Thalassemia is an inherited blood condition that causes less than normal haemoglobin to occur in the body. For their entire lives, such patients require blood transfusion regularly, and management of the disease is the only option in most cases.
Anubha Taneja-Mukherjee, Member Secretary – Thalassemia Patients Advocacy Group, has shared with Healthwire Media about the struggles of people living with thalassemia during Covid-19.
Thalassemia is a blood disorder which requires transfusions every other week to keep a patient healthy and alive.
“India has close to two million people living with Thalassemia. I am one of them and our struggles range from blood shortage to associated hepatic, endocrinological and cardiac issues, says she.
The biggest problem continues to be lack of one standard of care across India.
COVID Lessons for Thalassemia Patients
From the shortage of blood in blood banks to unavailability of transportation and transfusion facilities, thalassemia patients have been facing multiple challenges in the wake of the Covid-19 pandemic.
Experts agree that the problem is not only that people are dying, it is even more complex because of the unavailability of blood. Some patients had to take blood transfusion in neighbourhood hospitals during the pandemic while having to put up with the reduced quality of care, particularly the procedure of blood screening.
Why not “One India One Healthcare”
There is no standardization in management and treatment for Thalassemia. Also, the protection and priority care required by the Rights of Persons with Disabilities (RPWD) Act 2016 can hardly be seen as being enforced at ground level by the states.
The government should take steps to create awareness about the prevention of disabilities like thalassemia under the RPWD Act 2016.
The government had taken up a campaign like “One Nation One GST”, why can’t it start “One India One Healthcare” for thalassemia also”, says Anubha Taneja-Mukherjee.
This Issue Is Far Bigger
As a public health preparedness strategy during a crisis like COVID-19 pandemic, the plights of thalassemia patients should never be ignored. Government-sponsored community blood-banks needs to be established, and coverage should be expanded.
“Patient group has been tirelessly working towards protecting the overall interests of Thalassemics and prevent Thalassemia. It is high time that Thalassemia patient bodies were given their due place in policymaking and not considered only as victims”, she says.
“My request to the government is to please take-up problems like safe blood, issue of vaccine priority, issue of management of thalassemia”, she says.
