Organ donation is not well-organised, systematised or regulated in India. But how many medical professionals spend substantial quality time educating ordinary people?
Last week, Nalini Ambady, who was a professor of psychology at Stanford University, lost her battle against Acute Myeloid Leukaemia, a form of blood cancer. An Indian-American, Ambady, in her passing, has trained the spotlight on a legacy of questions, doubts and myths that modern society grapples with when it comes to organ and cell donation in order to save a life. These doubts surface each time such unfortunate losses of life occur, but the discourse that follows also helps locate answers or solutions to some really tough questions.
Not always though. There are too many complex shades of grey when it comes to organ or cell donation for saving a life. Over the last year or so, her struggle had led to multiple campaigns by family, friends, students and others who cared enough to take up the issue — all focussed on finding a bone marrow donor so that healthy blood stem cells (the cells that create all of the body’s blood cells) could be used for regenerative therapy, the only prime alternative left for treatment in her case. About a dozen potential matches had been found in the last few months, but half of them were imperfect and the rest did not materialise because the donors declined to go in for the final task of donation.
A personal thing
A lot is being written suggesting that this reluctance to follow through on a commitment stems from a complete lack of awareness, and how only a minuscule proportion of India’s 1.2 billion population signs up for such donation, as compared to the U.S. where despite a smaller population, many millions more sign up. Also, how bone marrow donation is almost as simple as donating blood. Little however has been said about how this is a very common human tendency — to pull out of a tough decision that essentially hinges on one’s altruistic traits, complicated and difficult to understand. It could be the eyes, your kidneys, parts of a liver, even a heart. These are part of cadaver donation. And then there’s bone marrow, blood stem cells, to be precise. From a living person. The motivation to donate is a puzzle, and ironically, clinical in nature, but hard to explain using just clinical facts and cold medical science. This is a highly neglected area of public health that comes into focus but infrequently, often through the angst of personal loss or stories of despair and death. The regeneration of fresh and healthy blood cells initiated through the transplantation of stem cells is a critical way forward in the progressive story of human medicine, with a growing list of diseases where a significant treatment option is stem cells therapy.
Although the masses may analyse the information and facts they have at hand, the result of that analysis is a highly personal, individual thing. What goes through a potential donor’s mind could be catalysed by what he or she is aware of, or has been provided facts about. So, does a potential donor face a quandary? No, it’s so simple, say many who have closely recorded Ambady’s struggle, and that of her family. Donating bone marrow is considered safe and simple, but for the fact that one must visit the hospital more than once. Also, just before donating stem cells, a drug must be consumed so as to increase the donor’s stem cell production — and filgrastim, a drug produced by recombinant DNA technology, does have some known side effects, none of them major. Meanwhile, peripheral blood stem cell donation is non-surgical as a procedure. In the extreme, fatal impact on the spleen is a remote possibility.
Eye donation — seemingly so uncomplicated because it involves fulfilling the wishes of a deceased person, or of a family deciding to donate a dead family member’s eyes — is plagued by a similar paralysis of decision-making. Despite recent encouraging trends, there are huge gaps. An expert in this area of work had said this to me, many years ago – “The donor may be ready, with filled-out forms and pledges and everything. But when he or she dies, the pathos of that moment can paralyse the immediate family or even stir up a completely adverse reaction. It can be very difficult to ensure timely action, allow removal of the healthy cornea, and all this within the first few hours of death, beyond which the cornea becomes useless.” Credible and clear data are hard to come by, but there are roughly 12 million visually handicapped people in India, of whom about two million are those who suffer from corneal blindness, a condition that can be treated through the transplant of a healthy cornea from a cadaver donation of eyes. Of these two million also, not all are suitable cases for such a transplant, but as per data from the National Programme for Control of Blindness (NPCB) under the Ministry of Health and Family Welfare, in 2011-12 the country collected just a few over 49,000 eyes. It is the same story with the donation of a kidney, or a liver or a heart. To be a potentially life-saving match for somebody is a powerful thought, but wherever you look the statistics will tell a dismal story — of a serious gap between the intent to donate (as in pledges), the actual number of acts of donation, and therefore availability, and requirement or demand for organs or stem cells.
For more awareness
Kidney transplants are fairly common, but again the demand by far outstrips the supply of the organ available through a donor. It is noted that organ donation is not very well-organised, systematised or regulated in India. But how many medical professionals spend substantial quality time educating ordinary people? Even the Indian Council of Medical Research (ICMR) guidelines on stem cell research refer to risks to the donor, but if there is greater knowledge, greater availability of information and credible facts, the number of people capable of making a bold decision in order to help a life or improve a health condition would surely grow. However, can we sit in judgment on a person’s individual choice? Not at all, because if in an independent analysis of risks a potential donor skews the desire to carry out an altruistic act, there is little that further education can do. After that, it’s just crossed fingers and fervent hope.
(Dr. Subhadra Menon is director, health communication and adjunct additional professor at the Public Health Foundation of India, and author of No Place to Go: Stories of Hope and Despair from India’s Ailing Health Sector. The views expressed are personal.)