Thalassemia patients require centralised blood transfusion

The Blood Transfusion System (BTS) in India is fragmented and disintegrated under various controls, and there is a wide gap between demand and supply

Across the world, blood donation holds immense significance for people suffering from thalassemia. Health experts inform that around 4.5 per cent population of the world is thalassemia carrier, and, in India, there are 35-45 million carriers, and approximately 10,000-12,000 new thalassemia-major cases are diagnosed every year.

“There are around two million thalassemia-major cases in India. However, since there is no national registry, exact figures are unknown,” notified Dr Anju Uppal, Director, IMA Blood Bank, Bareilly.

Adding to it, Dr RN Makroo, President, Indian Society of Transfusion Medicine, said that about 1.5 per cent of the global population is the carrier of beta-thalassemia, and because of high frequencies of consanguineous marriages, approximately 1,00,000 children with thalassemia major are born worldwide, of which 100,00 are born in India.

Similarly, according to Dr Androulla Eleftheriou, Executive Director, Thalassaemia International Federation, India is a subcontinent with a population of 1,380,004,385 people (17.7 per cent of the total global population). It has an estimated prevalence of patients with Transfusion-Dependent β-Thalassaemia (TDT) of 150,000 with a predicted annual number of affected births of 12,500.

With such a disease burden, there is a huge requirement for blood banks and blood donors. Based on current estimates, an estimated two million units/year of packed red cells are needed to address the needs of TDT in India.

Dr Eleftheriou highlighted, “From 2,626 functional blood banks across the country identified in 2016 by the Ministry of Health and Family Welfare (MoH&FW), 76 per cent were public and not-for-profit-owned and 24 per cent were owned by the private sector. However, 61 per cent of these were situated in eight states, out of which only two (Maharashtra and Gujarat) have a high thalassemia prevalence.

“The blood banks/million population in high thalassemia-prevalence states, including Uttar Pradesh (1.2), West Bengal (1.3), Rajasthan (1.5) and Chhattisgarh (two) is less than the national average of 2.2 blood banks/1,000,000 population. It was estimated in 2017 that the annual collection was 11.1 million units of blood while the demand was 14.6 million units.”

Dr Makroo revealed that the total number of blood banks in India today is about 3,500, including 1,215 (35 per cent) run by the public including government and 2,285 (65 per cent) by private hospitals and charitable organisations.

In Dr Uppal’s opinion, blood banks and hospitals catering to the need of thalassemia patients are enough, but sadly disproportionate.

“We know that a large percentage (approximately 68 per cent) of Indian population resides in villages, or is below the poverty line and uneducated. So, such health facilities for them are out of reach. Either they do not approach the healthcare facility or are reluctant to such treatment because diagnosis and management facilities are available only at district-level and in larger cities,” she pointed out.

The COVID-19 disorder

Since COVID-19 came as a jolt for healthcare systems, thalassemia patients could not be untouched. Health experts are of the view that the death rate of these patients has increased during the pandemic due to paucity of blood supply and lockdowns. Further, since hospitals were packed with COVID patients, thalassemia patients could not approach healthcare facilities, and many patients were themselves infected with the disease which further lowered their immunity.

This, however, was tried to be resolved by the national and state health authorities, along with Non-Governmental Organisations (NGOs), and, slowly, a few blood donation camps were organised in selected places keeping the COVID protocols in mind.

Dr Eleftheriou mentioned that COVID-19 vaccination programmes also cause delays, as vaccinated blood donors need to respect a certain deferral time before donating blood or may go through some vaccine-related illness, mild or more severe, which requires a certain amount of time for recovery prior to any blood donation. The duration of such a deferral time has been a topic of controversy as this has been set to seven days by some countries and 28 days by others.

Other factors that have contributed to the negative impact of the pandemic on the sustainability of national blood supplies are the absence or the inappropriate or ineffective functioning of haemovigilance systems, demographic, geophysical and climatic conditions.

“We need the government to consider that thalassemia falls in the list of disabilities under RPWD Act 2016, and we must be given priority treatment in vaccination in our own wards. Further, many patients who got infected with COVID-19 had to face a hard time because they faced a double whammy of blood shortage, no vaccination and COVID-19. We are at immense risk even without being infected,” an aggrieved thalassemia patient said.

During the first wave, people were still coming to donate blood and some camps were organised too, but the second wave actually brought fear and anxiety amongst the public. Besides, many donors were themselves sick or had a history of contact with COVID patients.

“The pandemic came with a huge wave of challenges and struggles for us – the biggest struggle being to continue to survive and steer through. We have no option but to step out and expose ourselves to hospitals, blood banks, testing laboratories, etc. every two weeks, regardless of the number of COVID cases in the area. To add to this, it is a herculean task to arrange for blood donors. We have witnessed blood banks go dry. The fear of not being able to survive due to shortage of blood has become bigger than the fear of getting exposed to COVID,” Nehal Dhingra, member, Thalassemia Patients Advocacy Group (TPAG) and a thalassemia patient herself, lamented.

The blood transfusion turmoil

The Blood Transfusion System (BTS) in India is fragmented and disintegrated under various controls, and there is a wide gap between demand and supply, experts highlighted.

As per WHO, the lowest requirement of blood donors as per population is about one per cent. Thus, India having a population of 1.4 billion needs 14 million units of blood annually; but, unfortunately, only 12 million units are collected mainly in big cities and state capitals. That apart, the majority of voluntary blood donors are one-time voluntary donors as there is hardly a concept of repeated regular non-remunerated blood donation essential for blood safety.

BTS was managed by the Directorate General of Health Services’ (DGHS) Emergency Medical Relief (EMR) division up to 1991. In 1992, it was entrusted to National Aids Control Organisation (NACO) under the Blood Safety programme and easy availability of funds was the justification for this action. The National Blood Transfusion Council (NBTC) and State Blood Transfusion Councils (SBTCs) were also set up in 1996 for monitoring the activity of blood banks in India, asserted Dr Makroo.

He, nevertheless, expressed his concern saying, “There is a lack of trained manpower in many blood banks and blood donation needs to be centralised and records of regular repeat blood donors and rare blood group donors should be maintained. Although NBTC and SBTCs have been made, unfortunately, NBTC has no authority and BTS is still under various controls. Since April 2021, the BTS has shifted under DGHS again. To improve BTS of the country, NBTC needs to be given authority under one head to govern and implement as happens in most of the developed countries.”

Agreeing with him, Dr Eleftheriou also said that centralised BTS either lacks in India or is limited/under-developed. Apart from it, component separation is weak in many countries and patients with TDT are, on occasions, deprived of red cells, and sub-optimal quality control over every aspect of BTS leads to transfusion-related reactions/adverse events and co-morbidities in a percentage of TDT patients, the exact extent of which is largely unknown.

“Military, private, social security, Red Cross and university blood services, mainly donation, often do not cooperate resulting in an inadequate distribution/provision of blood components to needy people. Moreover, transportation systems, often in large countries, are inadequate to address the needs of those in distant areas far from transfusion centres and/or those in geographical isolation resulting from climate conditions. Delivering blood/components/products in a timely manner and under appropriate conditions can be, and, is challenging.

“Furthermore, programmes that could contribute to blood supply savings, including clinical use of blood/patient-management policies, are only in place in a very few countries. This is mainly due to the lack of relevant and continued educational programmes for medical and other healthcare professionals. Therefore, appropriate/clinical use of blood/patient-management programmes, quality systems, health economies and budgeting, training and education of healthcare professionals are essential tools missing or partially absent across all countries, particularly of the developing world. These, in addition to inadequate country-level data, consequent to the absence of national registries and patient healthcare records, constitute multiple challenges,” she added.

Safety net for blood donors

Since thalassemia patients need a regular blood transfusion every fortnight, they need to be issued the safest possible blood.

Dr Uppal highlighted, “Repeat voluntary blood donors are the best donors for thalassemia patients as their blood is regularly tested in blood banks for transfusion-transmitted infections like HIV, HBV, HCV, syphilis and malaria. Some reputed and big blood banks maintain a donor registry for such patients where five to six donors are reserved for one particular patient. Their phenotyping is matched and they donate regularly for that particular patient so that, he does not develop any antibodies against the donor’s blood.”

Putting emphasis on centralised blood donation again, Dr Makroo said, “Thalassemia patients, soon after diagnosis, should get some base-line investigations for records and reference. The investigation includes ABO blood grouping, Rh- and Kell-extended phenotyping and screening for irregular antibodies. The patient should get registered with a reliable blood bank having the provision to supply safe and quality blood from regular repeat non-remunerated blood donors. The tested blood should be made available to all hospitals’ blood centres for issuance to needy patients. This is practically possible once there is centralised blood collection from blood donors and testing including Nucleic acid Amplification Technology (NAT) for prevention of window period transmission.”

Experts also advised that carrier screening, counselling, pre-natal diagnosis, component separation and haemovigilance programmes are some of the steps that can be taken by healthcare professionals to help these patients.

“It’s said that health is a state affair. So, there is a discrepancy in the government’s role –releasing budget for prevention, screening and management of thalassemia patients – in different states. This should be taken care of,” urged Dr Uppal.

She also spoke about the various methods to screen the donated blood for viral markers.

“Lower the window period, better is the screening method. Rapid card test, ELISA third generation, fourth generation and NAT are some of the blood-screening methods. NAT testing adds an extra layer of safety to the blood products but it’s expensive. Only a few blood banks are performing NAT testing. Government should release funds and make it mandatory in all blood banks,” she cited.

The WHO Action Framework to advance universal access to safe, effective and quality-assured blood products 2020-2023 aims to provide a strategic direction to global efforts to address present barriers to the safety and availability of blood products. Access to safe, effective and quality-assured blood products can only be achieved through effective collaboration among WHO, its member states and other relevant organisations for preventing the future of thalassemia patients, globally.

Akanki Sharmablood donationblood donorsBlood transfusionThalassemia patientsWorld Blood Donor Day
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