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

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.

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.

“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 .

to help manage her son hudson’s diabetes, nadine pedersen reduced her work hours and responsibilities for several years in order to focus on his care. supplied

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.”

managing 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 .

according 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.

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.

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.

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.

researchers 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.