Ouagadougou — In Burkina Faso, sickle cell disease affects approximately 4.63% of the population, with nearly 2% of newborns diagnosed with the severe SS form. These figures highlight a pressing public health challenge that demands a coordinated, multi-stakeholder response involving communities, healthcare professionals, and policymakers.

Dr. Gloria Damoaliga Berges, Vice President of the Centre d’Initiative contre la Drépanocytose au Burkina Faso (CID/B), has been a pivotal figure in the fight against this inherited blood disorder over the past decade. Her work spans advocacy, patient care, community engagement, and policy development, all aimed at improving outcomes for those living with sickle cell disease.

Here, she reflects on her journey, the progress made, the persistent challenges, and the path forward.

What inspired your lifelong commitment to the sickle cell cause?

My dedication stems from years of witnessing the devastating impact of sickle cell disease firsthand. Early in my medical career, I cared for children and young adults battling the pain and complications of this condition. Their suffering was often compounded by a lack of awareness and inadequate care. In 2015, an opportunity arose to establish a specialized referral unit at the hospital where I worked, in collaboration with the Centre d’Initiative contre la Drépanocytose. This marked a turning point, deepening my involvement and shaping my mission to transform care for sickle cell patients in Burkina Faso.

Why do so many children are still born with sickle cell disease?

Sickle cell disease is hereditary. When both parents carry the hemoglobin S gene, each pregnancy carries a 25% chance of the child inheriting the severe form of the disease. Unfortunately, many couples remain unaware of their carrier status before conception, as hemoglobin electrophoresis tests and pre-marital health screenings are often overlooked. Raising awareness about these critical tests—before marriage or pregnancy—is essential to reducing transmission rates.

How have you engaged communities in the fight against sickle cell disease?

Community ignorance and stigma are major barriers to progress. To address this, I’ve led large-scale sensitization campaigns and organized screening drives across Burkina Faso. Between January and July 2024 alone, we coordinated a campaign that screened nearly 15,000 children in five regions, in partnership with a local NGO. These efforts not only improve early detection but also dismantle myths and foster inclusion for affected families.

What concrete actions have you implemented to improve care?

My work has included supporting the Hematology Intervention Group and the Ministry of Health in launching neonatal screening programs and training healthcare workers in pain management for sickle cell patients. I also contributed to the launch of Drépa Minute, a free helpline at 80001350, offering information in local languages. These initiatives aim to educate the public, enhance clinical care, support families, and strengthen social mobilization against sickle cell disease.

The CID/B works closely with the Ministry of Health, particularly the Direction de la Prévention et du Contrôle des Maladies Non Transmissibles (DPCM), with support from partners such as the French Development Agency, the Pierre Fabre Foundation, and the Principality of Monaco. Together, we implement nationwide projects to combat the disease.

With partner support, we provide comprehensive care to sickle cell patients, including medical treatment, psychosocial support, and socio-economic assistance. Our 11 regional branches offer patient support groups, therapeutic education sessions, and psychological coaching with specialists. We also facilitate income-generating activities to promote financial independence. Additionally, we collaborate with health mutuals and advocate for universal health coverage to improve access to care. This holistic approach is vital in enhancing patients’ quality of life.

Have you seen meaningful progress in recent years?

Yes. Thanks to collective efforts, sickle cell disease is now a recognized 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.

Awareness has grown significantly—both among the public and healthcare professionals. More actors are joining the fight, and specialized training programs have been introduced to strengthen clinical skills. Advances in early diagnosis and screening are particularly noteworthy.

The societal perception of the disease has also shifted. Once shrouded in stigma and misconceptions—such as the belief that patients couldn’t live long or lead fulfilling lives—we now see many individuals thriving. With proper care and follow-up, patients are living longer, building families, pursuing careers, and contributing to society. This transformation is a testament to the power of coordinated action.

What are the biggest challenges still facing the sickle cell community?

Despite progress, critical gaps remain. Access to screening and diagnosis at the community level is limited. Essential medications like hydroxyurea, pain relievers, and antibiotics are not always available, nor are vaccines against preventable diseases. Transfusion services and complication management also require strengthening.

To make real progress, we must amplify neonatal and early screening, improve care delivery, and ensure coordinated action between the Ministry of Health and partners. The silent cries of sickle cell patients must be heard—it’s time to invest more in this fight.

Despite these challenges, I remain steadfast. Combating sickle cell disease is not just a medical effort—it’s a fight for dignity, hope, and a better future for thousands of families in Burkina Faso.