At Sankalp India Foundation, We firmly believe that each child must be given an option for complete cure irrespective of their financial status. The HLA test is the first step which determines whether the sibling can be a matched donor to the child suffering from thalassemia. The cost of HLA typing in India is around Rs. 10,000/- per family making it inaccessible to most families. Unfortunately, most families suffering from thalassemia are unaware of the possibility of cure.
The other day I had visitors who had come to one of our day care facilities. For last few years the children - siblings - both thalassemia majors - were being treated at a relatively resource crunched facility. Chelation was barely given and transfusions were given only when they could not be avoided further. I was trying to explain that we would support them with comprehensive treatment if and only if they commit to come every 20-30 days. Local language is not my strength and the look on their faces told me that they were unconvinced.
Thalassemia management offers a unique opportunity for measuring the quality of blood transfusion services. Children suffering from thalassemia who are on chronic transfusion therapy generally come back to the same centre for treatment and management. This enable insights into blood transfusion medicine which otherwise may be very difficult to get.
An intent to periodically measure the quality of blood transfusion service and also to act upon the findings is obviously the first step.
The book of Thalassemia International Federation’s guidelines on the management of transfusion dependant thalassemia is an essential resource for anyone involved in care giving for patients suffering from thalassemia. The latest edition has been released recently and is available for viewing and download from TIF’s website at http://www.thalassaemia.org.cy.
Fail Story is a new section in Sankalp Patrika. We often share stories of success with you. We thought that it may be interesting or rather important to share with you the stories of failure that we face. We hope that one of you will find a better solution to the problems we faced.
