The American Society of Haematology (ASH), along with the Sickle Cell Disease Coalition, debuts videos that shed light on the global state of sickle cell disease to help improve screening and early care for children in Africa with sickle cell disease
According to them, this year approximately 300,000 babies around the world will be born with sickle cell disease (SCD) – an inherited, chronic blood disorder that can cause severe pain, stroke, organ failure and other complications, including death.
The United Nations has therefore 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 fifth 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 from infancy to adulthood for people with the disease.
In a webinar today, ‘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 for raising global awareness about this devastating disease.
Experts also discussed recent efforts to distribute two new videos — a public service announcement and short documentary— which address the need for newborn screening and counter prevailing myths about the disease in sub-Saharan Africa.
MD of the Sickle Cell Foundation of Ghana, Kwaku Ohene-Frempong said: “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.
“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.”
The videos highlight efforts currently underway in Ghana to help dispel myths and eliminate stigma from the disease. The videos show families the steps they can take to ensure children born with SCD are diagnosed promptly so they can get proper medical care.
Currently, in Ghana newborn screening and educational efforts have significantly decreased mortality rates.
On his part, ASH President Alexis A. Thompson – MD, MPH of the Ann and Robert H. Lurie Children’s Hospital of Chicago – also noted that: “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 about the condition, and the simple, relatively inexpensive interventions which can save lives. It starts with early recognition – ideally, through newborn screening.”
He added: “Our hope is that by using these videos to dispel myths and tell parents SCD is manageable, we can encourage families, communities and public officials to screen newborn children for sickle cell disease so they can receive critical, accessible treatment that will help them survive”.
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 SCD stakeholder community’s voice, promote awareness, and improve outcomes for individuals with SCD globally.