Imagine the profound impact a straightforward pre-marital blood test could have on an individual’s life trajectory.

Upon assuming leadership at the National Reference Center for Sickle Cell Disease (CNRD), physician-colonel Mariam Boureima Djibo, the center’s director, was deeply affected by a particular story: a parent, facing extreme poverty, was compelled to leave their child suffering from sickle cell disease at the facility due to an inability to afford essential medication.

This poignant account highlights the quiet agony endured by countless families and underscores the urgent necessity for enhanced medical and social support to prevent similar heartbreaking circumstances.

In Niger, thousands of infants are born annually with sickle cell disease, a painful genetic condition that remains widely misunderstood. This preventable tragedy could be averted. Despite the lack of comprehensive national data, alarming indicators across various regions have prompted the CNRD to redouble 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 genetic status, accounts for the continued occurrence of new cases. Consequently, pre-marital screening and genetic counseling are crucial tools for preventing transmission. The CNRD is instrumental in promoting these preventative measures nationwide, empowering at-risk couples to make informed decisions.

The director further elaborated, ‘This experience solidified my belief that healthcare access must be a universal right, irrespective of financial standing. It has guided our initiatives towards tangible solutions, including advocating for free access to specific medications, bolstering social assistance programs, and establishing support mechanisms for vulnerable families.’

Among the pivotal initiatives, a pilot neonatal screening program commenced at the Issaka Gazobi Maternity Hospital. This program has successfully facilitated the early identification of affected newborns, thereby enabling prompt and tailored care.

As Dr. Marie Ousseini, a pediatrician actively involved in the project, emphasized: ‘Detecting sickle cell disease in the very first days of life grants these children a genuine opportunity to live better, longer, and with significantly less suffering.’

This early detection effort forms part of 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 remarkable progress. These accomplishments include the establishment of an intensive care unit, the recruitment of specialized professionals (psychologist, epidemiologist, resuscitator), the acquisition of cutting-edge equipment, heightened public awareness, and the free screening of over 2,000 young individuals during 2024.

Future projects encompass the expansion of pre-marital screening to all regions, enhancing the health information system, strengthening psychosocial support services, integrating sickle cell disease into national policies, constructing a new center in Niamey, and hosting the World Sickle Cell Day on a rotational basis.

Sickle cell disease is not an insurmountable fate. Concrete and accessible solutions are available, provided that all societal stakeholders actively participate. The battle against this condition relies on several crucial pillars: preventative screening for young people before marriage, parents educating their children, community awareness fostered by local leaders, and the commitment of policymakers to inclusive and sustainable health strategies.

The World Health Organization (WHO) stands as a vital partner for the CNRD. Commemorating World Sickle Cell Day on June 19, 2024, the WHO provided a substantial consignment of medications and medical consumables to the center. This generous donation, applauded by beneficiaries and health authorities alike, significantly bolstered patient care. Ms. Asmaou Salifou, a mother of eight, three of whom live with sickle cell disease, conveyed her profound gratitude for this life-saving assistance.

Beyond this material aid, the WHO has committed to enhancing the CNRD’s operational 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, stating: ‘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, the WHO also plans to support the mobilization of technical and financial partners, lead advocacy efforts for the CNRD, and back the execution of scientific studies to facilitate improved decision-making. These projected support initiatives underscore WHO Niger’s dedication to sustainably strengthening the fight against sickle cell disease throughout the nation.