Thank you, Mr. Chair.
As mentioned, my name's Dave Prowten, and I'm the president and CEO of JDRF Canada. I'm joined by Patrick Tohill, who is our director of government relations.
JDRF is the world's leading charity focused on research to cure, prevent and treat type 1 diabetes. This is a chronic, potentially fatal, autoimmune disease in which a person's pancreas stops producing insulin, making them dependent on daily injections or infusions of insulin for the rest of their life.
I'd like to begin by thanking this committee for the attention you gave last year to the process changes by the Canada Revenue Agency, which saw nearly all adults with type 1 diabetes being denied the disability tax credit. The good news is that 1,326 Canadians with diabetes have had the disability tax credit restored. However, there remain 941 whose DTC claims remain disallowed. When we met recently with the CRA, they informed us that these applicants will not be notified of this outcome. We are concerned that those applicants may not be aware of the CRA's process and that it's concluded, and we believe these 941 individuals should be notified so they might avail themselves of the appeals process normally available to them. Frankly, we think that not doing so is really poor customer service by the CRA at this point.
With respect to the DTC, there remain some significant issues around eligibility that we would like to see addressed.
The first recommendation in our pre-budget submission calls on the government to amend the Income Tax Act to reduce the number of hours required to qualify for the DTC from 14 to 10, and to recognize carbohydrate calculation is integral to a proper dosage of insulin, and therefore should be an eligible activity. The CRA currently considers carbohydrate calculation as a dietary restriction, which is an ineligible activity, when it really is part and parcel of calculating the appropriate insulin dosage and should be an eligible activity. It creates confusion for doctors and inequity for patients. Those who report on their T2201 claim form the time spent calculating carbohydrates will often be denied, while those who report time spent calculating their insulin dosage will see that time included.
Our second recommendation is to amend the Canada disability savings regulation around RDSPs by removing the requirement that government contributions be repaid when their DTC eligibility is lost—except, of course, in cases of fraudulent activity. One of the most disturbing aspects of the CRA's recent denials was that some Canadians stood to lose tens of thousands of dollars in government contributions to their RDSPs. With eligibility for RDSPs entirely dependent on eligibility for the DTC, some may lose their eligibility within the 10-year investment period, forcing them to close their account and repay all government contributions. As this change in status may happen without a change in actual circumstances, these Canadians stand to lose their RDSP investments while continuing to face the same financial challenges and need for long-term financial security.
Families are of particular concern to us. Parents of children with type 1 diabetes may claim the hours they and their child spend managing insulin therapy towards the eligible hours for the DTC. After having invested in an RDSP in good faith, with the expectation that those funds will be there to assist their child in a time of need, is it right that families should face the prospect of a clawback simply because their child turns 18 years of age? We recognize it's a bit confusing, but it's an important issue that we would like to table.
Recommendation three calls for the government to implement a national diabetes strategy, more specifically the Diabetes 360° strategy recommended by our colleagues at Diabetes Canada. This strategy should include specific outcomes for type 1 diabetes and new funding for research aimed at curing, preventing and treating this disease. We're at a pivotal time for research, and each new discovery adds to our understanding of what's necessary to stop the immune attack that causes this disease and restore the capability to produce insulin, improve lives, and change the outcome and costs to the health care system.
Our fourth recommendation is to create a national diabetes registry for patients with type 1 diabetes along the lines of those developed by Australia, England and Wales, Scotland, Sweden and the United States. These registries have significant impacts on accelerating clinical trial recruitment, and they offer valuable understanding of the effectiveness of patient interventions in improving health outcomes and reducing health care system costs.
Our final recommendation is that the government ensure that all types of insulin are included under any national pharmacare program. Sir Frederick Banting and Charles Best discovered insulin nearly 100 years ago, in 1921, just down the street in Toronto. This was a remarkable achievement and a real source of pride for Canada. Today the cost of insulin remains high and newer, faster-acting insulins and glucose-responsive insulins are out of reach for some patients. It's a very expensive disease to manage on a day-to-day basis.
JDRF thinks it would be a fitting celebration, on the eve of the 100th anniversary of this remarkable discovery, for Canada to cover the cost of this life-sustaining medicine for all Canadians.
Thank you very much.