10th National Thalassemia Conference - World Patients Alliance

National Thalassemia Welfare Society organized “10th National Thalassemia Conference” in association with Department of Paediatrics, Kalawati Saran Children’s Hospital, New Delhi & Lady Hardinge Medical College and Associated Hospitals on Saturday & Sunday, 4th & 5th February, 2023 at Swaran Jayanti Auditorium, LHMC and Associated Hospitals, New Delhi. Over 1000 doctors and patients/parents registered to participate. The theme of the conference was “Care & Cure in 2023”.

Scientific session started at 9 am. Dr Shruti Kakkar and Dr Piali Mandal the session with introduction of NTWS and 10^th NTC. First two sessions were on transfusion therapy and chelation therapy. Dr Jagdish Chandra the opening speaker gave overview of current status thalassemia in India. Blood transfusion by Dr amita Mahajan, vaccination by Dr Tulika Seth and splenectomy by Dr Pooja Dewan. Dr VP Choudhry moderated the 1^st session.

Session II -Dr Sanjiv Digra spoke on monitoring, Dr Praveen Sobti highlighted the importance of MRIT2* in assessing the iron overload. Dr Sunil Gomber Former Prof. and Head Department of Pediatrics UCMS GTB Hospital said that new formulation of Defrasirox – Defrasirox FCT (Film Coated Tablet) are easier to take and have less side effects compared to Dispersible tablets 

Then the stage was taken over by Ms Sangeeta Wadhwa to manage the inauguration ceremony. The conference was inaugurated by Hon’ble Minister of Social Justice & Empowerment, Dr Virendra Kumar. Mr. Hansraj Ahir chairperson National Commission for Backward Classes and Former Hon’ble MoS, Home affairs GOI & Mrs. Vinita Srivastava Advisor Health Ministry of Tribal Affairs GOI were Guests of Honor

Chief Guest Hon’ble minister of Social Justice and Empowerment Dr Virendra Kumar said that our Govt has included Thalassemia and Sickle Cell Disease in the list of disabilities in RPWD Act 2016. Many Thalassemic have taken admission in higher education by taking benefit under RPWD Act. He said we will consider appropriate steps on issues raised by Dr Arora like reservations in employment, and health & life insurance for Thalassemics.

Mr Hansraj Ahir chairperson of NCBC assured that he along with Hon’ble Minister will take up with PMO the issue of waiving of GST on medicines and equipment required for treatment of thalassemia.

Dr JS Arora General Secretary National Thalassemia Welfare Society exhorted the patients and doctors to be aware of new developments in the field so that thalassemics can live a near normal life. He urged Hon’ble Minister of Social Justice and Empowerment to take necessary steps so that Thalassemics are not deprived of the benefits of  RPWD Act 2016.

Mrs Vinita Srivastava in spite of her ill health specially came to grace the occasion. She shared her story how she became crusader against thalassemia when she was in blood cell in MoHFW and got National Guidelines for Prevention and Management of Hemoglobinopathies. Now she has moved to tribal Ministry as Advisor to Health Cell where though Sickle Cell is priority but she is passionate about thalassemia so firmly pursuing the cause of Hemoglobinopathies and other blood disorders.

Post lunch once again Dr Shruti and Dr Piali took over the stage. The 3^rd session was on Vital organ care which included care of endocrine, liver, heart & bone health. 4^th session was most sought off as it covered medicines reducing blood requirement.

Dr Maria Capellini from Italy who has been involved in the research of the new molecule/drug Luspatercept said that Luspatercept can reduce the transfusion requirement from 50 to 67 %. Besides making the life of thalassemics comfortable She added that in thalassemia intermedia some patients may go off transfusion.  Besides making the life of Thalassemics comfortable This will not only save lots of blood units but also huge expenses on chelation therapy.

In the evening we had a FIT meeting, cultural program followed by delicious dinner.

On Sunday 5^th Feb’2023 there were two programs. Patients/parents in main auditorium was compered by Dr Shruti and “Doctors” session on 1^st floor in MEU Hall by Dr Amita Mahajan.

In auditorium the patient/parent session started with NTDT care followed by session on Cure. Audience were eagerly waiting to listen on Gene therapy as Gene therapy has shown promising results and many patients have been cured permanently. Dr Sandeep Soni Associate Professor of Pediatrics, Division of SCT, UCSF, San Francisco, CA, USA who himself has been involved in Gene therapy in thalassemic has specially enlightened us on this new therapy. He said new technology “gene editing” is now been tried. He said 42 out of 44 patients stopped blood transfusion and 2 patients have 75% and 89% reduction in transfusions with no serious side effects and no fatality.

Then we had a session on Patients Perspective which was managed by Ms Sangeeta. Dr Michael Angastiniotis medical director TIF stressed the need of access to quality care. Thalassemia International Federation, executive Director Dr Androulla Eleftheriou gave tips on strengthening the thalassemia advocacy groups in the country. Mr TD Dhariyal explained the importance of RPWD act for Thalassemics and how to get benefits under this act. His talk was very simple and interactive.

Then we had a session on adolescence, fertility and pregnancy followed by capacity building session for the patients and parents. Mr Prabhat Sinha who has vast experience in patient advocacy and CSR funding exhorted the NGO representatives to be vigilant about Govt. allocation for the programs and keep track of its utilisation. He said many times lot of funds are allocated but are sent back without utilising, make yourself aware of schemes and its implementation.

The program ended with discussion on “Challenges in Daily Life” by prominent successful Thalassemics, Mr Gagandeep Singh Chandok, Mr Ajay Gandhi (from London UK), Ms Pooja Gupta (Delhi), Ms Aarti Batra (Gurgaon) and Dr Ravi Dhanani (Rajkot Gujarat). It was moderated by Ms Sangeeta Wadhwa (Mumbai)

In the MEU hall sessions were specially held to update the medical professiols involved in management of thalassemia. Pre lunch was managed by Dr Amita Mahajan and pot lunch by Dr Piali Mandal. Around 100 doctors participated. It started with pitfalls in diagnosis, transfusion, allo-immunisation, monitoring and iron chelation. Growth & puberty, Endocrine, Fertility & pregnancy and NTDT were also covered in detail. BMT by Dr Alok Srivatava, Gene therapy by Dr Sandeep Soni and Luspatercept by Dr Maria Capellini sessions were most interactive

The conference ended with confidence that participants were more wiser to take care, prevent & manage the complications and hope soon we will have affordable and safe care & cure of thalassemia, of course not forgetting control of thalassemia is ultimate goal.