Breaking the silence: Niger’s fight against sickle cell disease

What if a straightforward blood test conducted before marriage had the power to profoundly change a life’s trajectory?

“From the moment I took the helm of the National Reference Center for Sickle Cell Disease (CNRD), one particular narrative left an indelible mark on me: that of a parent, driven by dire financial constraints, compelled to leave their child suffering from sickle cell disease at the center, simply because they lacked the means to acquire essential medications,” shared Colonel Mariam Boureima Djibo, Director of the CNRD.

This deeply poignant testimony vividly illustrates the silent anguish experienced by numerous families and underscores the urgent need to bolster medical and social support to avert such devastating circumstances.

In Niger, thousands of infants are born annually with sickle cell disease, a chronic and painful genetic condition that, regrettably, remains largely unrecognized. Yet, this profound human tragedy is fundamentally preventable. Despite the absence of exhaustive national statistics, the presence of alarming indicators across various regions has galvanized the CNRD to redouble its efforts to reverse the prevailing trend. The disease manifests when a child inherits the defective gene from both parents, resulting in the homozygous SS form. The high prevalence of carriers, many of whom are unaware of their genetic status, accounts for the persistent incidence of new cases. Therefore, premarital screening and comprehensive genetic counseling are paramount for preventing transmission. The CNRD plays a central role in championing these preventative measures nationwide, empowering at-risk couples to make informed and responsible decisions.

“This experience fortified my conviction that access to quality healthcare must be an inherent right for all, irrespective of their economic standing. It has decisively shaped our actions towards implementing concrete solutions, specifically advocating for the free provision of certain medications, strengthening social welfare assistance, and establishing robust support frameworks for vulnerable families,” the director further elaborated.

Among the flagship initiatives, a pioneering neonatal screening program was successfully launched at the Issaka Gazobi Maternity Hospital. This program has facilitated the early identification of affected newborns, thereby enabling prompt and appropriately tailored medical intervention.

As Dr. Marie Ousseini, a pediatrician actively involved in the project, passionately asserted: “Detecting sickle cell disease during the very first days of life grants these children a genuine opportunity to experience a better, longer life, with significantly reduced suffering.”

This crucial early detection program is seamlessly integrated into a broader prevention strategy, which also encompasses extensive community awareness campaigns, specialized training for medical personnel, and comprehensive psychosocial support for families. Additional actions undertaken include continuous medical monitoring, subsidization of essential medications, therapeutic education, psychological counseling, and active collaboration with various patient associations.

Under the astute leadership of Dr. Mariam, the CNRD has achieved remarkable advancements. These include the establishment of a state-of-the-art intensive care unit, the recruitment of highly specialized professionals (a psychologist, an epidemiologist, and a resuscitation specialist), the acquisition of cutting-edge medical equipment, intensified public awareness efforts, and the provision of free screening services to over 2,000 young individuals in 2024.

Forthcoming projects include the strategic expansion of premarital screening initiatives to encompass all regions, continuous enhancement of the national health information system, further strengthening of psychosocial support services, the integration of sickle cell disease into core national health policies, the construction of a modern new center in Niamey, and the rotational hosting of World Sickle Cell Day events across the country.

Sickle cell disease is not an insurmountable destiny. Concrete, accessible solutions are readily available, contingent upon the active and collective engagement of all social stakeholders. The ongoing battle against this condition rests upon several indispensable pillars: proactive preventive screening for young people before marriage, thorough education of children by their parents, widespread community awareness facilitated by local leaders, and the unwavering commitment of policymakers to formulate and implement inclusive and sustainable health policies.

The World Health Organization (WHO) serves as an indispensable partner to the CNRD. Commemorating World Sickle Cell Day on June 19, 2024, the WHO made a substantial donation of vital medicines and medical consumables to the center. This invaluable contribution, lauded by both beneficiaries and health authorities, has significantly enhanced the center’s capacity for 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 assistance.

Beyond this crucial material support, the WHO has committed to strengthening the CNRD’s operational capacities. During an official visit on January 28, 2025, the interim WHO Representative in Niger, Dr. Casimir Manengu, commended the center’s existence and put forth a proposal for its decentralization: “This specialized center, dedicated to the reception and comprehensive management of sickle cell disease, deserves to be decentralized to effectively reach all individuals in need across the entire national territory.”

According to Dr. Batouré Oumarou, the WHO additionally intends to support the mobilization of technical and financial partners, spearhead advocacy efforts on behalf of the CNRD, and facilitate the execution of rigorous scientific studies to inform better decision-making. These forward-looking support initiatives unequivocally demonstrate WHO Niger’s steadfast commitment to sustainably reinforcing the fight against sickle cell disease within the nation.