TSCS (Thalassemia Sickle Cell Society) is on a mission to make India Thalassemia Free nation says Dr. Chandrakant Agarwal, President, Thalassemia Sickle Cell Society.
Headquartered in Hyderabad, Thalassemia and Sickle Cell Society (TSCS) is a registered non-profit, non-governmental organization founded in 1998 representing mainly by a small group of patient’s parents, doctors, well-wishers, philanthropists, to provide the best treatment and management to patients suffering from Thalassemia and Sickle Cell Anemia. With the objective of helping all Thalassemia and Sickle Cell Anemia affected children, TSCS has established, well-maintained transfusion centre, high-quality blood centre, modern diagnostic laboratory, and advanced research centre under one roof to support more than 3500+ registered patients for the past 25 years.
1. Can you provide a brief overview of the Thalassemia Sickle Cell Society and its mission?
The Thalassemia Sickle Cell Society (TSCS) is dedicated to supporting children afflicted with thalassemia and sickle cell disease. They provide essential services such as blood transfusions, operate a blood bank and diagnostic center, and have collaborated with medical institutions like Bhagwan Mahaveer Jain hospital, Narayan Hurdayalaya, Sankalp Foundation Bengaluru, Electronic Mart India Ltd and other philanthropists, corporate bodies under their CSR initiative for bone marrow transplants. TSCS aims to eliminate these genetic blood disorders by promoting awareness and offering comprehensive medical care. It is a massive initiative serving the most neglected, almost unknown genetic blood disorder. It has taken more than two decades of selfless work by dedicated doctors, parents, and donors to reach this stage.
2. What are the key objectives and goals of the society in supporting individuals and families affected by thalassemia and sickle cell disease?
The society’s key objectives and goals revolve around assisting individuals and families affected by thalassemia and sickle cell disease. Our primary mission is to make the nation and Telangana thalassemia-free through mandatory HbA2 testing for pregnant women. TSCS strives to provide the best possible medical services to ensure the survival of affected children and create a supportive environment for their well-being.
3. How does the society raise awareness about thalassemia and sickle cell disease within the community and among healthcare professionals?
TSCS raises awareness about thalassemia and sickle cell disease through various channels. When a child is born with these disorders, medical professionals refer them to the society for specialized care. TSCS has been conducting free testing services in major government maternity hospitals and organizes blood donation camps in schools, colleges, and during festive occasions. We have been effectively optimising social and print media to collaborate with other agencies and spread awareness.
4. In what ways the board members or the senior management providing services to the TSCS?
The key board members of TSCS are Dr. Chandrakant Agarwal, President, Ms Ratnavali Kottapalli, Vice-President, Dr Suman Jain, Secretary & CEO – TSCS & Mr. Aleem Baig, Joint Secretary. The society’s board members and senior management play a vital role in overseeing the operations, make strategic decisions, and ensuring effective implementation of programs and initiatives, responsible for collecting of blood through donation camps to support individuals affected by thalassemia and sickle cell disease.
5. What initiatives does the society undertake to advocate for improved healthcare access and quality for thalassemia and sickle cell patients?
The list is endless, over the last 25 years, we have not left any stone unturned in spreading awareness. Recently on a single day in Hyderabad, we have been able to collect more than 1500 blood units that were donated by generous donors. TSCS has received many accolades and awards for its selfless services. In All India Industrial Exhibition in Hyderabad a unique campaign was launched for more than 40 days continuously spreading awareness to eradicate Thalassemia. “Red the City” a marathon was launched at necklace road in Hyderabad long back and people still have those red T-Shirts spreading the message for blood donation and prevention of thalassemia.
6. In what ways does the society collaborates with other organizations, healthcare providers, and researchers to advance knowledge and treatment options for thalassemia and sickle cell disease?
TSCS collaborates extensively with other organizations, healthcare providers, and researchers to advance knowledge and treatment options for thalassemia and sickle cell disease. We have partnered with institutions like NGO’s, maternity hospitals, healthcare professionals, local bodies, and primary health centers to ensure comprehensive care and treatment for affected individuals.
A thalassemia patient survives purely on blood donated by a donor and the collaboration starts right from there till it continues to flow in our blood. We are proud to say that we get help from unexpected quarters and challenges spur us to perform even better. Our partners in blood donation facilitate blood donation, donors help in whichever way they can and we are grateful to them. Every thalassemic child is grateful to them.
7. How does the society engage with the affected community and encourage participation in its activities and programs?
TSCS engages with the affected community by actively involving patient groups and volunteers in their activities and programs. They encourage participation from families, friends, and associates of affected individuals, as they possess first-hand experience and understanding of the challenges faced. This community engagement ensures a collective effort in fighting against thalassemia and sickle cell disease.
8. Can you share any success stories or notable achievements of the society in improving the lives of individuals with thalassemia and sickle cell disease?
The society has achieved notable success in improving the lives of individuals with thalassemia and sickle cell disease. They are the largest NGO in India serving 3500+ thalassemia patients daily and have successfully completed 70 bone marrow transplantations. TSCS has received numerous awards from the Government of Telangana, acknowledging their selfless service and significant contributions.
9. What are the major challenges or obstacles the society faces in achieving its objectives, and how does it address them?
TSCS did face several challenges in achieving its objectives, primarily due to the lack of awareness and knowledge about thalassemia and sickle cell disease. The late identification of these disorders in children adds to the difficulties. However, TSCS addresses these challenges by providing free medical services, spreading awareness through various campaigns, and leveraging the support of government schemes, generous donors, and corporate entities.
10. What kind of support does TSCS get from government (Govt of Telangana & Govt of India) for Thalassemia patient’s treatment? If yes, in what ways?
TSCS receives support from the Government of Telangana and the Government of India for the treatment of thalassemia patients. The government’s “Aarogyashree” scheme funds the treatment of eligible children, and voluntary donations from philanthropists, as well as support from pharmaceutical companies and corporate entities through their CSR initiatives, further contribute to the cause.
11. In your opinion, what are the most important steps that should be taken to raise awareness and improve support for individuals with thalassemia and sickle cell disease?
Thalassemia is a genetic related disease, which can be identified and prevented at the pre-birth stage only. The only thing everyone should do is to go for an HbA2 test in their first trimester of pregnancy. With that, we can reduce the cases of Thalassemia very easily in the upcoming days.
12. Is there anything else you would like to share about Thalassemia Sickle Cell Society or any future plans or goals?
Our only aim or goal is to request the Government of Telangana to pass a G.O making HbA2 test mandatory in all the hospitals, which can totally eradicate the Thalassemia disease in the state. Also, after that we will request the Government of India, to pass a bill on making HbA2 test mandatory in the whole country as well. In the days to come we believe TSCS will play an instrumental role in making India – Thalassemia Free Nation.
