As India celebrated its 78th Independence Day, we are reminded of our journey from colonial rule to self-governance. This moment of pride, however, should also spotlight a pressing health issue shadowing our progress: Thalassemia. Despite our advancements and increased healthcare budget, India, labeled as the Thalassemia capital of the world, continues to grapple with this preventable crisis.
India has the largest number of children with significant Thalassemia in the world – about 1 to 1.5 lakhs, with almost 42 million carriers of the ß (beta) thalassemia trait. Annually, 10,000 to 15,000 babies with thalassemia major are born. Thalassemia is prevalent nationwide, with an average carrier frequency of 3-4%. It is particularly common among Sindhis, Punjabis, Gujaratis, Bengalis, Mahars, Kolis, Saraswats, Lohanas, and Gaurs. HbS is highly prevalent in the tribal populations of Southern, Central, and Western states, reaching as high as 48% in some communities. HbE is prevalent in the North Eastern states and has a carrier frequency as high as 50% in some areas. The prevalence of Thalassemia is lower in the Eastern states of West Bengal, Bihar, and Uttar Pradesh, while HbD is present in about 2% of people in Punjab. These children with Thalassemia require repeated blood transfusions, iron chelation treatment, and facilities for bone marrow transfusion, causing a substantial financial burden on India’s health systems.
The recent budget increase, with a 13% rise for the Department of Health and Family Welfare and a 14% increase for the Department of Health Research, highlights a growing focus on healthcare. Despite these financial boosts, India reports thousands of new thalassemia cases annually and still lacks comprehensive thalassemia management services and precise data on the condition’s incidence and prevalence.
Global public health improvements have been significant, yet our focus remains on curative rather than preventive measures. Thalassemia exemplifies this gap. The absence of a national-level comprehensive thalassemia prevention program and comprehensive data on the incidence of Thalassemia underscores an urgent need.
Primary prevention for Thalassemia should focus on education and genetic counseling. These measures can help prevent the birth of patients with Thalassemia. Several countries, namely Italy, Greece, Cyprus, the UK, France, Iran, Thailand, Australia, Singapore, Taiwan, Hong Kong, and Cuba, have set up comprehensive national prevention programs for thalassemia control. These programs include public awareness and education, carrier screening, counseling, and information on prenatal and preimplantation diagnosis, and have significantly reduced the incidence of Thalassemia. We should adapt the learnings from these successful programs to develop an effective public health intervention for eliminating thalassemia major in India.
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Thalassemia affects countless lives, requiring ongoing medical care and a strategic healthcare approach. The government’s efforts to encourage voluntary blood donation are commendable; however, strict adherence to blood safety guidelines and ensuring access to safe blood services at all community health centers in the country are warranted. Effective implementation of Blood Transfusion Practice & Hemovigilance Guidelines 2022 can improve safety and access to blood transfusion services for all, including thalassemia patients. Challenges faced by thalassemia patients—compounded by a lack of awareness, timely diagnosis, and adequate treatment facilities—remain stark. Addressing these issues is not just a choice but an imperative. We need a multifaceted, comprehensive prevention program approach for Thalassemia involving legislative, medical, and social interventions. Introducing a consolidated blood law is essential. This legislation should ensure safer blood transfusions, preventing mortality from transfusion-transmitted infections (TTIs) such as HIV and hepatitis C virus (HCV) by mandating Nucleic Acid Testing (NAT) nationwide.
Thalassemia is recognized as a disability under the Rights of Persons with Disabilities (RPWD) Act 2016, and yet job reservations for these patients are still pending. Ensuring job reservations would empower thalassemia patients to contribute productively to society. This gap must be addressed to provide the necessary support for these individuals to thrive in their careers.
Integrating a similar initiative for Thalassemia could enhance the scope of the national elimination program for sickle cell anemia. Establishing a national thalassemia control program is crucial to systematically address this condition with comprehensive care and prevention strategies akin to the program for sickle cell anemia.
In addition to the thalassemia prevention program, Gene therapy for Thalassemia should not be a distant dream given India’s status as the world’s pharmacy. Accelerating research and development in this area could potentially offer a long-term cure for Thalassemia, dramatically changing the lives of those affected. With India’s expertise in pharmaceuticals and biotechnology, this is a realistic and hopeful prospect. A concerted effort towards gene therapy could place India at the forefront of combating Thalassemia globally, offering not just hope for its citizens but also for the world.
The battle against Thalassemia is complex and multifaceted, requiring the cooperation of various sectors of society including healthcare professionals, government bodies, non-profit organizations, and the public. Education and awareness are vital. By informing potential carriers of their status and the implications for their future children, we can empower individuals to make informed decisions about their reproductive choices. Moreover, improving diagnostic facilities and access to affordable treatments are crucial steps in providing comprehensive care to those already affected by Thalassemia.
Blood donation plays a significant role in Thalassemia care. Cultivating a culture of regular voluntary blood donation can ensure a stable supply of safe blood for transfusions, which are often a lifeline for Thalassemia patients. Furthermore, advancements in blood safety measures, including the enforcement of Nucleic Acid Testing (NAT), can minimize the risk of transfusion-transmitted infections, providing a safer treatment landscape for patients.
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The time to act is now. By recognizing Thalassemia not just as a health issue but as a social and economic challenge that affects the very fabric of our nation, we can marshal the collective will and resources necessary to tackle this crisis head-on. With incremental yet determined steps towards education, prevention, better healthcare services, and innovative treatments like gene therapy, India can transcend its title as the Thalassemia capital of the world to become a leader in Thalassemia care and prevention. The journey from being the site of one of the world’s most significant Thalassemia crises to a beacon of hope and progress is long and fraught with challenges, but it is a journey worth embarking on for the sake of millions of current and future citizens. The time to bolster our efforts and commitment to eliminating Thalassemia is now, as we look forward to not just improving lives but also preserving the health and well-being of future generations.
Views expressed by: Dr D.K. Mangal, Adjunct Professor, IIHMR University and Senior Associate, Johns Hopkins Bloomberg School of Public Health, Baltimore, USA.
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