By Anubha Taneja-Mukherjee & Shivangi Amrit,
Immediately after the government announced in May 2021 that people above 18 years can receive the COVID-19 vaccine, the National Blood Transfusion Council (NBTC) issued an order stating that a person cannot donate blood for two weeks post-vaccination. One would wonder as to why the topic of blood donation assumed such significance so as to warrant corrections, explanations, etc? Here is a fact which is not alien to anyone – blood services hold prime importance for urgent or elective surgical interventions and patients with rare genetic blood disorders such as thalassemia. As per the World Health Organisation, a country should have blood units equal to a percent of its population and India did not meet this parameter even before the pandemic. As we witness COVID-19 trampling the healthcare systems worldwide, just like many other sectors, blood blanks and blood transfusion services are also facing unforeseen challenges. Unfortunately though, what is alien to most is the fact that close to 5 lakhs patients of thalassemics who require blood transfusion every fifteen days have been most badly hit by the shortage of blood during Covid-19.
In the last 14 months, there has been a steep decline in the collection of blood units and the reasons for this are not mysterious. Inability to travel for blood donation, fear of contracting the virus while visiting blood collection camps or crowded hospitals and new guidelines to prevent vaccinated adults from donating blood, have led to acute blood shortages in the country.
Young people in the age group of 19-44 years forms majority of blood donors in India. Considering that vaccination plays a crucial role in the fight against COVID-19, the question that arises is – what can be done now? Awareness campaigns should focus on educating young volunteers to donate blood either before getting the vaccine, or at least 14 days after their first or the second dose. Moreover, healthy, and young donors should volunteer to donate blood, as patients who undergo emergency surgeries and suffer from thalassemia are in dire need of blood supply.
As per reports, another problem that has resulted from low turnout at blood donation camps is of ‘blood replacement’ that does not fall under the guidelines of National Blood Transfusion Council (NBTC). In blood replacement, the recipient is asked to bring a friend or a family member to donate or replace the blood used in a transfusion. Due to inadequate screening facilities in the country, replacement blood can lead to infections like HCV, HIV and transfusion-transmitted infection that can lead to death. How has the situation worsened during the pandemic? Jharkhand is recording deaths attributed to blood shortage, and in Bhatinda, four thalassemia patients tested positive for HIV. A father of five-year-old thalassemic boy cycled 400 km in Jharkhand for blood transfusion of his child as COVID-19 had the left local blood bank dry.
Zooming in on the Bigger Picture
When suffering from thalassemia, a person can have less haemoglobin in the body than needed. The disorder can cause anaemia, leaving the person fatigued. Patients with mild thalassemia require no treatment. However, when one suffers from more severe forms, regular blood transfusions become critical. The disorder originated from the Mediterranean countries, wherein invaders came from several parts of the world and married within their communities, leading to the spread of disease drastically. That is when it eventually led to India becoming the thalassemia capital of the world. India accounts for almost 10 percent of the total world incidence of the disorder. As per estimates, almost two million people suffer from thalassemia, and 10,000 new-borns fall prey to it every year. These patients require blood transfusions every 15 to 20 days. The statistics revealed by the Ministry of Health and Family Welfare are disturbing. According to them, India has a requirement of 12 million units of blood and only 11 million are collected every year. In the absence of robust screenings and preventive health checks, thalassemia minor patients are passing on the disorder to their children.
Therefore, the country needs a national policy on the disorder to create awareness among the masses about diagnosis and treatment, along with cascading strategies to prevent its spread. Under the guidelines of National Health Mission (NHM), Pre-marital and pre-conception screening should be made a mandatory public health initiative. Moreover, to ensure a regular supply of blood, a concerted effort is required. Under the NHM, state governments should run campaigns on radio and all social media platforms to educate people and compel hospitals to organise blood donation camps, instead of asking patients to arrange donors every time a transfusion is needed. Additionally, there is a need to ensure inter-city travel of patients, donors and vehicles carrying blood even when borders are sealed due to the lockdown.
In India, management and care for thalassemia patients is not standardised. Even though the country has treatment of thalassemics mandated under the Rights of Persons with Disabilities (RPWD) Act 2016, it has merely been on papers without any implementation by the states. The blood banks may or may not follow the guidelines of NBTC after they are given the licenses to operate under the Drugs and Cosmetic Act. Therefore, it is critical for the country to have one authority to regulate blood transfusion services. For treatment, in addition to bone marrow transplant, researchers should explore new therapies to reduce the frequency of blood transfusion. Everything said, the government should include patients in the policy making and focus on preventing and managing the treatment of thalassemia patients.
(The authors are Legal Professionals & Members of Thalassemia Patients Advocacy Group. Views expressed are personal and do not reflect the official position or policy of the Financial Express Online.)
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