DATRI is an NPO (non-profit organization) facilitating blood stem cell transplants in Chennai. Last month, on 8th November, they conducted a drive in IIT Madras where over 300 students registered as potential donors. In this interview, Surya speaks with the founder of DATRI about blood stem cell transplants and how we can contribute as students to this process.
You may have donated blood, but have you considered registering as a blood stem cell donor?
Blood stem cells are needed to help treat a number of diseases. With 45,000 new cases of leukemia and more than 10,000 new cases of thalassemia every year, blood stem cell donation is the need of the hour. Until a few years ago, the only hope for these patients was regular blood transfusions that prevented them from leading a normal and healthy life. Blood stem cell transplants are a godsend for those suffering from blood related diseases as they provide a one-time solution that enables patients to live a healthy life.
Launched in 2009 by Mr. Raghu Rajagopal, DATRI, a non-profit organisation has facilitated more than 210 blood stem cell transplants through unrelated donors. The organisation has more than 1,50,000 registered blood stem cell donors and is looking to spread awareness amongst the people. A genetic match between the stem cells of the donor and the patient is essential for a successful transplant. With the probability of the match between stem cells being as low as 1 in a million, it is no wonder that DATRI is doing all it can to expand its donor base.
Awareness levels today are much better than before and DATRI finds that college-goers are often the most enthusiastic and willing donor-volunteers. One hopes that we, the students of IITM, take the lead in this issue as in everything else.
T5E spoke to the founder of DATRI, Mr Raghu Rajagopal. Here are notable excerpts from the interview, conducted while Mr. Raghu Rajagopal was hurtling between offices, giving a new dimension to ‘walk the talk’!
Could you explain briefly what blood stem cells are? What are their applications in the field of medicine?
Blood stem cells are the mother of all blood cells (white blood cells, red blood cells and so on). Blood stem cells are those which produce new blood cells. These blood stem cells are found, for instance, in the bone marrow and umbilical cord.
There are several diseases related to blood. Some of these are fatal while others are benign. These may be due to the ineffective functioning of the bone marrow or having a lot of cancer cells in the blood. Blood stem cell transplants can cure some of these diseases completely, such as (but not limited to) leukemia (blood cancer), thalassemia and Hurler’s disease. In all these cases, the only viable option for the patient to lead a normal and healthy life is a stem cell transplant or a bone marrow transplant.
While reading, I found that stem cell transplants require the donor’s stem cells to resemble that of the patient. Won’t family members have a higher likelihood of having a matching stem cell type? If yes, could you explain the role played by a stem cell bank like DATRI?
The probability of finding a match within a family is around 25%. In contemporary times, this probability is further lowered due to the fact that most families have only a single child. The need for adult unrelated donors is greater than ever before. This is the role that DATRI plays. DATRI has helped to save the life of more than 218 patients by finding a donor whose genetic type matched that of the patient.
What is the current scenario in our country with respect to blood stem cell donations? What is the attitude of the public towards stem cell donation?
Blood stem cell donation, especially from an unrelated donor is a relatively new idea in our country. There are issues surrounding awareness and people are often blinded by myths. DATRI has been able to spread awareness in the community through its drives, conducted in association with corporates, colleges and religious institutions. We have definitely seen a noticeable change in the mindset of people in India towards blood stem cell donation. A disappointing fact is that there are members of the medical fraternity who are still unaware of the boon that blood stem cell donation is.
The world, as a whole, has more than 30 million individuals registered as blood stem cell donors. However, at DATRI, the number of registered donors is only around 2 lakh. After extensive research, it was found that the blood stem cells of donors belonging to the same family, region and ethnicity as the patient tend to have a greater probability of being a good match. The number of registered donors in our country are too few to help all those in need of a transplant. Hence, we need to spread awareness amongst the people of our country and ensure that we are able to expand the number of donors in order to save more lives.
What are the criterion to qualify as a stem cell donor? What is the registration procedure?
Adults between the age of 18 and 50 are eligible to register as blood stem cell donors. The registration process is simple. Donors need to be generally healthy and must not have long term blood related diseases like HIV. Once they have registered as a donor, their HLA typing will be determined using a swab of their cheek. The registered donor will be asked to donate his/her stem cells only in the case that there is a match with a patient’s stem cell type.
In case there is a match with a patient’s stem cell type, what would be the next step? Are there any health risks associated with donating blood stem cells?
The donor goes through a master health check-up. Once he/she has been declared fit to donate, the process goes on. The donor donates blood stem cells through PBSC or Bone Marrow Donation.
There are no health risks associated with donating blood stem cells.
As students, how can we help spread awareness regarding the importance of stem cell donation?
Firstly, I would like to encourage all the students of IIT to step forward and register themselves as donors. It would be wonderful if DATRI is given the opportunity to address the students during all major events held by IIT. Stem cell donation today resembles the scenario in which blood donation found itself 50 years ago. In contemporary times, blood donation camps are commonplace. This was made possible due to campaigns and drives held by the people. Hence, we believe that students must spread the message of stem cell donation by conducting campaigns and drives, particularly during student-run events.
This opinion was reiterated by IITM’s Chief Medical Officer or CMO, who told us, “Spreading awareness amongst the students is very important, and one way to carry it out is through posters. The regular drives organised by DATRI are also successful at spreading awareness.”
We also spoke to Anusha, a 2nd year student in insti who has been involved with DATRI, about her involvement and thoughts on volunteering for the cause. This is what she had to say:
“I got to know about DATRI in August 2016. I immediately registered myself as a stem cell donor as I believed that this was a noble cause. Since then, I have been actively involved with the DATRI team in conducting events in the campus. The team at DATRI is very motivated and enthusiastic about blood stem cell donation. Recently, in the month of November, I was a volunteer in the event conducted at IITM. I was pleased to note the large number of students who had turned up for the event to register themselves as potential donors.”
In the unfortunate circumstance that a donor backs out at the last moment, what steps do you take to save the patient’s life?
This is the toughest situation which we encounter in India. If a donor backs out at the last moment, it is very difficult to save the patient’s life. The donor needs to be extremely committed and should not back out once the conditioning process is started on the patient. The conditioning process is a method in which all the patient’s cancerous cells are destroyed and the patient is ready to accept the stem cells of the donor.
To avoid this situation, we try to educate our donors and encourage them to come forward to us in case they find themselves in two minds.
While reading about stem cell transplants, I came across a second category: the bone marrow transplant. When does the need arise for a bone marrow transplant? Does DATRI accept bone marrow donations as part of it’s program?
Bone marrow transplants are required in specific cases when the doctor believes that it would be a better choice for the patient. DATRI does accept bone marrow donations. However, there have been only 3 instances in the past when a bone marrow transplant has been required.
Could you tell us about some of your success stories with stem cell transplants?
One of our most satisfying and recent success stories is that of Manasvi, a ten year old girl who hails from Hyderabad. She was diagnosed with Thalassemia Major soon after birth. Thalassemia Major is a serious blood disorder and the patient requires regular blood transfusion to stay healthy. As a result, Manasvi was unable to lead a normal life. DATRI was able to find an adult unrelated donor with the same genetic type. The stem cell transplant was successful and Manasvi has been able to live a normal life for the past 6 months. She has expressed a desire to meet the DATRI team and we will be organising a get-together within a few weeks.
Datri had conducted a drive in IITM recently. Could you tell us about your experience organizing the drive?
The drive was very successful and we are grateful for the help and support from the organisers and the Chief Medical Officer (who . More than 300 students from IIT Madras registered as potential blood stem cell donors. We hope to organise more drives in the future and aim to see greater participation.
Anusha, who volunteered to help organize this drive, added:
“The drive was conducted on November 8 2016 from 10 A.M to 6 P.M. More than 400 students registered themselves as potential donors. It was a wonderful experience. A few alumni of IITM, who had donated their stem cells to a genetically matched patient, were felicitated by DATRI. During the drive, the organisers spoke about the importance of stem cell donation and its potential to save patients suffering from life threatening diseases such as blood cancer.”
What are DATRI’s goals for the near future?
DATRI’s main goal is to increase the number of registered donors in our registry. We hope to spread awareness all over India through campaigns and drives. Our long term goal is to provide a genetic match to all patients looking for a stem cell donor.
If you wish to contact Datri or find out more about registering as a potential stem cell donor, you can do so at datri.org, calling 1800-300-32874 or visiting firstname.lastname@example.org.