What if a simple blood test before marriage could profoundly alter a life’s trajectory? 

“Upon assuming leadership of the National Reference Center for Sickle Cell Disease (CNRD), one particular story resonated deeply with me: that of a parent, driven by destitution, forced to abandon their child afflicted with sickle cell disease at the center, unable to afford essential medications,” shared Medical Colonel Mariam Boureima Djibo, the Director of CNRD. 

This poignant account underscores the silent suffering endured by countless families and highlights the critical need to enhance medical and social support to prevent such heartbreaking situations.

In Niger, thousands of children are born annually with sickle cell disease, a painful genetic condition that remains largely misunderstood. Yet, this tragedy is often preventable. Despite the absence of comprehensive national data, alarming indicators across several regions compel the CNRD to redouble its efforts to reverse this trend. The disease manifests when a child inherits the defective gene from both parents (homozygous SS form). The high prevalence of carriers, who are frequently unaware of their status, explains the persistent occurrence of new cases. Consequently, prenuptial screening and genetic counseling are paramount for preventing transmission. The CNRD plays a pivotal role in promoting these measures nationwide, enabling at-risk couples to make informed decisions.

“This experience solidified my conviction that access to healthcare must be a universal right, irrespective of financial standing. It has guided our initiatives towards concrete solutions, including advocating for the free provision of certain medications, bolstering social assistance, and implementing support mechanisms for vulnerable families,” the Director further elaborated.

Among the flagship initiatives, a pilot neonatal screening program was launched at the Issaka Gazobi Maternity Hospital. This program has successfully identified affected newborns early, paving the way for prompt and tailored care. 

As Dr. Marie Ousseini, a pediatrician involved in the project, emphasized: “Detecting sickle cell disease in the very first days of life offers these children a genuine opportunity to live better, longer, and with less suffering.”

 This early detection is an integral part of a broader prevention strategy, which also encompasses community awareness campaigns, training for medical professionals, and psychosocial support for families. Other actions undertaken include consistent medical follow-up, subsidized essential medications, therapeutic education, psychological counseling, and collaboration with patient associations.

Under the astute leadership of Dr. Mariam, the CNRD has achieved remarkable progress. These accomplishments include the establishment of an intensive care unit, the recruitment of specialized personnel (psychologist, epidemiologist, intensivist), the acquisition of cutting-edge equipment, heightened public awareness, and the free screening of over 2,000 young individuals in 2024. 

Forthcoming projects include expanding prenuptial screening across all regions, enhancing the health information system, reinforcing psychosocial assistance, integrating sickle cell disease into national health policies, constructing a new dedicated center in Niamey, and organizing the annual World Sickle Cell Day on a rotating basis.

Sickle cell disease is not an insurmountable fate. Concrete and accessible solutions exist, provided that all social stakeholders actively engage. The battle against this condition relies on several crucial pillars: preventive screening for young people before marriage, parental education for children, community sensitization led by local leaders, and the unwavering commitment of policymakers to foster inclusive and sustainable health policies.

The World Health Organization (WHO) stands as a vital partner to the CNRD. On the occasion of World Sickle Cell Day, observed on June 19, 2024, the WHO generously provided a substantial consignment of medicines and medical consumables to the center. This donation, lauded by beneficiaries and health authorities alike, significantly bolstered patient care. Ms. Asmaou Salifou, a mother of eight children, three of whom live with sickle cell disease, conveyed her profound gratitude for this life-sustaining aid. 

Beyond this tangible support, the WHO has pledged to strengthen the CNRD’s operational capabilities. During an official visit on January 28, 2025, the interim WHO Representative in Niger, Dr. Casimir Manengu, commended the center’s existence and proposed its decentralization: “This center, specifically dedicated to the reception and management of sickle cell disease, deserves to be decentralized to reach all those in need across the national territory.” 

According to Dr. Batouré Oumarou, the WHO also intends to support the mobilization of technical and financial partners, champion advocacy initiatives for the CNRD, and facilitate scientific studies to inform better decision-making. These prospective support efforts underscore WHO Niger’s steadfast commitment to sustainably fortifying the fight against sickle cell disease within the nation.