Mr. Speaker, today parliamentarians are considering a measure to address a rare disease that affects thousands of Canadians, sickle cell disease. Bill S‑201, the national framework on sickle cell disease act, is intended to take steps to ensure awareness and to ensure that the level of care for people with sickle cell disease across Canada is more aligned.
Sickle cell disease is a lifetime genetic blood condition where red blood cells become hard and crescent-shaped instead of round. These misshapen cells can block blood flow, causing severe pain, infections and serious damage to organs over time. An estimated 6,500 people in Canada suffer from sickle cell disease. I say “estimated”, as we do not have an accurate count because there is not a national registry. Because of this, it is difficult to fully understand the scope of the condition, or for provinces to plan effectively for health care services and resource allocations so patients receive appropriate support across the country.
Conservatives are proud to support sickle cell awareness. We voted to recognize June 19 as national sickle cell awareness day, as an important step in increasing visibility and understanding of this disease across the country. The bill would build on this awareness by including “measures to support public awareness campaigns on sickle cell disease and blood donation”.
Despite the good intention of the legislation, there are several sections of the bill that raise questions. The bill seeks to “set evidence-based national standards for the diagnosis and treatment of sickle cell disease”. However, standards of care are set by professional associations that operate under provincial jurisdiction. This is why it is essential that provinces and territories be fully engaged and that their perspectives shape any coordinated national approach.
There are examples of other framework bills where guidance has been established for the care of people with a specific disease or class of diseases. For example, Bill C-442, an act respecting a federal framework on Lyme disease, which was introduced in 2013 in the 41st Parliament, included a provision that mandated the establishment of guidelines regarding the prevention, identification, treatment and management of Lyme disease and the sharing of best practices throughout Canada.
Similarly, Bill C-224, the national framework on cancers linked to firefighting act, introduced in 2022 in the 44th Parliament, will “make recommendations respecting regular screenings for cancers linked to firefighting”, “promote information and knowledge sharing in relation to the prevention and treatment of cancers linked to firefighting” and “prepare a summary of existing standards that recognize cancers linked to firefighting as occupational diseases.”
These are sound and balanced examples of legislation that promote more consistent care across Canada while respecting provincial jurisdiction and encouraging national knowledge sharing. Similar concerns come to mind as the framework seeks to “include measures to institute universal neonatal screening”. As of August 2024, universal sickle cell disease screening has been implemented in all provinces except for Newfoundland and Labrador and the territories.
From my point of view, the real opportunity here would be to focus on closing the remaining gaps, working with jurisdictions that have not yet implemented screening, and supporting them in a way that respects their unique circumstances. I am looking forward to discussions at committee about what collaboration can take place with Newfoundland and Labrador and the territories to make sure the screening can be implemented across all Canadian jurisdictions.
There is also the question of how much taxpayer money the measures included in the bill would cost. To date there has been no estimate from the Parliamentary Budget Officer outlining the financial impact of the bill. It is only reasonable that Canadians have a clear understanding of these price tags before the framework is finalized.
Federal strategies need to focus on delivering value for taxpayers by investing in solutions that improve outcomes, not just increase spending. If we are spending without any results, that is problematic. That is why Conservatives support the implementation of a rare disease strategy, not just a rare disease drug strategy.