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 concern that demands a comprehensive, multi-stakeholder response involving all segments of society.

Dr. Gloria Damoaliga Berges, a prominent civil society leader and Vice President of the CID/B (Sickle Cell Initiative Center in Burkina Faso), has dedicated over a decade to combating this condition. Her journey reflects a deep personal and professional commitment to transforming the lives of those living with sickle cell disease.

Here, she shares insights into her motivation, achievements, ongoing efforts, and the challenges that remain.

What inspired your lifelong dedication to this cause?

Early in my medical career, I frequently encountered children and young adults suffering from sickle cell disease. The intense pain they endured often left me feeling powerless, which fueled my determination to make a difference. In 2015, I was invited to help establish a dedicated care unit at the hospital where I worked, alongside the Head of the Non-Communicable Diseases Division at the Sickle Cell Initiative Center. This experience marked a turning point, transforming my involvement into a lifelong mission.

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

Sickle cell disease is hereditary. If both parents carry the hemoglobin S gene, there is a one-in-four chance that each pregnancy will result in a child with the severe form of the disease. Unfortunately, many couples remain unaware of their genetic status before conception, as premarital or prenatal hemoglobin electrophoresis tests are often overlooked. Raising awareness about the importance of these screenings before marriage or pregnancy is critical to reducing new cases.

How have community-based initiatives contributed to your work?

A significant barrier remains the lack of awareness about sickle cell disease within communities. To address this, I’ve prioritized grassroots education and widespread screening campaigns. Between January and July 2024, I coordinated a national initiative that screened nearly 15,000 children across five regions, in collaboration with a local NGO. Community engagement also plays a vital role in combating the stigma often associated with the disease.

What other key actions have you implemented?

I’ve worked closely with hematology teams and the Ministry of Health to integrate neonatal screening into healthcare facilities and train medical professionals on managing sickle cell pain. Additionally, I contributed to launching Drépa Minute, a toll-free hotline (80001350) offering information in local languages. These efforts aim to enhance disease awareness, improve care standards, support affected families, and strengthen social mobilization in the fight against sickle cell disease.

The CID/B collaborates closely with the Ministry of Health, particularly the Non-Communicable Diseases Prevention and Control Division (DPCM), with financial support from the French Development Agency, the Pierre Fabre Foundation, and the Principality of Monaco. Together, we implement targeted projects to combat the disease.

Thanks to our partners, we provide holistic care to sickle cell patients, combining medical treatment, psychosocial support, and socio-economic assistance. Our 11 regional branches offer patient referral services, support groups, therapeutic education sessions, and psychological coaching with expert resources. We also facilitate income-generating activities to promote financial independence. This human-centered approach is essential for improving patients’ quality of life. The CID/B works with health mutuals and advocates for universal health coverage to ensure better access to care for all.

What progress has been made since you began your advocacy?

Today, sickle cell disease is recognized as a priority in Burkina Faso’s public health policies. The Ministry of Health, through the DPCM, has developed a dedicated strategic plan and is mobilizing resources for its implementation.

Previously, the disease was widely misunderstood despite its devastating physical, psychological, social, and economic impacts. Now, awareness has grown significantly among both the public and medical professionals. More stakeholders are engaged, specialized training programs have been established, and advances in screening and diagnosis have been achieved.

The perception of the disease has also shifted. Stigma once led some to view it as a curse or assume patients had limited lifespans. Today, we see many patients living fulfilling lives—working, raising families, and thriving with proper care and consistent follow-up.

What are the biggest challenges still ahead?

While progress is evident, critical challenges persist. These include improving access to screening and diagnosis in rural areas, ensuring availability of essential medications like hydroxyurea, pain relievers, antibiotics, and vaccination against preventable diseases. We also face hurdles in managing complications and providing transfusion support. To address these gaps, urgent action is needed: expanding neonatal and early screening, enhancing care quality, and fostering coordinated efforts led by the Ministry of Health and its partners.

Despite these obstacles, I remain resolute in my mission. Fighting sickle cell disease is ultimately a fight for dignity and hope. Every voice and effort counts in building a healthier future for all.