Mr. Speaker, I am pleased to rise today to discuss Bill S-201, a national framework on sickle cell disease act. This is a disease that many have heard of, but few are aware of the details.
Sickle cell disease, also known as sickle cell anemia or drepanocytosis, is a group of red blood cell disorders. Those with the disease have abnormal hemoglobin. As members probably know, hemoglobin is the part of the red blood cells that carries vital oxygen throughout the human body. We know how important it is that tissues in the body receive a steady and life-sustaining supply of oxygen to work well. Hemoglobin takes the oxygen from the lungs to the parts of the body that need it. Normal cells are a disc shape, sort of like a doughnut. This shape allows the cells to be flexible. This flexibility and shape allow the cells to travel easily through blood vessels throughout the body.
Today, an estimated 6,000 Canadians have sickle cell disease. They are among the millions of sufferers worldwide. There are 300,000 babies born annually with sickle cell disease, and that number is expected to be 400,000 by 2050. Five per cent of the world's population carries the gene.
In 2006 and in 2010, the World Health Organization adopted two resolutions calling on countries to strengthen their responses to the disease. Canada made a start with the creation of the National Sickle Cell Awareness Day, on June 19. Now it is time to take it a step further.
This bill calls on the Minister of Health to develop a national framework on sickle cell disease.
First, it would include measures to address the training, education, and diagnostic and treatment tool needs of health care professionals relating to sickle cell disease.
Second, it would provide for the creation of a national research network to advance research, improve data collection and establish a national registry on sickle cell disease.
Third, it would set evidence-based national standards for the diagnosis and treatment of sickle cell disease.
Fourth, it would include measures to institute universal neonatal screening and postnatal diagnosis when necessary and the provision of results for affected individuals and organizations.
Fifth, it would include measures to support public awareness campaigns on sickle cell disease and blood donation.
Sixth, it would provide 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.
Seventh, it would include an analysis respecting the implementation of a tax credit for individuals with sickle cell disease and their caregivers.
Eighth, it would ensure the inclusion of sickle cell disease in the eligibility criteria for existing disability benefits.
Finally, it would contain an analysis of the potential inclusion of treatments essential to sickle cell disease care in the public drug insurance plan.
I think it is fair to say that the ambitions are big and that this is a very ambitious project.
This inherited blood disorder affects a person's hemoglobin. It causes chronic pain, organ damage, serious infections and a shortened life expectancy. Early detection is important for successful treatment.
Sickle hemoglobin forms stiff rods within the red cell, which changes the cell's shape to something more like a crescent or sickle shape. This creates enormous problems. The sickle-shaped cells result in blockages because the cells are stiff and unable to pass through the vessels easily. These resulting blockages mean that the vital oxygen stops reaching the parts of the body that need it.
What impact does this have on the person with the disease? A lack of oxygen results in attacks of sudden and severe pain throughout the body. It is a horrible condition. This pain occurs without warning and often results in hospitalization. The pain usually lasts five to seven days. While not always the cause, it has been noted that pain crisis can be triggered by temperature changes, stress, dehydration and even living at high altitudes. Of course, any infection that normally causes a rise in the number of red blood cells triggers the disease as well.
For most children with the disease, pain usually subsides between pain episodes. Nonetheless, many children with sickle cell anemia take penicillin every day to help the immune system, and they face a lifetime regimen of daily folic acid. For teens and adults, the pain is usually chronic, which can have a huge impact on the education, employment and mental health of sufferers.
Due to the lack of oxygen to vital organs on a regular basis, sickle cell disease often begins to cause long-term damage to vital organs. It is common for those with the disease to develop serious issues with their skin, brain, bones, spleen, heart, kidneys, liver, lungs and even their eyes. The spleen is particularly susceptible, because of its narrow blood vessels and its basic job of clearing old red blood cells.
If we can, through legislation, help alleviate suffering, then we should do so. There are some questions that will need to be dealt with as this bill moves forward. For example, the bill does not define the scope of universal neonatal screening, plus instituting and administering it would require provincial buy-in. A national framework that sets evidence-based national standards for diagnosis and treatment may create friction with provinces unless implemented collaboratively.
I should point out that comparable health-related framework bills, such as the Federal Framework on Lyme Disease Act, call for the creation of guidelines or best practices instead of standards. Clinical standards are evidence-based recommendations produced by medical professional bodies that describe optimal care for specific conditions. They are advisory only and binding on no one. It is also unclear in the legislation who would establish these guidelines.
I should also point out that Canada already has a national strategy for drugs for rare diseases bill. Bill S-201 focuses on one rare disease, so this framework may duplicate or contradict the existing bill. However, almost every piece of legislation we consider has flaws when it is first brought to the House. This is why we discuss it here in the chamber and in even greater detail at the committee stage. Hopefully we can make improvements. The goal is to serve the people of Canada and in this case, those who are suffering from sickle cell disease. I look forward to working together to improve Bill S-201, and the day when sickle cell disease is something consigned to history.