Last year, I lost a dear friend to a rare and fatal medical condition. This friend was the hub of our old-fashioned social network of school buddies. Unlike most classmates, she lived and worked in the same town and continued to be the wonderful person liked by everyone. Those of us who had migrated to different corners of the world visit her when we make it back to our little hometown. I cannot describe the shock that I felt when my mother called up and told me the heartbreaking news of her sudden and unexpected death. Once I calmed down, the first thing I did was to search for the medical term that my mom mentioned. I had this urge to find out what had caused it, whether it could be stress, or ignorance of any symptoms. Most of all, I wanted to find out if something could have helped her. That is when I got my next round of shock. All the sites that talked about it said it was a rare case with 60-80% mortality rate. And the probability of it happening to anyone is approximately 1:20000. All of a sudden, I felt like I had to talk to my school friends. The memories of our school years flooded me and I could picture us all in our school uniforms. The years in between seemed to have melted away. For couple of days after that, I talked to many friends, some of whom I had not talked to in a decade. I called some, others called me and we were all talking to each other. All of us had the same thing to say. There was nothing we could have done to help her. It was a blow of fate and we just had to accept it. I do not want to name the medical condition as there seems to be no plausible cause or cure for it. If anyone reads this note and starts searching for that term, it will just leave them depressed and worried for no reason.
Fast forward few months. I again come across the same probability of 1:20000. But this time, 1:20000 is the chance of a person finding a cure for her fatal illness. I do not know her directly but just learning about her odds struck me and made me wonder why it is so. Realizing that the odds of finding a cure for similar illness in people from other ethnicities (like British or U.S) are far better left me thinking; thinking about my friend whom I had lost. It felt strange how two unrelated things got tied together in my mind. When I called my mother and described the situation to her, I was surprised by how she sounded out the thoughts that were floating in my head. She mentioned about my friend pointing out how none of us could have done anything to help her. And how this person could be helped. Surprised by the mind reading, I went back to real reading. I continued reading more about life-threatening blood disorders that affect more people than I fathomed, how some of these serious conditions can be cured by a stem cell transplantation, and the low probability for a person of Indian origin to find a matching donor. I also came across many articles that describe the struggles some folks are facing to find a matching donor for their loved one. Until new treatments are discovered, stem cell transplants are the only option for many.
This brings us to another statistical observation. Fewer people in India are finding cure for certain types of blood disorders and cancers compared to those in developed countries. Let us try to figure out the reason by asking some simple questions.
- Is it due to the lack of facilities and well qualified doctors in India compared to other developing countries?
- Is it due to the shortage of donors in stem cell registries in India because of a lack of awareness, fear or cultural aspects associated with registering?
- Are there better chances if an Indian living in a more developed country is afflicted by the same illness?
If the answer to the first question is yes, it would make many of us happy in some ways. We have something to blame and point our fingers at. This would be discussed widely and everyone will be waiting to chip in their suggestions to improve education and infrastructure. Improvement may help in some cases but may not solve the specific problem completely. At least for certain disorders, the answer to the first question is no. There is no purpose in adding facilities or personnel if a matching stem cell donor could not be found as soon as possible. In a vast majority of cases, this limitation of available donors has become the bottleneck in a patient’s treatment plan
If the answer to second question is yes, then the finger is pointing back to us. We may not realize that the finger is actually pointing to us mostly because of lack of awareness.
It is easy to get bogged down by the medical and scientific terms surrounding such topics. Not everyone is ready to absorb more information than is needed for their daily life.
This was my case. I glance at things and not pay attention unless needed. When I saw an invitation to like a page with some name that did not sound familiar and invitations for some “Peripheral Stem Cell Donor Registration Drive”, I did not bother to check it out immediately. When these kept repeating, I opened one and saw the seriousness of the situation.
But these were happening back in India. Though I felt for the person, there was nothing I could do. That is what I had thought. At one point, I got curious and started searching. There was a whole lot of information on the Internet and I found out that there are numerous ways I can help irrespective of my location.
I can attend a local drive if there is one in the place where I live or even order a home kit and register myself as a stem cell donor. In my case, I did the latter. I can pass the information with my list of contacts and this could potentially make more people come forward and register.
Then, I realized it is very easy for people to ignore my requests as spam. Though there is information about saving lives, the fact that having more people on the registry is important may not be obvious.
For general blood donations, there are only a few groups of blood and finding the matching group is not so difficult. This is not the same for stem cells. They have to be a perfect match and there may only be a few people who have a particular combination.
In addition to contacting people local or originating from places where drives were being held, I tried to contact people who I think are in influential positions, good social networkers, school teachers, college professors, anyone who I thought could help convey the message with more impact. The responses and support has been amazing and reassuring. I also started inviting more people to stem cell donations even when I know they cannot attend for numerous reasons. When folks see such invites, at least a few may be curious to find out. A few may invite their friends and the effects can ripple through the networks and increase general awareness. By writing all this down, I am not trying to say I am doing something great. I am just writing down the few things that I think are quite simple and may give ideas to others to propagate the message.
I was also quite surprised by how almost everything can be done online these days including registering to be a donor.
As times keep changing, there are some things in life which we come to accept and take for granted. If someone is hurt in an accident and loses a lot of blood, they get blood that matches their group quite easily. This has not been the case always. Earlier, people used to bleed to death.
So what changed? Both technology and awareness.
Technology to store blood safely for later use. Awareness that donating blood could save someone’s life. And also the fact that donating blood is not a complicated or risky process.
Can we apply the same to stem cell donation? Yes, in many developed countries, people facing life-threatening disorders can find a potential donor from the stem cell registry quite easily. In these countries, a lot of people have already come forward and registered their names.
The same needs to happen in countries like India. While blood banks store actual blood, stem cell registries only store the information and HLA type of registered members. This type is determined by using a saliva sample. So the actual registration is a mere cheek swab and it took me less than 5 minutes to do it.
Only when a donor matches a patient, further blood testing is done to confirm and measure the matching quotient. Doctors look for a 10/10 match and younger donors for best results. This makes it important for more youth to come forward and register.
The intangible thing that a stem cell bank stores is the potential donor’s commitment to donate if matched to any patient. This is really huge as the patient’s only chance of survival would be the donor. Once matched, backing out for reasons other than health issues is like giving false hope. Of course, a donor can change his or her mind but it is important to remember they may be denying someone’s only chance for a life.
As technology has advanced, the actual donation process has also been simplified and it is almost like a blood donation. Let fear not hold anyone from saving a life. The other factor that seems to hold back many people is cultural aspect of donations. If blood can be transferred between people, does it matter if some part of the blood, namely stem cells, are given to a person to give them another chance to live. It is important to build awareness to increase the number of people of Indian origin registered in stem cell registries across the world.
Wait a minute! I have been talking a lot about Indian origin and building registries for Indians. Am I being a racist?
When many of us are led to think that talk about race or religion is taboo, there are situations where it is still relevant and useful. This is especially relevant in stem cell matching where matches are found among people of same ethnic and racial backgrounds. As we are moving towards globalization where some of us want to embrace other cultures, there is something within us that make us who we are. And no matter how far we run, we are bound by some strings. Even if there are others who want to help us, in certain situations, they simply cannot. We have to turn to those from our own ethnic and racial background to root for us. So this answers the third question that I had left unanswered. An Indian living in a developed country has the same low probability of finding a match as someone living in India. This stresses the fact that people from diverse ethnicity need to be on the registry.
And being the second most populated country in the world if there is proper awareness and willingness the story of Indians having a lesser chance can be turned around.
If you are not an Indian and happen to read this article, just substitute your ethnicity for the word “Indian”. Most of it will hold true if you are from an ethnicity that is not well-represented in the stem cell registries across the world.
At least some you may be wondering why I used the title “Probability” for this note. For one thing, I felt the probability of my note getting read by people who are not already convinced about stem cell donation will be higher with an unrelated title. Then again, nothing in life is certain and everything can be stated only as a probability. In the current world, the probability of a person getting some form of cancer in his/her lifetime is high. It could be the modern lifestyle. It could be pollution. It could be a lot of things including advances in the medical field that allow diagnosing new cases of cancer. With this high probability looming over all of us, don’t you think we should work towards raising the probability of finding a stem cell match from low to high? If you are convinced, more information is just a few clicks away.
Thank you for reading and hope this motivates at least a few to take that small step to save a life. Come forward and register as a stem cell donor. Age and a few health restrictions apply. But don’t let this hold you back. You can always be that messenger and/or financial contributor who can spread awareness and help with the efforts. And for those who already support such efforts, kudos to you!
Disclaimer: All materials in this article are the personal opinions of the author.