When Heroism Hurts: Reform the Rhetoric of Bone Marrow Donation

LAKSHMI BHARADWAJ

bone marrowWhen Nalini Ambady, a psychology professor at Stanford University, learned of her cancer recurrence in 2011, it was not easy news to digest. Desperate to save her, her family launched a world-wide campaign to find a bone marrow donor for Nalini. As someone who participated in her campaign, I often felt overwhelmingly confident of seeing a cancer-free Nalini Ambady. I kept an eye on updates as the search assumed a sense of urgency. When potential donors and half-matches were found, I rejoiced prematurely. I considered the successful marrow-matches as solutions to the disease, but the problems were complex.

Nalini Ambady had found a potential donor in a young man who refused to donate on the grounds that his parents did not approve of the process and that he felt afraid. Many people questioned the ethics of this registered donor’s decision. The behavior of this marrow-matched individual might seem uncharacteristic, but it is actually typical. Many individuals drop out of marrow registries even when they know they have the tremendous potential of helping someone else. This is not because they are heartless; they are merely haunted by a very real fear. Enterprising marrow registries need explain and deconstruct the procedure of marrow-matching, not glorify it. Glorification will invoke awe and mystify, but it will not grant clarity and awareness. Global bone marrow campaigns today are mythologizing donation by associating it with a sense of heroism. This mistake has scared away many potential donors and has cost Nalini Ambady her life. She died late in 2013, still waiting on healthy, transplantable marrow.

Not too long ago, Dr. E. Donnall Thomas shook the medical world by pioneering bone marrow transplantation, even amidst the skeptical dismissal of oncologists. His ground-breaking research earned him the title of “Father of Bone Marrow Transplantation” and the Nobel Prize in Physiology and Medicine in 1990. Many hailed Dr. Thomas’s stellar research as a breakthrough, but the process of stem cell transplantation is still fraught with anxious challenges half a century after the first successful human bone marrow transplantation. The science behind stem cell transplants has not been translated from esoteric medical jargon to common knowledge. For most of us, stem cell biology is still magic.

The challenge of marrow transplantation seems not in the medical complexity of the process, but in convincing the common person that it works.

Peripheral blood stem cell (PBSC) transplantation can be life-saving for those who endure high-dose chemotherapy. The process of transplantation rapidly restores marrow function for those whose cells have been destroyed by disease. The curative relief from stem cell transplantation can also decrease the exhaustion that cancer patients often feel.

Rewarding as it may seem, there is a brooding reluctance among donors, especially when the decision of marrow-matching comes into question. The challenge of marrow transplantation seems not in the medical complexity of the process, but in convincing the common person that it works. Marrow donation can be seen as a mammoth sociological problem that depends on the beliefs of its donors.

With this in mind, we need to view marrow donation from a sociocultural perspective. We need warm, practical informers, not frantic drives that advertise marrow donation as something revolutionary. This calls for the involvement of sociologists and psychologists, in addition to marketing firms. It isn’t easy to make potential donors feel safe and comforted, but we must stop overshooting in our attempts to paint them as heroes.

As I see it, an interdisciplinary approach involving experts from various fields can help prevent situations like Nalini Ambady’s from recurring. People must begin to understand and appreciate bone marrow donation, not just believe in it in the abstract. Only then can this extraordinary technology reach its full potential.

Lakshmi Bharadwaj is a Brevia contributing writer from the University of California, Davis.  She can be reached at lbharadwaj@ucdavis.edu.

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