Earlier this year, a couple travelling in a two-wheeler in Pune got into an accident. What unfolded would have put any Bollywood drama to shame. You see at the time that the 24-year-old husband was fighting for his life, there was a 15-year-old in Mumbai with a failing heart fighting for hers as well. And though unfortunately the man succumbed to his injuries, the teenager was offered a ray of hope because the man was an organ donor. In a herculean but miraculous effort that involved both the patients and their families, the police and the hospitals, the heart that the teenager direly needed was transported from Pune to Mumbai in 94 minutes flat. The teenager survived and the man went down in the history of organ donation in the country.
In India, organ (particularly kidney) donation, usually considered an altruistic venture, has now become synonymous with controversy and bad medical practices.
The idea of organ transplant is not new. Records show that skin transplants were done by Indian surgeons as early as 800 BC, but it was in 1954 that Dr. Joseph E. Murray conducted the first successful solid organ transplant when he transplanted a kidney between identical twins in the Brigham and Women's Hospital in Boston in 1954. The science and practice of organ transplant has come a long way since then. Every major organ of the body, except the brain, can now be transplanted. With the ever growing spectrum of safe immunosuppressive therapy and potent antibiotics, patients who need organ transplants are living a close to normal life. Many of these patients will tell you that there are two major requirements for the success of these procedures—the availability of an organ and the body's ability to accept the donated organ. Transplant healthcare providers, including surgeons and medical doctors, are trained individuals with technical and medical skills to ensure that a viable donor organ is not rejected by the recipient's body. After the transplant surgery, these providers' goal is the lifelong maintenance of a delicate balance of immunosuppression to prevent rejection of the donated organs and prevention of infection that can be a result of such immunosuppression. More importantly, though, the success of a transplant depends completely on the availability of a compatible donor.
How it works: India vs. the US
We can think of organ transplant in terms of blood donation. Widespread availability of blood banks, at least in urban India, ensures that when one needs blood for a medical reason one has access to it (rural India though is another story altogether). The patients in need are given compatible blood as and when needed. Organ transplant is similar in that a recipient also needs organ from a compatible donor. But that is where the similarities between blood banks and organ transplants end. Unlike blood, an organ cannot be stored in an organ bank for long periods of time waiting for someone who may need it in future.
Many patients now fear going under the knife for a procedure that could be lifesaving, for the very real fear of losing an organ in the process.
There are two ways for organs to become available for transplant. One is cadaveric in which within hours of the donor's death, the organs are taken out -- "harvested" -- and transported to the recipient. Another way is living organ donation in which a volunteer -- usually a family member of the patient -- donates an organ or a portion of it for transplant. In developed countries like the United States, most of the organ transplant is cadaveric. In 1984, the US Congress addressed the issue of the country's organ shortage by passing the National Organ Transplant Act. Through this act, the sale of human organs became illegal and a national register for organ donation was created. In this system, people who need an organ are listed in a centralized register. The list is chronologically arranged, but the sicker patients (graded through an objective scoring system) do get preference and are put higher on this list. When organs are harvested anywhere in the country, the registry is notified immediately through coordination in large part by UNOS (United Network for Organ Sharing). The organs are then assigned in an unbiased need-based method to those in the lists. The system can be thought of being close to perfect except that there are more than 100,000 people currently on the waiting list.
In India, the preferred method of obtaining organs is through living donation. The advanced technical expertise of doctors makes organ donation a mostly safe medical procedure with low mortality rates. However, in this country, organ (particularly kidney) donation, usually considered an altruistic venture, has now become synonymous with controversy and bad medical practices. Since the largest number of transplants done in the country is kidney transplants, let's use it as a proxy for organ transplant going forward.
The murky reality of organ transplants in India
Like the rest of the world, India too has seen an epidemic rise in non-communicable diseases. Due to this there is an increasing incidence of end-stage renal disease which at some point requires a transplant. Estimates show that of every 30 people needing a kidney transplant, only one is able to get it. This has created a huge demand for kidney donations and there are sections of society who wasted no time in taking advantage of this situation. Aided by poverty and uncertain organ-donation regulations they obtain kidneys illegally and then sell them to the highest bidder, making crores in profit. Their unchecked organ trafficking activities are so rampant that there are several villages in India and Nepal which have been labelled "kidney villages".
A nationwide registry that all people of the country have equal access to -- as donors or as recipients -- needs to be aggressively promoted.
The problem was first highlighted in the Gurgaon kidney scandal. Individuals had their kidneys removed against their will essentially forcing them to be donors for a sum of ₹30,000. This year, another such racket has been exposed in which the victims were offered a sum of over ₹ 3lakh for their kidneys. There have been several other such scandals as well. The horrors magnify when we consider that children have been known to have been kidnapped and killed for their organs. The traffickers, who show neither remorse nor fear of the law, and leave behind a wave of destruction for all those affected -- be it the donors, their families, the doctors or medical institutions. In addition, many patients now fear going under the knife for a procedure that could be lifesaving, for the very real fear of losing an organ in the process.
What can be done?
As the Preamble to the "Ethical Principles in the Allocation of Human Organs" of UNOS states, ethical principles and regulatory requirements often overlap -- ethical principles largely guide the regulations of organ transplant. Ethics dictate that organ transplant be a function of necessity of use of organs), equity in access to the transplant network and respect for people's autonomy in medical decisions. UNOS has called these the founding principles for ethical and regulatory considerations of organ transplant. These become even more important when we consider living donor transplant as is practiced in the country. A multipronged, all-stakeholder approach to improving the state of organ transplant is urgently needed.
Though there are existing rules for the organ transplant system in the country, stricter implementation is the need of the day.
Though living transplant is widely practiced in the country, it does involve some risks to a healthy donor. In addition, as long as living donor transplants continue, it will be very difficult to bring organ trafficking to a full stop. Which is why stringent rules with no room for misinterpretation should be made for living organ transplants. One such rule could be that only blood relations should be able to donate organs to the patient. To circumvent the issue of tissue compatibility, methods such as "domino transplants" could be practiced and perfected.
In a perfect organ transplant world, however, cadaveric transplant would be an ideal solution. India as a country is sensitive to issues of cadaveric transplants. Apart from religious and social barriers, cadaveric organ transplant depends heavily on the successful maintenance and promotion of a centralized registry for organ donation. Which is why a nationwide registry that all people of the country have equal access to -- as donors or as recipients -- needs to be aggressively promoted. Equity of access as well as informed consent should be the driving force behind such registries. The public and private sectors should come together to raise awareness on organ donation so that the transplant demands on the registry are met. Who can ever forget the ad, where Aishwarya Rai famously pledged her eyes for donation? In the ad not just did Ms Rai tell the country about eye donations, her message also told people that it was OK to donate or receive organs. Similar promotions should be used to actively advocate for organ donations and raise social awareness.
No organ transplant program can be successful without strict regulations. The state and central government have the most active role in regulation of organ transplants. Though there are existing rules for the organ transplant system in the country, stricter implementation is the need of the day. The ethical principles mentioned above could be a starting point, but country-specific considerations would have to be made to ensure compliance to the rules. Organ trafficking is a serious crime violating every item in human rights movement. Perpetuators are criminals and the severest form of punishment should be doled out to them. The healthcare industry in its part should comply with the law to ensure that organ rackets are busted and the criminals are brought to justice.
Organ transplant is a living-saving procedure. It is a medical marvel that many individuals have benefitted from. However, as recent reports have highlighted, it is also a medical system that has invariably promoted extensive abuse of human rights. Clinical criteria and ethical considerations rather than financial motives should be the force behind successful organ donation and allocation. All of medical and civic society must rise against any one or any group who think otherwise.