In Ouagadougou, the Burkina Faso faces a critical public health challenge with a sickle cell disease prevalence of 4.63%, including nearly 2% of newborns born with the severe SS form. This alarming statistic underscores the urgent need for a comprehensive, multi-stakeholder response to address the physical, psychological, and social burdens of the condition.

For over a decade, Dr. Gloria Damoaliga Berges, Vice President of the CID/B (Centre d’Initiative contre la Drépanocytose au Burkina Faso) and a dedicated civil society advocate, has been at the forefront of this battle. Her journey from confronting the helplessness of treating young patients to spearheading transformative initiatives reflects a deep commitment to improving lives.

Why did you decide to dedicate your career to sickle cell disease?

From the early days of my medical practice, I witnessed the devastating impact of sickle cell disease on children and adolescents. Their unbearable pain left an indelible mark on me. In 2015, an opportunity arose to establish a dedicated care unit at the hospital where I worked, in collaboration with the Centre d’Initiative contre la Drépanocytose. This pivotal moment reshaped my involvement, turning personal empathy into a lifelong mission.

Why do children continue to be born with sickle cell disease in Burkina Faso?

Sickle cell disease is hereditary. When both parents carry the hemoglobin S gene, there’s a 25% chance per pregnancy of having a child with the condition. Unfortunately, many couples remain unaware of their genetic status before conception, often neglecting premarital or prenatal screening. Raising awareness about hemoglobin electrophoresis testing is essential to curb new cases.

What community-level actions have you undertaken?

Awareness gaps within communities remain a major hurdle. To combat this, I’ve led sensitization campaigns across the country and organized large-scale screening initiatives. Between January and July 2024 alone, we screened nearly 15,000 children across five regions, in partnership with a local NGO. These efforts also help dismantle harmful stigmas associated with the disease.

What concrete steps have you implemented to support patients?

I’ve worked closely with hematology teams and the Ministry of Health to introduce neonatal screening programs and train healthcare workers on pain management for sickle cell patients. Additionally, I contributed to launching Drépa Minute, a free helpline (80001350) offering information in local languages. These initiatives aim to enhance disease awareness, improve care, support families, and mobilize society in the fight against sickle cell disease.

The CID/B collaborates extensively with the Ministry of Health, particularly through the Division for the Prevention and Control of Non-Communicable Diseases (DPCM), with funding from the French Development Agency, the Pierre Fabre Foundation, and the Principality of Monaco. Together, we implement projects to strengthen the fight against sickle cell disease.

Thanks to our partners, we provide holistic support to patients, combining medical care, psychosocial assistance, and socioeconomic empowerment. Our 11 regional branches offer reference care, support groups, therapeutic education sessions, and psychological coaching. We also facilitate income-generating activities to enhance financial independence. Collaborating with health mutuals, we advocate for universal health coverage to ensure better access to care for all.

Have you seen progress in the fight against sickle cell disease?

Significant strides have been made. Sickle cell disease is now a priority in public health policies, with a dedicated strategic plan developed by the Ministry of Health through the DPCM. Awareness has grown among both the public and medical professionals, and specialized training programs have been established. Early detection and diagnosis have improved, and societal perceptions of the disease have shifted dramatically. No longer seen as a curse or a death sentence, more patients are living fulfilling lives—working, raising families, and contributing to society—thanks to better care and follow-up measures.

What challenges remain in tackling sickle cell disease?

Despite progress, critical gaps persist. Access to screening and diagnosis at the community level, availability of essential medications like hydroxyurea, painkillers, and antibiotics, and vaccination against preventable diseases are still major concerns. Transfusion support and complication management also require urgent attention. To make a real difference, we must prioritize neonatal and early screening, enhance care delivery, and foster coordinated action among the Ministry of Health and its partners.

For me, this fight is about more than healthcare—it’s about restoring dignity and hope. I remain steadfast in my commitment, driven by the belief that every voice matters in the battle against sickle cell disease.