Celebrating a Decade of Thalassemia Care


It's been 10 years since we started the thalassemia day care centre at Indira Gandhi Institute of Child Health, Bangalore. The momentous journey that started from making an attempt to give a fair chance to a few kids evolved into a mission for a Thalassemia Free India. Driven by evidence, perfecting delivery and a never-ending quest to do what is right has transformed the lives of so many people - those who received care, but also those who have been involved in care giving.

A unique facet of our program is the design which ensures that the mirror is always held up and we are kept aware of the shortcomings. In our pursuit of equitable healthcare, while we have come a long way forward, it's a long way ahead. The major transformation has been in the ability to replicate the gains we make in the program at more centres, something that has allowed us to grow quickly to 15-day care centres over these years, a number which needs to continue to grow.

Shall we rejoice the achievements? Maybe! However, last 2 years have dealt a body blow to us. With Covid-19 a lot of what we had put in place stood up and delivered, but there were aspects which took a toll. The overall haemoglobin levels have dipped a bit. For the first time we had some of the patients being requested to get blood donors. The system is yet to come back to normalcy. And therefore, the appropriate thing to do is to learn and build more resilience into the system. We don't know if Covid-19 will continue. Surely, this is not the last pandemic. What we intend to do is to push ourselves to build systems more capable of handling the challenge and ensure that we are able to deliver quality equitable treatment to our children. This of course is no small goal and yet, the ball is now rolling. This includes increasing Sankalp's capacity to collect, process and make available more units of blood and strengthening our lab services.

We did an objective assessment of our performance by looking back at the first 100 kids who enrolled in our program. Twenty-five of those went on to receive a bone marrow transplant at our centres. 7 died while receiving regular treatment for thalassemia. 7 dropped out. Remaining continue to be in our care, many of whom are candidates for transplant and still have an opportunity for cure. 21 of them are now over 18 years of age. We are grateful to the families and those who contribute to the program in multiple ways that the promise to give life a better chance that we made to these little ones and their families seems to have been made good. 

At the time of enrolment, 2 of these 100 patients already had one of the three transfusion transmitted infections. The amazing story here is that we ended up transfusing about 16200 units of blood to these first 100 patients in the last 10 years and we note that just 1 of them has developed a transfusion transmitted infection. None of those who continue to receive treatment have any alloimmunisation or reported transfusion intolerance.

We had 8 pairs of patients who had a sibling with blood disorders who joined the program indicating a high failure rate of thalassemia prevention. Once enrolled with us for thalassemia care, subsequent pregnancies of at-least 11 mothers were successfully screened for blood disorders. However, one family did not opt for antenatal screening and ended up having 2 more kids with blood disorders subsequently.

To see these little children, grow up and join society as competent and contributing young men and women has been an amazing journey. It's a matter of great pride for Sankalp to share that one of the first 100 kids, when on to receive his transplant at our centre and now introduces himself as employee of the organisation - a part of Team Sankalp.

Looking back, we are glad that as an organisation we chose to fight thalassemia and we are glad to have chosen evidence driven systematic approach for this goal. Sleeves continue to be rolled up, intent clear and roadmap well drawn. The quest for #ThalassemiaFreeIndia continues.

Patrika Section