Courtesy by: indiajournal.com
Who would not wish to ex tend a lease on the life of one’s son, daughter or a grandchild? And who would want to lose such a precious gift after having been blessed with one? These painful thoughts often make my nights sleepless when I come to know about a child of the Indian subcontinent pedigree losing the game of life simply because no one came forward to offer a small amount of bone marrow that he or she direly needed to survive. Many such children suffering from acute leukemia or other fatal blood illnesses wither away without seeing the light of future days in the absence of available matching donors. This kind of apathy among our people causes ripples in my heart and turns my stomach upside down. I ask myself how it is that we, the people from the Indian subcontinent, who otherwise are willing to donate any amount of money to build and sustain more temples, gurdwaras, mosques and churches, fail miserably when it comes to donating parts of bodies, parts that will not impair our ability to function perfectly well without. The answer is painfully obvious.
We donate to the places of worship, in part, because of a genuine need, but more often than not, we do so to satisfy our egos and out of a belief that by building more religious places, we will be assured a seat in heaven. For some obscure reasons, a gift that can save the life of a helpless child without causing much discomfort to our bodies and pockets is usually not on our agenda. Rarely do we consider that helping a dying child with such a gift of life might assure us of a rather better seat in heaven, perhaps even in the first row, if there were such a thing? Moreover, the spoken and unspoken words of gratitude of the life thus saved will often go a long way in showering lifelong blessings on the donor.
Most people in the West whom we casually write off as materialistic, stand ready to silently help in finding solutions to ease the pain and suffering of their fellow human beings. They support research by all the available means at their disposal to find new treatments to control illnesses that if left alone could cause havoc. Many rich individuals in Western countries establish or support privately sponsored charitable foundations. Organizations like the American Cancer Society, the American Heart Association, the Parkinson Disease Foundation, the National Multiple Sclerosis Foundation, the Alzheimer’s foundation, the American Epilepsy Society and many more are doing yeoman’s work. To some extent, we, the people of India and other Asian countries try to follow suit, but our pace is no faster than that of a snail. In part, this is due to our ignorance about various disease processes.
For this very reason, I wish to say a few words about bone marrow transplants and how they work. I have a vision that eligible people of the Indian subcontinent ethnicity after learning a bit more about bone marrow donation may gain some insight and understanding about the necessity of such a noble act and offer this priceless gift to those in desperate need of it.
Bone marrow is a spongy red substance present in the center of our bones including the pelvis (hips), the vertebrae (spines), the sternum (breast plate), the ribs, and the skull. This spongy red mesh contains stem cells, also known as grandfather or grandmother cells. They give rise to generations of other mature bone marrow cells which in turn create all the other present in the bloodstream, cells that deliver oxygen and other vital nutrients to different parts of the body. Normal bone marrow is like a factory, churning out as many cells as our body needs. In leukemia and other related disorders, this factory goes haywire. It produces cells that may be aggressive in competition than healthy cells, but are unable to perform their assigned functions in spite of their larger numbers. It is something like having a huge army that is totally unable to fight.
A bone marrow transplant is often the last and only treatment for curing illnesses of the blood such as leukemia (blood cancer), lymphoma and some inherited disorders such as thalassemia major.
Transplants can be autologous or allogeneic. With autologous transplants, one receives back one’s own stem cells. The stem cells first are removed and parked outside of the patient’s body prior to subjecting that patient to a total-body radiation and to chemotherapy, both of which destroy the patient’s bone marrow. Once the marrow is destroyed the parked stem-cells are re-infused back. However, this kind of transplant is not ideal for leukemia.
With allogeneic transplants, the patient receives stem cells from the bone marrow of another person. The ideal donor is an identical twin. If this is not possible, a brother or a sister from the same parents is preferred. Unfortunately, the chance of a match from a non-identical sibling is around 25%. It implies that many patients are unable to get any match at all from their siblings. Therefore, having a donor pool becomes very important in any ethnic community, as common ethnicity increases the chances of finding a good marrow match among people who otherwise are unrelated to the patient.
The use of the word ‘transplant’ here might be a misnomer as in that a bone marrow transplant is not a major procedure like a kidney, heart, or liver transplant. The potential donor donates a few drops of blood to determine if his or her tissue type will match with that of the patient in question. This testing is neither terribly expensive nor difficult. Only when the tissue of a potential donor matches that of a recipient is the donor contacted.
The main procedure of a marrow transplant or transfer requires a donor to have a few small punctures on the back of the pelvis. From these punctures, bone marrow from inside the pelvic bones (hips) is sucked out with a syringe. Such a procedure will need either general or regional (wide-area rather than local) anesthesia. As with any other surgery, some amount of post-operative soreness is often felt. This procedure only takes about one to one-and-a-half hours. Within a few weeks, the body replaces the marrow that was removed and one feels as if nothing has been taken away.
Stem cells can also be obtained from the peripheral blood. In this kind of donation process, one of the veins in the arm is used to remove the stem cells. This procedure requires the prior use of a particular medicine by the donor for four to five days in order to increase the yield of the stem cells when they are harvested. Minor temporary side effects such as bone discomfort or bone pain, muscle pain, fatigue and nausea can result from the procedure and from the medicine. Stem cells from peripheral blood are transplanted to restore diseased stem cells that have been intentionally destroyed by high-dose chemotherapy and radiation in patients suffering from the disorders mentioned above. Once the transplant is finished, the healthy cells from the donor travel to the bone marrow of the patient and begin to produce new blood cells. This restores the health of a good percentage of patients, provided no complications ensue.
Only healthy individuals between the ages of eighteen and sixty are chosen as donors for this gift of life and there is a reason for such discrimination. In donors younger than eighteen years, the issue of consent stands in the way as the procedure is considered a surgical intervention. The donor’s guardian will have to be involved, both because of the law and because of ethical considerations. The limit of 60 years on the higher end is needed to make sure that the donor is relatively healthy and also to make sure that the material obtained from the donor has a good chance of survival in the recipient.
In the U.S., the National Marrow Donor Program (NMDP) provides a donor registry and communicates through a cooperative network of medical facilities present all over the country. Likewise there are similar kinds of organizations in other Western countries too. Although there are over four-and-a-half million adult volunteer donors registered in the NMDP program of the U.S., the donors from many ethnic communities, including people of the Indian sub-continent origin are difficult to find. Moreover, Asians are more polymorphic than Europeans. This means that that Asians are more likely to have more than one HLA or tissue type, thus causing more difficulty in finding a compatible donor. With a larger pool of donors, the chances for locating a compatible ethnic donor becomes somewhat easier.
Through these lines of quasi-medical information, it is hoped that some members of the Indian diaspora might become motivated to help expand the donor bank and thus help the children of ethnic-Indian origin who otherwise could be waiting desperately and painfully to receive such a life- saving gift. They may not have enough time left before the flame of life simply goes dim and then extinguishes forever. By donating such a gift to a helpless child, one could simply snatch his or her life away from the jaws of death and deliver it back to the child to experience it once again in all of its glory. In my opinion there is no better gift than saving the life of a helpless child waiting at the door of death, counting days. Such a gift not only will serve its intended purpose in saving the life of a desperate recipient but it will also bring the comfort and peace to the donor. In fact, it might well also open the doors to heaven for such a donor at the end of his or her life, especially for the one who believes in and hopes for this kind of outcome.
Dr. Jaswant Singh
(Adapted from Author’s recently published book, “SQUARE PEGS, ROUND HOLES” The book is available by contacting the author at 602 741 8021 or emailing at firstname.lastname@example.org)