Ouagadougou — With a prevalence rate of 4.63% and nearly 2% of newborns affected by the severe SS form, Burkina Faso faces a pressing public health challenge. The fight against sickle cell disease demands a coordinated, multisectoral response involving all segments of society.

As vice president of the CID/B (Centre d’Initiative contre la Drépanocytose au Burkina Faso), Dr. Gloria Damoaliga Berges has emerged as a leading voice in this battle over the past decade. Her journey reflects unwavering commitment, tangible progress, and persistent challenges in improving care for sickle cell patients nationwide.

Why this lifelong dedication to sickle cell advocacy?

Dr. Berges’ motivation traces back to her early medical practice in Burkina Faso. Witnessing the intense suffering of children and adolescents battling the disease left a profound impact on her. “The pain expressed by patients was unbearable,” she recalls. “I felt helpless at times.” In 2015, her involvement in establishing a dedicated sickle cell care unit at her hospital marked a pivotal turning point in her advocacy journey.

Breaking the cycle of hereditary transmission

Sickle cell disease is genetic—when both parents carry the hemoglobin S gene, each pregnancy carries a 25% risk of the child being born with the severe form. Yet many couples remain unaware of their status before conception, often neglecting premarital or prenatal hemoglobin electrophoresis tests. “Awareness campaigns must prioritize genetic screening before marriage or pregnancy,” Dr. Berges emphasizes. “This is the only way to reduce new cases at the source.”

Community outreach: the heart of change

Dr. Berges has spearheaded extensive community sensitization programs across Burkina Faso, targeting rural and urban populations alike. Her most recent initiative, conducted between January and July 2024, involved screening nearly 15,000 children across five regions. These efforts not only improve early detection but also combat harmful stigmas associated with the disease.

• Drépa Minute: A free hotline (80001350) providing information in local languages to support families and individuals
• Training healthcare professionals in pain management and specialized care for sickle cell patients
• Collaboration with the Ministry of Health to implement neonatal screening programs

Transforming lives through holistic support

The CID/B, under Dr. Berges’ leadership, offers a comprehensive care model combining medical treatment, psychosocial support, and socioeconomic assistance. With 11 regional branches, the center provides:

• Referral to specialized healthcare facilities
• Therapeutic education and support groups
• Psychological coaching and counseling
• Income-generating activities to foster financial independence

Partnerships with health mutuals and advocacy for universal health coverage further strengthen access to care for patients.

Milestones in public health policy

“A decade ago, sickle cell disease was shrouded in ignorance and stigma,” Dr. Berges reflects. “Today, it’s recognized in national health policies.” Burkina Faso’s Ministry of Health, through the Directorate for Prevention and Control of Non-Communicable Diseases (DPCM), has developed a dedicated strategic plan with support from partners including the French Development Agency, the Pierre Fabre Foundation, and the Principality of Monaco.

Key achievements include:

• Improved awareness among the population and medical community
• Implementation of neonatal and early screening programs
• Specialized training for healthcare workers
• Reduction of harmful stereotypes and misconceptions

Unfinished battles: addressing persistent gaps

Despite progress, critical challenges remain:

• Limited access to screening and diagnostic services in peripheral areas
• Shortages of essential medications (hydroxyurea, painkillers, antibiotics) and vaccines
• Inadequate management of complications and transfusion needs

“The silent cries of sickle cell patients must be heard,” Dr. Berges asserts. “We need to scale up neonatal and early screening, enhance care delivery, and ensure coordinated action between the Ministry of Health and partners.”

A vision of dignity and hope

For Dr. Berges, the fight against sickle cell disease is fundamentally about restoring dignity and hope to patients. “Every child deserves a chance to thrive,” she says. “Through education, early detection, and compassionate care, we can transform lives.” Her relentless advocacy continues to inspire change, proving that even the most persistent challenges can be overcome with determination and collective action.