Sickle cell disease is a common, deadly, and overlooked killer of children around the world with a mortality rate that rivals that of malaria, HIV/AIDS, and tuberculosis. Why then, haven't you heard of it? Probably because in the U.S., we stop it before it has a chance to kill our babies.
Here, all newborn infants are tested for sickle cell disease, typically with a heel stick blood sample collected soon after birth. Our universal newborn screening program identifies approximately 2500 babies with sickle cell disease each year. Families of these affected babies are notified to allow early education and preventive medical care. With proper intervention, almost all babies born in the US with sickle cell disease will reach adulthood. These children with sickle cell disease have a serious and sometimes catastrophic illness, but they have treatment options and they survive.
Not so in Angola, where the burden of sickle cell disease is immense and accurate statistics are not even available. Angola has just one sixteenth the population of the United States, but at least four times the number of babies (over 10,000) born each year with sickle cell disease, among the highest documented prevalence in the world. Sadly, not a single one of these babies is identified at birth. Many die in the first two years of life from preventable infections, especially pneumonia and malaria, and many others die of anemia. By five years of age, 80-90 percent of these children have died, most without ever being tested for sickle cell disease.
But for 16,000 babies born in Angola this past year, there was a ray of hope. Encouraged by the First Lady of Angola, and aided by the vision and support of Mr. Ali Moshiri (President, Chevron Africa and Latin America Exploration and Production Company) and Dr. Mark Kline (Physician-in-Chief at Texas Children's Hospital and Chairman of Pediatrics at Baylor College of Medicine), the Angolan Sickle Cell Initiative was launched in March 2011 by the Texas Children's Center for Global Health. With financial support from Chevron Corporation, and in collaboration with the Ministry of Health of Angola, this bold initiative quickly reached fruition on July 19,2011 when babies born at Lucrecia Paim Maternity Hospital in Luanda province became the first Angolan infants to ever receive newborn screening for sickle cell disease.
Exactly one year later, over 16,000 babies have already been tested, and several hundred babies with sickle cell disease have been identified and treated. Angolan obstetrical nurses have been trained to collect the blood samples, Angolan laboratory technicians have become expert in diagnostic testing, and Angolan pediatric nurses and doctors have learned to provide life-saving medical interventions. This landmark program in Angola serves as a big step forward in the country's efforts to improve its healthcare system.
It's a big step without question, but it's only the first step. It will take increased funding, continued political leadership and a commitment of resources to keep the momentum going.
This invisible killer of children contributes substantially to the "under-five mortality" statistics, and prevents developing countries like Angola from reaching their World Health Organization -- Millennium Development goals. The World Health Organization estimates that up to 15 percent of the under-five mortality in sub-Saharan Africa is attributable to sickle cell disease. Clearly this is an unmet medical need for developing countries in Africa, as well as in countries within Latin America and the Caribbean.
Over the next 12 months, Texas Children's Center for Global Health plans to expand to a second province in Angola, with the hope of screening even more babies and save more lives. In addition, plans are in the works to expand the program into more countries in Africa and South America in the near future.
For too long we have allowed innocent babies to die due to a simple lack of resources. But now we have the chance to do right by the people of Angola, by testing every baby for a disease all too common and all too deadly if left undetected -- just like we do in the U.S.
Russell E. Ware MD PhD is the Director of the Texas Children's Center for Global Health, Baylor College of Medicine, Houston Texas.
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