By Vidya Pradhan
“Why don’t we help our own people?” asks Amrita Lokre, who along with friends organizes bone marrow drives in the Bay Area. If you live in this community, chances are that you have received an email from this bunch of committed people about a drive somewhere close to you.
The big push to get Indians to join the bone marrow registry started when friends of Vinay Chakravarty and Sameer Bhatia started an online campaign to encourage members of the community to come and get typed for a possible match. Both Vinay and Sameer suffer from Acute Myelogenous Leukemia( AML) a cancer of the blood which is treated with a transfusion of healthy cells from a matching donor.
For a Caucasian, the chances of getting a hit from the nationwide registry are 1 in 15 whereas an Indian American has a 1 in 20,000 chance of finding a match. Given our population in the US, the numbers are already against us (there is no registry in India yet and the few data that are available are not connected to the registry here).
What stops us from becoming donors? WNI attempts to demystify the process of bone marrow donation to address the concerns typical donors have.
– The first step is to just give a cheek swab at one of the various drives in your neighborhood. The process is completely painless (unless you count filling up the copious paperwork!) and takes just a few minutes of your time.
– Unlike blood donation, you as a donor get called only if your cells match the cancer patient. As Cynthia Carlson puts it, “Bone marrow is predicated on a genetic match, so it’s almost like finding a sibling you never knew you had.” Cynthia was a donor several years ago and her experience with the program was so profound she eventually became a senior recruitment specialist for the program.
– Once your tissue sample matches a patient, you are called in for a complete physical and blood work to make sure no viruses are present in your system. Extensive education and counseling sessions make sure you are aware of what is involved in becoming a donor. There is a grace period where you are allowed to withdraw from the program but after the patient has started getting prepped to receive the bone marrow, you are committed to donate.
– There are 2 alternative ways of extracting marrow. The first is a bone marrow harvest that is done under general anesthesia. A skin puncture provides access to the bone and marrow( which looks like blood) is extracted from both sides of the pelvic bone in a procedure that takes about half an hour. The patient is under anesthesia for about an hour, total. After the procedure the donor is required to wear a pressure bandage till the next day and may require over-the- counter pain medication for a day. Typically, one can return to work the next day.
– The second method (which is more prevalent among adult donors) is extracting the peripheral blood stem cells in a 4-5 hour procedure. For a few days before the extraction, the donor has to take growth factor injections to stimulate the production of stem cells. Side effects are mild and include flui-sh symptoms and bone pain which disappear once you stop the medication. The extraction process itself is not painful and involves hooking up to an IV as blood is extracted and returned to the body after being passed through a dialysis-like machine.
“I find it hard to believe that it is only fear of pain that prevents Indians from donating,” says Dr. Rajni Agarwal, whose valuable inputs helped us compose this article. Dr. Agarwal is Assistant Professor of Pediatrics at the Stanford School of Medicine and performs bone marrow transplants in the pediatric department. She believes that there is a cultural mindset that prevents members of the Indian community from volunteering their time and their services. “We find it easy to give money but when it comes to giving of our selves, we hesitate. Indians are so rich in culture and spirituality, if we could just learn to embrace the community spirit, we would be complete.”
“Yes, the procedure is a little painful,” she goes on. “But you recover fast from it. It is actually less painful than having your wisdom tooth extracted. Little kids do it all the time for their siblings. Can’t we do it for our brothers and sisters in humanity? We Indians spend so much on educating our kids, but the real education comes from helping other people.” In her 15 years as a bone marrow transplant physician, she has not encountered a single instance where the donor suffered any ill effects from the procedure.
Perhaps, along with the many drives organized by the committed Bone Marrow Team, we need to include a confidential questionnaire that can explain why the number of Indian donors is so low. Is it a problem systemic to the way we look at life? Maybe. But what I do know is that by donating my bone marrow, I get a chance to save someone’s life without rushing into a burning building or jumping into treacherous waters. How many of us will get that kind of opportunity in our lives?
The drives have helped Vinay and Sameer find a match but we have a long way to go before the numbers of Indians in the registry are significant. Look for bone marrow drive information in the event section of WNI.
I have registered to be a bone marrow donor. Have you? If not, will you let us know why?
Timely; well-written and useful.
This “cultural mindset” stops us from pledging eyes and in many cases even donating blood. Those last few lines are truly appealing, WNI. Way to write! More of such mindset-changing pieces!
Excellent information! Hope this will raise awareness and motivate Indians to become donors.
Well written Vidya. We recently organized a bone marrow drive at the temple for a young child. It was quite an appalling to see how several Indians avoided the bone marrow table and would purposely walk in another direction just so as to avoid talking to the volunteers. Our Indian community needs to be educated in several areas on how to be more giving to others. Besides writing a check and donating a few old clothes we need to learn how to actually save a life!
Well said, Rennu. We’re on the “highly educated” list. There seems to be a void in that label.