A team of researchers led by UNC Project-Malawi has been given a one-year, $500,000 grant to build clinical and research infrastructure that will improve diagnosis and treatment for children living with sickle cell disease (SCD) in Malawi.
Malawi is a country located in sub-Saharan Africa. Each year in Malawi, about 2,000 infants are born with SCD. Without diagnosis and proper care, as many as 90% of these children will not survive past the first five years of life. In comparison, in the U.S. — thanks to infrastructure such as newborn screening and easy access to vaccinations to prevent infections — about only 1% of people born with SCD die in early childhood.
“Every child, no matter where they are born in the world, should have equal access to care. Unfortunately for children born with sickle cell disease in Malawi and across sub-Saharan Africa, this is not the case,” project director Kate Westmoreland, MD, a professor at the University of North Carolina (UNC), said in a press release.
“This award will make it possible to provide comprehensive high-quality sickle cell care similar to what children would receive in Chapel Hill [in North Carolina, U.S.] to our patients in Malawi, and ultimately to improve their survival and quality of life,” Westmoreland said.
Through many years of work and network-building, UNC Project-Malawi has built a sophisticated clinical trials research infrastructure in Malawi. This project initially was focused on studying human immunodeficiency virus (HIV), but in the past decade, it has expanded to include cancer and SCD.
Both HIV and SCD affect about the same number of children in Malawi. However, there generally has been fewer resources put toward SCD research. This may be partially attributable to the fact that, unlike HIV, SCD is not transmissible and is a pediatric condition — both areas where research funding tends to lag.
The overarching goal of the new project is to provide a clinical standard of care that approaches the level of care available to patients in the U.S. The project also intends to improve diagnostics, to develop an electronic database, and to explore community preparedness for potential gene therapies.
“The mortality rates for sickle cell disease and HIV is unacceptably high in sub-Saharan Africa,” said Irving Hoffman, international director of UNC Project-Malawi. “We want to build clinical and research systems that will set the stage to reduce mortality rates, including eventual gene therapy for both diseases.”
Funding for the new project comes from a joint award from the National Heart, Lung, and Blood Institute and the National Institute of Allergy and Infectious Diseases, both of which are part of the National Institutes of Health (NIH).
The project will be carried out in collaboration with the Malawi Ministry of Health, Kamuzu Central Hospital, Baylor College of Medicine, Cincinnati Children’s Hospital, the Research Triangle Institute, and Texas Children’s Hospital Global Hematology Oncology Pediatric Excellence (HOPE) Program.
“We are excited to partner with UNC on this initiative that will strengthen the capacity to diagnose and treat sickle cell disease in Malawi,” said Nmazuo Ozuah, MD, medical director of Global HOPE in Malawi. “Global HOPE is committed to drastically improving outcomes for children with cancers and blood disorders in sub-Saharan Africa. The burden of sickle cell disease in this region cannot be overstated.”
Russell Ware, MD, PhD, a SCD expert based at Cincinnati Children’s Hospital who has consulted on the project, said UNC is developing a “truly thorough program that will be following hundreds of children.”
“It’s a long-term investment, because these children suffer from anemia, infections, and painful events. But the good news is that with surveillance, screening, and education, effective treatments are easy to provide,” Ware said.
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