International Thalassemia Day May 2015

21st International Thalassemia Day 8th May 2015

National Thalassemia Welfare Society observed 21st International Thalassemia Day (ITD) at Constitution Club of India, Rafi Marg New Delhi 110001 on 8th May 2015

Around 250 Thalassemia patients, parents and Thalassemia experts gathered to discuss the problems faced by thalassemics and to find means to solve those problems.

From 6pm to 7pm patients open their heart under the session “Dil Ki Baat”. Most of the patients demanded that transfusion services should be available on all 7 days a week including Sundays and holidays. Only DDU Hospital is providing transfusions on Sundays and holidays but other hospitals are not. Patients were also complaining about break in supply of medicines and filters.

After that from 7pm to 8pm was Panel discussion by doctors, in which Dr VP Choudhry former professor and head of haematology AIIMS moderated the session while Dr AP Dubey, Director professor & head department of pediatrics, LN hospital, Dr Jagdish Chandra Director professor & head department of pediatrics, Kalawati Saran Children Hospital, Dr Mousmi Swami head blood bank DDUH and Dr Dinesh Bhurani Chief of transplant unit Rajiv Gandhi Cancer Research Institute participated. Experts asked the thalassemia patients and parents to maintain pre-transfusion haemoglobin above 10gm/dl and serum ferritin <1000ng/ml for optimum growth and puberty. Parents were also asked to search for HLA matched donor early in life because if bone marrow transplant is done early, success rate.

It was followed by welcome of dignitaries from 8pm onwards. While welcoming the guests Km. Surrendar Saini a noted social worker, Padma Bhushan Awardee and president of NTWS stressed the need of inclusion of Thalassemia in the list of disabilities for the purpose of “Disability Act”. Ms Tanu Verma a thalassemia major patient sang a melodious song “Eh mere vatan ke logo” in which she portrayed every aspect of Thalassemia. Dr J.S Arora general secretary of NTWS explained the problems of thalassemia to the audience and highlighted the actions need to be taken by Ministry of Health Govt. of Delhi. He requested the chief guest Sh. Satyender Jain, Hon’ble Health Minister Govt. of NCT to initiate transfusion services 365 days a year in Delhi Govt Hospitals which include GTB hospital, LN hospital, CNBC hospital, BSA hospital, Sanjay Gandhi hospital and Hedgewar hospital. He requested the Hon’ble Minister to procure the medicines and blood filters at DHS level to avoid break in supply, initiate thalassemia screening of all pregnant women at all hospitals and maternity centres of Delhi, introduce NAT testing by individual donor testing (IDT) method in donors blood at all blood banks in Delhi to save all blood recipients from transfusion transmitted hepatitis B, C and HIV infections. He stressed the need of a sequencer for genetic lab at LN hospital, bone marrow transplant (BMT) unit in a Delhi Govt. hospital and a grant of Rs. 5 lacs for thalassemia patients undergoing BMT till we don’t have BMT unit at any Delhi Govt. hospital. He said all these decisions were taken during the regime of previous Govt. but were not implemented due to administrative reasons. He requested the Hon’ble Minister to revitalizing Thalassemia cell under DHS of which he was coordinator since inception; it will help in improving the facilities for care & control of Thalassemia in Dr Arora again requested the Hon’ble Minister of State for Chemicals Mr Hansraj Ahir to pursue with central Govt. to pass the disability bill which has already been tabled in Rajya Sabha. Hon’ble Union Minister of State for Chemicals Sh Hansraj Ahir gave his blessings by promising to bring the iron chelators being used by thalassemics under National Pharmaceutical Pricing Authority (NPPA) and manufacturing of leucocyte filters in India to reduce the cost of these drugs and equipment. He also promised to discuss the disability issue with Minister of Social Justice and Empowerment

Before delivering his speech chief guest Sh Satyender Jain Hon’ble Minister of Health Govt. of Delhi released the Hindi edition of Florilegium of Thalassemia authored by Dr J.S. Arora. In his speech he promised speedy follow ups of the proposals put forward by Dr JS Arora and will specially look for safe Blood, uninterrupted regular supply of medicines, screening of pregnant women, open BMT centres in the Delhi Govt. Hospitals. He also promised to rejuvenate Thalassemia cell and asked Dr Arora to continue to coordinate Thalassemia Cell for rapid implementation of Govt. decisions

Sh. Jarnail Singh, MLA Tilak Nagar said that he is aware of noble work done by NTWS and already given a building for thalassemia center to NTWS at Tilak nagar

Dr VP Choudhry thanked the guests and delegates. In the end all the participants relished the delicious food and thalassemics were given return gift.