Texas Children’s Hospital discusses their 100&Change Finalist proposal helping African-led initiatives deliver care for sickle cell disease.
Malaria has posed an existential threat to humankind for thousands of years.
In Africa, where malaria is most prevalent, the human body evolved a remarkable genetic adaptation to fight off the malaria parasite: sickle cell hemoglobin. This mutation reduces the risk of malaria-related death by 50-90 percent, making the sickle cell gene a powerful example of the human body’s resilience and evolutionary ingenuity.
However, for every 20 people who carry one sickle cell gene and are protected from malaria, one person ends up with two abnormal genes and develops sickle cell disease (SCD).
For every 20 people who carry one sickle cell gene and are protected from malaria, one person ends up with two abnormal genes and develops sickle cell disease.
SCD is a serious and life-threatening condition. It causes red blood cells to deform, stiffen, and crumble, blocking blood flow and damaging organs throughout the body. Complications include lifelong anemia, frequent episodes of bone-crushing pain, strokes, and a weakened immune system. In Africa, most children with SCD die from infections such as pneumonia and sepsis.
Sickle Cell Disease: Emblematic of Global Health Inequities
Africa is the epicenter of sickle cell disease, with 45 babies born every hour carrying the condition—accounting for 85 percent of the global burden. While SCD is most concentrated in Africa, it is also prevalent in India and countries of the African diaspora, such as Brazil and the Caribbean.
Map depicting the number of newborns with sickle cell anemia in each country in 2015. Credit: Frédéric B. Piel et al. New England Journal of Medicine, 2017;376:1561-1573. View accessible data ›
Life expectancy for children born with sickle cell disease in the United States versus Africa. Credit: Texas Children’s Hospital. View accessible data ›
In the United States, key interventions—infant screening, immunizations, and penicillin—dramatically reduced childhood deaths from SCD by approximately 80 percent between the 1980s and early 2000s. The introduction of hydroxyurea, a drug that reduces red blood cell sickling, significantly decreased SCD complications.
Today, the average lifespan for a newborn with SCD in the U.S. exceeds 50 years. In stark contrast, more than half of all children born with SCD in Africa die before their fifth birthday.
While SCD is considered a rare disease in North America and Western Europe, these regions paradoxically dominate the global market for hydroxyurea.
Living in a Rapidly Changing World
Over the past three decades, the HIV/AIDS epidemic catalyzed exponential growth in Africa’s public health systems, driven by both local and international investment.
Now, however, shifting patterns in global health funding have created a pivotal moment for Africa’s health systems. The continent stands at a crossroads: it can either build on past investments to continue advancing health equity and reduce preventable suffering and economic loss—or risk losing hard-won progress.
Now, however, shifting patterns in global health funding have created a pivotal moment for Africa’s health systems.
This moment calls for bold leadership.
We must navigate the headwinds of change with courage while embracing the opportunity to shape a hopeful future. In response, the Africa Centres for Disease Control and Prevention and Texas Children’s Hospital have launched an African-led initiative to integrate SCD care into primary health systems across the continent.
A healthcare professional delivers treatment to a child with sickle cell disease. Texas Children's Hospital and the Africa Centres for Disease Control and Prevention are leveraging existing systems and infrastructure to integrate sickle cell disease screening and treatment into primary healthcare services across Africa. Credit: Texas Children's Hospital
From left: Dr. Adelard Kakunze, Senior Program Officer, Africa CDC; Dr. Mohammed Abdulaziz, Head of the Division of Disease Control and Prevention, Africa CDC; Dr. Joseph Lubega, Director, Texas Children’s Global HOPE Program; and Dr. Nmazuo Ozuah, Associate Director, Texas Children’s Global HOPE Program, at the first summit of the African Continental Technical Working Group for Sickle Cell Disease. Credit: Africa CDC
A New Day for Children with Sickle Cell Disease aims to deliver a comprehensive package of care—including infant screening, immunizations, malaria prevention, penicillin, and hydroxyurea—to every African child with SCD, regardless of where they live.
By focusing on SCD, this project leverages existing government infrastructure, particularly systems built through the global response to HIV, malaria, and polio eradication efforts. This collaboration strengthens essential pillars of child health by:
- Expanding immunization coverage (including malaria vaccines)
- Training and retaining primary health workers
- Catalyzing supply chains for medicines and diagnostic supplies
- Deploying digital platforms for data and care coordination
The time is now for investments in sickle cell disease to bring new hope to the children and families of Africa.
