Ouagadougou, Burkina Faso — Sickle cell disease (SCD) affects approximately 4.63% of the population in Burkina Faso, with nearly 2% of newborns diagnosed with the severe SS form. These statistics highlight a pressing public health challenge that demands a comprehensive, multi-stakeholder response involving communities across the country.

Dr. Gloria Damoaliga Berges, Vice President of the CID/B (Center for Sickle Cell Disease Initiatives in Burkina Faso), has been a prominent advocate for SCD awareness and care over the past decade. Her journey reflects a deep commitment to improving the lives of those affected by this hereditary condition.

In a recent interview, she shared insights into her motivations, achievements, ongoing challenges, and the future of SCD management in Burkina Faso.

What inspired your dedication to the fight against sickle cell disease?

From early in my medical career, I witnessed children and young adults suffering from SCD, particularly the intense pain crises they endured. Witnessing their struggles left a profound impact on me, driving my determination to make a difference. In 2015, I was invited to help establish a dedicated SCD care unit at my hospital, supported by the Division of Intervention at the Center for Sickle Cell Disease Initiatives. This milestone marked a turning point in my professional and personal commitment to this cause.

Why are children still being born with sickle cell disease in Burkina Faso?

SCD is an inherited blood disorder. When both parents carry the hemoglobin S gene, there is a 25% chance with each pregnancy that their child will inherit the condition, resulting in major sickle cell syndrome. Unfortunately, many couples remain unaware of their carrier status before conception, as hemoglobin electrophoresis tests and premarital health screenings are often overlooked. Raising awareness about these tests—before marriage or pregnancy—is essential to reduce the incidence of SCD.

How have community-based initiatives contributed to your efforts?

Education gaps about SCD persist in many communities, fueling misconceptions and stigma. To address this, I have led extensive awareness campaigns and organized screening events across Burkina Faso. For example, between January and July 2024, I coordinated a screening initiative that reached nearly 15,000 children in five regions, in collaboration with a local NGO. These community engagements also help dismantle harmful stereotypes associated with the disease.

What concrete actions have you implemented to improve SCD care?

I have played a key role in establishing neonatal screening programs and training healthcare professionals on pain management specific to SCD patients. Additionally, I contributed to the creation of Drépa Minute, a free hotline (dial 80001350) offering information in local languages. These initiatives aim to enhance disease awareness, improve medical care, support affected families, and strengthen community mobilization against SCD.

Our association, CID/B, works closely with the Ministry of Health through the Division for Prevention and Control of Non-Communicable Diseases (DPCM), with support from partners like the French Development Agency, the Pierre Fabre Foundation, and the Principality of Monaco. Together, we implement projects to combat SCD, offering comprehensive care that includes medical treatment, psychosocial support, and socioeconomic assistance.

The CID/B operates 11 regional branches across Burkina Faso, providing patients with access to specialized care, support groups, therapeutic education sessions, and psychological coaching. We also facilitate income-generating activities to promote financial independence among patients. Collaborating with health mutuals, we advocate for universal health coverage to ensure broader access to care for all.

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

Yes. Thanks to collective efforts, SCD has gained recognition as a priority in Burkina Faso’s public health agenda. The Ministry of Health, through the DPCM, has developed a dedicated strategic plan and is mobilizing resources for its implementation.

Previously, SCD was widely misunderstood despite its devastating physical, psychological, social, and economic toll. Today, awareness has improved among both the public and healthcare providers. More professionals are trained, and specialized programs are in place. Advances in screening and diagnosis have been significant.

Societal perceptions have also shifted. SCD was once surrounded by stigma, with some believing it was a curse or that patients had limited lifespans. These myths are fading as we see more patients living fulfilling lives—working, starting families, and thriving with proper care and follow-up.

What are the biggest challenges still ahead?

Despite progress, critical gaps remain. Access to screening and diagnosis in rural areas is limited. Many patients struggle to obtain essential medications like hydroxyurea, pain relievers, antibiotics, and life-saving vaccines. Transfusion support and complication management also remain major hurdles.

It’s time to amplify the voices of those affected by SCD. We must prioritize neonatal and early screening, improve care standards, and foster coordinated action between the Ministry of Health, partners, and communities. Every effort counts in turning the tide against this disease.

Despite the challenges, I remain steadfast in my mission. Fighting sickle cell disease is not just about health—it’s about restoring dignity and hope to thousands of lives.