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.
A few minutes back I had crossed a lady who is bringing her child from Hassan to Bangalore for treatment. She was resting in the sun while her child received transfusion. I don't know why exactly, but I called her for help. She walked down with an inquisitive look on the face. In broken language I told her that I needed her to explain how the care was given at the centre. She understood what I meant. Turned towards the other family and spoke for the next 5 minutes. I have been into public speaking from my early childhood and one of the things that does not escape my attention is the confidence when a person speaks. I also understood what she said. And I am absolutely confident that there have been few occasions when I have seen someone talk about the need to give children proper care for thalassemia the way this lady did. I stood there in awe - admiring her.
Last few months I have come across national and international experts speak about thalassemia. I have seen many people talk about thalassemia. Here was a lady right in front of me - uneducated - staying in a far flung village explaining to the parents why transfusions alone were not okay. She was talking about chelation and tests. But in my opinion the conviction, the content and the confidence that this lady had about the need for proper management. was one of the most impressive I had seen. It was truly refreshing to see her speak - and to be honest, there was a sense of pride I had in that moment. Of-course the parents were convinced and promised to come each month.
The great feeling I had that day was in stark contrast with what I face on a day to day basis. I often visit medical facilities and come across parents from all kind of socio-economic backgrounds.
Some people are easier to yell at, to keep waiting, to talk to rudely, to be ignored and to be ill-treated. In the same medical facility, with the same staff and same payment structure, the treatment meted out to a poor family widely different from that given to relatively educated and resourceful families.
I sent a little angel to a healthcare facility that I really trusted. A few days later I met her and I asked her if it was alright. She smiled and nodded. I knew something was amiss. I encouraged her to tell me more. She said that everything was okay but she was made to wait the whole day and run up and down multiple times - something that is very painful for a person with a bad bones with metal to support. I was shocked and speechless. I wondered whether it is insensitivity on the part of the medical team alone or whether she was treated like a free to punching bag by the people who were involved in her care. I mentioned this one instance because this one really broke my heart. But let me come to the larger picture.
Why is it that we find it so easy to vent out all our frustration and anger on the poorest and the most helpless? Is it because we know they are less likely to answer back? Is it because we think we can fool them? Is it because sometimes - even subconsciously we tend to be biased towards the more resourceful and powerful? What is more unfortunate is that most people who I sensed indulging in such discrimination don't even realise this. It is just taken for granted and acceptable - sometimes even to those who are at the receiving end.
And who knows, this little difference in attitude, especially in healthcare may be contributing significantly to adverse outcomes.
We at Sankalp have committed ourselves to making sure that we support the needy irrespective of their financial background. By needy, I mean the people who need help. I mean the people who need blood. I mean the parents who need to support their children throughout the lifetime for thalassemia management. And one of the very important step in the direction of ensuring that we realise our goal will be to fight this discrimination - if not everywhere - at least in the places where are involved with care and management. There is no excuse not to treat a human being with a basic level of dignity.