SCDSG advocates for greater participation of patient support organizations in policy development on World Sickle Cell Day

World Sickle Cell Day, observed annually on June 19th, embraces the 2024 theme "Hope Through Progress: Advancing Care Globally."

This theme highlights the critical need for accessible and equitable healthcare across Ghana. It serves as a reminder to amplify awareness of Sickle Cell Disease (SCD), evaluate its present impact, address the challenges it poses, and persist in efforts to break a cycle that has a profound effect on individuals and communities.

SCDSG acknowledges the life-saving sacrifices made by the healthcare workforce, the government, and the Ministry of Health, along with all NGOs united in the fight against Sickle Cell Disease in Ghana. SCDSG also recognizes the trailblazers who ensure that greater awareness is created for Sickle Cell Disease as a whole in Ghana.

Sickle Cell Disease is a genetic disorder caused by mutations in the beta-globin gene, leading to the production of abnormal hemoglobin, termed hemoglobin S (HbS). This anomaly causes red blood cells to stiffen and assume a sickle shape, potentially causing blockages in blood circulation, resulting in pain and potential organ damage.

HbSS is the most prevalent and severe form of sickle cell disease (SCD), caused by inheriting two hemoglobin S genes. This leads to a shortened lifespan of red blood cells (RBCs), lasting only 10-20 days in contrast to the typical 120-day lifespan of normal RBCs.

HbAS known as SCD-trait or carrier is a condition where one inherits one haemoglobin S gene and one normal hemoglobin A gene from parents.

HbSC represents a less severe type of SCD, while the severity of HbS beta thalassemia depends on the level of normal beta-globin production.

Annually, approximately 300,000 newborns are diagnosed with SCD, with 75% of the global burden of the disease concentrated in Sub-Saharan Africa.

An estimated 50% to 90% of infants born with SCD in this region die undiagnosed before age five, largely due to the absence of affordable, comprehensive healthcare.

Without prompt interventions, about 50-80% of individuals with SCD in Sub-Saharan Africa, including Ghana, will not survive into adulthood.

Improved life expectancy can result from holistic healthcare that includes newborn screening, vaccinations, penicillin prophylaxis, hydroxyurea therapy, and regular medical evaluations to monitor patient conditions.

Pain management and blood transfusions are crucial during sickle cell disease (SCD) crises. Lifesaving advocacy, community education, and genetic counseling are of equal importance.

The incorporation of Hydroxyurea into Ghana's National Health Insurance Scheme (NHIS) signifies a major advancement, providing hope to numerous individuals.

However, the path to a comprehensive sickle cell disease management system accessible to all is far from complete.

The Sickle Cell Disease Support Group (SCDSG) seizes this moment to shed light on the issues and obstacles that individuals with Sickle Cell Disease (SCD) encounter in Ghana.

To start, the intermittent shortages of Hydroxyurea and its restricted availability under the National Health Insurance Scheme at major government hospitals nationwide, coupled with the inadequate drug compounding facilities in hospital pharmacies, pose daily critical challenges for SCD patients, which are vital for their survival.

We urge the government to incorporate Penicillin Prophylaxis into the National Health Insurance Scheme to improve survival rates beyond the age of five for Sickle Cell Disease patients in Ghana.

Moreover, the lack of Drug Compounding and Reconstitution Pharmacies in various Government Hospitals deters clinic attendance and poses a considerable threat to all SCD patients, especially children.

corporate organizations, NGOs, churches, and individuals are encouraged to support the National Blood Service to ensure a consistent blood supply for all who need it, particularly to prevent deaths due to blood shortages.

The Sickle Cell Disease Support Group (SCDSG) is advocating for the expansion of Specialised Sickle Cell clinics across the nation, including areas beyond the capital city, to guarantee equitable healthcare access for everyone.

We additionally recommend that the general public become knowledgeable about their genotype to make informed choices that can prevent the occurrence of Sickle Cell Disease (SCD) in newborns.

To our cherished individuals living with Sickle Cell Disease, continue to embrace your support network—your friends, family, and dedicated healthcare professionals who stand by you. Treasure every small victory—the times when discomfort subsides, when joy fills the air, and when hope softly whispers, "You can do it." Together, we can overcome and break the cycle of hematopoietic mutation that started 7,000 years ago.

Blessings to all.