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.