Thalassemics India Hosts Critical Meeting to Discuss Thalassemia Prevention and Treatment Initiatives
New Delhi: Thalassemics India, under the leadership of Mrs. Shobha Tuli, organized a significant meeting at the Secretary Office, 156 A, Nirman Bhawan, New Delhi. The meeting was convened to address key issues related to the prevention and treatment of Thalassemia in India.
The meeting was attended by several prominent figures, including:
– Health Secretary, Sri Apurva Chandra
– Joint Secretary of Health, Mr. Deepak Chopra
– Mrs. Shobha Tuli, President, Thalassemics India
– Dr. Tulika Seth, AIIMS
– Dr. Madhulika Kabra
– Ms. Vinita Srivastava, Advisor Health, Ministry of Tribal Affairs
– Dr. Prantar Chakrabarti
– Dr. Suman Jain
– Mr. Chandrakant Agarwal
– Mr. Vinay Shetty, Mumbai
– Dr. Anupam Sachdeva
– Dr. V.K. Khanna, Delhi
– Mr. Ravinder Dudeja, Faridabad
During the meeting, the following subjects were discussed in detail:
1. *Availability of Safe Blood*: Ensuring the availability of safe blood for everyone across the country.
2. *Prevention of Thalassemia*: Emphasizing the importance of antenatal screening for Thalassemia.
3. *National Patient Registry*: The necessity of a national registry to accurately track the number of Thalassemia patients.
4. *Disability Card Accessibility*: Addressing the issue of the unavailability of disability cards in many states, despite the Central Government’s approval.
5. *Ayushman Bharat Scheme*: Providing medicines and blood transfusions to all Thalassemia patients under the Ayushman Bharat scheme.
A significant portion of the discussion was dedicated to item no.2, the implementation of mandatory HbA2 testing in antenatal profiles. Participants were encouraged to submit proposals for the Prevention scheme. As part of this initiative, TSCS Hyderabad has sent detailed information to aid in the formulation of a Government Order (GO) to mandate HbA2 testing for every pregnant woman in their first trimester.
Mr. Chandrakant Agarwal, President of TSCS, Hyderabad, expressed gratitude for the opportunity to discuss this vital preventive measure. He shared a draft bill, emphasizing the importance of this step in preventing Thalassemia births. He highlighted the success in Mahabubnagar district of Telangana, which has been almost Thalassemia-free since 2022.
Thalassemics India remains committed to raising awareness and building capacity for the prevention of hemoglobinopathies, including Thalassemia and various hemoglobin disorders, at district hospital levels and below.