Thalassemia is a genetic blood disorder that affects millions of people worldwide, especially in countries like India where the disease is endemic. Patients with thalassemia require lifelong blood transfusions and other supportive care, and the cost of treatment can be a burden for many families. This is where the Thalassaemia and Sickle Cell Society (TSCS) comes in - as a non-profit, non-governmental organisation founded by a small group of patients' parents, doctors, well-wishers, and philanthropists. TSCS provides essential treatment and management for patients suffering from thalassemia and sickle cell anemia.
Since its inception in 1998 in Telangana, TSCS has been at the forefront of improving its services provided to patients in accordance with the latest developments in treatment, management, and prevention, and has over 3,500 registered patients. The organisation also collaborates with government agencies, policymakers, and other stakeholders to advocate for policies that benefit patients and promote prevention efforts.
In this interview, with TheCSRUniverse, Mr. Chandrakant Agarwal, President, Thalassemia Sickle Cell Society, delves deeper into the organisation's mission, accomplishments, and future goals. He shares how TSCS incorporates the latest trends and technology in its work, using digitization to improve patient services. The organisation stays informed about the latest innovations by sharing research data with partners worldwide and publishing in medical journals. He also sheds light on the pressing research questions in the field, collaborative mechanisms, latest trends and innovations globally, and more.
Scroll down to read the full interview.
Q. Can you tell us about the work that TSCS does and the services that you provide to thalassemia and sickle cell patients in India? Please share the scale and impact of your initiatives.
A.Thalassemia & Sickle Cell Society (TSCS) Hyderabad, as the name itself suggests serves thalassemia & sickle cell afflicted children by providing blood transfusion services to all the registered children (more than 3500), running a blood bank, diagnostic center, Kamala Hospital & Research Centre. And the PERMANENT cure for thalassemia – BMT – Bone Marrow Transplant in collaboration with BhagwanMahaveerjain hospital, Narayan Hurdayalaya, Sankalpa Foundation Bengaluru, Electronic Mart India Ltd and other philanthropists, corporate bodies under their CSR initiative. 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.
Q. What are your long-term goals and how does the organisation plan to achieve those goals?
A.Thalassemia is a genetic blood disorder that can be prevented by a simple HbA2 test for a pregnant woman, due to a lack of awareness about this disorder it continues to multiply. Our only mission and goal is to make Telangana and adjacent region thalassemia free, for which we are campaigning to make the above mentioned test mandatory to totally eradicate this scourge, while providing the best possible medical services to the afflicted children for their survival.
Q. What challenges do you face in providing care to patients? What specific challenges do thalassemia and sickle cell patients from marginalised communities face and how are they addressed?
A.The primary obstacle is the lack of awareness and knowledge about the disease, resulting in its late identification in children. Families with multiple children affected by the disorder face unimaginable hardships. However, TSCS provides essential services to these families, free of cost, thanks to support from the society, the Aarogyashree Scheme of the government, and generous donors. From medicines to treatment, transfusions, and meals, TSCS covers everything. The marginalised communities, such as the scheduled tribes of Khammam or the most neglected villages of Mahboob Nagar or Kurnool Districts, are the most significant beneficiaries of these services.
Q. What are some of the myths surrounding the two diseases, and how do you raise awareness among the general public and reduce the stigma associated with these diseases?
A.When a child is born with thalassemia, it is often not identified until later stages, leaving the family to search for a cure for their suffering child. When medical staff do identify the disorder, they refer the family to TSCS, who provide quality blood transfusions and medicine to ensure the child's survival. TSCS also screens relatives for the genetic disorder and provides guidance on its prevention. To spread awareness and prevent the disorder, TSCS volunteers provide free testing services in major government maternity hospitals, run blood donation camps in schools, colleges, and during festive occasions, and use social and print media to raise awareness. TSCS has also collaborated with other agencies to run massive awareness campaigns.
Q. What’s been your role in promoting early detection, prevention, and management of thalassemia and sickle cell anemia in India?
A.TSCS registered in 1998, is serving more than 3500 registered patients, which is in itself is a global first, it is spreading its wings in all unrepresented areas and collaborating with like-minded societies, NGOs and medical establishments, primary health centers, and governmental and local bodies for spreading the awareness, detection, and management of thalassemia.
Q. What role do you play in building the capacity of healthcare professionals and improving access to quality care for patients in India?
A.Our experience of more than two decades in the detection, management, and cure of thalassemia gives us a unique advantage in serving the afflicted. Our expertise is shared with all the NGOs, and organisations serving the thalassemic child, while we learn from them, and it is a global effort, we collaborate globally for its cure. A dedicated research center strives to achieve the breakthrough in its treatment. We run training camps for healthcare professionals in neighbouring districts.
Q. How does TSCS collaborate with other organisations, such as NGOs and corporates, to enhance patients' lives? Have there been any challenges on that front, and what are your expectations from your partners?
A.Without collaboration with other organisations, NGOs and corporates, it is impossible to serve the thalassemic child. We are collaborating with Narayan Hrudayalaya, Sankalp Foundation for BMT, and Maternity Hospitals, health care professionals, local bodies, primary health centers, etc., for every activity undertaken by us for treatment of thalassemia. A thalassemia patient survives purely on blood donated by a donor, the collaboration starts right from there and 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.
Q. Can you tell us about some of the most innovative or successful initiatives that TSCS has undertaken to address the issues faced by thalassemia and sickle cell patients in India?
A.For the past 25 years, TSCS has been dedicated to spreading awareness about thalassemia and sickle cell anemia. We have organised numerous campaigns and events, such as a recent blood donation drive in Hyderabad that saw more than 1,500 donors participating. Our efforts have not gone unnoticed, and we have received many accolades and awards for our selfless service. The media has also played a prominent role in spreading the word about our cause. For example, during the All India Industrial Exhibition in Hyderabad, we launched a unique campaign to raise awareness for over 40 consecutive days. Another successful event we organised was "Red the City," a marathon held at Necklace Road in Hyderabad, which saw participants wearing red T-shirts to promote blood donation and prevent thalassemia.
Q. What's the role of patient groups and volunteers in supporting TSCS? Also, how do you collaborate with healthcare professionals to ensure quality care for the patients?
A.Patient groups and volunteers are the backbones of TSCS. The suffering caused by this disease is known only to the families of affected children, and they, along with their loved ones, friends, and associates, are instrumental in our fight against it. These families are the founders of our organisation, and with the support of medical professionals, we act as a catalyst for quality care by sharing our experience with all concerned parties.
Q. What are some of the most pressing research questions in the field of thalassemia and sickle cell anemia and how does TSCS support research efforts in this area?
A.The only known cure for thalassemia is bone marrow transplant (BMT), which is limited due to the difficulty of finding an HLA match. Therefore, prevention is the most effective solution, as demonstrated by Cyprus, which has successfully eradicated the disease from their country. We are following in their footsteps and striving to eradicate thalassemia permanently through mandatory HbA2 testing, which we are campaigning for the government to implement.
Q. Can you tell us about the funding sources for your work, and how do you ensure financial sustainability for the organisation?
A.Primarily the “Aarogyashree” scheme of the Government funds the treatment of the eligible child and voluntary donations from philanthropists take care of the rest. In addition, pharma companies subsidize their supplies, and corporates in their CSR initiatives fund the treatment of eligible patients through BMT. M/s. Bajaj Electronics is one of them.
Q. How can CSR initiatives and partnerships assist thalassemia and sickle cell patients in India, and what support does TSCS require from CSR partners in key areas to achieve its goals and improve patients' lives?
A.Many thalassemic patients have been given the gift of life through partnerships and corporate social responsibility (CSR) initiatives. The survival of every child with thalassemia is a testament to the generous support of society at large. CSR initiatives can offer even greater assistance to those in need by reaching underserved areas that lack sufficient funding.
Q. What are the latest trends and innovations in thalassemia and sickle cell anemia and how does TSCS stay informed about them? How do you use technology and digital platforms to enhance patients' lives?
A.Gene Therapy is the current buzzword in the treatment of Thalassemia. We have collaborated with partners in the USA, Europe, Italy, and Taiwan to share our research data as needed, and our own team of researchers have published their findings in reputable medical journals. Our all services are upgraded with the latest technology available, be it blood banks, hospitals, research, and diagnostic centers. Digitization has enabled us to serve the child better.
Q. How does TSCS engage with government agencies and policymakers to advocate for policies that benefit patients?
A.TSCS regularly invites Government Health Officials, District Collectors, State Ministers, prominent personalities, decision-makers, and all persons who matter at its centres, and brief them about the activities of the society. TSCS is an open book, all are welcome to be part of this movement for the eradication of Thalassemia.
