Imagine the profound impact a simple blood test before marriage could have on a family’s future.

“Upon my arrival at the National Reference Center for Sickle Cell Disease (CNRD), one particular story left a lasting impression: that of a parent forced by extreme poverty to abandon their child, who suffered from sickle cell disease, at the center because they couldn’t afford the necessary medication,” recounted Medical Colonel Mariam Boureima Djibo, the CNRD’s director. This heart-wrenching account vividly illustrates the silent agony many families endure and underscores the urgent need for enhanced medical and social assistance to prevent such tragic circumstances.

In Niger, thousands of children are born annually with sickle cell disease, a painful genetic condition that remains widely misunderstood. This preventable tragedy arises when a child inherits the defective gene from both parents, resulting in the homozygous SS form. The high prevalence of carriers, often unaware of their status, perpetuates new cases. Consequently, prenuptial screening and genetic counseling are crucial tools for preventing transmission. The CNRD is at the forefront of promoting these vital services nationwide, empowering at-risk couples to make informed decisions for their families.

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

Among the flagship initiatives, a pioneering 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 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 initiative is an integral part of a broader prevention strategy. This comprehensive approach also encompasses community awareness campaigns, training for medical professionals, and vital psychosocial support for families. Additional actions include consistent medical follow-up, subsidized medication, therapeutic education, psychological counseling, and active collaboration with patient associations, all aimed at improving the lives of individuals living with sickle cell disease in Niger.

Under Dr. Mariam’s leadership, the CNRD has achieved remarkable progress. These accomplishments include the establishment of an intensive care unit, the recruitment of specialized personnel such as a psychologist, epidemiologist, and intensive care physician, the acquisition of advanced medical equipment, heightened public awareness, and the provision of free screening for over 2,000 young individuals in 2024.

Future endeavors for the CNRD include expanding prenuptial screening across all regions of Niger, enhancing the national health information system, strengthening psychosocial support services, integrating sickle cell disease into national health policies, constructing a new central facility in Niamey, and organizing the annual World Sickle Cell Day celebrations on a rotating basis.

Sickle cell disease is not an unchangeable fate. Concrete and accessible solutions exist, provided that all social stakeholders actively participate. The fight against this genetic condition hinges on several crucial pillars: preventive screening for young people before marriage, educating children by their parents, raising community awareness through local leaders, and the unwavering commitment of decision-makers to implement 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 generously donated a significant consignment of medicines and medical consumables to the center. This invaluable contribution was highly praised by beneficiaries and health authorities alike, substantially bolstering patient care. Mrs. 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 committed to strengthening 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, 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 planned support initiatives underscore the WHO Niger’s dedication to a sustained and impactful fight against sickle cell disease in the country.