World Thalassemia Day: Challenges amidst COVID-19

May 8, 2020 - To mark World Thalassemia Day, leaders from across the healthcare sector and the Government of India came together to discuss challenges and the way forward for blood donation, availability of transportation and transfusion facilities for thalassemics in a webinar held on May 8. The webinar was organised by ASSOCHAM in collaboration with Thalassemics India, Thalassemia Patients Advocacy Group, and SPAG, a leading healthcare communications firm.

From availability of blood in blood banks to availability of transportation and transfusion facilities, there are multiple challenges being faced by these patients in the wake of this pandemic. Dr Prabodh Seth, Joint Secretary, Department of Empowerment of Persons with Disabilities, Ministry of Social Justice & Empowerment during his keynote address highlighted the guidelines that have been issued to support the thalassemics. “Blood donation and transfusion are crucial and essential services especially for thalassemics. COVID-19 has affected the delivery of this service for thalassemia patients. The government has actively been taking steps to ensure they aren’t ignored amidst this pandemic,” he said.

There are nearly two lakh people in India who are blood transfusion dependent patients of thalassemia major. They are facing unprecedented challenges due to the situation arising out of the COVID -19 pandemic. The discussion focussed on the role of parents and parent organisations alongside the road ahead for making blood safer. It was highlighted that the need of the hour was to build a thalassemia management plan for crisis situations moving forward.

“We are taking active measures to ensure that not just facilities are provided but we work towards prevention as well. Counselling and testing are important. Now is the time we should take care of this and learn from the challenges faced during the COVID-19 pandemic,” said Vinita Srivastava, National Senior Consultant & Coordinator - Blood Cell, Ministry of Health & Family Welfare. “We released guidelines on April 24 as well emphasising upon no discrimination within organisations as well and right to equality with dignity,” added T D Dhariyal, Former State Commissioner for Persons with Disabilities, Govt. of NCT of Delhi. Shobha Tuli, Secretary, Thalassemics India, Dr. Androulla Eleftheriou, Executive Director, Thalassemia International Federation, Cyprus and Mr. Jaya Bharath Reddy, Head - Molecular & Blood Safety Solutions, Roche Diagnostics India were part of the panel as well.

Dr. Sunil Gupta, Director (National Blood Transfusion Council) & Addl DGHS , NACO from the Ministry of Health & Family Welfare concluded the session with a special address where he stated, “We face a challenge with management of demand and supply regarding blood too. So many times blood is donated but it cannot be stored and it sometimes goes waste because the demand is not managed. These are challenges we are actively working towards overcoming and developing systems to ensuring safety in this process.”