Stem cell transplantation: Why India needs more donors

Every year in India, thousands of children are born with blood disorders like thalassemia major and sickle cell anemia—conditions that condemn them to a life of regular blood transfusions, chronic pain, social stigma, and premature death unless they receive a curative treatment: a stem cell transplant.

While medical science today offers hope, access to that cure remains elusive for most Indian children, not because the treatment doesn’t exist, but because some don’t have donors and others do not have enough funds to afford the treatment.

The first issue—the lack of donors—can be addressed very effectively if people come forward. Unrelated stem cell donors can help thousands of patients who cannot find matched donors within the family.

India has the highest number of thalassemia major patients in the world, with an estimated 100,000 requiring lifelong blood transfusions and chelation therapy. Each year, 10,000 to 12,000 children are born with the condition. Sickle cell anemia—another severe and painful genetic blood disorder—primarily affects tribal and rural populations across states such as Chhattisgarh, Odisha, Maharashtra, Madhya Pradesh, Gujarat, and Telangana.

These are not rare diseases, yet often overlooked public health challenges. While gene therapy and new drugs offer hope for the future, the most definitive cure currently available for these children is a stem cell transplant, also known as a bone marrow transplant.

A common barrier to donor registration in India is fear—of pain, of long-term health effects, and of the unknown. But, the fact is donating stem cells today is no longer the invasive, painful process it once was.

How it is done:

In over 90% of cases, we now use Peripheral Blood Stem Cell Collection (PBSC)—a process much like donating blood or platelets. Before donation, the donor is given a medication called G-CSF (Granulocyte-Colony Stimulating Factor) for five days. This helps increase the number of stem cells in the bloodstream.

People often express concern about G-CSF, fearing long-term side effects. But G-CSF has been used safely in healthy donors for decades. The side effects are generally mild and temporary—such as body aches, fatigue, or mild fever—and resolve quickly after donation. Global data from hundreds of thousands of donors show no significant long-term risks. Stem cells regenerate naturally within a few weeks.

Despite the safety and simplicity, myths prevail in India—fuelled mostly by a lack of awareness and cultural resistance to donation. Many families refuse to let even willing young adults donate, fearing future infertility or weakness, none of which are backed by science.

The success of a stem cell transplant depends heavily on finding a genetically matched donor. Unlike blood donation, a match isn’t determined by blood group but by HLA (Human Leukocyte Antigen) typing. The odds of finding a match improve significantly when the donor is from the same ethnic background. This is why India needs Indian donors—matches are ethnically specific.

Challenges:

Globally, there are over 40 million registered stem cell donors, but less than one million are from India, a country of 1.4 billion. The disparity is staggering.

In the United States, where more than 23 million donors are registered, 7 out of 10 Caucasian patients can find an unrelated donor match. In Europe, the odds are similar or better, thanks to strong registry participation—countries like Germany and the UK have high per capita donor registration rates due to consistent awareness campaigns and public trust.

In sharp contrast, only 1 in 10 Indian patients find a suitable unrelated match when they need it most. The disparity is even worse for Indian-origin patients globally, who often struggle to find matches despite access to international databases.

This gap highlights the urgent need for more Indians—especially young, healthy adults—to register as potential stem cell donors. Without that, even our most advanced hospitals and experienced transplant teams can do little to save a child without a match.

Some international and national organisations such as DKMS (Deutsche Knochenmarkspenderdatei), Be the Match, Daatri has made remarkable progress in promoting stem cell donations. Some of these organisations—DKMS, for example—operate in multiple countries, including India, and have helped register millions of donors worldwide.

Yet, the challenges in India are uniquely complex. A degree of mistrust in medical institutions often leads families to question the intention behind donor drives; social stigma around disease and donation makes it hard to hold community campaigns, especially in rural or conservative areas. Besides, the lack of national programs to integrate donor registration into public health policies limits reach and scale. 

We must recognise that this is not just a medical problem—it is a societal challenge that requires mass education, policy support, and grassroots mobilisation. I believe that providing donors with comprehensive pre and post-donation medical care and support can go a long way in encouraging more people to come forward. We should celebrate stem cell donors with the same respect and recognition we give to blood and organ donor

As a BMT specialist, I have seen both heartbreak and hope. I have witnessed parents carrying their children to our hospital for blood transfusion. In many cases, after a few years, children face many transfusion-related complications. If transfusions are not happening at an established center, there is a risk of veins collapsing, and iron overloading. I have also seen the same children, months after a successful transplant, running down the hospital corridors, cured and smiling.

That transformation is possible—but only if people come forward. Registering as a donor takes just a simple cheek swab, and donation is now as easy as giving blood. By doing so, you can save the life of a child who otherwise has no future.

We are at a crucial juncture where science, compassion, and action need to come together. The cure for children with thalassemia and sickle cell anemia exists, what is missing is public will and awareness. Anyone between 18 and 50 years of age, in good health, can become a lifesaver by choosing to register as a stem cell donor.

 

The writer is a paediatric haematologist and a bone marrow transplant specialist in New Delhi. He is also a researcher innovating cell therapy solutions.

The opinions expressed in this article are those of the author and do not purport to reflect the opinions or views of THE WEEK. 

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