Raise Awareness and Help Reduce Stigma and Discrimination Experienced by Families with Children, Youth, and Adults Living with Sickle Cell Disease
World Sickle Cell Day- June 19
The World Health Organization (2006) and the United Nations (2008) have recognized sickle cell disease (SCD) as a global public health priority and in order to raise awareness of the disease, designated the 19th day of June every year as World Sickle Cell Day (WSCD). The World Health Organization (WHO) estimates that sickle-cell disease affects nearly 100 million people worldwide and over 300 000 children are born every year with the condition.
Tragically, the majority of these individuals will die in childhood due to lack of basic care, and those who survive into adulthood too often face a life of chronic disability and premature death unless disease-modifying therapy can be provided.
The WHO, therefore, urges countries affected by SCD to establish health programs at the national level and to promote access to medical services for people affected by the disease1
It is noteworthy that on November 22nd, 2017, through the advocacy work of the Sickle Cell Disease Association of Canada and member organizations including the Sickle Cell Awareness Group of Ontario, Canada recognized June 19th as National Sickle Cell Day. Additionally, several cities in Ontario continue yearly to designate June 19th as World Sickle Cell Day and illuminate major landmarks to commemorate the day.
SCD in Ontario and Canada
SCAGO recognizes SCD as an increasingly important medical issue in the province. Out of the estimated 6000 Canadians affected by sickle cell disease, 3,3452 live in Ontario and over 65% of babies born with the disease nationally are born in the province of Ontario.
Sickle Cell Trait
Amongst individuals with ancestral roots in regions of the world traditionally affected by malaria (South-Asia, Southern Europe, Middle East, African, Mediterranean, and the Caribbean), the prevalence of the gene for sickle cell disease may be as high as I in 4 or 25% of the population. Individuals who carry this gene have an asymptomatic condition known as sickle cell trait.
Over 150,000 people in Ontario carry a single sickle-cell gene and so have sickle cell trait. The majority of these individuals are not aware of their carrier status and are at risk of having a child affected with SCD. In view of this, sickle cell trait should be considered a significant public health concern, as, without routine screening and awareness among the general public, the number of individuals in Ontario and Canada affected by sickle cell disease will continue to rise. This will increasingly place a significant burden both on families and the healthcare system as a whole.
While the possibility of a cure by gene therapy has recently made headlines, the basic quality of care provided to sickle cell patients in Canada remains well below the standard of care recommended by experts in the field.
Patients continue to be stigmatized, branded as “drug seekers” when presenting for medical treatment of severe vaso-occlusive pain crises, and yet continue to be denied access to comprehensive care, which could prevent those crises.
Reducing Stigma and Discrimination:
Through education and awareness programs, SCAGO is doing its part to reduce the stigma and discrimination faced by the families affected by SCD.
Media partners, we hope you will support our efforts of exposing the ills associated with sickle cell disease. For June 19th story/interview opportunities, contact us via firstname.lastname@example.org or by calling 416-745-4267 (office) 416-951-6981 (cell) and we thank you in advance for your interest and time.
World Sickle Cell Day Hashtags: #SCAGO, #WSCD, #Eachreachsix; #sicklecellawareness; #gettested; for #sicklecelltrait; #Nationalsicklecellday.
Sickle Cell Awareness Group of Ontario also known as SCAGO is the largest patient support and advocacy association serving families with children, youth, and adults with sickle cell disease. It was established in 2005 to:
- Improve treatment and care received by patients living with SCD by providing education on the disease to medical and allied health professionals.
- Educate the community on SCD and sickle cell trait with the expected outcome of reducing the number of new births with the disease.
- Support those living with the disease by providing access to life-enhancing programs not limited to peer support group meetings, scholarships, emergency grants, self-management skills, counseling navigation.
- Advocate on their behalf with the government, school, and workplace.
What is SCD?
SCD or sickle cell anemia is a hereditary genetic disease characterized by the presence of abnormal crescent-shaped red blood cells. People with SCD have abnormal haemoglobin (called haemoglobin S or sickle haemoglobin) in their red blood cells. Haemoglobin is a protein in red blood cells that carries oxygen throughout the body. The lack of tissue oxygen can cause attacks of sudden, excruciating, and severe pain called pain crises. These pain attacks can occur without warning, with pain levels often described as higher than childbirth labour pain and cancer-related pain.
The red cell sickling and poor oxygen delivery can also cause organ damage. Over a lifetime, SCD can harm a person’s spleen, brain, eyes, lungs, liver, heart, kidneys, joints, bones, or skin. It can cause a stroke in children as young as two years of age! At the present time, hematopoietic stem cell transplantation is the only cure for SCD