90% Thalassemic in India die before reaching adulthood: Know the Solution

-Divya Gupta
Volunteer Genebandhu 

Growing up every kid dreams of becoming a doctor, an engineer, a pilot or even a teacher. But all 10-year-old Krishna Dhamecha wishes to become, is a healthy boy free from the cycles of blood transfusion, medicines and unending hospital visits. For the last nine and a half years, Krishna has been fighting a silent battle, each day, against his fate of being Thalassemia.

 Inadequate knowledge resulting in ignorance at the time of conception proved to be too costly for the young child. In spite of undertaking all the major tests to be performed, they escaped the Hb test which would inform whether the unborn child could be Thalassemia major or not.

 According to a research paper in the International Journal of Pharmacy and Pharmaceutical Sciences published by the University of Rohtak, India, 10% percent of the patients suffering from Thalassemia worldwide are born in India. Communities like Sindhis, Gujaratis, Punjabis, and Bengalis, are most commonly affected with beta-Thalassemia, the incidence varying from 1 to 17%.

There seems to be a sheer lack of awareness about voluntary stem cell donation in India. Poor representation of India in the global stem cell database (less than 1%) thereby puts patients suffering from blood cancer and Thalassaemic patients of Indian/Asian ethnicity at grave risk. This further drives up the cost of Bone Marrow Transplant if the donor is present outside India. Consequently, making it less affordable, leading to a glaringly high number of deaths.

 A report published by WHO states that more than 90 % patients suffering from Thalassemia in Western countries lead a long and normal life. In contrast, more than half of such patients in India die before reaching adulthood.

There is thus a dire need to expand the Indian stem cell donor database to decrease the number of people suffering and dying of Thalassemia and other blood disorders.

 A potential solution is to match the patient’s genetic map against a database of voluntary stem cell donor. The larger the databases, the higher the probability of finding an unrelated genetic match. Even though around 75 stem cell registries exist worldwide with over 28 million voluntary stem cell donors, biological factors nullify this option for Indians suffering from blood disorders across the globe since the genetic pool of the Indian population is conserved and diverse.

"Being a patient-donor search coordinator of Genebandhu, I usually receive around 15-20 search requests per month solely for Thalassemic patients, who are unable to find a suitable match in their family for bone marrow transplant. But a very small percentage of them are able to find a voluntary stem cell donor because the database of registered voluntary stem cell donors is very small in India. So we conduct awareness drives, educate masses about the cause and request them to come forward and register themselves as voluntary stem cell donors because any one can need a stem cell donor at some point of time”
-              Mr. Vikash Chandra Mishra, Pateint Services Head Genebandhu.

Only a donor who is an exact genetic match to the patient can make a stem cell donation. Only 25% of patients suffering from blood disorders have a chance of finding a genetic match with their siblings, whereas the remaining 75% depend on stem cell registries for finding an unrelated genetic match.

 Even if a patient finds a potential match in a global stem cell registry, the high costs of stem cell transportation, medical tests and treatment go beyond the comprehension for most people are unaffordable for a majority of the Indian population.

 The expansion of an Indian database of voluntary stem cell donors will increase the chances of finding an unrelated genetic match for patients of blood disorders and make the process of stem cell donation and bone marrow transplant more affordable.

 "God gives us once a while an opportunity to represent HIM. Being a stem cell donor for a Thallasemia child you could avail of this opportunity to represent HIM. On behalf of our Genebandhu team, I invite you all to be a part of this" world brotherhood” mission". Say, Dr. Vimarsh Raina, Found and President of Genebandhu Ex-Director Pathology , Laboratory Medicine & Transfusion Medicine at Medanta - The Medicity Hospital