The Thalassemia International Federation(T.I.F.) in association with Federation of India Thalassemiacs(F.I.T.) organised a workshop on 17-18 December 2013 in New Delhi. The workshop was aimed at capacity building the patients/parents support groups and help the groups in India formulate a clear strategy towards improving and supporting national and state efforts for better control of thalassaemia. Representatives of 7 states namely Punjab, Haryana, Uttar Pradesh, Delhi, Madhya Pradesh, Gujarat and Maharashtra attended the workshop. We got an opportunity to present ThalCare - the software tool which aims at comprehensive management of thalassemia developed at the workshop.
Little recognition has been given to the plight and needs of individuals suffering from thalassemia and the care and management support offered to children with thalassemia by various states varies widely. In spite of the fact that thalassemia requires chronic management for a lifetime with annual cost of management being estimated at INR1.5 lakhs there is little or no support from the government in most states. The workshop enabled the representatives of the 7 states which participated to learn about the support system which exists in other states, identify the real needs and challenges and consequently prepare an effective charter of demands.
The interesting part of the workshop was the discussion on setting the accountability for the birth of a child with thalassemia. While it is true that most ladies in India have little access to pre-natal care, it is shocking to see pregnancies which were overseen by obstetricians and gynecologists from the early stages also result in the birth of thalassemiacs. The hemogram which is routinely done for pregnant women can clearly highlight the possibility of the mother being a thalassemia trait carrier and be an early preventive indicator.
While prevention and management was widely discussed, there is little stress on curative option for thalassemia - bone marrow transplant(B.M.T.). It has been shown that with proper selection of patients B.M.T. done in low and medium income countries is comparable in outcome to that in the developed countries(1). B.M.T. not only offers respite from lifelong management with poor quality of life, it is also a high cost saving for public healthcare since the curative cost is equivalent to that of a few years of management.
Our presentation on ThalCare was very well received by the delegates who were happy to observe how the tool is enabling systematic thalassemia management in the challenging environment of the public and no-profit healthcare setups. While the adults could relate to the problems which the tool is designed to mitigate and were happy to see the overall outcome of deploying the tool, the young individuals with thalassemia were all excited about the possibility being able to visualise and manage their medical condition through their mobile phones. It was a satisfying moment to receive admiration and support for ThalCare from the experts in the field. The possibility to extend ThalCare to everyone across the globe was explored. Due to a prior commitment T.I.F. expressed their inability to help with extending ThalCare to all centers, nevertheless, the state representatives saw value in making use of the tool and offered to enable and support the tool.
We would like to thank Dr Androulla Eleftheriou and Dr Michael Angastiniotis from TIF and Dr Shobha Tuli from Thalassemics India for giving us an opportunity to participate in such an enlightening workshop and giving us the opportunity to present ThalCare. There was a lot to learn and absorb from the 2 day program and we look forward to making use of this for enhancement of thalassemia care and management in Karnataka.
References (1) Faulkner LB, Uderzo C, Masera G. International cooperation for the cure and prevention of severe hemoglobinopathies. J Pediatr Hematol Oncol. 2013 Aug;35(6):419–23.