The American Society of Hematology (ASH) is leading a campaign to fight sickle cell disease in Africa and has called on governments, particularly in sub-Saharan Africa, to invest in newborn screening of the disease.
During a webinar to mark this year’s Sickle Cell Awareness Day on Tuesday, June 19, President of the ASH, Dr. Alexis Thompson, said the disease remains a major killer of infants and children in the developing world, particularly in sub-Saharan Africa.
Sickle cell is an inherited, chronic disorder which can cause severe pain, stroke, organ failure, and other complications, including death.
This year, approximately 300,000 babies around the world will be born with sickle cell disease.
In West Africa, the WHO has estimated that between 5 to 16% of newborns die before age five.
Also, in Ghana and other sub-Saharan African countries, an estimated 50 to 90 per cent of infants born with the disease will die before their fifth birthday.
The United Nations has designated sickle cell as a global public health problem.
Dr Thompson said while simple public health measures have improved life expectancy of children born with the disease in the United States, elsewhere in Africa, the disease continues to be a major global public health issue.
Dr. Kwaku Ohene-Frempong of the Sickle Cell Foundation of Ghana said although Nigeria has the greatest burden of sickle cell in the world, with an estimated 15,000 babies are born every year with the disease, the statistics for Ghana is not any better.
Speaking at the webinar on Ghana’s progress with infant screening for the disease, Dr Ohene-Frempong said: “Ghana established newborn screening as a pilot programme in 1995, but we are able to check only about 4% of the babies born in Ghana because of government resources and the inability to scale up the screening.”
He also mentioned the lack of data on sickle cell among infants as a major disincentive to draw government attention to the disease that worsens infant mortality in the country.
“In Ghana, we’ve seen that simple public health measures, especially newborn screening, help children lead more normal lives. In the first 10 years of newborn screening, we made dramatic improvements in reducing sickle cell-related childhood mortality,” said Dr Ohene-Frempong.
What is newborn screening?
The screening looks for developmental, genetic, and metabolic disorders in the newborn baby to enable steps to be taken before symptoms of the disease develop.
Although the disease is rare, it can be treated if caught early.
The types of newborn screening tests that are done vary from state to state.
In addition to blood tests, screening for hearing loss and for critical congenital heart disease (CCHD) is recommended for all newborns.
How the test is performed
Screenings are done using the following methods:
-Blood tests. A few drops of blood are taken from the baby's heel. The blood is sent to a lab for analysis.
-Hearing test. A health care provider will place a tiny earpiece or microphone in the infant's ear. Another method uses electrodes that are put on the baby's head while the baby is quiet or asleep.
-CCHD screen. A provider will place a small soft sensor on the baby's skin and attach it to a machine called an oximeter for a few minutes. The oximeter will measure the baby's oxygen levels in the hand and foot.