Madam Speaker, I want to begin my remarks by building a little on the remarks made by my colleague from Whitby. She referenced a number of very important advocacy organizations for those who suffer from sickle cell disease, and it is important that we acknowledge their important work.
I would like to take the opportunity to bring to the House's attention another extraordinary organization in the city of Toronto. It is called Camp Jumoke. It is a charitable organization that has been operating since 1994. This is an organization that is entirely volunteer. It receives no government funding but does receive support from the community. Since 1994, it has organized camps every summer for children in our community suffering from sickle cell anemia. I want to acknowledge the extraordinary volunteers and the commitment of the organization for the great work it does. Over the past two decades, I have had the privilege of attending a number of events for this organization and of meeting the children who are affected by sickle cell disease.
As we deal with this issue and speak about declaring a day of awareness, it is important to keep in mind those young kids and their families who have been affected by this disease and to remember those who are working tirelessly in our communities to make a difference and support them.
Because of the nature of these kids' illness and the way they suffer, they miss, on average, 50 days of school each year. They are unable to participate in many things most kids take for granted. To have the opportunity to spend time with each other and experience the fun of a summer camp with people who understand the limitations their health condition places on them is extraordinary. It is a great privilege for the House to have an opportunity to call on all Canadians to keep at the forefront of their thinking those children, their families, and those who support them.
Now I will go to my prepared remarks. We welcome the chance to add our voice in support of Bill S-211. I want to reassure Canadians living with sickle cell disease that the government and the people of Canada support them and have their backs. This act respecting national sickle cell awareness day is a testament to our national commitment to increase awareness of sickle cell disease and to improve diagnosis and treatment as we work to find a long-term cure for those affected by this disease.
Sickle cell disease is a devastating disease, as I said, that cannot be ignored. It is diagnosed more than 100 times each year in this country when a baby is born with this rare blood disorder. Those children join the other 5,000 Canadians already living with this disease and the hundreds of millions of people like them suffering around the world.
These are people who learn to cope with tremendous pain from a disease that, to date, has eluded a cure. The pain episodes they experience are due to bone marrow necrosis. These are people who suffer frequent painful attacks that send them to hospital for blood transfusions and drug therapies to manage their disease. They are far more susceptible to infection and have an increased risk of stroke and vision loss. Perhaps most alarming is that these people expect to live shorter lives than other Canadians, because sickle cell disease can lead to serious bacterial infections and tissue death, which can frequently result in an early death. Life expectancy is calculated to be 30 years less than it is for most Canadians. Aside from the terrible loss of loved ones, Canadian society as a whole is shortchanged when this happens. First and foremost, we lose the valuable contributions of these individuals to our economy and our communities. We also pay the high cost to cover their frequent stays in hospital, an average of $20,000 per week for a one-week stay, and there are generally many more weeks than one.
This does not begin to capture the debilitating impact this disease can have on those individuals living with sickle cell disease and their families and friends. Few of us can imagine how harrowing the diagnosis of sickle cell disease must be, yet it is a reality that a significant proportion of the population knows only too well. Approximately 5% of the world's population carries the gene for sickle cell, which means that it is bound to surface in some Canadian families and communities.
In fact, given Canada's multicultural composition, it is sadly inevitable that we will see more babies born with this rare blood disorder. Studies suggest that the odds of a Hispanic person having sickle cell disease is one in 1,000, and that jumps to one in 500 for those of African ancestry. For a couple to have a child with sickle cell disease, both parents must be carriers. According to research, when both parents are carriers of the gene, each pregnancy they have has a one in four chance of the child being afflicted with sickle cell and a one in two chance that the child will be a carrier, even if he or she does not have the disease. The problem is that people with the sickle cell trait often do not know they have it, as they do not have the symptoms of the disease, even though they can pass the gene for the disease on to their children.
That is why we need all parliamentarians to lend their support to Bill S-211. It would create a national sickle cell awareness day each year on June 19 to promote awareness and to spur action to address this dreadful disease. A dedicated national disease day would help prospective parents understand the risks of being a carrier and potentially having a baby with sickle cell. It would also help to increase diagnosis among newborns to make sure that youngsters with sickle cell get the appropriate treatment as soon as possible. This can prevent the complications and improve the child's quality of life. Thanks to earlier advances in diagnosis and treatment, kids born with this inherited disorder can receive the right treatment and support as they grow up, to enable them to live active and productive lives.
Equally important, this national day would inspire researchers in their quest for a cure for sickle cell disease. As the parliamentary secretary noted earlier, some of this country's top scientists are already increasing our knowledge of these disorders and discovering new treatments. For instance, the Canadian Institutes of Health Research is involved in several clinical trials for the treatment of the disease, as well as in the treatment of sickle cell-related pain. This work is taking place under the International Rare Diseases Research Consortium, which we have helped to establish. The Canadian Institutes of Health Research is also engaged in international collaboration on rare-disease research through E-Rare. That is the European Union's main initiative to fund research into rare diseases. This collaboration is enabling scientists in different countries to work together on a common interdisciplinary research project. These are the kinds of hopeful steps that can be inspired by a national sickle cell awareness day each June 19 in Canada, critical steps that would lead to promising results that can improve the lives of Canadians living with this disease.
Therefore, I take this opportunity to call on all parties to release this potential by supporting the passage of this important bill. Let us be part of the solution to this perplexing health challenge by standing up for Canadians already living with the disease and by helping to ensure that we protect future generations from it.