In early April, 35-year-old Shaoli Rudra, a thalassaemia patient based in Mumbai, tweeted an urgent appeal to the municipal corporation of the city. She said, “How about vaccinating those under 45 who have major health issues? That vaccine should go to everyone who is compromised. Your eligibility criteria can be, quite literally, the death of many of them!” Sadly, Rudra succumbed to Covid-19 complications two weeks after sharing this tweet.
Even though subsequently, the eligibility criterion was broadened to include those above 18, for thalassaemics like her, it was too late. A rare genetic blood disorder, thalassaemia hampers the ability of the human body to make haemoglobin for red blood cells, a shortage of which can lead to the failure of multiple organs and even death. Unless they resort to expensive and risky bone marrow transplantations, thalassaemia major patients require regular blood transfusions for survival; as frequently as every two weeks. Unfortunately, blood has been hard to come by during the pandemic.
Nanni Singh, CEO of ShowCase Events and parent to a thalassaemic patient, describes the situation succinctly: “The fear of the pandemic led to a huge shortage of blood, as donors were scared to come to hospitals. Blood banks dried up and patients were running from pillar to post. Many hospitals shut down their thalassaemia transfusion units to convert into beds for Covid-19 handling, so our patients had nowhere to go for their transfusions. Just imagine the nightmare we have been living—no blood and fear of contracting the virus.”
In a speech delivered last year at an Indian Red Cross Society event, Health Minister Dr Harsh Vardhan stated, “India has the largest number of children with thalassaemia major in the world, about one to 1.5 lakh.” Seven years ago, the Thalassaemia Patients Advocacy Group (TPAG), a wing of Thalassaemics India society, was formed to protect the interests of the patients. Currently, their fight has been focused on priority allotment of vaccinations to thalassaemics, in addition to provision of safe and hygienic spaces in hospitals to continue blood transfusions.
Nehal Dhingra, a founding member of the group, has been at the forefront of this fight. She says, “We have lost a few of our members to Covid-19 due to thalassaemia-specific complications. These situations could have been avoided. With common entry and exit points, visiting hospitals for blood transfusions means greater exposure to the virus.” For people with serious underlying issues like thalassaemia, timely vaccination, irrespective of the age eligibility yardstick, could have been their best chance at survival.
“The fear of the pandemic led to a huge shortage of blood, as donors were scared to come to hospitals to donate. Blood banks dried up and patients were running from pillar to post.”
Nanni Singh, CEO, ShowCase Events and parent to a thalassemic patient