**Executive Summary**
This document is a response to Unstarred Question No. 2374 regarding thalassemia patients and blood transfusion safety, to be answered on February 13th, 2026. It provides information on thalassemia patient data, government support, and measures for blood transfusion safety. States/UTs are primarily responsible for the management of Thalassemia.
**Key Points / Main Content**
* **Data Collection and Monitoring:**
* A thalassemia module was added to the Sickle Cell Portal in 2023 for States to enter records of thalassemia patients.
* Data on thalassemia screening is regularly updated on the National Portal.
* As of 09.02.2026, 33,44,507 individuals have been screened, with 11,274 identified as diseased and 94,542 as carriers.
* **Government Support and Initiatives:**
* The primary responsibility of thalassemia management lies with State/UT Governments.
* The National Health Mission (NHM) supports States/UTs in strengthening their healthcare systems for thalassemia management. This support includes Blood Bank facilities, Day Care Centres, medicines, lab services, IEC activities, and training.
* The ICMR-National Institute of Immunohaematology (NIIH) and a Centre for Research Management and Control of Hemoglobinopathies support research, diagnostics, transfusion, and capacity building.
* The Thalassemia Bal Sewa Yojana (TBSY) provides financial assistance up to Rs. 10 lakh for Bone Marrow Transplants (BMT) in 17 empanelled hospitals.
* **Blood Transfusion Safety:**
* Data on deaths from HIV-infected blood transfusions among thalassemia patients is not centrally maintained.
* Directions have been issued to all States/UTs to ensure blood centres follow statutory provisions and national guidelines, including those issued by the National Blood Transfusion Council (NBTC).
* Comprehensive guidelines on Prevention and Control of Hemoglobinopathies in India were shared to assist States/UTs for management of Haemoglobinopathies including Thalassemia
**Impact Analysis**
**State/UT Governments:**
* **Impact:** Primary responsibility for the management of thalassemia and for raising awareness.
* **Action Required:** Implement programs and services for thalassemia management; submit proposals to the NHM to access support.
**Healthcare Providers:**
* **Impact:** Must adhere to national guidelines for blood transfusions and manage thalassemia patients.
* **Action Required:** Implement and follow blood transfusion safety protocols; adhere to the comprehensive guidelines for management of Thalassemia.
**Thalassemia Patients and Carriers:**
* **Impact:** Access to improved screening, management, and potential financial assistance for BMT.
* **Action Required:** Participate in screening programs, seek appropriate medical care, and explore eligibility for TBSY.
Key Entities Referenced
Ministry of Health and Family Welfare: The primary governmental body responsible for health-related matters, including Thalassemia management in India.
National Health Mission (NHM): A scheme that provides support to States/UTs to strengthen their healthcare system, including support for the prevention and management of Thalassemia.
Thalassemia Bal Sewa Yojana (TBSY): A scheme providing financial assistance for Bone Marrow Transplants (BMT) to eligible Thalassemia patients.
National Blood Transfusion Council (NBTC): Organization that issues guidelines and standards to ensure blood transfusion safety.
Chandrapur, Maharashtra: Location of the Centre for Research Management and Control of Hemoglobinopathies, which supports research, diagnostics, transfusion support and capacity building for Thalassemia.
GOVERNMENT OFINDIA
MINISTRYOFHEALTHAND FAMILYWELFARE
DEPARTMENT OFHEALTH AND FAMILYWELFARE
LOK SABHA
UNSTARREDQUESTION NO. 2374
TOBE ANSWERED ON 13thFEBRUARY,2026
THALASSEMIAPATIENTS AND BLOOD TRANSFUSION SAFETY
2374.MSKANGNARANAUT:
Will the Ministerof HEALTH AND FAMILYWELFAREbe pleasedtostate:
(a) the number of registered thalassemia patients in the country and the trends in prevalence
andmortalityduring the last five years;
(b) the current status of specialised infrastructure for thalassemia that has been established or
strengthened during the last five years;
(c) the number of deaths reported due to HIV-infected blood transfusions among thalassemia
patientsinthe country;
(d) the protocols and regulatory mechanisms in place to ensure the safety of blood
transfusions, including screening for HIV and other infections, particularly in view of the
requirementof frequent transfusions for thalassemia patients; and
(e)whether the Government hasundertaken anynationalstrategy or targeted interventionsfor
the prevention, early detection and long-term management of thalassemia and if so, the
detailsthereof?
ANSWER
THE MINISTER OFSTATE IN THE MINISTRYOFHEALTH AND FAMILY
WELFARE
(SMT. ANUPRIYAPATEL)
(a) to (e): In Sickle Cell Portal, thalassemia module was added in 2023 for the States to enter
the records of existing thalassemia patients in their States. Monitoring and follow up is done
andthe data of thalassemia for screening isenteredregularlyonthe National Portal.
As per data updated by States on national portal, out of 33,44,507 individuals screened for
Thalassemia, a total of 11,274 have been identified as diseased and 94,542 as carriers of
Thalassemia,ason 09.02.2026.
The primary responsibility of management of Thalassemia along with raising awareness lies
with the respective State/UTGovernments. However, underNational HealthMission (NHM),
support is provided to States/UTs to strengthen their healthcare system including support for
prevention andmanagementof Thalassemia at public healthcarefacilities, provision of Blood
Bank facilities, Day Care Centre, Medicines, Lab services, IEC activities and training of HR
etc. based on the proposals submitted by the States/UTs in their Programme Implementation
Plans.Under Department of Health Research, Indian Council of Medical Research (ICMR) has
established the ICMR-National Institute of Immunohaematology (NIIH) and a Centre for
Research Management and Control of Hemoglobinopathies in Chandrapur, Maharashtra
which supports research, diagnostics, transfusion support and capacity building for
thalassemia.
This Ministry, in association with Coal India Limited (CIL), is implementing a scheme
namely Thalassemia Bal Sewa Yojana (TBSY) wherein financial assistance up to Rs.10 lakh
is provided to eligible patients for Bone Marrow Transplants (BMT) from CIL Corporate
Social Responsibility (CSR) funds. This scheme provides for BMT in seventeen empanelled
hospitals spread across the country.
The data related to number of deaths reported due to HIV-infected blood transfusions among
thalassemia patients isnot maintainedcentrally.
To ensure the safety of patients sufferingfrom blooddisorders, directions have been issued to
allStates/UTs for the functioningof all Blood Centresin accordancewith applicablestatutory
provisions and national guidelines and standards issued from time to time by the National
Blood Transfusion Council (NBTC), including the National Standards for Blood Centres &
Blood Transfusion Services (2022), the Transfusion Medicine Technical Manual (2023),
External Quality Assessment Scheme (EQAS) Operational Guidelines (2024), Guideline for
Voluntary Blood Donation (2024) and the revised Donor Selection and Referral Guidelines
(2025), etc.
Comprehensive guidelines on Prevention and Control of Hemoglobinopathies in India-
Thalassemia & Sickle cell Disease and other variant Hemoglobins (2016) had been shared to
assist the States/UTs for management of Haemoglobinopathies including Thalassemia. The
guidelinesdetailthe strategiesfor managementof Thalassemia disease includingThalassemia
major(Blood transfusion therapy with packedred bloodcell, iron chelationfor iron overload,
monitoring and management of complication and psychological support etc.) and non
transfusion dependentThalassemia (NTDT) etc.
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