Imagine if a simple blood test before marriage could fundamentally alter a life’s trajectory? 

“Upon assuming leadership of the National Reference Centre 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 the necessary medications,” recounted Colonel Dr. Mariam Boureima Djibo, the CNRD’s director. 

This poignant account underscores the silent anguish endured by countless families and highlights the urgent need for enhanced medical and social support to prevent such heartbreaking situations.

In Niger, thousands of infants are born each year with sickle cell disease, a painful genetic condition that remains widely misunderstood. This tragic reality, however, is largely preventable. Despite the absence of comprehensive national data, alarming indicators across various 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 often unaware of their status, explains the persistent occurrence of new cases. Consequently, prenuptial screening and genetic counseling are crucial for preventing transmission. The CNRD plays a pivotal role in promoting these preventative measures nationwide, empowering at-risk couples to make informed decisions.

“This experience solidified my belief that access to healthcare must be a universal right, irrespective of financial standing. It has guided our actions toward tangible solutions, including advocating for free access to certain medications, strengthening social assistance, and establishing support mechanisms for vulnerable families,” the director further explained.

Among the flagship initiatives is a pioneering neonatal screening program 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 first days of life offers these children a genuine opportunity to live better, longer, and with reduced 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. Additional actions undertaken include ongoing medical monitoring, medication subsidies, therapeutic education, psychological counseling, and collaboration with patient associations.

Under Dr. Mariam’s leadership, the CNRD has achieved significant progress. These accomplishments include the establishment of an intensive care unit, the recruitment of specialized personnel (psychologist, epidemiologist, resuscitator), the acquisition of advanced equipment, heightened awareness efforts, and free screening for over 2,000 young individuals in 2024. 

Upcoming projects feature the expansion of prenuptial screening across all regions, enhancement of the health information system, reinforcement of psychosocial support, integration of sickle cell disease into national health policies, construction of a new center in Niamey, and the rotating organization of World Sickle Cell Day events.

Sickle cell disease is not an insurmountable fate. Concrete and accessible solutions exist, provided that all social stakeholders actively engage. The fight against this condition hinges on several critical levers: preventive screening for young people before marriage, parental education for children, community sensitization 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 the occasion of World Sickle Cell Day, observed on June 19, 2024, WHO generously donated a substantial consignment of medicines and medical consumables to the center. This contribution, lauded by beneficiaries and health authorities alike, significantly bolstered patient care. Ms. Asmaou Salifou, a mother of eight with three children affected by sickle cell, expressed profound gratitude for this life-saving assistance. 

Beyond this material support, WHO is dedicated to enhancing the CNRD’s operational capabilities. During an official visit on January 28, 2025, WHO Interim Representative in Niger, Dr. Casimir Manengu, commended the center’s existence and proposed its decentralization: “This center, specifically dedicated to the reception and care of sickle cell patients, 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, lead advocacy efforts for the CNRD, and facilitate scientific studies to inform better decision-making. These prospects for support underscore WHO Niger’s unwavering commitment to sustainably strengthening the fight against sickle cell disease in the country.