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

“Upon assuming leadership of the National Reference Center for Sickle Cell Disease (CNRD), one particular incident left a profound impression on me: a parent, facing extreme financial hardship, was forced to abandon their child suffering from sickle cell disease at the center, unable to afford the necessary medication,” shared Colonel Dr. Mariam Boureima Djibo, director of the CNRD. 

This deeply moving account underscores the silent suffering endured by countless families and highlights the urgent need for enhanced medical and social support to prevent such distressing situations.

In Niger, thousands of children are born each year with sickle cell disease, a painful genetic condition that remains largely misunderstood. Yet, this tragic reality is often preventable. Despite the absence of comprehensive national data, alarming trends across several regions are prompting the CNRD to intensify its efforts to reverse the rising prevalence. The disease manifests when a child inherits the faulty gene from both parents (homozygous SS form). The high number of carriers, many unaware of their status, explains the persistent occurrence of new cases. Consequently, prenuptial screening and genetic counseling are vital tools for preventing transmission. The CNRD is playing a pivotal role in promoting these services nationwide, empowering at-risk couples to make informed decisions for their future.

“This experience solidified my belief that access to healthcare should be a universal right, regardless of financial circumstances. It has guided our actions towards tangible solutions, including advocating for the free provision of certain medications, strengthening social assistance, and establishing support mechanisms for vulnerable families,” Dr. Djibo further elaborated.

Among the flagship initiatives is a pioneering neonatal screening program launched at the Issaka Gazobi Maternity Hospital. This program has enabled the early identification of affected newborns, 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 gives these children a genuine opportunity to live better, longer, and with significantly less suffering.”

 This early detection effort 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 undertaken include ongoing medical monitoring, medication subsidies, therapeutic education, psychological support, and robust 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 professionals (psychologist, epidemiologist, resuscitation specialist), the acquisition of cutting-edge equipment, heightened public awareness, and the free screening of over 2,000 young individuals in 2024. 

Future projects include expanding prenuptial screening across all regions, enhancing the health information system, strengthening psychosocial support, integrating sickle cell disease into national policies, constructing a new center in Niamey, and rotating the hosting of World Sickle Cell Day events.

Sickle cell disease is not an unchangeable fate. Practical and accessible solutions exist, provided that all social actors commit actively to the cause. The fight against this condition relies on several crucial pillars: preventive screening for young people before marriage, educating children through their parents, raising community awareness via local leaders, and the unwavering 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, the WHO provided a substantial donation of medications and medical consumables to the center. This generous contribution, lauded by both 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 support, the WHO is dedicated to strengthening the CNRD’s capacities. 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 care of sickle cell patients, 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, lead advocacy efforts for the CNRD, and facilitate scientific studies to inform better decision-making. These prospective support initiatives underscore WHO Niger’s commitment to sustainably reinforcing the fight against sickle cell disease within the country.