admin
India
healthysoch
New Delhi, December 22, 2023:
In an ongoing session of the Rajya Sabha recently, Member of Parliament Ryaga Krishnaiah recently brought attention to the critical issue of thalassemia awareness in India. As the unstarred question, the parliamentarian directed a series of questions to the Union Minister of Health and Family Welfare, seeking insights into the government’s initiatives and strategies to address the lack of awareness surrounding thalassemia in the country.
Among the specific inquiries were:
- The steps taken to enhance awareness about thalassemia and its prevalence in India.
- Plans, if any, to introduce a national thalassemia screening programmeme akin to the existing programmeme for sickle cell anaemia.
- Details of the proposed national thalassemia screening programme, if any, are in the works.
- Reasons behind the absence of such a programme, if applicable.
- Measures to foster research and development of new treatments and therapies for thalassemia.
Responding to these queries, Prof. S.P. Singh Baghel, the Minister of State in the Ministry of Health and Family Welfare, shared valuable insights based on data from the Indian Council of Medical Research (ICMR), New Delhi. According to ICMR estimates, approximately 7,500 to 12,000 children with beta-thalassemia are born every year in India. Thalassemia is classified as one of the inherited disorders of red blood cells, falling under the category of hemoglobinopathies.
The minister emphasised that the primary responsibility for managing thalassemia, along with raising awareness, lies with the respective state governments. However, under the National Health Mission (NHM), support is provided to states and UTs to strengthen their healthcare systems, including the prevention and management of thalassemia at public healthcare facilities. This support extends to low-income patients based on proposals submitted by the states and UTs in their programme implementation plans.
Under NHM, comprehensive guidelines on the prevention and control of hemoglobinopathies in India—thalassemia, sickle cell disease, and other variant hemoglobinopathies—have been shared to assist the states and UTs in managing hemoglobinopathies, including thalassemia. These guidelines provide support for the screening of hemoglobinopathies and detail strategies for thalassemia disease management.
Additionally, the Ministry of Health & Family Welfare, in association with Coal India Limited (CIL), is implementing the Thalassemia Bal Sewa Yojana (TBSY). This scheme offers financial assistance up to Rs. 10 lakhs to eligible patients for bone marrow transplants (BMT) from CIL CSR funds. The scheme provides for BMT in 11 prominent hospitals across the country.
Furthermore, the ICMR National Institute of Immunohaematology (NIIH) and the National Institute of Research in Tribal Health (NIRTH) are actively engaged in research related to hemoglobinopathies, including thalassemia. ICMR-NIRTH has conducted various field-based studies on the occurrence of beta thalassemia in tribal communities, validated a point-of-care device (Gazelle) for the diagnosis of beta thalassemia, and is involved in diagnosing beta thalassemia in referral cases from hospitals.
This comprehensive approach by the government aims to raise awareness, promote prevention, and enhance treatment modalities for thalassemia, contributing to the overall well-being of affected individuals and communities.
Highlighting great significance concerning thalassemia patients, Anubha Taneja Mukherjee, Member Secretary, Thalassemia Patients Advocacy Group (TPAG) commented, “We are glad the question regarding Thalassemia was raised, but we would welcome additional details on the government’s strategy for thalassemia prevention and ensuring safe blood during transfusion. We seek clarity on the government’s strategy for ensuring blood safety and thalassemia prevention, akin to the SCD elimination plan. Like ‘one nation, one GST,’ we advocate for ‘one nation, one blood safety standard.’ Unfortunately, India bears the unwelcome title of the world’s thalassemia capital, with 10,000 to 20,000 new patients being added annually. The fight against thalassemia demands a collective, nationwide effort. While progress has been made, the journey ahead requires unity across healthcare, communities, policymakers, civil society, and the public.
According to Dr Anupam Sachdeva , Member of the committee formed by Ministry of Tribal Affairs (MOTA) for Sickle Cell Screening Project , Vo chair Sickle cell disease committee of International Pediatric Association and Chairman Pediatric hematology oncology and transplantation , Sir Ganga Ram Hospital ”
There is no doubt in our mind that there should be a universal screening Sickle Cell disease program combined for all hemoglobinopathies. The MOTA took a lead that is why Sickle has come first otherwise it should be a combined program. The equipment for screening is quite similar.”
healthysoch
HealthySoch
