Hon’ble Minister of Social Justice & Empowerment, Dr. Virendra Kumar inaugurated the 10th National thalassemia Conference Saturday, 4th February 2023 at Swaran Jayanti Auditorium, LHMC, and Associated Hospitals.
National Thalassemia Welfare Society organized the “10th National Thalassemia Conference” in association with the Department of Paediatrics, Kalawati Saran Children’s Hospital, New Delhi & Lady Hardinge Medical College, and Associated Hospitals in New Delhi. Over 1000 doctors and patients/parents have registered to participate. Mr. Hansraj Ahir chairperson National Commission for Backward Classes (NCBC) Former Hon’ble MoS, Home affairs GOI & Mrs. Vinita Srivastava Advisor Health Ministry of Tribal Affairs GOI were Guests of Honor.
Chief Guest Hon’ble minister of Health Dr. Virendra Kumar said that our Govt has included Thalassemia and Sickle Cell Disease in the list of disabilities in RPWD Act 2016. Many Thalassemic has taken admitted to higher education by taking benefits under RPWD Act. He said we will consider appropriate steps on issues raised by Dr. Arora like reservations in employment, and health & life insurance for thalassemic.
Mr. Hansraj Ahir chairperson of NCBC assured that he along with Hon’ble Minister will take up with PMO the issue of waiving GST on medicines and equipment required for the treatment of thalassemia.
Thalassemia is the most common inherited blood disorder in India. 4% population of India is thalassemia carriers and Over 10,000 new thalassemia majors are born annually. Survival of thalassemic depends upon lifelong repeated blood transfusion and costly medicine. The cost of therapy is Rs 50,000- 2,00,000 per annum.
The theme of the conference is “Care & cure in 2023”. Recently many developments have taken place toward a permanent cure and transfusion-free thalassemia. Gene therapy has shown promising results and many patients have been cured permanently. Dr. Sandeep Soni Associate Professor of Pediatrics, Division of SCT, UCSF, San Francisco, CA, USA who himself has been involved in Gene therapy in thalassemic has especially enlightened us on this new therapy.
Dr. Maria Capellini from Italy who has been involved in the research of the new molecule/drug Luspatercept said that Luspatercept can reduce the transfusion requirement from 50 to 67 % and educated us on a new molecule. Besides making the life of thalassemia comfortable This will not only save lots of blood units but also huge expenses on chelation therapy.
Thalassemia International Federation, executive Director Dr. Androulla Eleftheriou gave tips on strengthening the thalassemia advocacy groups in the country.
National Thalassemia Welfare Society formed in 1991 by patients, parents, doctors, and well-wishers is dedicated to the care & control of Thalassemia. The primary objectives of Society are to create facilities for the optimum treatment of the disease & to educate families & doctors on the latest development.
Dr. JS Arora General Secretary National Thalassemia Welfare Society exhorted the patients and doctors to be aware of new developments in the field so that thalassemia can live a near normal life. He urged the Hon’ble Minister of Social Justice and Empowerment to take necessary steps so that thalassemia is not deprived of the benefits of the RPWD Act 2016
