It is well known that children suffering from thalassemia need blood transfusion and iron chelation every month. While the suffering and pain is borne by the child, the financial implications of this regular routine are quite demanding for many families. In the past we have seen that a few families shun the idea of regular management owing to the lack of financial resources.
Since 2011, at our thalassemia day care centres in Bangalore we are looking to make management of thalassemia and not the financial aspect related to it as the point of focus for patients and their families. Through the introduction of technology and by forging meaningful partnerships with hospitals, blood banks and vendors, we have been able to significantly reduce the cost of management per child. Families are now looking at a better way of life for the child and see hope in regular management and care. That is when we explored the option of permanent cure and put together a system in place to deliver the same.
Sufficient ground work was done to analyze the intricacies both from a medical and financial perspective. Today, having had the experience of going through 6 successful Bone Marrow Transplants (with 4 more children going through the process as this edition goes into publication), we believe that the time is right to rope in children from across Karnataka into this ambit of providing cure. We now believe that the option of exploring permanent cure from thalassemia is both real and accessible for the poorest of poor families.
HLA typing which typically costs Rs 40,000/- upwards for each family is being offered free of charge to every child suffering from thalassemia who is less than 13 years old and who has a sibling. Speaking to blood banks and patients from across the state, we realize that there are more than 1200 patients in different pockets of Karnataka who are unaware of this option. They continue to face the burden and challenges of regular visits, blood transfusions, tests and medicines. They need to be educated about the aspect of permanent cure.
This is where the blood banks have a huge role to play. We invite the blood banks to educate the patients about the possibility of getting HLA typing done. All that the family suffering from thalassemia need to do is call our central helpline number 9480044444 and seek an appointment. We urge the blood banks to take this message to each child suffering from thalassemia. We will be happy to help the blood banks with educational brochures. This would ensure that the option of cure does not restrict itself to the educated and well-to-do families and rather percolates to every family.
Sankalp is also keen to collaborate with centres from across the state to share best practices and forge a relationship to setup a practice of delivering systematic care and management for children with thalassemia in Karnataka. We are looking at institutions who are willing to join hands for the same. Kindly call us at our central helpline or leave us a mail at sankalp.admin@gmail.com to get started.
Please join in the movement. Every child with thalassemia deserves good management and every eligible child must be given the chance to permanent cure. It is the blood banks that can revolutionize this movement!
Sufficient ground work was done to analyze the intricacies both from a medical and financial perspective. Today, having had the experience of going through 6 successful Bone Marrow Transplants (with 4 more children going through the process as this edition goes into publication), we believe that the time is right to rope in children from across Karnataka into this ambit of providing cure. We now believe that the option of exploring permanent cure from thalassemia is both real and accessible for the poorest of poor families.
HLA typing which typically costs Rs 40,000/- upwards for each family is being offered free of charge to every child suffering from thalassemia who is less than 13 years old and who has a sibling. Speaking to blood banks and patients from across the state, we realize that there are more than 1200 patients in different pockets of Karnataka who are unaware of this option. They continue to face the burden and challenges of regular visits, blood transfusions, tests and medicines. They need to be educated about the aspect of permanent cure.
This is where the blood banks have a huge role to play. We invite the blood banks to educate the patients about the possibility of getting HLA typing done. All that the family suffering from thalassemia need to do is call our central helpline number 9480044444 and seek an appointment. We urge the blood banks to take this message to each child suffering from thalassemia. We will be happy to help the blood banks with educational brochures. This would ensure that the option of cure does not restrict itself to the educated and well-to-do families and rather percolates to every family.
Sankalp is also keen to collaborate with centres from across the state to share best practices and forge a relationship to setup a practice of delivering systematic care and management for children with thalassemia in Karnataka. We are looking at institutions who are willing to join hands for the same. Kindly call us at our central helpline or leave us a mail at sankalp.admin@gmail.com to get started.
Please join in the movement. Every child with thalassemia deserves good management and every eligible child must be given the chance to permanent cure. It is the blood banks that can revolutionize this movement!
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