Mr. Speaker, thank you for the opportunity today to voice my strong support for this very worthy and necessary legislation. I am proud to promote and support Bill S-211, an act that would make June 19 a national day to raise awareness for sickle cell disease, or SCD for short.
I want to thank Senator Jane Cordy and the member for Dartmouth—Cole Harbour for bringing this extremely important bill to the House.
By supporting the bill, we can join the African Union, the United Nations, and the World Health Organization in observing world sickle cell awareness day on the June 19 every year. Setting aside this dedicated day is not about joining an international club. It is about supporting people living with sickle cell disease, a devastating genetic disorder that affects millions of people around the world, including an estimated 5,000 Canadians.
People with sickle cell disease experience frequent bouts of debilitating pain that damages their quality of life and which, very often, shortens their lives. This is a very complex disease that still baffles the medical community.
To try to explain it simply, people who have SCD inherit two abnormal hemoglobin genes, one from each parent. At least one of the two abnormal genes causes a person's body to produce an abnormal type of hemoglobin called “hemoglobin S”. When the person has two hemoglobin S genes, the disease is called sickle cell anemia. This is the most common and generally most severe kind of sickle cell disease.
Without getting too technical, sickle hemoglobin is not like normal hemoglobin. It can form stiff rods within the red blood cell, changing it into a crescent or sickle shape. These cells are not flexible and stick to vessel walls. This can cause a blockage that slows or stops the flow of blood. When this happens, oxygen cannot reach nearby tissues, leading to a long list of complications that can compromise the person's life.
Sickle cell disease provokes attacks of sudden, severe pain that can occur without warning. The person usually needs to go to the hospital for treatment. Blood transfusions and drug therapies are used to treat and manage the disease. Stem cell transplants are the only potential cure.
It is hard to watch a child suffering from a pain attack, but it is heartbreaking to know that this is something they will rarely escape as they grow older. Adolescents and adults with SCD often suffer from chronic pain that limits their ability to attend school or go to work. Needless to say, this has negative ripple effects on their families' incomes and housing.
However, even that does not capture the long-term consequences of SCD. Over a lifetime, the disease can cause major organ damage that eventually results in premature death. Tragically, most will endure excruciating pain for most of the years they have.
As much as this takes a terrible toll on the individuals involved and their loved ones, it also comes at a high price for the health care system. The lifetime cost for a patient with sickle cell disease has been estimated at $9 million. In Canada, the total cost to treat patients with sickle cell disease for their lifetime may be approximately $4.5 billion.
More than dollars and cents, common sense dictates that we must do whatever we can to improve the lives of these individuals. I have seen patients who suffer from this serious blood disorder. In every case, I can attest to the serious health challenges they face. Therefore, I know how crucial it is that we raise awareness of sickle cell disease.
I also know from experience the importance of genetic testing for prospective parents and the necessity of screening newborns for the disorder. Early diagnosis and regular medical care can prevent complications and improve the well-being of affected individuals and their families.
Sickle cell disease is most common among individuals whose ancestors come from India, Saudi Arabia, and Mediterranean and sub-Saharan African countries, but in rare cases, it also affects Caucasians.
One of the best ways Canadians can help is by donating blood to provide sickle cell disease patients with the blood transfusions they require, not just on June 19 but every day of the year. Donors are especially needed from ethnic communities whose heritage traces back to the Mediterranean, Middle East, South Asia, Africa, and the Caribbean.
We also need to find ways to better educate Canadians about this disease and explore ways to work more productively with our partners all across the country to provide better support for sickle cell disease patients and their families.
Especially important is to continue research programs that spawn new sickle cell disease treatments that will someday lead to a cure.
Advancing these goals is precisely what Bill S-211 sets out to do. Once passed, this bill would dedicate June 19 as national sickle cell awareness day in Canada. This would send a clear signal to everyone, as a nation, that we need to improve the diagnosis and treatment of sickle cell disease and demonstrate our unwavering support for Canadians living with this terrible disease.
Earlier this year, I had the pleasure of meeting with members of the Sickle Cell Disease Association of Canada. I am proud of the work already under way in this country to alleviate the chronic pain of sickle cell disease sufferers.
Through the Canadian Institutes of Health Research, the Government of Canada has invested resources in rare disease research, including $1.3 million for sickle cell disease research, since 2010. Top researchers across Canada are actively working to identify long-term solutions to the health problems facing people with sickle cell disease.
CIHR is also a founding member of the International Rare Diseases Research Consortium. It was established to explain the causes of rare disorders and to develop diagnostic tools and treatments. There are currently four sickle cell disease clinical trials under way as part of this major international research initiative.
These studies will contribute to increasing our knowledge about the disorder and hopefully lead to the discovery of new treatments while ultimately pinpointing the cure that people with SCD seek. Until that day comes, the Government of Canada will continue to work with our provincial and territorial partners. Together we will address the health challenges confronting Canadians as we transform Canada's health system to ensure that it meets the needs of each and every one of us.
It is now up to all parliamentarians to do their part by designating June 19 national sickle cell awareness day in Canada. I encourage all members to lend their support to Bill S-211, which would provide people living with sickle cell disease the national recognition they deserve.
Once again, I want to thank Senator Jane Cordy and the member for Dartmouth—Cole Harbour for bringing this extremely relevant piece of legislation to the House. Canadians with sickle cell disease are counting on us to improve their lives and livelihoods as we improve their health and quality of life. Let us make sure we do not let them down.