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Private Members' Business

National Framework on Sickle Cell Disease Act

2026-06-16 Sitting 137 Showing 1–2 of 2

A bill to create a national framework on sickle cell disease. MPs spent time acknowledging the bill's sponsors, discussing the disease's impacts, and sharing personal connections to the issue. A few MPs talked about unrelated local events in their ridings.

Official Hansard ↗

Dan Mazier

Conservative 6:30 p.m.

“This bill will spend a lot of money and I don't know if it's worth it. It tells the government to study expensive things but doesn't say who will pay. The framework is really broad and has no clear responsibilities or enforcement. I want the committee to assign clear responsibilities and timelines. I'm worried the bill oversteps into provincial jurisdiction. I want the government to prove these expensive programs will actually help before they spend more of your money on them.”

Official Hansard

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.

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Tamara Kronis

Conservative 6:30 p.m.

“I want this bill to pass so the government can claim it is doing something good, but I don't want to be blamed for the money it will cost or the way it will step on provincial toes. If the bill becomes law and doesn't work, I want to say that I asked for more study and changes. I hope this bill makes our party look good even though this is not our idea and we are just piling on.”

Official Hansard

Mr. Speaker, I rise today to speak to Bill S‑201, the national framework on sickle cell disease act. The bill deals with a serious, painful and lifelong illness. Sickle cell disease is an inherited blood disorder that affects hemoglobin. It can cause chronic pain, severe infections, organ damage, stroke and shortened life expectancy. It affects roughly 6,000 Canadians. Bill S‑201 would require the Minister of Health to develop and table a national framework on sickle cell disease within one year. The framework would cover training for health care professionals, a national research network and registry, evidence-based national standards, universal neonatal screening, public awareness, blood donation promotion, analysis of a possible tax credit, inclusion in existing disability benefits, and an analysis of whether treatments should be included in public drug insurance plans. A follow-up implementation report would be required within three years. These are serious proposals, some of which are partially implemented or implemented in various provinces. They deserve careful study. Conservatives supported the recognition of June 19 as National Sickle Cell Awareness Day. We support better awareness, earlier diagnosis, improved screening, and stronger care for Canadians living with sickle cell disease. We support practical steps that help patients and families, especially when those steps are shaped by evidence and by the people most affected. At the same time, Parliament has a duty to get the details right. As we know, health care delivery is provincial. The provinces run hospitals, manage newborn screening and make many of the direct decisions that determine whether any patient, including those with sickle cell disease, receives care quickly, safely and close to home. A federal framework can be useful if it brings people together, improves data, shares best practices and supports better outcomes. However, it is useless and can even be very damaging if it produces yet another Ottawa document written far from the people who must deliver care on the ground, without taking their needs into account. That is the difference between a framework that helps patients and families and one that sits on the shelf and gathers dust or, worse, is used as an excuse not to act. When the bill goes to committee, Conservatives will seek to ensure that the structural framework discussed in it results in a strategy that would be developed in genuine and respectful partnership with the provinces and territories. Patients deserve the benefit of better coordination. If the federal government uses its convening power well and with intent, better coordination can yield better outcomes. Families need real answers, not announcements. The same is true for cost. Bill S‑201 would not include a fiscal appropriation, but the framework points to initiatives that could carry major downstream costs. A national research network, a patient registry, public awareness campaigns, professional training, expanded screening, drug coverage analysis, disability benefit inclusion and a possible tax credit all raise financial questions. Compassion requires honesty. Before this framework is finalized, Parliament should require a Parliamentary Budget Officer cost estimate. If the government is asking Canadians to support a national framework, it should be clear about the costs, timelines, responsibilities and expected results. That is not opposition to the bill. It is respect for the patients who are counting on it. The bill would also connect with areas where Conservatives have already put forward practical policy. We have supported making the caregiver tax credit refundable. We have called for the disability tax credit to be streamlined and simplified, including automatic eligibility for related programs where appropriate. We have supported safer, faster access to drugs already approved by trusted peer jurisdictions, better pediatric drug data, and a rare disease strategy that supports treatment development. Those ideas matter here. Patients and caregivers need systems that are simple, fair and practical. They do not need more paperwork, more overlapping programs or federal announcements that create confusion among departments, provinces and providers. They need care that works. Bill S-201 raises this broader question, because it would not be the only bill of its kind. In Parliament, members and senators have brought forward several health-related bills on rare disease access, forced and coerced sterilization, heart failure, fetal alcohol spectrum disorder, food allergies, women's health, brain injuries, ADHD, medical assistance in dying, natural health products, living organ donors, supervised consumption sites, and mental health. Each of these bills speaks to a real concern and has its own patients, families, advocates, experts and evidence. Some deal with disease-specific frameworks. Some deal with treatment access. Some deal with criminal law protections. Some deal with long-neglected gaps in the system. Taken together, what these bills reveal is something the Liberal government should not be proud of: Canada's health care file is being patched, one private member's bill at a time. Private members' bills do have an important role. They can raise issues government has missed, bring neglected voices to Parliament or force attention where attention is overdue, but in this quantity, they show that they are becoming a substitute for a competent government that actually cares about the health of Canadians. A well-run health file would not need Parliament to keep discovering one gap after another through separate private members' bills. It would not need one bill for one disease, another for another treatment pathway, another for one group of patients and another for one failure that should have been addressed years ago. The federal government has a Minister of Health, departments, agencies, regulators, health transfers, data systems and provincial-federal tables. It has the tools to lead while respecting provincial jurisdiction, yet again and again, patients and families are left to organize, to advocate and to wait until someone brings forward a bill. Canadians deserve better than fragmented attention on the health file. They deserve a health care approach that identifies gaps before families have to plead for help. They deserve better data, faster diagnosis, clearer accountability, responsible spending and practical support for provinces and territories. In short, they deserve federal leadership that knows the difference between coordination and interference. For Bill S-201, we will work with the government to move the bill forward in a constructive way. We will support better awareness of sickle cell disease, earlier diagnosis, better data, stronger research, improved training for health care professionals and a more diverse blood supply. We would listen to patients, caregivers, clinicians, researchers, community organizations and provinces and territories when they come to committee, but we would also insist on amendments that would make the bill clearer and more useful. The framework should be developed in partnership with provinces and territories. It should respect jurisdiction, avoid duplicating the existing national strategy for drugs and rare diseases, use accurate language around guidelines and best practices, include cost transparency and, most of all, be judged by whether it improves care. People living with sickle cell disease do not need Parliament to pass bills that feel good but change little. This debate must result in more than just another report for the Ottawa shelves. Canadians deserve better, which is what Conservatives will continue to relentlessly fight for in the House.

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