Mr. Speaker, it is always an honour to rise in the House, and specifically today to speak to Bill S-201, an act respecting a national framework on sickle cell disease.
To begin, I want to acknowledge the important intent behind the legislation. Sickle cell disease is a serious, lifelong condition that affects approximately 6,000 Canadians and their families across this country. It is a painful, complex and often under-recognized illness. Better coordination and improved awareness within our health system are important.
For those Canadians affected, this disease has had a profound impact. Families face repeated hospital visits, chronic pain crises and uncertainty around access to consistent treatment and care. These are real challenges, and Canada currently has no coordinated data infrastructure for sickle cell disease. Therefore, we are not able to properly track outcomes, evaluate treatments at scale or ensure that best practices are shared effectively across the country. That gap is part of the reason conversations like this one are so important.
In Newfoundland and Labrador, while the prevalence may be lower than in larger urban centres, we are no strangers to the challenges of rare disease management. Patients in rural, remote and coastal communities often face additional barriers simply because of geography, whether that is access to specialists, access to diagnostic services or access to ongoing treatment support. In fact, after affordability, access to health care is the second-biggest concern that I hear about in my riding of Long Range Mountains. Many Canadians living in rural, remote and coastal areas experience these same challenges, often waiting extended periods of time to see specialists. Therefore, coordination can be very useful.
Bill S-201 proposes the development of a national framework that touches on a wide range of areas, from health care provider training to public awareness, neonatal screening, research networks and even the analysis of potential tax credits and changes to disability and drug coverage programs.
In principle, coordination and information sharing across jurisdictions can be beneficial. We should always be open to improving how provinces and territories learn from one another and how best practices can be shared. Canadians definitely benefit from governments working together.
Conservatives have supported efforts to raise awareness and improve outcomes for Canadians living with this disease. We supported the recognition of June 19 as National Sickle Cell Awareness Day and have consistently supported broader efforts to strengthen frameworks that improve health outcomes for Canadians. We also recognize the importance of advancing a rare disease strategy to support treatment development and of working with provinces to improve labour mobility through nationally recognized credentials for health care professionals. These are practical steps that could help strengthen care across the country, and especially in areas where barriers to access exist.
However, there are considerations that must be addressed with this legislation. We must be very careful about jurisdiction. Health care delivery is, and must remain, the responsibility of the provinces. Any national framework must respect that division of powers. If federal initiatives move too far in setting standards without clear collaboration, we risk creating friction with provincial systems that are already managing significant pressures.
In fact, this bill uses the term “standards” rather than “guidelines”, which differs from comparable federal health framework legislation. The choice of language is important. Clinical practice is determined by medical professionals and provincial systems, and any federal role should be clearly advisory in nature.
We have seen in previous framework legislation, including in areas such as Lyme disease and firefighter cancer frameworks, that the most effective federal role is often one of coordination and guidance rather than prescriptive direction. In this case, the bill would benefit from clearer language around what is intended as guidance and what is intended as a binding expectation to reflect reality.
Second, while this bill would not include a direct appropriation of funds, it points to areas that would carry cost implications. A national research network, expanded neonatal screening programs, public awareness campaigns, enhanced training and potential expansions to drug coverage and disability supports are all meaningful initiatives, but they do come with fiscal implications that have not been fully defined yet, so transparency on those costs is important. At present, there is no fiscal appropriation and no Parliamentary Budget Officer estimate. Before this is finalized, Parliament should have a clear understanding of what the measures would cost and how they would be implemented.
Third, there is a question of duplication. Canada already has a national strategy for drugs for rare diseases. We need to ensure that this framework complements that strategy rather than overlaps with it, so that there is no confusion over how support is delivered. When dealing with rare diseases, efficiency, coordination and clarity in policy design are essential. Families affected by sickle cell disease need streamlined support, not overlapping systems.
That said, I want to recognize that the objectives in this bill align with important policy goals we have supported in the past. For example, improving caregiver recognition and support is something Conservatives have long advocated for, including making caregiver benefits more accessible and more responsive to real-world needs. Likewise, streamlining access to disability supports and improving drug approval and treatment pathways for rare diseases are areas where there is room for constructive work.
We also recognize the importance of early diagnosis and awareness. Long wait times and limited access to health care professionals can create a higher risk for these Canadians. Therefore, neonatal screening, when done appropriately and in partnership with provinces and territories, we recognize, can make a meaningful difference in outcomes for patients with a rare disease like sickle cell, but again, the keyword is partnership.
The framework must be developed in collaboration with provinces and territories. Conservatives believe the federal government should work with provinces on national health objectives. It must be developed collaboratively with provinces and territories, with clinicians, with patient advocacy groups and with those who are directly affected by the disease. Without that collaboration, the most well-intentioned framework can fall short in implementation.
We also need clarity on accountability. The bill would distribute responsibilities across multiple departments. While coordination is important, Canadians also expect clear lines of responsibility so progress can be measured and reported in a meaningful way.
The appropriate next step is to send this bill to committee. In committee, there is an opportunity to strengthen the legislation, improve its language, ensure it respects provincial jurisdiction and address the fiscal unknowns that remain. It is also the place to hear from stakeholders, medical professionals and provincial partners to ensure that the framework is both practical and effective. We believe amendments should be considered to ensure that provincial collaboration is explicit; that terminology, such as “standards”, is clearly defined in line with advisory clinical practice; and that cost implications are fully examined before implementation proceeds.
These are not objections to the intent of the bill but recommendations to ensure that if the framework moves forward, it does so in a way that is responsible, collaborative, grounded in the realities of the health care system and the regions of the country, practical and respectful of jurisdiction.
Canadians living with this disease and their families would definitely benefit from better coordination, better awareness and better outcomes. The question is not whether we should act, but how we act, and how we do it in a sustainable and co-operative way. For that reason, we support sending the bill to committee, where it can be strengthened and improved to ensure that it delivers real results for Canadians while respecting the roles of provinces and the importance of fiscal transparency.