Imagine the profound impact a straightforward blood test before marriage could have on a person’s life trajectory.

“Upon assuming leadership of the National Reference Center for Sickle Cell Disease (CNRD), one particular story left an indelible mark: that of a parent, driven by extreme poverty, forced to abandon their child suffering from sickle cell disease at the center, unable to afford the essential medications,” shares Colonel Doctor Mariam Boureima Djibo, the Director of CNRD.

This deeply moving account powerfully illustrates the quiet anguish endured by countless families and underscores the urgent necessity for enhanced medical and social support to prevent such heartbreaking situations.

In Niger, thousands of infants are born annually with sickle cell disease, a painful genetic condition that remains widely misunderstood. This tragedy, however, is largely preventable. Despite the absence of comprehensive national data, alarming indicators across various 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, resulting in the homozygous SS form. The high prevalence of carriers, many of whom are unaware of their status, contributes to the persistent occurrence of new cases. Consequently, prenuptial screening and genetic counseling are paramount for preventing transmission. The CNRD plays a pivotal role in promoting these vital services nationwide, empowering at-risk couples to make informed decisions about their future.

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

Among the flagship initiatives is a pilot 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 actively involved in the project, emphasized: “Detecting sickle cell disease within the first days of life offers these children a genuine opportunity to live better, longer, and with reduced suffering.”

 This early detection is an integral part of a broader prevention strategy, which also encompasses community awareness campaigns, training for medical personnel, and psychosocial support for families. Other undertaken actions include consistent medical follow-up, subsidized medications, therapeutic education, psychological counseling, and active collaboration with patient associations.

Under the astute leadership of Dr. Mariam, the CNRD has achieved remarkable progress. These advancements include the establishment of an intensive care unit, the recruitment of specialized professionals (such as a psychologist, epidemiologist, and resuscitation specialist), the acquisition of cutting-edge equipment, heightened public awareness, and the provision of free screening for over 2,000 young individuals in 2024.

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

Sickle cell disease is not an insurmountable fate. Concrete and accessible solutions exist, provided that all social stakeholders actively commit to the cause. The fight against this condition hinges 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 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, observed on June 19, 2024, the organization generously donated a significant consignment of medications and medical consumables to the center. This contribution, widely applauded by beneficiaries and health authorities, substantially bolstered patient care. Ms. Asmaou Salifou, a mother of eight children, three of whom live with sickle cell disease, conveyed her deep gratitude for this life-saving assistance.

Beyond this material support, the WHO has pledged to fortify the CNRD’s capacities. 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: “This specialized center 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 on behalf of the CNRD, and facilitate scientific studies to inform better decision-making. These prospective support initiatives underscore WHO Niger’s steadfast determination to sustainably strengthen the fight against sickle cell disease within the country.