Seminar on the Policy Interventions for the Evolving Needs of Thalassemics in India, on 16th September,2017.


It is owing to the massive strides in the field of medicine and the relentless efforts of the government, that we are witnessing the start of a whole new era in the area of thalassemia and advocacy related to its various aspects. The recent inclusion of thalassemia in the list of disabilities under The Rights of Persons with Disabilities Act, 2016, has given an unprecedented boost to the spirit of thalassemics in India and the Supreme Courts interpretation of thalassemia as a benchmark disability for the purpose of admission to a medical seat has further empowered the patients of thalassemia to dream and do bigger for themselves and for the country. In this background, a group of seven adult thalassemics accomplished in the field of IT, Education, Law & Psychology, came together to form the Thalassemia Patients Advocacy Group in June 2017 under the umbrella of Thalassemics India.

In recognition of the fact that there remains a considerable ground to cover though particularly with regard to the Availability and Safety of blood; Management & Care of Thalassemia; and Prevention of Thalassemia the Group is ready to take up advocacy around these important issues and organized its first half-day long Seminar on the Policy Interventions for the Evolving Needs of Thalassemics in India, on 16th September 2017 at Tamarind, India Habitat Centre Lodhi Road, New Delhi. The programme was held from 9.00am. The Seminar also marked the Launch of Thalassemia Patients Advocacy Group, which is the first of its kind in the world.

On behalf of Thalassemics India, the welcome address was given by Mrs. Shobha Tuli, Secretary - Thalassemics India, whereas Mr. Deepak Chopra, President-Thalassemics India, along with the other dignitaries officially launched the Thalassemia Patients Advocacy Group. Thalassemics India is the umbrella organisation for the PAG, which has been doing pioneering work for the cause of Thalassemia and thalassemics in India, for more than 30 years. The session also addressed the demands of Thalassemics for safe blood, Blood on call facility without replacement, NAT screening, pre-storage filtered blood, free medicines for Iron Chelation and request for registration of thalassemia patients who have crossed the count of 2000 in Delhi NCR region. The Hon ble Deputy Chief minister of Delhi, Mr. Manish Sisodia, was the chief guest for the occasion, who graced the event with his presence and emphasised the need for initiating and creating awareness and supporting the needs of thalassemics. He promised to ensure that the information on thalassemia would be disseminated in all the schools in Delhi. He also appreciated and lauded the efforts of the Thalassemia Patients Advocacy Group and Thalassemics India and assured to organise prevention programmes and meetings in collaboration with the state health department and Delhi NHM. He further discussed idea of expediting the process of taking things ahead.

The session was also attended by Shri B.N. Satpathy, Principal Advisor, NITI Aayog. Shri Satpathy committed complete support to the Patients Advocacy Group and stressed on the need for the development of a National Policy for Thalassemia along with development of a Strategic Plan for the same.

Further, Ms. Vinita Srivastava, National Consultant, Blood Cell (NHM), shared the initiatives for prevention and management of Thalassemia across the country. She also took the opportunity to suggest the formulation of an advisory committee for responding to the needs of thalassemics in Delhi. The chief guest Shri Manish Sisodia, assured her of the necessary support and action, at his end.

The Special Guest for the occasion was Dr. Kamlesh Kumar Pandey, The Chief Commissioner for Persons with Disabilities, who assured the support of his Department and stressed on the need for eliminating stereotypes and sensitizing the society towards the needs of thalassemia patients.

The seminar was also attended by Dr. Vanshree, Director - Blood Bank, Indian Red Cross Society, who addressed the session on Availability and quality of blood for Thalassemia patients. She accepted the importance of safe and NAT Tested blood for thalassemics by seeking support through the medium of Corporate Social Responsibility and the Central and the State government.