By Dipo Olowookere
This year, approximately 300,000 babies around the world will be born with sickle cell disease (SCD), an inherited, chronic blood disorder which can cause severe pain, stroke, organ failure, and other complications, including death.
The United Nations has designated SCD as a global public health problem. While simple public health measures such as newborn screening, vaccinations, and early interventions have been proven to greatly improve childhood survival in several countries, including the United States, SCD continues to be a major global public health issue.
It remains a major killer of infants and children in the developing world, particularly in sub-Saharan Africa, where an estimated 50–90 percent of infants born with SCD will die before their 50th birthday.
In support of World Sickle Cell Day, the American Society of Haematology (ASH) is taking measures to raise awareness of SCD in Africa in an effort to improve health outcomes for people with the disease from infant to adulthood.
In a webinar on World Sickle Cell, “Global Action: Improving Health Outcomes for Sickle Cell Disease,” ASH convened global health experts, media, and its Sickle Cell Disease Coalition partners to address the urgent need to raise global awareness about this devastating disease.
Experts also discussed recent efforts to distribute two new videos — a public service announcement and short documentary — that address the need for newborn screening and counter the prevailing myths about the disease in sub-Saharan Africa. These videos, made possible by a grant from Novartis Pharmaceuticals Corporation, can be found and shared at http://scdcoalition.org/global.
“One of the greatest hurdles we face in curbing the heartbreaking rate of mortality caused by sickle cell disease in sub-Saharan Africa is lack of awareness of the condition and the simple, relatively inexpensive interventions that can save lives.
“It starts with early recognition, ideally through newborn screening,” said ASH President Alexis A. Thompson, MD, MPH, of the Ann and Robert H. Lurie Children’s Hospital of Chicago. “Our hope is that by using these videos to dispel myths and tell parents that SCD is manageable, we can encourage families, communities and public officials to screen newborn children for sickle cell disease so that they can receive critical, accessible treatment that will help them survive.”
The videos highlight efforts currently underway in Ghana, a country with a high incidence of SCD, to help dispel myths and eliminate the stigma of the disease.
The videos show families the steps they can take to ensure that children born with SCD are diagnosed promptly so they can get proper medical care. In Ghana, newborn screening and educational efforts have significantly decreased mortality rates.
“Unfortunately, despite the work we’ve done in Ghana and across Africa, much remains to be done to reduce infant mortality — 90 percent of children with SCD in resource-poor countries will not survive to adulthood,” said Kwaku Ohene-Frempong, MD, of the Sickle Cell Foundation of Ghana. “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.”
ASH has made conquering SCD around the world a top priority and is leading efforts to translate research into cutting-edge therapies and cures, increase access to care, educate health care providers, and encourage policymakers to make strides in universal screening and care efforts.
In 2016, the Society founded the Sickle Cell Disease Coalition to amplify the voice of the SCD stakeholder community, promote awareness, and improve outcomes for individuals with SCD globally.
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