Thalassemia is an inherited blood disorder that causes the body to have less haemoglobin than normal. It is a rare burdensome disease requiring lifelong repeated blood transfusion, as well as other expensive medical interventions for survival. Aplastic Anaemia is a condition that occurs when body stops producing enough new blood cells.
Being an important cause of morbidity and mortality, Thalassemia imposes a heavy burden on families and the health sector in our country. India has the largest number of children with Thalassemia major in the world – about 1 to 1.5 lakhs and almost 42 million carriers of ß (beta) thalassemia trait. About 10,000 -15,000 babies with thalassemia major are born every year.
Sickle cell disease affects many communities in certain regions, such as central India and States of Gujarat, Maharashtra and Kerala. These diseases pose emotional, psychological and economic burden on the affected families especially those from rural and poor backgrounds besides placing great burden on healthcare services.
Permanent cure of these ailments lies in Stem Cell Transplant also known as Bone Marrow Transplant. Further, it is found that the treatment is more successful if Bone Marrow Transplant is done at an early age.
CSR of Coal India Limited
World’s single largest coal producer Coal India Limited, under the auspices of the Ministry of Health & Family Welfare, Government of India runs its CSR initiative ‘Thalassemia Bal Sewa Yojana’ for supporting the treatment of children affected by Thalassemia and Aplastic Anaemia.
Coal India Limited is the first PSU to take up CSR project in 2017, for curative treatment of Thalassemia. Financial assistance upto Rs.10 lakh is provided to eligible patients for Bone Marrow Transplant in ten prominent hospitals spread across the country. From 2021, Aplastic Anaemia patients are also covered under the scheme.
The scheme has won the internationally renowned ‘Green World Environment Award’, in January 2024 in the CSR category in “Fuel, Power and Energy” sector.
Eligibility
To be eligible for the support, patients need to have an annual family income of less than Rs. 8 lakhs along with fulfilling the medical and age-related criteria. The Rs. 70 cr. worth project is currently into its 3rd phase. Recently, the 500th BMT under the project was completed.
Third phase of the programme
Dr Bharati Pravin Pawar, Union Minister of State for Health and Family Welfare launched the third phase of Thalassemia Bal Sewa Yojana of the Health Ministry which is being supported by Coal India Limited as part of their Corporate Social Responsibility (CSR) initiative to commemorate World Thalassemia Day, in Delhi in May last year. The Thalassemia Bal Sewa Yojana Portal was also launched on the occasion.
The Union Health Ministry has been implementing the Thalassemia Bal Sewa Yojana since 2017 under the National Health Mission. The Coal India CSR-funded Hematopoietic Stem Cell Transplant programme is aimed at providing a one-time cure opportunity to underprivileged Thalassemia patients who have a matched sibling donor but do not have the financial resources to cover the cost of the procedure. The programme has completed 356 bone marrow transplants for Thalassemia patients across 10 empanelled hospitals in India during its first two phases.
The third phase of the programme continues to provide financial assistance for a package cost of 10 lakhs per Hematopoietic Stem Cell Transplant, directly transferred from Coal India Ltd to the institutions performing the transplant. The programme benefits underprivileged Thalassemia patients and those with aplastic anemia, which is an irreversible condition that can be life-threatening without treatment.
Coal India Ltd has also created a web-portal to invite online applications.
Hospitals in collaboration
Currently 11 prominent hospitals across India are partnering in the programme. These include AIIMS, New Delhi; CMC Vellore; Kokilaben Dhirubhai Ambani Hospital, Mumbai; MCGM Hospital, Mumbai; PGIMER, Chandigarh; Rajiv Gandhi Cancer Institute, New Delhi; SGPGI, Lucknow; Narayana Hrudayalaya, Bangalore; CMC, Ludhiana and Tata Medical Centre, Kolkata among others.
The overall guiding framework is provided by Ministry of Health & Family Welfare, Govt. of India. Thalassemics India, an NGO working in the field of Thalassemia for the past 25 years is the coordinating partner.
The CSR initiative is making a difference in the lives of thalassemia patients and their families thus contributing towards building a healthier and more equitable society.
