daily life with diabetes: stigma, constant care and costly treatments

growing up, brooks roche worried about whether he was doing enough to stay healthy. diagnosed with type 1 diabetes when he was three-years-old, he says that navigating the disease at an early age was often challenging.“i felt that my struggles were invisible,” says roche. “the symptoms were on the inside. other than having an insulin pump, i didn’t look any different from the other kids.”roche, 23, recalls that after he was diagnosed, routines, schedules and vigilance became a part of his childhood. he learned that the consequences could be severe if he failed to properly manage the disease, coming in the form of serious health complications like nerve damage, blindness or kidney failure.he says that because diabetes can make a child feel isolated, connecting with other kids with diabetes can be a validating experience. to help bring the community together, roche’s family organized numerous events, including camps and fundraising walks for the juvenile diabetes research foundation (jdrf). as a teen, roche also participated in kids for a cure lobby day where he had an opportunity to travel to ottawa to meet the prime minister, share his story and call for change in policies and programs for people living with diabetes. since then, roche, who is a diabetes canada advocate, has continued to publicly advocate for the implementation of a national diabetes strategy, and equitable access to insulin pumps and advanced glucose monitoring devices.as he continues to raise awareness about the disease, roche is dabbling in other areas of advocacy. last year, he was named to the prime minister’s youth council — an 18-member group that is part of a non-partisan federal initiative to provide input on issues and policies that affect youth.type 1 versus type 2type 1 diabetes often presents in childhood but can occur in adulthood as well. contrary to popular belief, type 1 diabetes is not caused by diet, lifestyle, or eating too much sugar. it is an autoimmune disease that leaves the pancreas unable to produce insulin, which is needed to stay alive. type 2 is a disease that occurs when the pancreas fails to produce enough insulin. people over the age of 40 with a parent or sibling with diabetes are at a higher risk for type 2. ethnic background is also a factor. gestational diabetes occurs in pregnant women, but resolves after delivery — although research shows that it can put some women at an increased risk for developing type 2 diabetes.treatment for type 1 diabetes requires insulin delivery through a pump or multiple daily injections, blood sugar monitoring, and carbohydrate counting. type 2 diabetes can be managed with lifestyle changes, blood sugar checks, and oral medication or insulin. and for those with pre-diabetes — which means you have a higher than normal blood sugar level, but not high enough to be considered type 2 diabetes — blood sugar usually can be managed with a healthy lifestyle.dr. alice cheng, an endocrinologist at the credit valley hospital and st. michael’s hospital explains that while treatment for diabetes has come a long way in terms of safety, effectiveness and convenience, there is still a lot of room for improvement.“the delivery of insulin and the determination of insulin dose can be further simplified and automated,” she says. “pill burden can be reduced further through more combinations, access to medications and treatments can be improved across the country to avoid the differences in access that currently exist, and healthier food choices can also be made more accessible.”while diabetes is a complex and unpredictable disease that requires ongoing education, support, and around-the-clock care, things like having to adhere to a strict diet and exercise program, manage stress and monitor glucose levels are just some of the ways the disease impacts those affected by it.“people living with diabetes often face stigma and discrimination as a result of misinformation or misunderstanding about the disease,” says laura syron, president and chief executive officer at diabetes canada.the stigma of diabeteswhen nadine pedersen’s son hudson was diagnosed with type 1 diabetes, she learned that the disease is not only poorly understood by many, but that there is also blame cast toward the parents of a child with diabetes. “there is a misconception that people get type 1 diabetes because of sugar, but what most people don’t understand is that it’s an autoimmune disease,” she says.the other common misconception is that insulin is a cure.“people living with diabetes face a number of challenges to effectively control their diabetes while striving to live life to the fullest, says cheng. “one has to always be mindful of the impact of food choices, physical activity, emotions, stress levels, hormonal changes, sleep and medications on their blood sugars. the general public often does not differentiate between the different types of diabetes that exist, lumping people into one category, which is wrong.”pedersen says that type 1 diabetes is a disease that requires 24-hour care, requiring many parents to wake two or three times a night to check their child’s blood sugar.“when you’re trying to do that and work, it can be exhausting,” she says.to help manage her son’s diabetes, pedersen reduced her work hours and responsibilities for several years in order to focus on his care.“my son was incredibly brave with the diagnosis and i think that, initially, he sometimes enjoyed the novelty of having a condition that attracted more attention,” says pedersen. “he never felt shame or the need to hide his condition, but i know that other kids can struggle with it. it all depends on the child, what’s going on in their family, in their peer circle and school.”pedersen felt supported by staff at her son’s school, but says that that’s not the experience of many other families. some schools may not allow staff to administer insulin or glucagon – a drug that revives someone with life-threatening low blood sugar, or they may require the child to treat diabetes in a private space outside of the classroom. pedersen says that these types of protocols fail to normalize diabetes and further deepen the shame and stigma surrounding the disease.

following her son’s diagnosis seven years ago, the greatest source of support for pedersen came from #wearenotwaiting – a global online movement that brings together the community and experts in order to develop technologies for those living with diabetes. about six years ago, the movement connected a continuous glucose monitoring (cgm) – a tiny under-the-skin sensor that measures glucose levels every few minutes – to the cloud so that patients could access the information on smart watches in real-time, long before the manufacturer had a similar product on the market. pedersen says that having the ability to check her son’s glucose levels anytime, anywhere was “empowering.”three years ago, thanks to the same online community, she got her son on a closed-loop insulin pump, an artificial pancreas, before a comparable product was available commercially. pedersen is an advocate for accelerating the development of improved technologies for people with diabetes.over the years, she has also received plenty of advice from people not familiar with the type 1 diabetes, some even claiming that consuming cinnamon or avoiding carbohydrates would somehow make her son’s diabetes go away.“it’s very isolating,” she says, “because you’re dealing with stigma caused by misinformation while trying to manage a complex disease that’s very expensive.”the cost of diabetesmanaging diabetes becomes much more complicated when a patient can’t afford the medication, devices and supplies needed to manage the disease and reduce the risk of complications, according to a diabetes canada report. one of the significant barriers that affect affordability is eligibility for drug and device coverage, which varies from province to province in terms of age restrictions, income-related deductibles, and co-payments.“the high cost of advanced glucose monitoring devices is a barrier to access for many canadians living with type 1 and type 2 diabetes,” says syron. advanced glucose monitoring devices can cost from $2,500 to $6,000, depending on the type.those without private health insurance may forgo treatment because they simply can’t afford it — a choice that is also seen among seniors on a fixed income, and people living with other diseases that require costly treatment, including cancer.borrowing for medicineaccording to a recent report by researchers at the university of british columbia, simon fraser university, mcmaster university and university of toronto, more than 731,000 canadians borrowed money to pay for drugs prescribed by their doctor. those aged 19 to 34 were more likely to do so, compared to people without private health insurance and those aged 45 to 54.when forced to choose between food, rent or drugs prescribed by their doctor, people often end up in the hospital with complications that may further endanger their health. the report found that a lack of affordable access to prescription medication prompted more than 374,000 canadians to seek additional healthcare services — about 300,000 people visited their physician multiple times and 93,000 people sought help at the emergency room.canadians living with diabetes spend roughly $1.8 billion on medication, devices and supplies to help manage the disease, according to a report published by the conference board of canada and supported by diabetes canada.“our research shows that reimbursement costs for glucose-lowering medications, whether through public or private insurance or out-of-pocket payments, are growing more quickly than the number of canadians living with diabetes,” said cameron maclaine, research associate, health with conference board of canada.pedersen, who is an advocate for equal access and affordable care, says that a current two-tiered healthcare system is adversely impacting families affected by diabetes, and that a national pharmacare program is needed to ensure equitable access across canada.“in some provinces, families are having to pay $10,000 or $15,000 a year in order to keep their kids alive,” she says. “it takes a huge toll on family finances and for many people, that means not being able to put money into retirement, not being able to save up for their child’s education, and ultimately, having to choose what type of diabetes management can they afford.”syron suggests that while the increase in reimbursement costs will enable more people to get the medication they need, some canadians may continue to face barriers to affordable treatment options. diabetes canada has been advocating for the implementation of diabetes 360° — a framework for a national diabetes strategy that meets the needs of people affected, or at risk, for the disease, and advocates for equal access to affordable care.“our country has been without a strategy to address the diabetes epidemic,” says syron. “what we need is the implementation of diabetes 360°. this framework will result in millions of fewer cases of type 2 diabetes in canada, big reductions in complications and significant savings in healthcare and benefits costs.”she is urging the federal, provincial and territorial governments to take action and help ensure that affordable care is available to all canadians. a $150 million commitment could reduce more than 770,000 new cases and save $20 billion in healthcare costs, according to diabetes canada’s website. research funding could also accelerate cures.hope for a cureresearchers at the university of alberta might have already achieved that. a recent announcement that a team of scientists has been able to cure diabetes in mice using a stem cell process continues to make headlines across the country and around the world. lead researcher dr. james shapiro said that what’s needed to move the trials from animals to people is a handful of volunteer patients, more testing and more money to purchase equipment.twenty years ago, shapiro made headlines when he unveiled the edmonton protocol — a procedure that gives patients new insulin-producing cells from islet transplants of organ donors. the treatment requires anti-rejection medications, which, with the new process that uses a patient’s own cells, would be eliminated.roche says that over the years, he has learned to manage the disease, but that the most challenging part is fitting diabetes into the rest of his life.“whatever it is that i’m doing, it’s a hurdle that i have to get through,” he says. “it’s omnipresent and ever-changing. but the older i get, the more i realize the incredible impact i can have by sharing my story, calling for change and equipping others with the chance to do the same.”for more information on diabetes, support or to connect with other patients, visit diabetes canada.maja begovic is a writer with healthing.ca.don’t miss the latest on covid-19, reopening and life. subscribe to healthing’s daily newsletter covid life.