breaking the silence on sickle cell disease in Niger: a call to action

Imagine the profound impact a simple blood test before marriage could have on an entire life.

“Upon my arrival at the National Reference Center for Sickle Cell Disease (CNRD), one particular story deeply affected me: 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 medication,” shares Colonel Doctor Mariam Boureima Djibo, Director of the CNRD.

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

In Niger, thousands of infants are born annually with sickle cell disease, a debilitating genetic condition that remains widely misunderstood. This preventable tragedy could be avoided. Despite the absence of comprehensive national data, alarming indicators across several regions have prompted 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 incidence of cases. Therefore, prenuptial screening and genetic counseling are crucial tools for preventing transmission. The CNRD plays a pivotal role in promoting these services nationwide, empowering at-risk couples to make informed decisions.

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

Among the flagship initiatives, a pilot neonatal screening program was 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 offers these children a genuine opportunity to live better, longer, and with less suffering.”

 This early detection is part of a broader prevention strategy that also encompasses community awareness campaigns, training for medical personnel, and psychosocial support for families. Other critical actions undertaken include ongoing medical monitoring, medication subsidies, therapeutic education, psychological support, 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 specialists (psychologist, epidemiologist, intensivist), the acquisition of cutting-edge equipment, heightened public awareness, and free screening for over 2,000 young individuals in 2024.

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

Sickle cell disease is not an unchangeable fate. Concrete and accessible solutions exist, provided that all social stakeholders actively commit. The fight against this condition relies on several essential pillars: preventive screening for young people before marriage, educating children by their parents, raising community awareness through local leaders, and 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 World Sickle Cell Day, celebrated on June 19, 2024, WHO generously donated a substantial consignment of medicines and medical consumables to the center. This contribution, applauded by beneficiaries and health authorities, significantly bolstered patient care. Ms. Asmaou Salifou, a mother of eight children, three of whom have sickle cell disease, expressed her deep gratitude for this life-saving assistance.

Beyond this material support, WHO is committed to reinforcing the CNRD’s capabilities. On January 28, 2025, during an official visit, the interim WHO Representative in Niger, Dr. Casimir Manengu, 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, lead advocacy efforts for the CNRD, and facilitate scientific studies for improved decision-making. These prospective support initiatives demonstrate WHO Niger’s unwavering commitment to sustainably strengthening the fight against sickle cell disease in the country.