From shortage of blood in blood banks to unavailability of transportation and transfusion facilities, thalassaemia patients, cancer patients and dialysis recipients among others, who need regular blood transfusions, have been facing multiple challenges in the wake of the Covid-19 pandemic.
Added to their agony has been the Central and State governments’ failure to give priority to their needs, lamented an advocacy group as they shared their views at a Webinar “Illness to Wellness’ organised by ASSOCHAM on International Day for Persons with Disabilities 2020 marked on Thursday.
“On our own, with the help of organisations like Life Savers, Khoon and Giving Is Living in addition to support from Indian Red Cross Society, have been organizing blood camps during the pandemic. However, the State governments did not do much to spread awareness around blood donation” rued Anubha Taneja-Mukherjee, Member Secretary, TPAG (Thalassemics Patients Advocacy Group).
It is estimated that there are about 65,000-67,000 thalassemia patients in the country with around 9,000-10,000 cases being added every year.
Anubha also alleged disparity in rules for the sector pointing out that currently the Drug and Cosmetic Act regulates blood while National Blood Transfusion Council (NBTC) guidelines are voluntary. Similarly, National Health Mission (NHM) is responsible for thalassemia while NACO is responsible for BTS. There is too much confusion, she said.
In the long run, the Government should consider having a consolidated blood regulation separate from the Drugs and Cosmetics Act that does not give adequate power to NBTC, she suggested.
The experts also deliberated on the Rights of Persons with Disabilities Act 2016 and how its implementation can ensure availability and safety of blood transfusion services, the demand which was backed by Anil Rajput, Chairman, ASSOCHAM CSR Council.
The panel also included Dr Pawan Kumar Singh, Head of Oncology, Organ Transplant, Hematology Hematopoietic Stem Cell Transplant Department, Artemis Hospital, Dr Amita Mahajan, Senior consultant, Pediatric Hematology & Oncology Indraprastha & Apollo Hospitals, Delhi, Chetan Manchegowda, Founder, Khoon; Rajesh Mittal, President, Rotary, Deepak Chopra, President-Thalassemics India, George Contantinou, Board member of Thalassaemia International Federation.
Dr Sunil Gupta, Additional Director General, Blood Transfusion Services at NACO, said that a Committee is considering whether there should be a separate body and legislation even as the experts called for timely availability of medicines, accessibility of generic drugs at a cheaper cost and bringing down the cost of stem cell and bone marrow treatment so that more and more thalassaemia patients can be benefitted.