SENATORS’ STATEMENTS — International Thalessemia Day

Honourable colleagues, it’s with pleasure today that I rise to recognize International Thalassemia Day. The twenty-sixth anniversary was globally commemorated on Friday, May 8, 2020.

Thalassemia, also known as Mediterranean Anemia, or Cooley’s Anemia, is a genetic blood disorder where patients cannot make their own red blood cells. This results in severe life-threatening anemia which can only be treated by regular blood cell transfusions. Without blood transfusions, a child with thalassemia could not live past 10 years of age. Patients are tethered to hospital systems to receive their life-sustaining red blood cells and transfusions every month, for life.

Blood transfusions are a necessary treatment for thalassemia but also cause secondary iron overload. Iron is essential in red blood cells, but once those blood cells break down, iron is deposited in vital organs, including the heart, liver and pancreas. Too much iron can cause severe damage to organs and tissue and can lead to early death unless it is removed. For people with thalassemia, the excess iron that builds up over the years in blood transfusions can be removed with medications that can cost up to $75,000 per year per patient. Without these medications, a person with thalassemia would not live past their twenties. Thalassemia affects about 1,200 children and adults across Canada. It predominantly affects Canadians whose ancestry comes from the Mediterranean region, North Africa, the Middle East, Southeast Asia and the Pacific Rim. In Canada, it is estimated that 5 to 7% of people in these populations are carriers.

The Thalassemia Foundation of Canada is a small volunteer-run charity that was established in 1982 to raise awareness to advocate for comprehensive health care and to fund thalassemia scientific research. They have supported scientific research and fellowship grants in Canada’s universities and teaching hospitals. Their efforts have expanded to advocate for comprehensive health care for patients over 18 years old. Although the number of children who have survived into adulthood has increased, the health care programs for adult thalassemia patients have not expanded to meet this need at all treatment centres.

All patients have benefited from excellent pediatric care models pioneered in the 1980s — so, too, adults with thalassemia need a similar level of care.

Colleagues, you can do your part by using your communication channels to raise awareness about thalassemia and the valiant efforts of the Thalassemia Foundation of Canada.

As I mentioned earlier, patients with thalassemia require blood transfusions to survive. Thankfully, in Canada, they can rely on the generosity of blood donors who give blood at Canadian Blood Services or Héma-Québec. The thalassemia community is incredibly grateful to all donors for their lifesaving gifts. On this day, I would also like to express gratitude and acknowledge World Blood Donor Day, which is on June 14. Thank you.