World Sickle Cell Day: Dr Asare urges collective action as GICG marks 50 years of sickle cell care

The Senior Specialist Haematologist at the Ghana Institute of Clinical Genetics (GICG), Dr Eugenia Vicky Naa Kwarley Asare, has issued a clarion call for collective national and global action to support individuals living with sickle cell disease, as Ghana marked both World Sickle Cell Day and 50 years of dedicated care at the GICG.

Speaking at a commemorative event held at the institute within Korle-Bu Teaching Hospital, Dr Asare highlighted the pressing burden of sickle cell disease in Ghana and across sub-Saharan Africa, emphasising the urgent need for awareness, investment, and compassion.

“Today, the world pauses to recognise and salute the courage of over 8 million people living with sickle cell disease — and the resilience of the caregivers who walk beside them every day,” she said. “It is not just a day for awareness — it is a call to action.”

Ghana records around 18,000 new cases of sickle cell disease each year, with approximately 2% of newborns diagnosed and over half of them affected by the most severe form, Sickle Cell Anaemia. One in every three Ghanaians carries the HbS and/or HbC gene. Dr Asare stressed that these figures are not mere statistics but a human reality that calls for sustained national attention and support.

This year’s observance was particularly symbolic, coinciding with the 50th anniversary of the GICG. Dr Asare paid glowing tribute to the institute’s founder, the late Professor Felix Konotey-Ahulu, a pioneer in sickle cell care in Africa, who passed away just last month.

“Fifty years ago, a visionary, the late Professor Felix Konotey-Ahulu, founded this institute with one dream — that people with sickle cell disease in Ghana and across Africa could live with dignity, receive expert care, and experience hope,” she said.

Over the past five decades, the GICG has served more than 27,000 patients, contributed to groundbreaking research, and trained generations of healthcare professionals, earning its place as a beacon of excellence and compassion.

A minute’s silence was observed in honour of Professor Konotey-Ahulu, whose legacy, Dr Asare noted, lives on “in every patient we serve, every life we save, every step forward we take.”

Dr Asare closed her address with a strong appeal to all stakeholders to use the day not only to celebrate but to recommit to the cause.

“Let us raise our voices, shine the light on sickle cell disease, and work together to ensure that those living with it are not left behind,” she urged. “Together, we can create a future of care, compassion, and cure.”

More on Sickle Cell Disease

Sickle cell disease (SCD) is a chronic hemolytic disorder caused by a point mutation at position six of the beta-globin gene. In SCD, individuals inherit two abnormal haemoglobin genes, one of which must be haemoglobin S. Due to the inheritance of an abnormal haemoglobin, individuals with SCD—ranging from newborns to adults—face an increased risk of various complications and require multidisciplinary care.

Since the 1930s, a diverse group of individuals has initiated and advanced pediatric and adult SCD care at KBTH. Initially, care for adolescents and adults with SCD was provided in the medical block at KBTH, despite facing challenges.

The late Prof. Felix I.D. Konotey-Ahulu recognized these challenges and fought hard for individuals with genetic disorders to have their own clinic.

About GICG

In 1974, the Ghana Institute of Clinical Genetics (GICG) was established as a subvented organisation under the Ministry of Health, with the late Prof. Felix I.D. Konotey-Ahulu appointed as the first Director, and the late Dr. Michael Baddoo serving as the Director of Medical Services. When the GICG was initially founded, it received support from the VALCO Fund and the Ministry of Health, while the World Health Organization (WHO) and the International Atomic Energy Agency (IAEA) provided generous research funding, enabling the GICG to focus on service, education, and research.

In 1976, Brigadier Odartey-Wellington, the Commissioner of Health, officially commissioned the GICG, marking a significant milestone in the advancement of clinical genetics in Ghana.

After its establishment, the GICG primarily operated on an outpatient basis. Patients presenting with acute complications were admitted to the second floor of the medical block.

In the 1990s, daycare and emergency services were introduced, with outpatient and daycare services in an open area of the current outpatient department. The clinic had only a few beds and benches with mattresses to accommodate patients. Despite being understaffed and facing a high patient load, we persevered.

In the 2000s, various renovations were carried out by NGOs, institutions (both foreign and local), and SCD patient support groups. These renovations included a reception area, a general outpatient department, a new roof, wards with reclining beds for patients, and laboratory equipment.

To support its mission of providing better health management to all individuals living with SCD, GICG receives referrals from across Ghana, primarily from the southern region. Initially, GICG had a pediatric unit within the Department of Child Health at KBTH, along with an adolescent and adult unit.

All individuals diagnosed with SCD, from children to adults, were registered in the GICG registry. In the early 2010s, the pediatric SCD clinic separated from the adolescent and adult SCD clinic at GICG and became one of the specialized clinics under the Department of Child Health at KBTH.

Currently, GICG provides clinical services for adolescents (≥age 13 years) and adults, which include daily (Monday to Friday) general outpatient clinics, special clinics for disease-modifying drugs such as hydroxyurea, chronic leg ulcer treatment, and care for geriatric and renal complications. Daycare/emergency services are also available on weekdays, alongside general laboratory, public health, and pharmacy services managed by the Korle Bu Polyclinic Pharmacy. The institute has over 27,000 registered patients, with approximately 3,000 patients and 10,000 patient visits annually. The core functions of the Institute include patient care, patient/public education, and clinical research.

Other doctors who have sacrificed for the care of individuals with SCD include the late Dr. Gabriel G. Ampomah Twumasi and Dr. Fredericka Sey.

The past and current staff and patients of GICG have also played an instrumental role in caring for our patients and in groundbreaking global clinical trials for SCD, placing the institute on the world map for SCD.