To mark the world thalassemia day during the testing times of coronavirus pandemic, leaders from healthcare sector and the government of India came together through a webinar to discuss challenges and the way forward for thalassemia patients.
During the webinar, the leaders discussed the blood donation, availability of transportation, and transfusion facilities for thalassemics in a webinar held on May 8.
Thalassemia is a blood disease that causes increased destruction (haemolysis) of the red blood cells. There are various severities of the inherited blood disorder from thalassemia major to thalassemia.
From the availability of blood in blood banks to the availability of transportation and transfusion facilities, these patients face multiple challenges in the wake of the pandemic.
Dr Prabodh Seth, Joint Secretary, Department of Empowerment of Persons with Disabilities, Ministry of Social Justice and 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.
Dr Prabodh Seth's address was followed by an in-depth discussion with a panel discussion.
"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 orgsations as well and right to equality with dignity," added T D Dhariyal, Former State Commissioner for Persons with Disabilities, Govt. of NCT of Delhi.
Others that were a part of the discussion are 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.
During the course of the discussion, the role of parent and parent orgsations was discussed 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 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," said Dr. Sunil Gupta, Director (National Blood Transfusion Council) & Addl DGHS, NACO from the Ministry of Health & Family Welfare.
"These are challenges we are actively working towards overcoming and developing systems to ensuring safety in this process," added Gupta.
"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," said a spokesperson of Thalessemia Patients Advocacy Group.
This webinar was orgsed to discuss how such patients can overcome these challenges," the spokesperson added.
Aman Gupta, co-founder and managing partner of the webinar's communications partner SPAG also took part in the webinar and said, "This webinar worked towards that by starting a conversation about how thalassemia patients can manage the current crisis."
The webinar was orgsed by ASSOCHAM in collaboration with Thalassemics India, Thalassemia Patients Advocacy Group, and SPAG, a leading healthcare communications firm.
( With inputs from ANI )