India has earned the unfortunate title of being the thalassaemia capital of the world, with staggering numbers reflecting the severity of the issue. On World Thalassaemia Day, experts shed light on the complex reasons behind this alarming reality. Thalassaemia, a severe inherited blood disorder, has gripped India with an iron fist, affecting a significant portion of its population. Lack of widespread awareness, limited genetic counselling, and deeply ingrained traditional beliefs are identified as the major culprits behind India's dubious distinction.
"India has the largest number of children with thalassaemia major in the world, with around 1-1.5 lakhs of children affected. India's status as the thalassaemia capital stems from a complex interplay of factors. Genetic predisposition, consanguineous marriages, and lack of awareness contribute to its prevalence. The rise in India can be attributed to population growth, limited access to screening, and lack of awareness," Sunil Bhat, Director and Clinical Lead - Paediatric Haematology, Oncology and BMT, Narayana Health Network Hospitals, told IANS.
Vijay Ramanan, Sr. Consultant Clinical Haematologist, Bone Marrow & Stem Cell Transplant, Ruby Hall Clinic, Pune, said, "In India, certain communities such as Sindhis, Punjabis, Bhanushali, Kutchi, Marwari, Maratha, Muslim, and Bengalis have a higher prevalence of the gene, which increases the incidence of Thalassaemia. The incidence of Thalassaemia Minor in this community varies from 8-14 percent".
Compounding the issue is the lack of comprehensive data, hindering effective policymaking and resource allocation. Estimates suggest that there are anywhere between 4 to 6 lakh children grappling with thalassaemia major in India, yet the absence of a unified registry obscures the true extent of the problem.
Furthermore, the country's healthcare landscape presents a stark contrast between urban and rural regions, with disparities in access to vital medical services like blood transfusions and chelation therapy. This discrepancy perpetuates the suffering of those afflicted by thalassaemia, particularly in remote areas.
"Lack of widespread awareness and education about Thalassaemia and genetic counselling among the general public leads to insufficient preventive measures. Prenatal and pre-marital screening for Thalassaemia is not uniformly practiced across the country," Vijay said.
"Ignorance and desire to believe that astrology is more important than science have contributed to an increase in thalassaemia minors marrying another thalassaemia minor. Such marriages have a 25 percent chance of getting a thalassaemia major child," he added.
The prevailing ignorance and reliance on traditional beliefs pose significant barriers to preventive measures. Despite the availability of prenatal diagnosis, many couples opt out due to religious convictions or a lack of awareness, inadvertently perpetuating the cycle of suffering.
"In addition, promoting voluntary genetic testing national policy from the Government and fostering partnerships between doctors and communities can enhance prevention efforts. Ultimately, proactive measures, such as early diagnosis and timely management, hold the key to alleviating the impact of thalassaemia in India," Sunil said.
Addressing this multifaceted challenge demands a concerted effort towards raising awareness, fostering genetic education, and implementing widespread screening programmes. Experts advocate for comprehensive education on genetic risks, premarital counselling, and proactive measures such as voluntary genetic testing.
(with IANS inputs)
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