In India, every year, thousands of children are diagnosed with debilitating blood disorders such as transfusion-dependent thalassemia, aplastic anaemia, and sickle cell disease. These conditions cause severe manifestations of symptoms, leaving families grappling with emotional and financial burdens.
These patients require lifelong care or curative intervention. At present, a bone marrow transplant (BMT) remains the only curative option for these diseases. However, the prohibitive cost of this procedure makes it inaccessible for most patients in a country like India.
Dr Gaurav Kharya
Bone marrow transplantation is a complex and resource-intensive procedure, requiring exhaustive pre-transplant investigations, post-transplant care and immunosuppressive treatment. Depending on the type of transplant—autologous, allogeneic, or haploidentical—the cost can range from ₹7 lakh to ₹50 lakh or more. So, for families earning less than ₹50,000 annually, which constitutes a significant portion of India's population, this treatment is far beyond their means.
India sees an estimated 10,000 children born each year with thalassemia major, a genetic blood disorder requiring regular blood transfusions and iron chelation therapy along with other supportive measures. For most of these children, a bone marrow transplant offers the only chance for a cure. Similarly, aplastic anaemia—a condition in which for idiopathic reasons, the bone marrow fails to produce enough blood cells—has a grim prognosis without a BMT.
Recognising the dire need for financial assistance, some governmental and corporate initiatives have been launched to alleviate the burden on families. One notable program is the Thalassemia Bal Sewa Yojna, a CSR by Coal India Limited. This scheme provides financial assistance to children suffering from thalassemia and aplastic anaemia for bone marrow transplants. By covering up to ₹10 lakh per child, the scheme offers a glimmer of hope for families who otherwise cannot afford the procedure.
Since its inception, the Thalassemia Bal Sewa Yojna has helped hundreds of children receive transplants at leading medical centres. However, these efforts need to be expanded in both scope and reach. Take, for example, sickle cell anaemia, another debilitating condition prevalent among tribal populations in India, which is not included in this scheme. With over 30,000 kids born with sickle cell disease in India each year, expanding financial support to include this disease is an urgent necessity.
India bears a disproportionate burden of genetic blood disorders, with approximately 42 million carriers of the thalassemia gene and a high prevalence of sickle cell anaemia in tribal regions of states like Gujarat, Maharashtra, Chhattisgarh, Jharkhand, Madhya Pradesh and Odisha.
To address this huge problem, what is needed is a strong political will. The government must expand existing financial aid programs to include diseases like sickle cell anemia. Besides, initiatives like universal newborn screening for hemoglobinopathies, subsidies for genetic counselling, and financial support for curative therapies could significantly improve outcomes. Public-private partnerships can also play an important role in mobilising resources and ensuring equitable access to care.
Another important aspect is investing in alternative curative treatments for these disorders. Advancements in cellular therapies offer new avenues for hope. Gene editing technologies like CRISPR-Cas9/Cas12 are being explored to correct the genetic mutations that cause thalassemia and sickle cell anaemia. CAR-T cell therapy, which has revolutionised cancer treatment, is also being adapted for blood disorders worldwide.
Investing in the research and development of these therapies is equally crucial. Research institutions such as the Indian Council of Medical Research (ICMR) and biotechnology companies must collaborate to accelerate the development of affordable cellular therapies tailored to the Indian population. If successful, such innovations could eventually reduce reliance on bone marrow donors and lower the overall cost of treatment, making cures more accessible and much safer for those in need.
By prioritising research, development, and equitable access to existing treatments and newer therapies, India can ensure that every child—regardless of their socio-economic background—has a chance at a healthy life.
The writer is a paediatric haematologist and a bone marrow transplant specialist in New Delhi. He is also a researcher innovating cell therapy solutions.
The opinions expressed in this article are those of the author and do not purport to reflect the opinions or views of THE WEEK.
