SickKids-Caribbean Initiative supports World Sickle Cell Disease Awareness Day

Today is World Sickle Cell Disease Awareness Day. Sickle cell disease (SCD) is a hereditary blood disorder which causes abnormal haemoglobin - the protein in red blood cells that carry oxygen from the lungs to the body’s tissues. Normal haemoglobin is shaped like a disk and can easily move through blood vessels. In SCD, red blood cells are long and narrow, or ‘sickle-shaped,’ blocking veins and arteries and preventing oxygen from being delivered effectively. Children with SCD are extremely vulnerable to infection and experience health problems that cause great pain and difficulty breathing. In Ontario, one in 2,300 babies are born with this disease.

There is no cure for SCD; however, cost-effective treatments exist to manage the pain and other symptoms of the disease. One of the most important components of treatment is early intervention through methods such as newborn screening. Though recent years have seen significant advances in management of SCD in high-income countries like Canada, there is still much work to be done in low-resource settings.

SickKids expert Dr. Isaac Odame has played a key role in the design and implementation of universal newborn screening for sickle cell disease in Ontario and influenced its implementation in other Canadian provinces. In 2009, he set up the Global Sickle Cell Disease Network (GSCDN), which brings together leading experts from high-, middle- and low-income countries to work together to improve the outcomes and quality of life for children living with sickle cell.

Odame is now applying his experience and expertise with SCD to the Caribbean where one in 400 children are born with the disease. He is co-leading the SCD working group of the SickKids-Caribbean Initiative (SCI), a capacity building program at the SickKids Centre for Global Child Health. SCI is a not-for-profit collaboration between SickKids and seven institutions across six Caribbean countries: The Bahamas, Barbados, Jamaica, St. Lucia, St. Vincent and the Grenadines and Trinidad and Tobago. SCI strives to improve the outcomes and quality of life for children living with cancer and blood disorders in the Caribbean.

Through training and cooperation, SCI is collectively building capacity for diagnosis and clinical care of children with SCD, a blood disorder that affects many lives in the Caribbean. The goal of the SCD working group is to enhance capacity at comprehensive care centres so that positively diagnosed patients can receive appropriate treatment. SCI is also working to build diagnostic competencies within designated laboratories to enable the effective and sustainable development of universal newborn screening programs. The group is currently piloting one such screening program in St. Lucia, with the aim to make universal screening accessible across the Caribbean.

“We have already demonstrated feasibility in testing newborns in St. Lucia using a centralized laboratory in Jamaica. With this model, we are poised to expand newborn screening for SCD with linkage to comprehensive care throughout the SCI countries. This will have tremendous impact in preventing early deaths, while improving the quality of life of children who survive early childhood,” says Dr. Odame.

Learn more about the SickKids-Caribbean Initiative (SCI).