TSCS has built a model covering transfusion, diagnosis, counselling, and prevention. What are the key elements of this model, and what lessons can it offer for strengthening thalassemia care across India?
At the Thalassemia and Sickle Cell Society (TSCS) in Hyderabad, we set out to build a patient-centric model that brings almost every aspect of thalassemia care under one roof, and every service is provided free of cost. The model rests on four pillars.
- Comprehensive transfusion support. Patients receive safe, regular transfusions, including appropriately matched and specially processed blood wherever it is needed. This is backed by a well-organised blood centre and a strong network of voluntary donors.
- Advanced diagnosis and treatment. We offer a full range of diagnostic facilities, including HLA typing and MRI T2* to assess iron overload, along with essential medicines, investigations and specialist consultations.
- Counselling and family support. Patients and parents get ongoing medical, psychological and nutritional counselling to help them cope with the lifelong challenges of thalassemia.
- Prevention and awareness. We carry out systematic carrier screening, genetic counselling, prenatal diagnosis and community awareness, with a special focus on screening pregnant women in the first trimester.
Today, TSCS has 4,830 registered patients, and nearly 2,500 of them receive free regular transfusions. We have also supported 235 bone marrow transplants.
The biggest lesson from our experience is that thalassemia care has to go beyond blood transfusions. It needs a comprehensive and sustainable system that brings together treatment, prevention, research and social support. We believe this model can be replicated across India through partnerships between government hospitals, NGOs, healthcare professionals, corporate CSR initiatives and voluntary blood donor organisations.
Voluntary blood donation remains critical for patients who require regular transfusions. What are the biggest gaps in India’s blood-supply ecosystem for thalassemia care, and what needs to change at the system level?
Getting safe and adequate blood is one of the biggest hurdles in giving thalassemia patients uninterrupted care. Unlike most other patients, children with thalassemia need transfusions throughout their lives unless they receive a successful curative treatment.
The major gaps in India’s blood-supply ecosystem are an inadequate and inconsistent supply of voluntary donations, uneven availability of blood across regions, too little awareness about donating regularly, and limited access to appropriately matched blood.
To give you a sense of scale, TSCS needs roughly 100 units of blood every single day to meet our patients’ transfusion needs. That can only be met through sustained voluntary donation and a well-organised donor network. We have conducted and supported more than 4,000 voluntary blood donation drives, which shows what community participation and organised donor mobilisation can achieve.
At the system level, we need to:
- Build a strong, year-round voluntary blood donation movement, rather than relying mainly on emergency donation camps.
- Strengthen blood bank infrastructure, storage, transportation and inventory management.
- Promote extended antigen matching and make specially processed blood available to patients who need it.
- Develop a coordinated national network for blood donors and blood availability.
- Encourage educational institutions, corporates, NGOs and community organisations to hold regular voluntary donation drives.
Blood donation should become a sustained social responsibility, supported by public awareness, institutional commitment and sound government policy. Every thalassemia patient deserves timely access to safe blood, no matter their financial or geographical circumstances.
Carrier screening and prevention are central to reducing the future burden of thalassemia. Where are the biggest gaps in India’s current screening and counselling framework, and how can these be addressed at scale?
Prevention is the only sustainable way to reduce the future burden of thalassemia. Treatment helps patients live healthier, more productive lives, but preventing the birth of children with thalassemia major must be a major national priority.
The biggest gaps in India’s current screening framework are low awareness, limited access to carrier screening, the lack of systematic screening programmes in many areas, insufficient genetic counselling, and poor continuity between screening, diagnosis and follow-up.
We strongly advocate screening every pregnant woman in the first trimester using appropriate tests, including HbA2 estimation. If a woman is found to be a carrier, her partner should be screened too, followed by genetic counselling and prenatal diagnosis wherever indicated. Our work in Mahabubnagar district of Telangana, where we undertook a comprehensive screening and prevention initiative, shows the potential of a systematic, community-based approach.
To take prevention to scale, we propose the following:
- Make carrier screening widely accessible through government hospitals, primary health centres and maternal healthcare programmes.
- Integrate thalassemia screening into routine antenatal care, preferably in the first trimester.
- Offer genetic counselling to carrier couples in a sensitive, confidential and non-directive manner.
- Expand awareness programmes in schools, colleges and communities, including premarital awareness and voluntary screening.
- Set up a reliable referral system for confirmatory tests, prenatal diagnosis and appropriate medical guidance.
We firmly believe that the Government of India and state governments should consider a comprehensive national thalassemia prevention policy, backed by proper funding, monitoring and implementation. Our long-term vision is a Thalassemia-Free India by 2035, achieved through awareness, voluntary screening, informed reproductive choices and accessible diagnostic services.
With 4,830 registered patients and nearly 2,500 receiving free regular transfusions at TSCS, what are the operational and financial challenges involved in sustaining long-term transfusion-dependent care?
Providing lifelong, comprehensive and completely free treatment to thousands of thalassemia patients is a huge operational and financial responsibility. At TSCS, we have built an integrated healthcare facility run by a dedicated team of about 116 people, including doctors, nurses, laboratory technicians, counsellors and administrative staff. Our services cover regular blood transfusions, blood testing, iron chelation therapy, advanced investigations, counselling and other essential medical support.
The major challenges we face are:
- Financial sustainability. The recurring costs of blood collection, screening, processing, medicines, investigations, equipment, salaries and infrastructure add up to a substantial amount.
- Uninterrupted blood supply. Making sure adequate, safe and appropriately matched blood is available every day requires us to keep mobilising voluntary donors continuously.
- Managing iron overload. Patients who depend on lifelong transfusions need regular monitoring and affordable access to iron chelation medicines to prevent serious complications.
- Human resources and infrastructure. Running a specialised, round-the-clock healthcare system takes trained professionals, modern equipment and a constant focus on improving quality.
- Long-term patient support. As patients grow into adulthood, their medical, educational, psychological and social needs change as well.
We have been fortunate to receive support from philanthropic individuals, corporate CSR initiatives, organisations such as Coal India Limited, and other well-wishers. These partnerships have helped us provide free treatment and facilitate bone marrow transplants for eligible patients. Still, depending mainly on donations is not a sustainable long-term solution for the whole country. What we need is a robust public-private partnership model, predictable government funding, greater CSR participation, subsidised essential medicines and dedicated financial support for comprehensive thalassemia care.
Our goal is not just to keep transfusions going. We want every patient to receive quality treatment and dignity, and to have the chance to lead a healthy, productive life.
Bone marrow transplantation offers a potential curative pathway for eligible patients. What are the key barriers limiting wider access to transplantation in India?
Bone marrow transplantation (BMT), also known as hematopoietic stem cell transplantation, can offer a potential cure for many patients with thalassemia. Yet in India, a large number of eligible patients still cannot access this life-changing treatment. The major barriers are:
- High treatment costs. The cost of the transplant, hospitalisation, medicines, investigations and post-transplant care can be out of reach for many families.
- Availability of suitable donors. Finding a well-matched family donor is a major challenge, and alternative donor options are still limited in many centres.
- Limited specialised infrastructure. Transplantation needs highly specialised hospitals, trained multidisciplinary teams, advanced laboratory facilities and infection-control infrastructure.
- Lack of awareness and timely referral. Many families do not know that transplantation is a treatment option, and delays in referral can affect both eligibility and outcomes.
- Post-transplant complications and follow-up. Risks such as infections and graft-versus-host disease, among other complications, call for specialised monitoring and long-term follow-up.
- Geographical and financial inequalities. Patients in smaller towns and rural areas find it harder to reach transplant centres and to sustain care after they are discharged.
TSCS has helped facilitate 235 bone marrow transplants, largely with financial support from organisations such as Coal India Limited and EMIL. Our experience underlines how important it is to identify eligible patients early, evaluate donors on time and provide financial assistance.
Going forward, we need to expand the number of accredited transplant centres, strengthen public-sector transplant facilities, increase government and CSR funding, improve donor registries, and make sure families receive thorough counselling before they decide on treatment. BMT should become more accessible, more affordable and available closer to home, with proper medical evaluation and lifelong follow-up support for every patient.
Looking ahead, what should be the priorities for India’s thalassemia ecosystem?
India needs a comprehensive, long-term national strategy that gives equal weight to prevention, treatment, curative therapies, research and the quality of life of patients.