TOPIC
Sickle Cell And Public Health Care: Between Knowledge, Rights, And Reality.
INTRODUCTION
Sickle cell anemia is a medical term that refers to a group of disorders that cause a change in the shape of red blood cells and their subsequent breakdown.
Also called Sickle cell disease, it is inherited and is the contortion of the cells into the shape of a sickle making them to die early and leaving a shortage of healthy cells. A crisis occurs when anemia causes the blockage of blood flow leading to excruciating pain.
Data from research suggests that Nigeria is the epicenter of Sickle Cell Disease with an estimated 4-6 million cases and an estimated 100,000 to 150,000 new cases reported annually. That translates to about three percent of the population or one in every 30 people.
To raise awareness about this, the United Nations General Assembly on December 22, 2008, adopted resolutions, amongst which was the designation of June 19th annually as World Sickle Cell Day to raise awareness about the disease worldwide.
The theme for the 2023 celebration is; “Building and Strengthening Global Sickle Cell Communities, Formalizing New-born Screening and Knowing your Sickle Cell Disease Status.” This, scholars say, reflects a call to recognize the first step, which is understanding the genotype in infants and adults fighting sickle cell.
As plans unfold for the 2023 celebration, questions such as; how informed are Nigerians and Cross Riverians in particular about sickle anemia? And, what percentage of the population actually knows their genotype? begs for answers.
While several educational institutions require such tests in the bio-data of prospective students, there has been a question of privacy in health information management which leads to the question, should that be mandatory information required?
What about the issue of stigmatization of those with Sickle Cell anemia?
Are there laws around such?
What is the level of support infrastructure for those with Sickle Cell Disease? Is it enough?
With several religious institutions now requiring partners to be subjected to different medical tests before marriage, how does this fit in the context of rights and ethics?
These and more form the basis of this week’s ‘The Dialogue With Agba Jalingo ‘with the topic: “Sickle Cell And Public Health Care: Between Knowledge, Rights, And Reality.”
Barrister Onor-Obassi Egim Tawo, the founder of Okares Sickle Cell Foundation, and Dr. Ofonime Essien, a Consultant Hematologist at the University of Calabar Teaching Hospital were guests on the program.
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