There isnt funding for just Thalassaemia it is covered with everything else through the government which allocates a certain yearly amount to the various health boards. As I am registered under Dr Blacklock, my transfusions are covered by her department's budget.
Anything else that I need like scripts are paid out of my own pocket unless the government has part subsidized it.
The equipment like syringes, needles, saline, heparin lock, heparinized saline, gloves...etc that I need for to administer my desferal or access my port is given to me by the haematology clinic where I receive treatment.
The cost of the desferal is part subsidised by the government and I pay the rest which is normally $15 each script.
The cost of the pump is around $5000 and at the moment my Dr is trying to get the cost covered by the hospital board as there are 5 of us who use desferal and our pumps are obselete which means more forms to fill out and if thats a no, we will look at fundraising.
There is also The Leukaemia and Blood Foundation who raise money to help with ongoing research, patient support and the making of blood products donate as well. These are a few of the things this foundation does. A couple of years ago they donated $500 to help me go to Australia to meet people like me.
I hope this has answered your question.
Another form my haematologist is filling out is for the chelating tablet exjade. She is writing to the government to look at subsidizing this. This is her fourth attempt. I am crossing my fingers.
