This post is a contribution from Hari Prabhakar of the Sickle Cell Disease Center, at Gudalur Adivasi Hospital, India.
Sickle Cell Disease (SCD) is truly a global genetic disease, and there has often been a misconception that SCD is found only among those of African/African-American descent. In order to successfully manage the disease internationally and formulate global strategies, it is important that we understand the different types of challenges and lessons learned from sickle cell management from both the patient and provider perspective
As such, I would like to share with you our experiences in managing sickle cell disease amongst an indigenous population in South India, the lessons learned, and how we can use these lessons to improve SCD management in the United States.
Each year in India, 495,000 infants have congenital malformations, 390,000 have glucose-6 phosphorylase enzyme deficiency, 21,400 have Downs Syndrome, amongst the Adivasis population ((indigenous populations in India are also called Adivasis) 9,000 infants are born with Beta-thalassemia, and 5,200 have sickle-cell anemia. Due to inadequate diagnostic, management, and rehabilitation facilities, and lack of comprehensive knowledge/acceptance of the disease, the burden of these disorders among the Indian population is far greater than Western countries, and it is particularly pronounced among indigenous (Adivaisis) population in South India.
Adivasis, who are comparable to the Native Americans of the US, number around 10% of India’s population (around 100 million people!). They have been traced back to 3000 BC, and have genetic similarities to Australian aborigines and African tribes. SCD has the highest prevalence among this population, with up to 1 in 5 people being a carrier, and up to 1 in 20 having the disease.
As such, millions in India suffer and succumb to the disease, with little money, knowledge of the disease, or access to healthcare facilities to seek care. Due to a combination of social neglect, inadequate healthcare infrastructure and research, and lack of grassroots implementation and national policy, there are almost no comprehensive sickle cell programs in India, where it is needed most.
Much like in the United States, it is of utmost importance that those in India suffering from the disease are provided a voice and capability to seek care from one of the most despicable and significant genetic diseases on the planet.
Resources in India