In 2013 a professor of psychology at Stanford University died of leukaemia (a disease that affects the white blood cells in our body) at the young age of 54. She was a true pioneer: After finishing college from Lady Sri Ram in Delhi she moved to the United States and was the first Indian-American woman to teach psychology at Harvard, Tufts, and then Stanford. Ironically, the very fact that she was of Indian origin played a hand in her untimely death. I learnt about her story quite by accident. Few years back I was enjoying a weekend off when I received an unexpected page from the hospital operator. It was a call from India, not a patient. I took the call and was pleasantly surprised that it was a former high school friend. The news was unfortunately grim as his young child had been diagnosed with leukaemia and he was enquiring about the possibility of a bone marrow transplant in India and abroad. As I looked more into this, I realised that there were a number of appeals on the Internet from Indians in India and abroad who were organising donor drives to find a match for themselves, a friend or a family member. One such person was Nalini Ambady whose friends and family had launched a global drive to find a suitable donor. They were apparently successful at finding a match, but unfortunately the donors backed out and she succumbed to her disease. Being a cancer doctor, her story hit close to home. The tragedy is that nowadays Indians can afford a bone marrow transplant, but cannot get one because of lack of donors. Here is the scope of the problem and ways to help:
1. What is a stem cell transplant?
Stem cell transplant (also called bone marrow or peripheral blood transplant) is when you take blood cells that are very early in development (called stem cells) from a donor and give them to the patient to help them fight their disease. To clarify, the stem cells that we talk about here are not from embryos (that are being used to regenerate other organs), but are cells that lead to formation of various parts of blood.
2. What are the different kinds of transplant?
There are two kinds
(a) Autologous Transplant: This is when a person's own cells are harvested and given back to him or her after chemotherapy. This is useful in diseases like lymphomas and myelomas but are not very useful in cancers of the blood known as leukemias.
(b) Allogeneic Transplant: This is mostly used to treat leukemias and utilises the stem cells from their siblings (brother or sister), cord blood or blood from an unrelated donor. Our focus is on allogeneic transplants.
3. Why do we need donors?
The main job of our immune system is to look out for cells that are foreign to us and to try and destroy them. One of the ways our immune system distinguishes own from foreign cells is by the Human Leucocyte Antigen (HLA) system. We inherit a set of HLA antigens from our mother and one from our father. Transplant requires that both the donor and the recipient are a perfect HLA match (for the most part). However, the chance that two siblings have the same HLA system is 25 per cent. Thus, the greater number of brothers and sisters, more chances of finding a donor. In today's day and age, majority of couples are choosing to have smaller families, thus decreasing the chance of a match. Cord blood from one infant is usually insufficient to transplant an adult. A person's own stored cord blood cells are also not useful as this is similar to an autologous transplant. In rare occasions a sibling's cord blood may come in handy, but the chances are extremely slim. Hence, we desperately need unrelated donors to provide life-saving stem cells to patients.
4. Why is it so tough for Indians to find a donor?
Answer is simple: Indians have not stepped-up to sign-up for the registry and even if we sign up, when the time comes to donate there have been cases of people backing out (As was the case with Nalini Ambady). As HLA antigens are highly dependent on race and ethnicity, one is most likely to find a match from people with a similar ethnicity. There are upwards of 1 crore people registered in national registries like the National Marrow Donor Program in America. Unfortunately, minorities including people of Indian origin are grossly underrepresented. The chance of a white person finding a match is 50 per cent which drops to 10 per cent or lower for other ethnic groups (some people have quoted chances as 1 in 20,000 for Indians). What does that say about us as a people? If it happens to a family member: all hands on deck, but let's not make that extra effort to help a stranger in need, even if the inconvenience is minimal and it can end up saving someone's life.
5. What are the barriers to being a donor?
The main barrier is lack of information, preconceived notions about possible harm to self and resources. Large registries exist in western nations and becoming a donor for them is free. In India, there are two bone marrow registries; DATRI and Marrow Donor Registry, India (MDRI). The cost of becoming a donor on DATRI is Rs 2500 (that they use for HLA typing). The MDRI is free of charge. In spite of this, there are only about 20,000 donors registered in each of these registries (compared to over 1 crore in western Registries).
The other barrier is fear of risks involved in donation. The important thing to remember is that the risk to donor is minimal, if any. The two donation methods are bone marrow and peripheral blood stem cells (most commonly used). Peripheral blood stem cell donation is similar to a blood donation. For five days before the donation, the donor takes injection of a drug that increases white cells in the body and then blood is taken out through a needle in the arm and a machine separates out the stem cells. The remaining blood is returned through the other arm. Only about 1-5 per cent of the marrow is required for donation and (this is the important part) the human body makes this blood which has been donated back in 4-6 weeks with no residual side effects!
6. How does one become a donor?
Becoming a donor is easy and involves either a cotton swab of inside of your cheek (this is the most common method) or a small blood test. You can contact the MDRI or DATRI registries in India or the bone marrow registries in the country you reside in.
7.How do we fix this problem?
(a) Become a donor and encourage your friends and relatives to do the same.
(b) Bank your babies' cord blood with a public bank and not privately. Storing cord blood for private use later is not recommended by American Society of Blood and Marrow Transplantation, the American College of Obstetricians and Gynecologists, and the American Academy of Pediatrics (The only exception is if the baby's parent or brother /sister have a disease that can be treated with cord blood transplant). More about this in an upcoming blog.
c) The Government needs to put resources to create universal and easily accessible public cord blood banks and should work to increase awareness amongst the public.
So, let's do our bit towards making a world a better place. Sign up,donate and who knows: one day you might just end up saving a life!!