The 19th June is World Sickle Cell Day and this year, we the Sickle Cell Ambassadors are also educating the general public on Sickle cell disease.
World Sickle Cell Day is a United Nations recognized day to raise awareness of sickle cell at a national and international level. On 22nd December 2008, the United Nations General Assembly adopted a resolution that recognizes sickle cell disease as a public health problem and “one of the world’s foremost genetic diseases.” The resolution calls for members to raise awareness of sickle cell on June 19th of each year at the national and international levels.
What is Sickle Cell (SCD)?
Sickle cell disorders are a group of illnesses that affect the red blood cells. Sickle cell is a genetic condition, which means it is passed on from your parents, and you are born with it; you cannot catch it from other people.
Sickle cell disorders cause your normally round and flexible blood cells to become stiff and sickle-shaped, stopping the blood cells, and the oxygen they carry, from being able to move freely around the body and causing pain. This can cause episodes of severe pain. These painful episodes are referred to as sickle cell crisis. These painful episodes are often treated with strong painkillers such as morphine to control the pain.
People with sickle cell are also at risk of complications such as stroke, acute chest syndrome, blindness, bone damage and priapism (a persistent, painful erection of the penis).
Over time people with sickle cell can experience damage to organs such as the liver, kidney, lungs, heart and spleen. Death can also result from complications of the disorder. Management of sickle cell mostly focuses on preventing and managing complications.
The Sickle Cell Trait
Sickle cell trait is inherited when only one of your parents has passed on the sickle gene, and will never develop into sickle cell disorder. You do not have symptoms from sickle cell trait, so it is a good idea to have a blood test to see if you have sickle cell trait. If you have the trait, the majority of red cells in the blood are normal round-shaped cells. Some sickle-shaped cells may be present under certain conditions.
The trait is not an illness, but if you are planning to have children, then certain factors have to be considered.
If your partner does not have sickle cell trait, then any children you have will not have sickle cell disorder, but they could have the trait (50% chance).
If you and your partner both have the trait, there is a 25% chance that any child conceived may have sickle cell disorder and 50% chance they will have the trait.
The Way Forward
Novartis Partners with Ghana to Treat SCD, Offering Hydroxyurea and Opening Adakveo Trial.
Ghana is working with Novartis to make hydroxyurea treatment available to people with sickle cell disease, and to open a clinical trial in the African country testing the company’s biologic SCD therapy Adakveo (crizanlizumab), recently approved in United States.
The five-year, public-private partnership was formed in January among the Ministry of Health of Ghana, Ghana Health Service, the Sickle Cell Foundation of Ghana, and the pharmaceutical company.
An estimated 15,000 babies are born with sickle cell disease in Ghana each year, and the country’s leaders are hoping to use a holistic approach to battle SCD, improving disease diagnosis and screening, and patient treatment.
Novartis has already delivered more than 20,000 hydroxyurea treatments being used at 11 centers across Ghana with trained personnel, and is expected to cover patients’ needs for up to a year, officials said in a press release. The company has committed to sending 60,000 additional treatments to be used at other centers the country is opening by the close of 2019.
Ghana is the first African nation to commit to offering the international standard of care to its residents.
“I am proud of this bold partnership, and it is my hope that, through this collaboration.
Article by Boakye Benjamin
Student activist and a public speaker