NE HEALTH BUREAU
AHMEDABAD, NOV 19
The CIMS Multi Super Specialty Hospital, Ahmedabad in association with Sankalp India Foundation has reached a milestone of performing 150 successful bone marrow transplants saving the lives of thalassemia major children and adults, Dr Deepa Trivedi, Programme Director, Sankalp CIMS Multi Super Specialty Hospital, Ahmedabad Paediatric BMT Unit has said.
Addressing the media on Thursday, Dr. Deepa Trivedi said the hospital established the BMT unit in 2017 as a step in the direction of making India thalassemia-free. The initiative is supported by Cure2Children an Italy based organization that provides medical knowledge, clinical management support and patient funding on a need basis. In a span of five years, this specialized unit has performed 150 BMT transplants giving hope to many families.
Thalassemia is one of the most prevalent blood disorders in the world. In India, more than 10,000 thalassemia major children are born every year. This is because in most cases, parents do not know they have thalassemia minor and learn about it only when a child suffering from thalassemia major is born. The only curative treatment for thalassemia is bone marrow transplant from a Human Leukocyte Antigens (HLA) matching donor.
“Sankalp India Foundation takes care of patient preparedness, financial and personnel planning, whereas CIMS Multi Super Specialty Hospital, Ahmedabad provides essential clinical services and infrastructure as a part of the philanthropic collaboration. We are pleased to inform that we have helped 150 children and their families with this initiative. Also there is a waiting list of 80 more children and we are working on their treatment plan. We aim to help many more children get rid of thalassemia and lead a healthy and happy life,” said Dr Deepa Trivedi, Programme Director, Sankalp CIMS Multi Super Specialty Hospital, Ahmedabad Paediatric BMT Unit.
129 patients, with a median age of 8.6 years, have been offered a fully matched related donor transplant with an overall survival of 96% . 21 patients with a median age of 8.1 years have been offered partially matched related donor transplant with over 85% survival..
Dr. Lawrence Faulkner, Medical Director, Sankalp India Foundation and Cure2Children, said, “Completing 150 transplants has unquestionably been a major achievement by the whole team. Even more importantly, these outstanding outcomes have been obtained at a fraction of the cost as compared to western centres. I am not aware of any centre globally that has performed better in terms of value delivery to patients and their families.”
Lalith Parmar, President, Sankalp India Foundation, said, “We are glad that the dream taken up to cure children of thalassemia in the western belt of the country has progressed so well over the years. This has been possible thanks to the unwavering support of CIMS Multi Super Specialty Hospital, Cure2Children and donors. We are committed to our initiative to take care of more children with thalassemia in our mission to build a thalassemia-free India. We are indebted to the Gujarat Government for its continuous and unstinted financial support for our humanitarian services.”
The subsidized cost of one bone marrow transplant is around Rs. 9 lakh for a fully matched related donor transplant, and Rs. 14 lakh for a partially matched donor transplant. The children’s families pay around 30-35% of the cost, the Gujarat government provides 25%, and the rest 40-45% is raised by Sankalp India Foundation through donations.
HLA matching is the first investigation before planning a bone marrow transplant for thalassemia patients. To date, the Sankalp CIMS Multi Super Specialty Hospital Paediatric Bone Marrow Transplant Unit has offered HLA typing to more than 1,000 families.
“The Sankalp – IMS Paediatric Bone Marrow Transplant Unit aims to do more transplants in the coming years and also take up transplants for other conditions like Severe Aplastic Anaemia in the near future. This unit also offers telemedicine facility to monitor the patients and offer consultancy services,” said Dr Amit Chiltaliya, Senior Paediatric Critical Care – CIMS .
Dr Vaibhav Shah said, “Sankalp India Foundation takes care of the needs of all thalassemia patients right from pre-hospitalisation to post-transplantation for one year. We manage crowd funding to ease the burden of the patients’ families. We want to convey the society that we are working with missionary zeal to offer a ray of hope to all those who need BMT.”
Dr Deepa Trivedi, in her vote of thanks, said, “This momentous achievement would not have been possible without the close collaboration with many NGOs, philanthropists, our pathologists, microbiologists, blood bank and apheresis team, intensivists, and nursing staff. We would also like to extend our gratitude to all our patients and their families for placing their trust in the care that we provide, for their ongoing collaboration and for providing the inspiration and motivation for us to continually do better.
Thalassemia minor couples can avoid passing on the disease to their children by undergoing screening at the time of pregnancy. The test costs only Rs. 500, and is the key to stopping thalassemia cases, but few couples undergo it because of lack of awareness. The foundation is also working to generate greater awareness about thalassemia and the available treatment.
