Thalassemia is an inherited genetic disorder and to be able to survive, its patients require blood transfusion every 15 to 20 days. There are close to 2 million people suffering from Thalassemia in India and estimates suggest that more than 10,000 children are born every year who suffer from the disease. Arranging blood every fortnight becomes a real challenge when there’s a shortage of 1.9 million units (or 15 per cent) vis-a-vis the WHO norm (as per the data of 2016-17). Even the data by the Ministry of Health and Family Welfare says that only 11 million units of blood are collected every year against the requirement of 12 million units. These figures are of the period way before COVID-19, a highly contagious pathogenic viral infection, wreaked havoc. After coronavirus forced the government to enforce lockdown, not only blood donation camps got affected but it also hit transportation of patients and donors.
Moreover, every time these patients go to hospitals, they are asked for replacement blood donors. According to Anubha Taneja Mukherjee, Member Secretary – Thalassemia Patients Advocacy Group, replacement blood donation is not a good practice and it is not advisable by National Blood Transfusion Council or NBTC’s guidelines.
Anubha Taneja said the problem is the lack of voluntary blood donation and the trend of getting replacement donors. “Replacement blood donation can result in infections like HIV, HCV, and other bacterial infections – called transfusion-transmitted infection – and lead to even death,” she said.
“These deaths, which occur not because the patient did not get the required blood but because the patient did not get the safe blood, should also be counted. This happens because either the donor was carrying the infection or because the screening was not proper. There are incidents where there were no proper screenings for transfusion-transmitted infection,” Anubha Taneja added.
The situation has worsened during the pandemic as Jharkhand has gone to the state of facing deaths due to blood shortage. In Bathinda, four Thalassemia patients, between 8-13 years, were tested positive for HIV.
“There are so many unreported cases. Many times parents are so poor that they cannot go to cities just to hear that blood is not available. So they simply give. We don’t know whether these cases are being reported or not,” she said.
In other states, patients of Thalassemia have to run helter-skelter for blood ahead of every transfusion. Shivangi Amrti, a Thalassemia patient living in Delhi, said that arranging blood of as common as type O+ is a tough task during pandemic.
“There is an acute shortage of blood during the pandemic and it is very difficult to find blood group as common as O+. This is making our life very difficult. And this problem will continue till the time blood banks will have a shortage of blood. Most of the time they ask us to find replacement donors as they have no other options,” she said.
Blood banks too are finding it difficult to provide blood to Thalassemia patients as there’s hardly any voluntary donor. Dr Anju Verma of Rotary Blood Bank (RBB) in Delhi said that they ask patients to bring the donor and then they give patients blood in exchange. “This is how things are happening.”
“Before pandemic, we used to collect around 2,000 units in a month and now we are unable to collect even 200-300 units. Lesser number of blood donation camps are being organised now and we hardly see 15 -20 people in a camp. People need to come forward otherwise there will be a huge shortage of blood,” Dr Verma added.
Even now, post lockdown, while Red Cross is holding blood donation camps, all the blood banks are not doing this. It needs a concerted effort by the State Governments under NHM. State blood cells under the National Health Mission (NHM) should run campaigns on social media, radio, etc. and the hospitals should be encouraged to hold blood donation camps instead of banking on patients to organise donors every time their transfusion is due.
This Issue Is Far Bigger
Experts believe that the issue is not simply that people are dying because of the non-availability of blood, it is much more complicated. During the pandemic, some patients had to take blood transfusion in neighbourhood hospitals while having to put up with the reduced quality of care, particularly blood screening methodology.
The reason is that management and care of Thalassemia are not standardized. Further, safety and priority treatment mandated under the Rights of Persons with Disabilities (RPWD) Act 2016 can hardly be seen implemented by the States on the ground level.
One Authority To Regulate Blood Transfusion Services
In the long run, there should be one authority to regulate blood transfusion services in India. It will pin accountability on a single authority. At present, in cases like transfusion infected blood transfusion at Bathinda’s Civil Hospital, who are you going to catch hold of? The National Aids Control Organization (NACO) primarily has the mandate for HIV but it oversees almost 1100 blood banks while NHM has the remaining blood banks and is primarily responsible for Thalassemia. National Blood Transfusion Council does not even find a mention in the Drugs and Cosmetics Act that regulates blood transfusion services in India. The guidelines of NBTC and SBTCs are voluntary and non-binding! Therefore, if a State Blood Transfusion Council (SBTC) issues a direction like they some time back did – to avoid replacement donation and encourage voluntary blood donation – blood banks are not bound.
“After blood banks are given licences to operate under the Drugs and Cosmetic Act, they may or may not follow NBTC’s guidelines. It is therefore imperative for the Ministry of Health and Family Welfare to think about setting up one regulatory body for blood and blood components under one regulation for blood instead of the Drugs and Cosmetic Act that is implemented by officials who are experts at pharmaceuticals and not blood,” she said
Further, the government should take steps to create awareness for the prevention of disabilities like thalassemia under the RPWD Act 2016. Had the government taken up a campaign like “TB Harega Desh Jitega” for thalassemia also, we may have seen much less requirement of blood. On the treatment side also, new therapies that claim a reduction of blood transfusion frequency must be explored and promoted by the policymakers in addition to bone marrow transplant.