What if a simple blood test before marriage could fundamentally transform a life? This question underscores the critical mission to combat sickle cell disease in Niger.
Dr. Mariam Boureima Djibo, Director of the National Reference Centre for Sickle Cell Disease (CNRD), recounts a deeply moving experience that shaped her resolve: “Upon my arrival at the CNRD, I was profoundly affected by the story of a parent, driven by destitution, forced to abandon their child suffering from sickle cell disease at the center, simply because they couldn’t afford the necessary medication.”
This poignant anecdote illuminates the silent suffering endured by countless families and highlights the urgent need for enhanced 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 widely misunderstood. Yet, this profound tragedy 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 (homozygous SS form). The high prevalence of carriers, often unaware of their status, explains the persistent occurrence of new cases. Therefore, premarital screening and genetic counseling are indispensable tools for preventing transmission. The CNRD plays a pivotal role in promoting these services nationwide, empowering at-risk couples to make informed decisions about their future.
The Director emphasizes, “This experience solidified my conviction that access to healthcare must be a universal right, irrespective of financial status. It has guided our actions towards concrete solutions: advocating for free access to certain medications, strengthening social assistance, and establishing support mechanisms for vulnerable families.”
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 medical care.
As Dr. Marie Ousseini, a pediatrician involved in the project, underscored: “Detecting sickle cell disease within the first days of life offers these children a genuine opportunity to live better, longer, and with significantly less suffering.”
This early screening is an integral part of a broader prevention strategy, which also encompasses extensive community awareness campaigns, training for medical personnel, and comprehensive psychosocial support for families. Additional actions include ongoing medical monitoring, medication subsidies, therapeutic education, psychological counseling, and active collaboration with patient associations.
Under Dr. Mariam’s leadership, the CNRD has achieved remarkable progress. These accomplishments include establishing an intensive care unit, recruiting specialized professionals (psychologists, epidemiologists, intensive care specialists), acquiring advanced medical equipment, raising public awareness, and providing free screening to over 2,000 young individuals in 2024.
Future projects are ambitious and include expanding premarital screening services to all regions, enhancing the national health information system, strengthening psychosocial support, integrating sickle cell disease into national health policies, constructing a new dedicated center in Niamey, and organizing the annual World Sickle Cell Day celebrations on a rotating basis.
Sickle cell disease is not an inescapable fate. Concrete and accessible solutions exist, provided that all social stakeholders commit actively to the cause. The fight against this condition relies on several crucial pillars: preventive screening for young people before marriage, educating children by their parents, raising community awareness through local leaders, and ensuring the commitment of decision-makers 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, celebrated on June 19, 2024, WHO generously donated a substantial consignment of essential medicines and medical consumables to the center. This invaluable contribution, highly appreciated by both beneficiaries and health authorities, has 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 tangible support, WHO is dedicated to enhancing the CNRD’s capabilities. During an official visit on January 28, 2025, the interim WHO Representative in Niger, Dr. Casimir Manengu, commended the center’s existence and suggested 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, lead advocacy efforts on behalf of the CNRD, and facilitate scientific studies to inform better decision-making. These prospective support initiatives underscore WHO Niger’s unwavering commitment to sustainably reinforcing the fight against sickle cell disease within the country.
