advocate for sickle cell patients gloria damoaliga berges leads fight in Burkina Faso

Ouagadougou – In Burkina Faso, sickle cell disease affects an estimated 4.63% of the population, with nearly 2% of newborns diagnosed with the severe SS form. These figures highlight a pressing public health challenge requiring a coordinated, multi-sector response involving all levels of society.

For over a decade, Dr. Gloria Damoaliga Berges, Vice President of the CID/B (Centre d’Initiative contre la Drépanocytose au Burkina Faso), has been a leading advocate for sickle cell patients. Her journey reflects a deep commitment to improving care, raising awareness, and reshaping perceptions of the disease.

Here, she shares the motivations behind her work, the progress made, ongoing challenges, and her vision for the future.

why dr. gloria damoaliga berges committed to fighting sickle cell

From the start of my medical career, I cared for children and young adults battling sickle cell disease. Witnessing their intense pain and feeling powerless to help ignited my passion for this cause. In 2015, I was asked to help establish a specialized care unit at the hospital where I worked, with support from the CID/B leadership. That moment marked a turning point in my involvement, transforming it into a lifelong mission.

why does sickle cell still affect newborns in Burkina Faso?

Sickle cell disease is hereditary. When both parents carry the hemoglobin S gene, there’s a one-in-four chance each pregnancy will result in a child with the condition. Unfortunately, many couples remain unaware of their genetic status before conception, as premarital or prenatal hemoglobin electrophoresis testing is often overlooked. Raising awareness about these tests before marriage or pregnancy is crucial to reducing new cases.

community outreach: breaking stigma and saving lives

A major hurdle is the widespread lack of understanding about sickle cell disease within communities. To address this, I’ve led sensitization campaigns and organized screening drives. In early 2024, I coordinated a nationwide initiative that screened nearly 15,000 children across five regions, in partnership with a local NGO. These efforts not only improve early detection but also combat harmful stereotypes that stigmatize patients.

concrete actions changing lives in Burkina Faso

My work includes collaborating with hematology teams and the Ministry of Health to implement neonatal screening programs and train health workers in managing sickle cell pain. I also helped launch “Drépa Minute,” a free hotline at 80001350 offering information in local languages. These steps aim to enhance disease awareness, improve treatment access, support families, and mobilize collective action against sickle cell.

The CID/B partners closely with the Ministry of Health’s Division for Prevention and Control of Non-Communicable Diseases (DPCM), supported by funding from the French Development Agency, the Pierre Fabre Foundation, and the Principality of Monaco. Together, we provide holistic care that includes medical treatment, psychosocial support, and socioeconomic assistance to patients.

Our 11 regional branches organize support groups, therapeutic education sessions, and coaching led by specialists. We also facilitate income-generating activities to boost patients’ financial independence. By working with health mutuals, we advocate for universal health coverage to ensure better access to care. This compassionate approach is vital for improving quality of life.

measurable progress in sickle cell awareness and care

Today, sickle cell disease is increasingly recognized in public health policies. The Ministry of Health, through the DPCM, has developed a dedicated strategic plan and is mobilizing resources for its implementation—a major shift from the past when the disease was widely misunderstood despite its severe physical, psychological, social, and economic toll.

Public and medical awareness has grown, more professionals are trained, and specialized programs have been introduced. The stigma surrounding the disease has faded, with more patients now living longer, building families, working, and thriving thanks to proper care and follow-up.

ongoing challenges in sickle cell management

Despite progress, key challenges remain: expanding access to screening and diagnostics in rural areas, ensuring availability of essential medicines like hydroxyurea, pain relievers, antibiotics, and vaccines, and improving transfusion support. Strengthening complication management is also a priority.

It’s time to amplify the voices of sickle cell patients by scaling up neonatal and early screening, enhancing care delivery, and fostering coordinated action led by the Ministry of Health and partners.

Despite these obstacles, I remain dedicated to this fight—because advocating for sickle cell patients is about restoring dignity and hope.