What if a simple blood analysis before marriage could fundamentally alter a life’s trajectory? 

“Upon my arrival at the helm of the National Reference Center for Sickle Cell Disease (CNRD), one particular story left an indelible mark: that of a parent, driven by destitution, forced to abandon their child suffering from sickle cell disease at the center, unable to afford essential medications,” shared Doctor-Colonel Mariam Boureima Djibo, the CNRD’s director. 

This poignant account underscores the silent anguish endured by countless families and highlights the urgent necessity for enhanced medical and social assistance to prevent such tragic circumstances.

In Niger, thousands of infants are born each year with sickle cell disease, a painful genetic condition that remains far too often misunderstood. Yet, this profound suffering is largely preventable. Despite the absence of comprehensive national data, alarming indicators across several regions have spurred the CNRD to intensify its efforts to reverse this trend. The disease manifests when a child inherits the defective gene from both parents (the homozygous SS form). The high prevalence of carriers, who are frequently unaware of their status, explains the persistent occurrence of cases. Consequently, pre-marital screening and genetic counseling are crucial for preventing transmission. The CNRD plays a pivotal role in promoting these vital services nationwide, empowering at-risk couples to make informed decisions for their future.

“This experience solidified my conviction that access to care must be a universal right, regardless of financial standing. It has guided our actions towards practical solutions, including advocating for free access to certain medications, bolstering social support, and establishing assistance mechanisms for vulnerable families,” the director elaborated.

Among the leading 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 appropriate medical management. 

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

 This screening effort is integrated into a broader prevention strategy, which also encompasses community awareness campaigns, training for medical personnel, and psychosocial support for families. Additional actions undertaken include ongoing medical monitoring, medication subsidies, therapeutic education, psychological assistance, and collaboration with patient associations.

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

Future projects include expanding pre-marital screening across all regions, enhancing the health information system, strengthening psychosocial support services, integrating sickle cell disease into national health policies, constructing a new center in Niamey, and organizing the 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 participate. The fight against this condition relies on several crucial levers: preventive screening for young people before marriage, parental education for children, community sensitization led by local leaders, and the commitment of policymakers to inclusive and sustainable health policies.

The World Health Organization (WHO) stands as a vital partner to the CNRD. On World Sickle Cell Day, observed on June 19, 2024, WHO generously donated a substantial consignment of medications and medical consumables to the center. This contribution, widely praised by beneficiaries and health authorities, significantly bolstered patient care. Ms. Asmaou Salifou, a mother of eight children, three of whom live with sickle cell disease, expressed profound gratitude for this life-saving assistance. 

Beyond this material aid, WHO has pledged to reinforce the CNRD’s capabilities. During an official visit on January 28, 2025, Dr. Casimir Manengu, the interim WHO Representative in Niger, 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, WHO also intends to support the mobilization of technical and financial partners, conduct advocacy actions on behalf of the CNRD, and facilitate scientific studies for improved decision-making. These prospective support initiatives demonstrate WHO Niger’s commitment to sustainably strengthening the fight against sickle cell disease within the country.