The costs required to reduce the risk of sickle cell disease are beyond the reach of most individuals in India and sub-Saharan Africa, where the disease is most prevalent, says a new Commission published in The Lancet Haematology journal.
The Commission publishes shortly after a recent study in the same journal found that the highest burden of sickle cell disease (SCD) disability was concentrated in western and central sub-Saharan Africa and India.
The authors of the Commission also noted that there is a shortage of healthcare and scientific professionals with expertise in SCD, as well as a lack of trials aimed at developing novel treatments in these countries.
SCD is a group of inherited red blood cell disorders that affect haemoglobin, the protein that carries oxygen through the body. The condition affects more than 20 million people worldwide.
A recent study suggested there were 3.76 lakh global SCD-related deaths in 2021, compared to 34,400 cause-specific deaths.
“Whereas the majority of major causes of death are decreasing, the number of deaths due to sickle cell disease is increasing globally," said chair of the Commission, Frederic Piel from Imperial College London, U.K.
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"The costs required to reduce the risk of sickle cell disease is beyond the reach of most individuals in sub-Saharan Africa and India where the disease is most prevalent - it needs to be directly funded by governments," said Mr. Piel.
According to the Commission, reducing the burden of SCD requires substantial financial and political commitment to improving data-collection, diagnosis, treatment and training, and doing so will positively impact the lives of millions of patients and families worldwide.
With over half a million babies born with SCD in 2021, the Commission highlights how newborn screening for SCD can lead to babies with the disease receiving life-changing treatment before symptoms develop and calls for all babies worldwide to be tested for SCD by 2025 to prevent long-term complications of the disease.
The authors also shine a light on the inequitable treatment of SCD. Penicillin, methods to protect against malaria, the drug hydroxyurea and blood transfusions all have good evidence to show they reduce deaths and long-term consequences of SCD, they said.
However, access and use of these treatments and reduction methods is poor, particularly so in low and middle-income countries where most people with SCD live, the researchers said.
"There is a shortage of healthcare and scientific professionals with expertise in SCD, as well as a lack of trials aimed at developing novel treatments." the authors of the paper said.
"This problem is particularly severe in most of sub-Saharan Africa and India, and the Commission argues there is an urgent need for trials specifically designed for people in these countries," they said.
The Commission says that in the context of increasing global inequalities, partly driven by racism, previous calls for action on SCD have been largely ineffective.
"With adequate engagement of governments, the changes identified in our Commission are achievable and will improve the lives of people with sickle cell disease throughout the world," Mr. Piel added.
