In the month of November 2014 Sankalp India Foundation organised 11 blood donation camps where 976 individuals came forward to donate blood and 775 units of blood were collected. The month of November traditionally has several large blood donation camps in the city. We timed the blood donation drives to take care of the small pockets of shortage. Sankalp salutes the spirit of voluntary blood donation at the technology hub of Bangalore.
NACO claims 80% voluntary blood donation already and aims at achieving 85% in 2014-15. Unfortunately, right under the government's nose, at an institution which government wants the nation to look up-to and learn from - the message of voluntary blood donations seems to have no takers.
The above card is one of the four such cards a patient presented to a voluntary organisation last week demanding that they be given blood since they had provided replacement blood earlier in the year.
Sankalp India Foundation has an Emergency Team which works to ensure that people who do not find blood from the blood banks are helped. The team works on corner cases of blood transfusion medicine and extremely rare blood group requests. The team has been handling BBG requests for last 6 years.
Although several stories questioning if justice had been done to the victims of the worst industrial disaster in Bhopal on 3rd Dec 1984 keep coming up, it is unclear if people reporting these understand the real problems. Perhaps there is no accurate numbers on the magnitude of damage. Different sources quote different figures. Perhaps it's not the numbers that matter now, it's the fact that even today - 30 years later the ghost of the tragedy haunts the residents of the city - mentally, physically and financially.
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.
