Mr. Speaker, instead of cutting my speech in half, I will try to trim it down and focus on some submissions that I think add something new to the debate.
Before I begin, I would like to thank Senator Jane Cordy for her tremendous work in bringing the bill forward in the Senate, and of course my colleague, the hon. member for Dartmouth—Cole Harbour for ensuring that the bill had a sponsor and got to the floor of the House of Commons. He is a tremendous guy, I swear.
Very quickly, the prevalence of this disease has been covered to some extent. We know that somewhere in the range of 5,000 people are aware of their diagnosis in Canada, although I would submit that it could be far more significant, given the poor diagnostic record that we have around the world, and 100 million people may be affected worldwide.
The symptoms of this terrible disorder have been covered at some length and very eloquently. We heard about how the unique shape of the blood cells can cause blockages to the blood vessels and prevent oxygen from getting to tissues, leading to severe chronic pain, tissue death, and indeed, a reduced life expectancy of up to 30 years.
We have also heard about the disproportionate impact on ethnic minorities, particularly those who have ancestors from sub-Saharan Africa, the Mediterranean, India, parts of the Caribbean, and other parts of the world.
We have also heard some great submissions on the incredible cost to society of this disorder, coming in somewhere in the range of $9 million over the course of the life of a person who may suffer from this disease.
One of the things to which we could draw a little extra attention is the importance of early diagnosis as it relates to infant mortality. Newborn screening is extraordinarily important when it comes to sickle cell disorder, because without these diagnostic tools, without recognizing it early on, we may not be able to put newborns on the life support they so desperately need, so they can avoid the immediate symptoms and threats to their lives as they begin.
I would like to just hit on two points, if I could, in the little time that I have. The first is that, of course, this awareness day came to pass initially through a UN General Assembly resolution that urged all of the UN's member states to raise awareness for sickle cell disorder. We have an obligation, even though a General Assembly resolution is soft law, so to speak, according to the International Court of Justice, to consider it as a recommendation of the international community in good faith. I would suggest that, by hosting this debate, we are considering it in good faith, and I would submit to this House that we go one step further and actually adopt the bill into law, so that we can have an awareness day in Canada and do our part to raise awareness.
This disease is not well understood, and what I find somewhat offensive about it is that it may be a result of latent systemic racism that runs through our society. Many social problems do not have a light shone on them because they disproportionately impact ethnic minorities, and the world's western communities that are dominated by wealthy Caucasian culture do not often draw awareness. That simply is not fair.
I cannot help but think of an analogy today, on World AIDS Day. This was a disease, HIV and AIDS, that disproportionately impacted the LGBT community and minorities or other cultures from all around the world. It was not until Magic Johnson came forward in North America and announced that he was HIV positive that it drew the western-centric view to this disease and we started promoting research and searching for a solution to help those who suffered from it.
This is something I think is very important, and creating an awareness day can help raise awareness among our entire community. Even though it may not impact me or people of my ethnicity, it is nevertheless important that we raise awareness so others can benefit from the awareness day.
An awareness day can be used by advocates for this cause to organize blood drives, and they have done so. They can use it to help raise money for research. They can lobby those provinces that do not yet have newborn screening, to ensure that we bring down the rate of infant mortality, not just in Canada but around the world.
I am thankful for this opportunity, and I urge all members of this House to support the bill so we can have sickle cell awareness day in Canada.