Multi stakeholder approach will help to mobilise nationwide support for treatment of blood related disorders: Dr Bharati Pravin Pawar
Dr Bharati Pravin Pawar, Union Minister of State for Health and Family Welfare launched the third phase of Thalassemia Bal Sewa Yojana (TBSY) of the Health Ministry which is being supported by Coal India Limited (CIL) as part of their Corporate Social Responsibility (CSR) initiative to commemorate World Thalassemia Day. She also launched the Thalassemia Bal Sewa Yojana Portal.
Thalassemia is an inherited blood disorder that causes a body to have less hemoglobin than normal. The Union Health Ministry has been implementing the TBSY since 2017 under the National Health Mission (NHM) and had recently completed its second phase in March 2023. The Coal India CSR-funded Hematopoietic Stem Cell Transplant (HSCT) program is a unique initiative aimed at providing a one-time cure opportunity to underprivileged Thalassemia patients who have a matched sibling donor but do not have the financial resources to cover the cost of the procedure. The program has successfully completed 356 bone marrow transplants for Thalassemia patients across 10 empanelled hospitals in India during the two phases.
Dr Pawar stated that “it is important to enhance screening of the disease, create more awareness and counselling opportunities, and also increase treatment facilities to fight blood disorders such as Thalassemia and sickle cell disease”
Urging various stakeholders to come forward and lend a helping hand for strengthening the fight against blood related disorders, she stated that “Multi stakeholder approach will help to mobilise nationwide support for awareness and treatment for blood related disorders.”
Appreciating the efforts of partner Ministries and other stakeholders like CIL, she encouraged them to continue their efforts towards removing stigmas and misconceptions associated with such hereditary diseases and generate more awareness to address the knowledge gap surrounding sickle cell disease. She congratulated CIL and Thalassemics India for joining the Union Health Ministry in launching the third phase of TBSY.
Dr Pawar also released the Standard Treatment Workflow for Sickle Cell Disease on the occasion. This has been developed by ICMR. The Union Minister further highlighted the need to take advantage of various initiatives of the Union Government for treatment of diseases like sickle cell anemia such as the e-Raktkosh portal for blood transfusion requirements and the network of over 1.5 lakh Health and Wellness Centres for treatment and diagnostic care.
Rajesh Bhushan, Secretary (HFW) noted that TBSY looks at the treatment aspects of sickle cell disease. He emphasized on the need for bringing the disease under the health systems approach and focus on counselling and other aspects as well. He also highlighted the need for bringing in multiple stakeholders under the initiative to spread awareness and provide counselling. He further informed that the Union Health Ministry is working on increasing the facilities for providing tertiary care to sickle cell patients across the country.
Anil Kumar Jha, Secretary (MoTA) called the inauguration of third phase of the program an important milestone towards eradicating the disease completely. He urged all stakeholders to come together and include other public and private sector organisations towards creating state-of-the-art infrastructure for treatment of sickle cell disease.
Dr Rajiv Bahl, Secretary (DHR) stated that Thalassemia is a preventable disease if screened and treated early. He highlighted the need to increase capacity for bone marrow transplants and noted that ICMR is working towards meeting this capacity through the support of organizations like CIL.
The third phase of the program will continue to provide financial assistance for a package cost of 10 lakhs per HSCT, directly transferred from CIL to the institutions performing HSCT. The program will benefit underprivileged thalassemia patients and those with aplastic anemia, which is an irreversible condition that can be life-threatening without treatment. The program has empaneled 10 reputed hospitals across India, including AIIMS, New Delhi; CMC Vellore; Kokilaben Dhirubhai Ambani Hospital, Mumbai; MCGM Hospital, Mumbai; PGIMER, Chandigarh; Rajiv Gandhi Cancer Institute, New Delhi; SGPGI, Lucknow; Narayana Hrudayalaya, Bangalore; CMC, Ludhiana and Tata Medical Centre, Kolkata among others.
CIL has created a web-portal to empower online applications for the conspire. Patients will be able to get to the development of their application from enrollment to closure in real-time through the entry. The entrance is being propelled alongside the 3rd stage of the scheme. The program is an excellent example of a successful CSR initiative that is making a real difference in the lives of thalassemia patients and their families with hope that the third phase of the scheme will continue to bring hope and relief to thalassemia patients and their families, and contribute towards building a healthier and more equitable society.