NGO Launches Campaign to Combat Sickle Cell Stigma and Misinformation

Nigerian NGO Launches Campaign Against Sickle Cell Stigma and Misinformation

A new campaign aimed at tackling stigma, ignorance, and misinformation surrounding sickle cell disorder in Nigeria has been launched by the Sickle Cell Awareness Initiative Ireland-Nigeria (SCAIIN), a non-governmental organization operating across both countries.

The initiative, unveiled during a one-day medical intervention at Rivers State University Teaching Hospital in Port Harcourt, focuses on breaking what organizers described as a “long-standing cycle of pain, stigma and silence” through research-driven advocacy, public education, and community mobilization efforts.

Mrs. Esther Pepple Onolememen, founder of SCAIIN, explained that the program was specifically designed to improve health outcomes for people living with sickle cell disorder while simultaneously strengthening public trust and support for patients and their families.

“Together, we are rewriting the story of sickle cell in Nigeria from silence to knowledge, from stigma to support, and from neglect to action,” Onolememen stated during the launch event held over the weekend.

She emphasized that sustained awareness and early intervention remain critical factors in reducing the burden of sickle cell disorder across the country, noting that persistent ignorance and social stigma continue to exacerbate challenges faced by patients.

The initiative comes at a crucial time for Nigeria, which has one of the highest rates of sickle cell disorder globally. The genetic blood condition affects the shape of red blood cells, causing them to become sickle-shaped and leading to painful episodes, increased risk of infection, and complications affecting multiple organ systems.

Onolememen urged the Federal Government to adopt a more proactive approach by introducing a national newborn screening program, which she described as a “critical first step toward comprehensive planning for sickle cell care in Nigeria.”

“Promoting public health, advocacy and care across borders, going forward, an immediate approach is to consider newborn screening, national newborn screening as a country, that is the first step into planning for sickle cell care generally,” she added.

The campaign has secured significant backing from the Niger Delta Development Commission (NDDC), whose Managing Director, Dr. Samuel Ogbuku, observed that sickle cell disease remains a major public health concern in Nigeria, particularly throughout the Niger Delta region.

Represented at the event by Dr. Patience Ezugu, Director of Education, Health, and Social Services, Ogbuku emphasized the importance of the sensitization program in strengthening awareness to ensure both prevention and care for sickle cell disease in the area.

“As a Commission mandated to enhance the well-being of our people, the NDDC recognizes that sustainable development is impossible without a healthy population,” Ogbuku stated. “This program reinforces our commitment to preventive healthcare, early diagnosis, and community education.”

He specifically addressed different stakeholder groups, noting: “For our youths, knowing your genotype early is essential. For patients, we reaffirm our support for improved access to care. For health professionals, we appreciate your dedication and encourage continued collaboration in research, counseling, and community outreach.”

The human face of the disorder was represented by Mr. Derefaka Yemiesibo, father of a child living with sickle cell disease, who expressed appreciation to the NDDC for supporting affected families through advocacy and sustained awareness programs.

The collaboration between SCAIIN and NDDC represents a significant step forward in addressing both the medical and social aspects of sickle cell disorder in Nigeria, particularly in creating platforms where patients and families can receive support while working to eliminate the stigma that often surrounds the condition.

Health experts have long advocated for increased awareness about sickle cell trait testing before marriage and family planning, which could significantly reduce the incidence of the disorder in countries with high prevalence rates like Nigeria.