needs to do to make sure their school is a safe place for her children. The beginning of school should be a time of excitement and anticipation for children and parents alike. As Melissa Johnson and her family discovered five years ago, concern for a child s safety may overshadow the experience when kids need to add insulin pens and blood glucose monitors to their backpacks. Melissa s son, Salem, was nine years old and just weeks away from starting grade 4 when he was diagnosed with type 1 diabetes. Although the family received excellent care and education at Regina General Hospital, they felt like the lone rangers when it came to managing Salem s condition at his school in Norquay. No other student had diabetes, so it was up to Melissa to go on an information-finding mission about how to manage Salem s condition while at school. I had to find out not just for myself, but for the teachers and staff as well how to make sure that school was a safe place for my son, she says. It was a very nerve-wrecking. Fortunately, the school principal was very supportive and agreed to be trained how to inject insulin, along with the school secretary and Salem s teacher. He also welcomed Melissa s initiatives to make a presentation to Salem s classmates about diabetes, post diabetes information sheets in hallways and classrooms, and store juice boxes (to treat any episodes of low blood sugar) throughout the school. When Salem s sister, Emma, was diagnosed with type 1 diabetes two years later, the family and the school were much better prepared. Still, each September Melissa updates health information sheets about each child, distributes new photocopies about the signs of high and low blood sugar levels, and talks to teachers about the extra level of supervision that her children require. Just last year I had to remind a teacher not to leave Emma (now 16 years old) alone when she has low blood sugar. It s not safe, she says. Despite the intensive work involved in preparing her children s school for their diabetes, Melissa recognizes that her family has been incredibly lucky. As a volunteer with the Canadian Diabetes Association, she has met parents whose schools offer little to no support for their children with diabetes. I met one mother who has to drive 40-minutes each way to give her child insulin at lunchtime because no one at the school will do it. It s had a terrible effect on her work and personal life, she says. At another school, the principal adamantly refused to let diabetes disrupt the classroom. What s needed, says Melissa, is a consistent approach to supporting children with diabetes in school. There should be a form or individualized care plan that provides the schools staff with specific information and instructions about the student s daily diabetes management and emergency plans. This document should be standardized so that no matter what school a child attends in Saskatchewan, the teachers will recognize it. Everyone parents, teachers and school administrators should have a clear understanding of their roles and responsibilities when it comes to ensuring that children with diabetes stay safe and healthy at school, she says. 17

20 CHILDREN WITH DIABETES IN SCHOOL In Canada, 1 in 300 children have diabetes, this means most schools in Saskatchewan have at least one student with diabetes at any given time. These children and their families are in need of better support to effectively manage their diabetes while attending school. To prevent serious problems from occurring, from emergency situations such as severe hypoglycemia (low blood sugar) to long-term complications due to ongoing high blood sugar, they need to watch their blood sugar levels closely and carefully balance diet and exercise with insulin intake (for those with type 1 diabetes) every day, including during the 30 to 35 hours they spend in school per week. While most students can manage their diabetes independently, some may need help with blood glucose testing or insulin administration. The level of support for diabetes management is inconsistent and varies from one school board to another, and from school to school. Some schools have protocols for emergency situations, while others do not. The lack of and inconsistent support for children with diabetes in school can result in life-threatening situations, parents having to leave work or even exit the work force to attend to their children s diabetes needs at school, or children being withdrawn from school activities. The level of knowledge about diabetes and diabetes management also varies among school personnel. Misinformation or lack of knowledge about diabetes can result in children not being allowed to manage their diabetes in a safe environment, or excluded from being full and equal participants in school Report on Diabetes in Saskatchewan

21 CHAPTER 4: CDA s recommendations Across Canada, the CDA advocates to all levels of government to improve conditions for people with diabetes and to prevent diabetes and associated complications. These include government policies to protect children with diabetes in school in every province and territory; adoption of our recommendations to prevent amputation; improved access to diabetes supports such as medications, devices, supplies and healthy foods; enhanced diabetes care and screening; reduction in stigma and discrimination related to diabetes; making disability tax credit available to all people with type 1 diabetes; restricting marketing of foods and beverages to children; and implementation of a tax on sugarsweetened beverages. The CDA s Diabetes Charter for Canada identifies many of these important aspects. In this report, we chose to focus on three areas for immediate policy action from the Government of Saskatchewan. Implementing a diabetes care pathway The Canadian Diabetes Association will work with the Government of Saskatchewan to articulate a pathway for diabetes care specifying the supports needed for optimal diabetes management, including a recruitment and retention strategy for endocrinologists, coordinated diabetes teambased care, and expansion of diabetes education centres. The Government has shown strong leadership and understanding of the key role of pathways in improving health-care, by developing clinical pathways for acute stroke care and lower extremity wound care, as well as pathways to help patients better navigate their care journey for joint replacement, bariatric surgery, back pain, prostate cancer and pelvic floor conditions. Saskatchewanians with diabetes need a diabetes care pathway to help them manage their diabetes more effectively. Such a pathway will empower people with diabetes to actively participate in their own care, improve the organization of care, and promote team-based care and interprofessional collaboration, leading to reduced complications and hospitalization due to diabetes and increased patient satisfaction with care. To improve patient self-management and outcomes, diabetes care should be delivered using evidencebased strategies including self-management support and education by trained professionals, and teambased care with expansion of professional roles. diabetes.ca/charter 19

22 The approach to care should be coordinated, and consistently offered across the province. Moreover, diabetes care should be supported by a clinical information system that includes electronic patient registries, clinician and patient reminders, decision support, audits and feedback. Discussions around developing a diabetes pathway need to include capacity building to implement the pathway, including access to certified diabetes educators and diabetes specialists such as endocrinologists as part of interprofessional teams. According to the Canadian Medical Association, there are 8 endocrinologists in Saskatchewan, which translates in 0.7/100,000 population, the lowest ratio in Canada, when the Territories and Prince Edward Island are excluded (Table 5). 28 In reality, this ratio is actually lower, given that not all of these endocrinologists practice full time patient care. The Government should implement a recruitment and retention strategy for endocrinologists as an urgent first step. The Government is also urged to increase the accessibility and availability of diabetes educators through appropriate expansion and placement of the diabetes care centres in the province. Table 5: Number of physicians and physicians/100,000 population in endocrinology/metabolism in Canada, 2016 PROVINCE/TERRITORY PHYSICIANS PHYSICIAN/100,000 POPULATION N.L P.E.I N.S N.B Que Ont Man Sask Alta B.C Territories Canada Source: Canadian Medical Association Report on Diabetes in Saskatchewan

23 Expanding insulin pumps and supplies coverage The Canadian Diabetes Association recommends that the Government of Saskatchewan expand coverage for insulin pumps and pump supplies to all people with type 1 diabetes, without age limitations. The current insulin pump program provides coverage for pumps every five years up to age 25, and the government also covers full cost of pump supplies up to age 17. The CDA estimates that in 2016, 5,500 people in Saskatchewan have type 1 diabetes. If diabetes is poorly managed, these people are at risk for potentially debilitating and life-threatening complications. There is evidence that an intensive insulin therapy using an insulin pump can lead to better glucose control over multiple daily injections of regular or long-acting insulins for individuals who are clinically eligible. When the cost of treating downstream complications are considered, an investment into an expanded insulin pump program now will improve health outcomes in people with diabetes in Saskatchewan, resulting in $1.2 million in net savings for the province by Critical to the success of an expanded insulin pump program, is a sufficient number of health-care professionals to support uptake, education and achievement of treatment goals. Keeping children with diabetes safe in schools The Canadian Diabetes Association urges the Government of Saskatchewan to support, adopt, and promote the Canadian Diabetes Association s Children with Diabetes in School guidelines. Students spend 30 to 35 hours a week in school. While most students can manage diabetes on their own, some may require assistance such as blood sugar testing, medication administration or treating hypoglycemia. Currently, there is stigma and misunderstanding about diabetes and the needs of children with diabetes in schools and school boards, and some students are being put into life-threatening situations as a result. The level of support varies across school boards and schools. Standards are required to address the varying levels of support for children with diabetes attending school, and to provide adequate support for optimal diabetes management. Across Canada, five out 13 jurisdictions have policies to ensure students with diabetes have the needed support for diabetes management at school. Currently Saskatchewan does not have a policy in place. In 2015, the Saskatchewan School Boards Association released a set of guidelines to help school boards develop policies for life-threatening conditions including diabetes. Entitled Managing Lifethreatening Conditions: Guidelines for Saskatchewan School Divisions the policy document stresses the importance to keep individual care plans accurate and up-to-date, to provide learning opportunities to school personnel about diabetes, and to clarify roles and responsibilities of all involved in the student s care. 29 It cites the Saskatchewan Human Rights Code in stating a student has the right to education without discrimination on the basis of disability (which will include life-threatening conditions), and a student with disability is entitled to reasonable accommodation that respects their dignity and provides them with equal treatment. diabetes.ca/charter 21