Mr. Speaker, I am pleased to rise to speak to Bill S-201, an act respecting a national framework on sickle cell disease. This legislation establishes a national framework to support Canadians with sickle cell disease—also known as sickle cell anemia or drepanocytosis—their families and their caregivers. The initiative's primary aim is to raise awareness about this rare chronic disease, which predominantly affects individuals of African or Caribbean descent.
The Bloc Québécois acknowledges that sickle cell disease is a serious problem and that people living with it must be supported. However, some aspects of the strategy encroach on the jurisdictions of Quebec and the provinces. For example, Quebec has repeatedly let it be known that it wishes to retain control of public health awareness campaigns in its territory, yet the bill calls for federal awareness campaigns.
Furthermore, Quebec has already developed guidelines on this disease for its health professionals. These guidelines have been incorporated into sickle cell disease screening efforts as part of Quebec's neonatal blood testing program. Since Quebec and the provinces have authority over their health systems, it is inappropriate for the federal government to impose guidelines that affect their hospitals, for which it has no constitutional responsibility. We are dismayed that the bill fails to acknowledge Quebec's specific characteristics in the health field.
We would like to see the bill amended so that it reflects the constitutional reality and the division of powers. Constitutional concerns aside, we recognize that the bill's framework has the merit of drawing attention to a little-known disease. Looking more closely at the bill, we see a proposal for a nine-point national framework that would be developed by the Minister of Health in collaboration with provincial and territorial governments and all relevant stakeholders, such as caregivers, support persons, service providers, representatives of the medical and research communities and organizations. If we look more closely at these nine points, we see that there is a provision that includes measures to address the training, education and diagnostic and treatment tool needs of health care professionals relating to sickle cell disease. I must point out that this is not the federal government's role. Quebec's department of health and social services is already doing it.
Quebec already has various guidelines for health care professionals. For example, there is the neonatal blood screening guide, intended for perinatal nurses and midwives. There is also the Quebec neonatal blood screening program, which involves screening newborns' blood for diseases. These are just a few examples of what Quebec is already doing to respond to this disease. The Centre hospitalier universitaire de Québec-Université Laval even publishes a newsletter for health care professionals on the Quebec neonatal blood screening program.
The bill also provides for the establishment of evidence-based national standards for the diagnosis and treatment of sickle cell disease. Again, I must point out that Quebec already has programs, standards and practice guidelines in place.
Next, the bill includes measures to institute universal neonatal screening, postnatal diagnosis when necessary and the provision of results for affected individuals and organizations. Quebec's newborn screening program already screens for various diseases, including sickle cell disease. The program is available to all newborns in Quebec and, as of April 28, all newborns are automatically registered in the program. Screening is now done using a single blood sample taken 24 to 48 hours after birth. This change aims to detect diseases targeted by neonatal screening more quickly and accurately. Here again, we see that this measure in the bill is already in effect in Quebec.
The bill also provides for measures to support public awareness campaigns on sickle cell disease and blood donation. As everyone is probably aware and as I mentioned earlier, Quebec has repeatedly stated that it wants to retain control over public health policies and any associated public awareness efforts within its jurisdiction.
Quebec already publishes an online public information page on sickle cell anemia and its variants. It summarizes the symptoms, the treatments, the medical follow-up, available support groups and the tests that can be done on people interested in finding out whether they carry the problem gene.
In addition, Quebec already offers sickle cell disease awareness and information tools, including a family handbook that provides parents with a wealth of helpful information about the disease, such as available services, facts about the disease and its complications, information about prevention, medication and treatment, and a list of available resources and websites. The nine-point list in the bill also includes measures to promote and support blood donation by every segment of the population and the creation of a diverse blood supply that allows for safe transfusions.
I want to note that Héma-Québec is responsible for blood donations in Quebec, while Canadian Blood Services is responsible for that in the rest of Canada. Concerns have been raised about Black women being able to donate blood because their hemoglobin count is naturally lower than Héma-Québec's eligibility criterion. Héma-Québec conducted a study to determine whether taking iron supplements following a blood donation could help replace the iron lost and expand eligibility, which would help optimize the collective blood supply. We view this as more of a scientific issue than a political one. In this matter, we should trust the various experts.
Another aspect of the bill calls for an analysis of the introduction of a tax credit for people with sickle cell disease and their caregivers. Both Quebec and Canada offer tax credits for caregivers. The Bloc Québécois supports this proposal. If the federal government wishes to review the criteria in its tax credit to ensure that caregivers of people with a disabling form of sickle cell disease can benefit from a tax credit, we see no reason to oppose that.
The bill also provides for the inclusion of sickle cell disease in the eligibility criteria for existing disability benefits. Certain forms of the disease can be associated with severe limitations, so it is entirely appropriate for the federal government to review its programs to ensure that those who should be eligible actually are. Canada offers the disability tax credit as well as the Canada disability benefit. To qualify for the second benefit, a person must first qualify for the first one. To be eligible for the tax credit, a person must have a severe and prolonged impairment. This means that the person is unable to perform essential functions such as walking, dressing or feeding themselves, or that they can do so but it takes them three times as long as a person without the impairment. Furthermore, this limitation must be present all or substantially all of the time—at least 90% of the time—and be prolonged, meaning it must last more than a year.
The bill would also require an analysis of the potential inclusion of treatments essential to sickle cell disease care in public drug insurance plans. Once again, there is a bit of an issue in terms of the jurisdiction of Quebec and the provinces. Public drug insurance plans are a provincial matter. As a result, the federal government cannot impose conditions on provincial public insurance plans requiring them to include or not include certain services or drugs. However, as an employer with over 350,000 employees, it could overhaul its own private drug insurance plan so that its employees get this coverage. It would be smarter and more realistic for the bill to focus on what the federal government can do rather than promise impossible changes.
We support doing the right thing, and we understand the awareness aspect of the bill, but it is important to keep in mind that Quebec is already doing a lot of the things proposed in the bill and that this encroaches on Quebec's jurisdiction over health matters.