Wanted: half a million donors... Indian patients miss out on life-saving stem cell therapy due to lack of matches



Three-year-old Neeti (name changed), who suffers from Thalassemia, has been waiting a long time for a blood stem cell transplant that could cure her illness.

Thousands of Indian patients are in a similar situation because of the difficulty in find a genetically matching donor.



With few registered donors available in the country, the possibility of finding a genetically matching donor for an Indian anywhere else in the world too is low.



Finding a genetically compatible stem cell donor in India can be an uphill struggle

Considering the number of people suffering from Thalassemia and other blood-related disorders like leukemia, health experts believe there should be at least half a million donors.



Currently, there are four registries in India but only two are functional - DATRI, a south India-based stem cell registry started in 2009 which has around 56,000 registered donors, and Marrow Donors Registry India at Tata Memorial Hospital in Mumbai.



Recently, Garvit Goel, a two-year-old in the national capital suffering from Thalassemia, was paired with an unrelated blood stem cell donor, Sumeet Mahajan, a software professional from Bangalore, through DATRI.

Garvit was declared free from the blood disorder following a stem cell transplant from Mahajan. This was the first reported adult unrelated transplant from an Indian registry to cure Thalassemia.



Garvit's transplant was done at BLK specialty hospital.



"As a result of evolutionary history, endogamy and consanguinity, populations of the Indian subcontinent demonstrate high genetic differentiation and extensive sub-structuring. Ancestry is unique to India," said Dr N.K. Mehra, head of Immunology and Immunogenetics at the All India Institute of Medical Sciences (AIIMS).

"Indian groups have inherited different proportions of ancestry from the ancestral North Indians and the ancestral South Indians. Hence, consistent with social history, northern regions show closer affinities with Indo-European speaking populations of central Asia as compared to those inhabiting southern regions."



Mehra said the southern Indian population may have been derived from early colonizers arriving from Africa.



"This genetic matching is difficult to find for an Indian donor," he said.



A transplant from a healthy unrelated donor replaces flawed stem cells with healthy ones that can generate healthy red blood cells and cure Thalassemia. The goal of the transplant is to rebuild the recipient's blood cells and immune system and cure the underlying ailment, and avoid or obviate the need for frequent blood transfusions.

"The existence of a large variety of alleles and haplotypes (genetic components), both unique and representative of other ethnic groups in the Indian subcontinent, poses additional challenges in the transplantation context, particularly with regard to hematopoietic stem cell transplantation," Mehra said.



Even after patients find suitable donors, there are low chances of the donor turning up due to myths related to donation like pain and weakness, doctors claimed.

