Covid-19 sets back blood transfusion-dependent thalassemia patients

Anubha Taneja Mukherjee | Updated on July 18, 2020

Fear of exposure has largely kept the donors away from donating voluntarily

The Covid-19 outbreak has upended healthcare systems around the world, putting millions of lives at risk. At the receiving end are also patients with other serious health issues who are finding it difficult to access healthcare facilities as unanticipated nationwide lockdowns have led to movement restrictions.

A significant share of this list of non-medical emergencies lies with over two million blood transfusion-dependent patients who have been suffering due to an acute shortage of blood banks across the country. An inherited and chronic blood disorder, thalassemia causes the body to have less haemoglobin than normal. Thalassemia patients require life-saving transfusions every two weeks depending on their haemoglobin level.

In a country which is home to one in eight of thalassemia carriers with 10,000 children being born with the disease each year, why were we not prepared to fight the crisis?

It is unfortunate that thalassemia patients are awaiting a prevention and control programme at the national level to aid their condition. Why do we need these programmes? Because, in the absence of prevention programmes, families are passing on the disease to their children and future generations as they do not even know if they are suffering from Thalassemia.

Shortage of safe blood

The pandemic brings to fore an underlying problem that thalassemia patients have been facing for decades now — shortage of safe blood. As per government data available on the National Blood Transfusion Council website, the total donated blood in the country dropped from 38,189 units in February to 26,741 units in March. Further, only 3,037 units were received in the first 10 days of April. The number of blood donation camps also came down from 473 in February to 46 in April.

Fear of exposure has largely kept the donors away from donating voluntarily. Hospitals are now declining blood transfusions due to lack of beds and fewer staff. With restricted access to the blood transfusion centres, some patients are having to move to a regressive management regime as they shift from their regular blood transfusion centres to local nursing homes that do not follow the same standard of management and care.

In a town in Uttar Pradesh, a blood bank with a capacity of 100 units was recently left with 16 units only due to a lack of donors. Not only this, some patients who were getting NAT tested blood in their transfusion centre had to shift to centres that did not have NAT tested blood, thereby putting patients at risk for contracting transfusion transmitted infections (TTIs) like HIV, HCV, and HBV.

Wide differences

The management and care of thalassemia vary from one State to another and even from one hospital to another. For instance, blood transfusion practices for a patient receiving blood in a Delhi government hospital vary from one receiving blood in a Central Government hospital. Mortality in thalassemia has always been high due to transfusion transmitted infections and even then practices like voluntary blood donation and screening methodologies are not uniform across the nation. While someone in AIIMS at Delhi gets NAT tested blood, someone in another part of the country may be getting whole blood through replacement donors.

To save patients with thalassemia, we must set up mobile vans and small or micro blood donation camps across the country following the social distancing norms in the areas of green zones, with the help of various welfare organisations. Although we do have important guidelines set by the National Blood Transfusion Council, the problem is that many blood banks do not follow many of these guidelines. From mandating thalassemia screening, adoption and implementation of safe blood practices and screening across India to preventing mortality by TTIs, appealing to donors for voluntarily donating blood and centralised blood transfusion clinics/centres across India, it’s a long road ahead before thalassemia patients get their due from the healthcare system.

The writer is Member, Delhi-based Thalassemia Patient Advocacy Group

Published on July 18, 2020

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