Thalassemia Patients Advocacy Group and ASSOCHAM hold a national roundtable on safe blood transfusions: promise advocacy paper on uniform legislation

Relevant stakeholders from government, industry and patient communities joined in to share recommendations

New Delhi, 5th December 2022: To collect facts and perspectives around safe blood transfusions with a focus on Thalassemia patients in India, Thalassemia Patients Advocacy Group (TPAG) a Thalassemics India initiative, organized a round table meeting recently in collaboration with the ASSOCHAM (Associated Chambers of Commerce and Industry of India), a non-governmental trade association and advocacy group that often acts as an interface between issues and initiatives. The roundtable saw extensive deliberations around the need for a uniform law for blood transfusion services ensuring compliance with internationally accepted safe blood practices like voluntary blood donation, blood screening by NAT, pre-filtered leucocyte-depleted blood and extended cross-matching to name a few. “ASSOCHAM, in collaboration with TPAG, will develop an advocacy paper on the key suggestions regarding safe blood transfusions,” said Dr Amita Mahajan, Senior Consultant, Deptt. Of Paediatric Oncology & Hematology, IP Apollo Hospital, New Delhi. She was moderating the roundtable discussion.

In the keynote speech, Dr. Anil Kumar, Additional Dy. Director General, Directorate General of Health Service, Ministry of Health & Family Welfare, Govt. of India said, “About 10,000- 15,000 babies with thalassemia major are born every year in the country. Since 95% of the treatment cost of Thalassemia is out-of-pocket of the patient, the government is putting its best foot forward to ensure the accessibility and affordability of safe blood. The government has introduced the eRaktkosh portal, a blood banking software for data management and integration at the Nation level. This portal has a complete blood bank management system, and it provides live information about bloodstock status, availability of blood/ component units, etc. Currently, we have 3,811 blood banks across India registered with the eRaktosh portal. At the same time, the government is already contemplating a national-level program for the prevention and management of Thalassemia. While the guidelines were released in 2016, we need to work more. We believe that with the support of voluntary organizations, we should be able to move in the right direction.”

Speaking at the round table, Ms. Anubha Taneja Mukherjee, Member Secretary, TPAG said, “It is hightime that India shifted to a strict and uniform standard for ensuring safe blood transfusion services. TPAG is grateful to National Blood Transfusion Council (NBTC) for including TPAG as a special invitee to NBTC. This will allow us to bring on board our first-hand experience in pursuance of a world-class legislation on blood. Today, many thalassemics are professionals and taxpayers on account of good management of thalassemia. It would be heart breaking to lose all the hard work by the government by letting thalassemics be exposed to transfusion transmitted infections. It does not even make economic sense to now avoid practices like pre-filtered blood and NAT if you look at the cost of treating these infections.” Mrs Shobha Tuli, Secretary, Thalassemics India, echoed the sentiment and urged the policy makers to place ‘as much emphasis on the management of surviving thalassemics as on the prevention of thalassemia.’ Other TPAG members Mr Anuj Wadehra and Mr Viresh Piplani also emphasises the need to move towards safe blood practices like NAT screening and pre-filtered blood.

Dr Androulla Elfetheriou, Executive Director, Thalassemia International Federation, shared the international best practices and spoke about collaborating with India policy makers. She also pointed towards the mandate of NAT by Germany in 1990s!

Dr, Seema Kapoor, Director Professor at Division of Genetics, LNJP & MAMC, shared the initiatives in store for making Delhi a safer place from the perspective of transfusions.

While commenting about the initiative jointly undertaken by TPAG and ASSOCHAM, Dr. Upasana Arora, Co-Chairperson, of ASSOCHAM Healthcare Council and Chairperson, Yashoda Super Speciality Hospital said “As per data shared by the Centres for Disease Control and Prevention (CDC), one in every 100 HIV patients could be a victim of an infected blood transfusion In India. Though it is compulsory to screen all collected blood units for Hepatitis B Virus (HBV), HIV and Hepatitis C Virus (HCV), syphilis, and malaria by serological tests, there remains a risk of transmitting TTIs due to window period infections, hidden diseases and the emergence of new variants and viruses. Therefore, it is time to bring about structural reforms in the blood transfusion process by adding an extra layer of protection. A discourse such as this round table would be the first step towards engaging relevant stakeholders to establish a robust policy framework for safe blood transfusion, prioritizing patient’s safety and thereby reducing the mortality rate from transfusion-transmitted infections.”

Talking about the current situation of blood banks in India, Dr. K Madan Gopal, Sr. Consultant (Health), Niti Aayog, said, “India has a large footprint of blood banks, however, there is still a long way to go to meet the adequate number of blood donations. We annually require ten lakh units of safe blood. Moreover, 10-30 percent of the total number of blood units collected through voluntary donations goes waste because of transfusion-transmitted infections (TTIs). Unfortunately, thalassemia patients are always at a higher chance of getting TTIs because of routine blood transfusion requirements. We need to ensure that the blood we store is fresh and assessed thoroughly for all infections effectively before allowing it for transfusions. We require standardized screening practices to ensure safe blood across the country.”

The discussion brought together experts from across the stakeholder spectrum ranging from policy making fraternity at the Central & State level, medicine, blood banking, advocacy, corporate, civil society, and the thalassemia patient community who require to undergo blood transfusions in frequent intervals depending on their condition. Mr. Vinay Shetty, Vice President, Think Foundation, Mumbai; Dr. Vinky Rughwani, Pediatrician, Director, Thalassemia and Sickle Cell Center & Member, State Blood Transfusion Council, Govt. of Maharashtra; Dr. V. Mythili, Director, Voluntary Health Services, Blood Bank, Chennai; Mr. Soumya Santara, TPAG Member from Kolkata, Ms Sangeeta Wadhwa, TPAG Member from Maharashtra, and Mr Gagandeep Singh Chandok from Bengaluru, TPAG Member were some of the other eminent speakers at the round-table discussion among others.