Ranchi: An initiative has been taken to demand a special disability policy for children and individuals suffering from Thalassemia, Sickle Cell Anemia, and Aplastic Anemia. In this connection, representatives met Shri Suryakant Prasad, Director of the Composite Regional Centre (CRC), Ranchi, a Government of India institution working in the field of disability, at his office in Namkum.
During the meeting, Nadeem Khan, representing the “Lahoo Bolega” Blood Donation Organization, Ranchi, and the Jharkhand Thalassemia Patients Association, highlighted the serious issues faced by children and adults affected by Thalassemia, Sickle Cell Anemia, and Aplastic Anemia in Jharkhand. He stated that although these diseases fall under one of the 21 categories of disability, there is no separate, practical, and logical disability policy for such patients.
He pointed out that at present, the disability percentage mentioned on UDID cards for Thalassemia and Sickle Cell patients is limited to 40–50 percent. As a result, patients are unable to receive full benefits under the Disability Act. This is despite the fact that Thalassemia and Sickle Cell patients require lifelong monthly blood transfusions and continuous medication costing thousands of rupees to keep their bodies stable.
He further explained that even after regular treatment, patients suffer from severe complications such as polio-like conditions, unequal growth of limbs, difficulty in sitting, hip problems, inability to walk properly, weakness in hands, abdominal swelling, enlarged spleen, breathing difficulties, protruding eyes, unbearable pain throughout the body, and changes in facial structure. In such circumstances, percentage-based disability assessment fails to reflect the real severity of their condition.
It was demanded that, following the model of the Bihar government, Jharkhand should create a separate special disability category for Thalassemia and Sickle Cell patients and send a focused proposal to the state government under the Disability Act.
The delegation also informed that due to these illnesses, many affected children are forced to drop out of schools and colleges, while in several cases parents of patients have lost their jobs. Patients and their families often face humiliation and inhumane treatment at schools, colleges, and workplaces. Clear directives were demanded to prevent such discriminatory practices.
The memorandum also demanded that Thalassemia and Sickle Cell patients be provided with permanent Indian Railways concession passes on the lines of disability benefits. Additionally, it was urged that, as practiced in Assam, possession of a UDID card alone should make patients eligible for all appropriate government welfare schemes.
It was further highlighted that mothers of children suffering from Thalassemia, Sickle Cell Anemia, and Aplastic Anemia often face social and familial discrimination. In many cases, they are pushed into the status of single women and forced to live separately or at their parental homes. The delegation demanded special protection and access to government schemes for such affected families.
The need to organize special camps to address issues related to Thalassemia, Sickle Cell Anemia, and Aplastic Anemia at all levels was also emphasized.
It was pointed out that Jharkhand is the second most affected state in the country in terms of Thalassemia and Sickle Cell Anemia cases, making it imperative to focus on disability recognition, treatment, and day-to-day livelihood issues of the patients.
CRC Director Shri Suryakant Prasad, along with his team, listened carefully to all the points raised. He stated that while he was aware of the issues related to Thalassemia, Sickle Cell Anemia, and Aplastic Anemia, he had not fully realized the seriousness of the situation in this form. He assured that appropriate steps would be taken based on the discussion and that proposals would be prepared on relevant issues.
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