‘India has 1.4 billion people, yet we struggle for stem cell donors’

Despite India’s vast population of 1.4 billion, the country faces a shortage of stem cell and bone marrow donors. Yet, Karnataka stands out positively in this scenario. “Based on data from February 1, 2024, Karnataka represents approximately 40,000 donors from a total pool of 1,83,000 registered blood stem cell donors in our database,” says Patrick Paul, CEO of DKMS Foundation India, a non-profit organization that strives to help patients with blood cancer and blood disorders like thalassemia and sickle cell disease find matching donors by maintaining a registry.
Stem cell transplants play a vital role in treating individuals affected by blood cancers and disorders such as thalassemia and aplastic anaemia. A significant number of patients are currently seeking compatible donors, making it essential to broaden the donor database.
Currently, only 17% of patients with blood disorders in India find a match, says Paul adding “In Germany, having a population of 80 million, we have seven million donors”.
Eight-year-old Shia, who battled Thalassemia and hails from West Bengal, feels fortunate. Her life changed when Debojyoti, a 30-year-old techie from Bengaluru, stepped forward as her donor. Having registered as a potential stem cell donor in 2016, Debojyoti gave Shia a second chance at life. The young girl experienced incredible moments when she finally met her saviour four years ago.
For people with thalassemia major, stem cell transplant offers much hope. “The probability of finding a matching donor significantly increases when searching within your family members. In the absence of a family match, unrelated donor options through registry services are explored,” explains Dr Govind Eriat, consultant-Hemato Oncologist and Bone Marrow Transplant, Gleneagles Global Hospitals, Bengaluru.

Thalassemia, a concern in Karnataka

It is estimated that there are almost one lakh Thalassemia patients in India, with around 10,000 fresh cases reported every year.
Speaking about the prevalence of blood disorders in Karnataka, Gagandeep Singh Chandok, president of the Thalassemia and Sickle Cell Society of Bengaluru said, “The state and central governments are yet to create a registry and hence there are no official numbers available.”
According to the National Family Health Survey (NFHS-5), Karnataka has the second highest number of inter-family marriages in the country. Experts point out that partners in blood-related marriages face increased probability of their children being born with Thalassemia. “When two carriers of thalassemia minor genes marry, especially in cases of close familial relationships such as consanguineous marriages, their offspring may inherit two defective genes, resulting in thalassemia major. These patients require transplantation due to the absence of functional haemoglobin,” says Dr Govind. Whilst not a malignancy, the condition’s severity and impact on life quality parallels that of cancer, he adds.
Paul notes that around 60% of donors enrolled in registries in India decline upon deeper consideration of the implications. “Young people make up much of our donor base. When they discuss donation with their family members, who typically have limited understanding of the process, it leads to a series of worries about the effects and ramifications of donating,” he says.
Being a donor doesn’t alter one’s physical being. However, the emotional impact can be profound because assisting someone in desperate need of help gives you a sense of fulfilment, says Paul. It might be the sole opportunity for that patient to receive a fresh lease of life. Indeed, you become a lifesaver through this noble act.

Who can be a stem cell donor?

Any adult between the ages of 18 and 50 and in good health can be a donor.
A simple cheek swab is collected during stem cell registry screening, and the information is entered into the database. Once a matching patient is identified, the donor is contacted for stem cell donation.
The stem cell transplant procedure typically resembles a platelet donation. The stem cells usually regenerate within three months.