Thank you. I sent over my text, I believe.
Dear members, I was approached a couple of weeks ago to present to the committee. Initially, I was told that the committee would like to hear about my perspective on what should be the priorities in the field of juvenile diabetes, specifically outlining the potential role of public health. You may then excuse me if my comments sound quite different from those of other presenters. Given that JDRF, CIHR, and the CDA will also be represented at this committee, I don’t intend to put much emphasis on research that I or my colleagues are undertaking, even though I strongly feel that supporting research that aims to prevent diabetes and to alleviate the burden of injecting multiple times daily for these children should be priorities. I reserve my comments on these issues for the question period.
I also acknowledge that my perspective is heavily biased by my working environment and may not reflect the reality of others.
Finally, I am well aware that this is a federal committee and that health coverage is a provincial matter, so there are limits to what can be accomplished.
For starters, the first point I’d like to make is that juvenile diabetes is now a much more confusing term. Type 2 diabetes, which gets a lot of media coverage, has been steadily increasing in our clientele. This entity—as well as cystic fibrosis-related diabetes and genetic forms—has made diabetes care much more complex and diversified in the pediatric age range.
It is also important to note that while there is no doubt type 2 diabetes prevalence is increasing, it has not reached the epidemic proportions it has in the United States, and it still represents a small proportion of most of the country’s diabetes clinic populations. It is nevertheless concerning to see it growing. While both type 1 and type 2 diabetes have been increasing in most industrialized countries, it is still quite difficult to have good data to support this claim in Canada. Estimates of prevalence and incidence are usually given, but are mostly based on partial or unreliable data.
Canada has always been known to have a high incidence of type 1 diabetes, but proper ways to carefully follow trends and examine regional distribution of cases have been lacking. The creation of provincial or national registries has been plagued by many snags and is not usually a high priority for granting agencies struggling to maintain their budgets from year to year.
The setting of well-designed provincial and national registries would allow us to follow these trends, properly delineate diabetes type—and I admit that this is a challenging task—and help properly distribute care amongst areas according to the disease burden. An active diabetes registry for type 2 diabetes could allow, for instance, reflecting on the impact of interventions designed to curtail the increase of cases over time, not to mention its immense potential in the field of research to explore links to a yet elusive trigger for diabetes emergence.
We are now quite adept at predicting type 1 diabetes emergence in high-risk individuals based on our long-standing experience in prevention studies like DPT and others, but have yet to find a strategy to stop type 1 diabetes in its tracks. While we all wait and hope that some of these studies, one of which I am part of, pan out, there is a need to make sure that we diagnose those children who develop type 1 diabetes early.
The proportion of cases being diagnosed in diabetes ketoacidosis, also known as DKA, is still unacceptably high for a country where medical access should be universally accessible. The Province of Ontario explored this, and a campaign of information designed to remind key stakeholders of the early clinical signs of diabetes—frequent urination, thirst, weight loss—has been designed to address this issue.
Pushing this further, I’d advocate that information, as well as providing access to quick and useful diagnostic tools, such as urine dipsticks, glucometers in clinics and other care settings, to avoid the undue delay of sending out to labs and waiting three to five days for results to come back, would be a small investment with potentially huge dividends.
It is paramount that caregivers and others involved in the care of children understand the nature of type 1 diabetes. Those three to five days can make all the difference between a child's being started on insulin and going home the same day and an intensive care admission, cerebral edema, and unfortunately, but rarely, death.
While it is common to explore the diagnosis of type 2 diabetes over several weeks, timing is crucial for type 1 diabetes. This semantic point is not trivial, as diabetes is plagued by the fact that most people are familiar with type 2, and in a lumping culture—in other words, “all diabetics are the same”—the image of diabetes that most people, including health workers, have and sometimes transmit is tainted by this reality: “It has to be type 2; there are no other kinds.”
This impacts upon the care of those, mostly children, affected by type 1 diabetes. A concerted effort to extend to the rest of the country initiatives aimed at diagnosing cases early would seem to represent an excellent cost benefit.
Diabetes management has become much more complex with the advent of new insulin options and the insulin pump. You heard something about it earlier. Several provinces now have a reimbursement program that allows interested families to benefit from this technology. While these provincial efforts are acknowledged and welcomed, the human factor has unfortunately fallen short. There is a wide discrepancy in services provided in schools for these children.
More specifically, there is a need for more support in elementary schools and day care centres. The growing perception is that these technologies do everything, but they fail to understand that a six-year-old child should not be expected to be fully in charge of what is basically a mini-computer. I am aware of several families in which one of the parents had to stop working or cut back on work hours to personally supervise their child at lunchtime because school personnel refused to do it. I personally think this is unacceptable. The same situation could arise in the case of intensive insulin regimens that incorporate lunchtime injections.
It is extremely challenging to find a working collaboration in many schools across the country. Every child, including those with a chronic medical condition, has a right to be educated, but implementing this principle in the school setting is not always easy. Diabetes teams frequently team up with school resources to ensure the best possible environment for the type 1-affected child, but nursing training and availability are lacking or inappropriate, and quality of care is then affected. Strong leadership by diabetes organizations is important to make schools more diabetes-friendly.
There is also a wide disparity in coverage of basic material for daily diabetes care. Just as an example, strips for glucometers are not covered in every province. I am well aware that health coverage is a provincial mandate, but I cannot stand idle when I hear that some families struggle to pay for their glucometer strips—or any essential material, for that matter, for the safety and care of their children. A federal program aimed at ensuring a minimum basic coverage of material for this and other chronic diseases would seem an important safety net to ensure that families do not run short of material because they can’t afford it. These potential inequities are unacceptable.
Along the same lines, providing safe and adequately staffed summer camps for children with special needs—and that includes any with chronic disease—should not have to entirely depend on private foundations' support. I know that CDA is supporting many, and we are grateful for that, but many camps just get by and struggle. All families should have access to these stimulating and potentially life-changing environments. To ensure access to these camps for all children regardless of their socio-economic background, extra support should be provided.
Focusing now on type 2 diabetes, we know that its prevention is possible. Given its strong link with pediatric obesity and its known concentration in lower socio-economic strata of our society, I strongly believe that the fight against a potential type 2 diabetes epidemic in children is akin to the fight against poverty and hence mandates a concerted effort on multiple fronts.
More specifically, there is a lack of affordable and accessible opportunities for exercise outside of school for families from low socio-economic areas. School game and exercise facilities are underused and could be made available for after-school programs with the help of a kinesiologist trained to adapt the programs to the level of fitness of the children he or she faces.
There's also a need for adequate counselling, based on the financial constraints many of these families face, from a nutritionist trained in pediatrics, and I insist on this. Availability of good counselling is a big challenge in the hospital setting because of budgetary constraints. Community-based nutrition counselling is for the most part targeted to the adult clientele. There is a gap that is disfavouring the more vulnerable.
I personally don’t favour taxing fast food, but rather subsidizing healthy foods—
