Federated Health Charities has been working with the Sickle Cell Awareness Group of Ontario since 2020 to improve the lives of people and families living with sickle cell disease.
Sickle Cell Disease (SCD) affects mostly people of African descent though other forms of sickle cell disease, such as thalassemia, also affect people from the Mediterranean region, the Middle East and East Asia.
Sickle cell disease is one of a group of inherited blood disorders. It affects the shape of red blood cells, which carry oxygen to all parts of the body. Red blood cells are usually round and flexible, so they move easily through blood vessels. In sickle cell disease, some red blood cells are shaped like sickles or crescent moons. These cells also become rigid and sticky, which can slow or block blood flow. This can cause anemia, episodes of pain, swelling of hands and feet, frequent infections, delayed growth or puberty and vision problems.
The mission of the Sickle Cell Awareness Group of Ontario (SCAGO) is to support families and individuals affected by sickle cell disease and advocate on their behalf to improve access to healthcare and better treatments. The funding provided through the annual Federated Health Charities campaign has helped SCAGO to hire permanent staff to better support families and individuals in need, expand their advocacy and education programs, and support young adults with sickle cell disease with their educational needs.
Until recently there were no cures for sickle cell disease; treatment focused on managing the symptoms and pain caused by sickle cell disease, often involving repeated hospital visits.. Early treatments involved bone marrow transplants, but because these treatments rely on finding a compatible donor, this treatment is not available to everyone living with sickle cell disease.
Research has been ongoing for a number of years on alternative and more effective treatments. In November 2023, Britain’s medicines regulator authorized the world’s first gene therapy treatment for sickle cell disease. Following closely, in December 2023, the US Food and Drug Administration (FDA) announced that, after in-depth research at locations such as the Children’s Hospital of Philadelphia, they have approved the first two gene therapies for patients 12 years and older.
Lanre Tunji-Ajayi, President/Chief Executive Officer of SCAGO has said, “It is with much excitement that the sickle cell community welcomes the innovative therapies. These therapies provide a cure for sickle cell disease. While these cures have been approved …Canada is yet to do so. The Sickle Cell Awareness Group of Ontario (SCAGO), hopes to advocate for the approval of these cure therapies to bring relief from sickle cell disease to people living with the disease in our country.”
For people who are interested in more in-depth information, SCAGO will be offering an online event on February 24, 2024, about the new therapies. Please go to https://sicklecellanemia.ca/the-scago-events to join.
Learn more about Sickle Cell Awareness Group of Ontario at Sickle Cell Awareness Group of Ontario (sicklecellanemia.ca).
Donate to Federated Health Charities today to support a healthier Ontario and a better life for people and families living with sickle cell disease.