Madam Speaker, it is a pleasure to rise in the House today to speak in favour of Bill S-211, an act respecting national sickle cell awareness day. This legislation seeks to designate June 19 national sickle cell awareness day in Canada. This is in line with many international groups that have also recognized the importance of raising awareness of this terrible disease. These include the African Union, the World Health Organization, and the United Nations, which designated this day for sickle cell disease in 2008.
There was a time when I was unaware of what went on in terms of the creation of these days and the benefits thereof, but since I have come to the House of Commons, nearly every day we have something presented as an awareness day for this or that topic. I have learned so much about the different needs of people suffering from various illnesses and about different causes. There is a lot of value in bringing forward and celebrating such a day when this kind of information can be brought to bear and the government can be informed of what the needs are to eradicate this terrible disease.
Today is not the first time sickle cell awareness has been brought before the House. A Nova Scotia senator brought a similar bill forward in early 2015. The same topic was brought forward by the current Minister of Science, who introduced Bill C-605 in 2010.
Designating June 19 national sickle cell awareness day would not give holiday status to this date. It would be used as a tool nationwide to raise awareness of this disease not only in the House but in schools, in workplaces, and at dinner tables across the country.
For these reasons, and many more, I would join my voice to those of my colleagues across the House and in the other House in favour of Bill S-211.
I would like to use my time today not only to show my strong support for the bill but to do everything in my power to educate Canadians about this little known disease.
Sickle cell disease is a condition people are born with. It is a hereditary disease caused by abnormal hemoglobin. Instead of being round like the letter o, in people with sickle cell disease, these cells look more like the letter c, similar to a farmer's sickle.
Hemoglobin is the part of the blood that carries oxygen and allows the vital organs to function. That ability is exactly what sickle cell disease affects. The red blood cells become hard and clog the blood vessels. Although normal red blood cells live for 120 days, sickle cells have a lifespan of no more than 20 days. The rapid breakdown of these cells often leads to anemia.
Although there is no patient registry in Canada, it is estimated that approximately 5,000 Canadians live with sickle cell disease today. In the United States, the number is close to 100,000. Worldwide, sickle cell disease affects almost 100 million people. However, many Canadians do not know the symptoms, effects, or treatments related to this painful disease.
Sickle cell disease causes complications in two ways. First is the breakdown of red blood cells at a rapid rate. Second is the blockage of blood flow in blood vessels. Both problems can cause immense pain, especially in the bones.
Sickle cell disease can also lead to a whole list of other complications, including damage to the liver, kidneys, and heart; infection; chest pain; acute joint pain; blindness; and stroke. It can also cause irreparable damage to major organs, going as far as heart failure. This multi-system disorder has also been known to cause premature death.
Sickle cell disease does not have a cure. However, it is treatable, and I would like to recognize all the medical professionals and caregivers who treat and support those who live with sickle cell disease across our country.
Simple lifestyle changes have been shown to make a tremendous difference in the disease, and those living with sickle cell disease are encouraged to exercise regularly, eat a healthy diet, and reduce the amount of stress in their lives. In fact, I think we could all benefit from doing those three things.
Many complications can be prevented or treated through regular blood transfusions and through powerful medication. Those living with sickle cell disease routinely have between 10 and 20 blood transfusions every month. As such, I want to encourage Canadians to donate blood whenever possible.
This is a disease people live with around the clock, and we need to do more to draw attention to the way it affects Canadians and the need to improve research and data collection. Many people say that education is the first stage in the process and that a national sickle cell awareness day is an important step.
Sickle cell screening tests are available, but many people do not know about them. Since sickle cell disease is hereditary, it is very important to get the word out to those who want to have children. Universal sickle cell screening now exists in every state in the United States and, in Canada, this test is available upon request in Ontario, British Columbia, Yukon, New Brunswick, Prince Edward Island, and Nova Scotia. Screening is available in a limited number of hospitals in Quebec, but plans are being made to make the test available across the province as soon as possible.
When a child is born with sickle cell disease, we do not always know what complications will develop. For the first six months of life, high levels of fetal hemoglobin in the blood help to prevent most complications, but things can quickly go wrong after that.
Infection is the biggest concern for children with this disease. According to the World Health Organization, sickle cell disease is one of the main causes of death in children under the age of five. We need to do more to ensure that sickle cell disease detection, awareness, and education become an integral part of our health system.
As I said in my speech, it is important that we bring awareness to this disease, do research into how we can prevent the disease or reduce some of the terrible effects it has on different organs in the system, support those who are living with the disease and those who are caregivers, and share with our global partners. As I said, we have only 5,000 people in Canada who have the disease, but there are millions around the world who have it.
There is research happening around the world. We need to be at that research table. We need to be collaborating. We have seen Canada lead in medical health research when it comes to vaccines, disease, and things like brain complications. We can contribute, but we also need to work with our partners around the world to have a big enough population to learn how we can combat this disease.
In closing, I would like to thank the sponsor of the bill. I encourage all my colleagues in this House to join me in support of those living with sickle cell disease and in support of those who care for them. With groups like the African Union, the United Nations Organization for Education, Science and Culture, and the World Health Organization, I want to recognize June 19 as sickle cell awareness day.
I believe Canada should take this step in the right direction and raise awareness about this important cause.