Mr. Speaker, I would like to speak today about Bill S-201, an act respecting a national framework on sickle cell disease.
Sickle cell disease is a devastating inherited blood disorder. It causes chronic pain, organ damage, serious infections and a shortened life expectancy. Our best estimates suggest that 6,000 Canadians are living with sickle cell disease right now. I say “estimates” deliberately because Canada has no coordinated data to tell us the actual number. We cannot track outcomes or evaluate treatments at scale or measure whether what we are doing is actually working. Without the data, it is nearly impossible to plan health care services, allocate resources appropriately or understand the full impact this disease has on patients and families.
The Conservatives are proud to stand up for Canadians living with sickle cell disease. We were proud to vote in favour of recognizing June 19 as National Sickle Cell Awareness Day. This bill would build on that commitment by including measures to support public awareness campaigns and increase blood donation. We have also committed to implementing a rare disease strategy to support treatment development, and we have fought to safely speed up drug approvals for treatments already approved by peer jurisdictions.
Let me explain what the bill would do. Bill S-201 would require the Minister of Health to develop and table a national framework on sickle cell disease within one year. That framework must cover nine substantive areas. These are health care professionals' training, a national research network and patient registry, evidence-based national standards for diagnosis and treatment, universal neonatal screening, public awareness campaigns, promoting blood donations to ensure diversity in the blood supply, the analysis of the potential tax credit for patients and caregivers, the inclusion of sickle cell disease in existing disability benefits and an analysis of the inclusion of sickle cell treatments in public drug insurance plans.
The government would be required to table a follow-up implementation report within three years. The bill would also require the minister to consult with relevant colleagues, the provinces and territories, patients, caregivers, the medical community and researchers.
There are provisions in this legislation that warrant careful scrutiny at committee. Let me start with what may be the most straightforward and most urgent piece of this bill, which is neonatal screening. Early detection saves lives. When sickle cell disease is caught at birth, families and clinicians can begin managing the condition before the first crisis. When we do not detect sickle cell disease early, children can suffer devastating complications that could have been prevented, like strokes, infections and organ damage. As of August 2024, universal newborn screening is already implemented in every province and territory, except Newfoundland and Labrador and Nunavut. The gap is real, but it is narrow. Rather than designing a sweeping national mandate, the more effective approach would be to ask what specific barriers are preventing implementation. I am looking forward to seeking clarity on the scope and potential models for neonatal screening at committee.
Let me turn to some concerns about provincial jurisdiction. Health care delivery is and must remain the primary responsibility of the provinces. The Conservatives believe any federal health framework must be developed in partnership with the provinces and should not be handed down as a federal directive. The bill requires consultation, and that is welcome, but consultation is not partnership. We have seen too many federal health initiatives that check the consultation box and then proceed, regardless of what the provinces said. This framework must be built with the provinces, not around them.
The bill proposes setting what it calls “evidence-based national standards for the diagnosis and treatment of sickle cell disease”. On the surface, it sounds sensible, but the standards of care in this country are established by medical professional associations operating under provincial and territorial jurisdiction. Any attempt by the federal government to unilaterally define those standards without meaningful provincial engagement would be both constitutionally questionable and practically counterproductive.
We have seen how to do this well. Bill C-442, the Lyme disease framework from the 41st Parliament in 2013, focused on establishing shared guidelines, promoting best practices and encouraging knowledge sharing, not dictating clinical standards from Ottawa. The framework for cancers linked to firefighting took a similar approach with recommendations, information sharing and recognition of occupational diseases. These models work precisely because they respect jurisdictional boundaries while still advancing national coordination. Bill S-201 should follow the same template.
The Conservatives want to ensure that our health legislation properly reflects the advisory nature of federal clinical guidance and reduces the risk of jurisdictional intrusion. Conservatives are also concerned about the accountability measures of this bill, or the lack thereof. The framework would cover nine major action areas spread across multiple organizations, but it has no clear assignment of responsibility or an enforcement mechanism. A framework that is so broad and unenforceable is simply a list of aspirations.
Canadians with sickle cell disease want results, not platitudes. It would be beneficial for the health committee to consider clear accountability mechanisms. These could include identifying who is responsible for each deliverable, what the timeline is and how Canadians will know whether the commitments are being met.
I also want to raise a concern that does not get enough attention in these debates, which is the cost. This bill does not include fiscal appropriation, which is standard for a private member's bill. However, it directs the government to study programs that have the potential to carry costs. A national research network would need dedicated infrastructure, staff and long-term operational support. Universal neonatal screening would need provincial buy-in and funding commitments. Public awareness campaigns would need sustained investment to reach the communities most affected. Health professionals' training would need a curriculum, coordination across medical schools and resources to deliver it. An analysis of a potential tax credit for individuals with sickle cell disease and their caregivers would need rigorous actuarial work. Expanding disability benefits to include sickle cell disease would carry fiscal implications that must be modelled before any commitments are made. Each of these programs would have a large price tag associated with them. Canadians deserve to know what these costs would be before this framework is finalized, yet no cost estimate from the Parliamentary Budget Officer has accompanied this bill. I have written to the Parliamentary Budget Officer to request one, and hope this is conducted for the committee's consideration.
Costs and structure are not the only things we need to ask questions about. We must also consider what treatment options are available to Canadians living with sickle cell disease.
Gene therapies that were once in the realm of science fiction are now a reality. In late 2023, both the United Kingdom and the United States approved Casgevy, a groundbreaking gene therapy, and the U.S. went further in improving a second option, Lyfgenia, at the same time, so there are two options. Canada approved Casgevy nearly a full year later, and Lyfgenia is still not available to Canadian patients.
Once Health Canada approves a treatment, the wait is not over. Canadians on public insurance plans face a wait, on average, of three years from the time a drug is approved elsewhere to the time they can actually access it. That is insane. That is roughly one year in Health Canada's approval process, followed by two more years of provincial coverage negotiations through the pan-Canadian Pharmaceutical Alliance. It is absolutely insane that people would have to wait three years while they are in pain, their organs are being damaged and other countries' patients are receiving treatment. The Conservatives have committed to fixing this. If the therapy has already cleared rigorous regulatory review in peer jurisdictions, we should not be making Canadian patients wait years to access the same medicine.
We have proposed safely accelerating approval for treatments already approved by peer jurisdictions. To be clear, our approach to rare diseases is not simply about drugs.
I guess my time is up.