New Delhi: Industry body ASSOCHAM and health experts came together on the International Day of Persons with Disabilities to bring to the fore the dire need to address and understand the multiple challenges faced by thalassemic patients during the coronavirus pandemic, according to the statement.
The panellists highlighted the need to address some critical issues like blood shortage, the Thalassemia Patients Advocacy Group (TPAG) said.
'While we were still fighting for safe blood under RPWD (Rights of Persons with Disabilities) Act 2016, blood supply itself became a challenge,' TPAG member secretary Anubha Taneja Mukherjee said.
Thalassemias India and TPAG managed 1,400-plus blood donations, helped raise awareness through social media campaigns and organised capacity building programmes for the patients, according to Mukherjee.
'However, during the past few months, the state governments did not do much to spread awareness around blood donation. We did not feel prioritised by our States. On International Disability Day, we urge the State governments to give priority treatment to thalassemias and take steps to ensure our survival with dignity,' she said.
In the long run, Mukherjee said, the government should consider having a consolidated blood regulation separate from the Drugs and Cosmetics Act, which do not give adequate power to the National Blood Transfusion Council (NBTC).
Currently, the act regulates blood and the NBTC guidelines are voluntary. The National Health Mission is responsible for thalassemia, while National AIDS Control Organisation (NACO) is responsible for blood transfusion services,' she said. 'There's too much confusion!' From social media platforms to spreading awareness on the subject, the experts expressed their views on how digital platforms and special certifications could be leveraged to ensure patient needs were addressed.