To save a life

To save a life

By AKHIL SOOD | | 17 January, 2015
Organ donation in India has been hampered by misinformation, myth and a lack of awareness in the past. But things seem to be changing for the better, as Akhil Sood finds out.

Heart, kidneys, liver, lungs, pancreas, tissues including the cornea, skin, heart valves, bones, tendons. It takes all of five minutes to save a life (or many), by registering as an organ donor on the internet. The process is straightforward: there's a basic form to be filled with your name, age, blood type, contact details and which organs you'd like to donate when you die. Upon completion, you'll receive a copy of the donor card to print, laminate and stuff into your wallet. However, this donor card, which indicates that the deceased wanted to donate their organs in the case of brain death, is not actually legally binding.

As per the Transplantation of Human Organs Act, 1994 (amended in 2011 to incorporate certain changes and include stringent measures against illegal trade after the infamous 2008 kidney transplant scam in Gurgaon), the consent for organ donation of a person with brain death — the "irreversible form of unconsciousness characterised by a complete loss of brain function while the heart continues to beat" — lies with the individual's next of kin. Nevertheless, the registration does help to increase awareness about an area in which India is lagging behind. According to a report published by Organ India, an initiative by the Parashar Foundation, India's organ donation rate stands at a dismal 0.26 per million; by way of contrast, the rate in the U.S. is 26 per million, 35.3 per million in Spain and 36.5 per million in Croatia.

However, the situation isn't as bleak anymore; steps are being taken and things seem to be picking up, both statistically and in terms of awareness. MOHAN (Multi Organ Harvesting Aid Network) Foundation, a non-government, not for profit organisation established in 1997 in Chennai and now spread across the country, has been at the forefront of the movement in India, working within the space of deceased cadaver donation, training health care professionals, coordinating with donors and recipients and tying up with multiple hospitals across the country, counselling families, creating local and national networks, working with state and central authorities, and conducting seminars and Continuing Medical Education (CME) sessions. "There is scope for more awareness," says Dr Muneet Sahi from the MOHAN Foundation. "It's a general evolutionary thing. It has taken many years for the promotion of eye and blood donation, but people are accepting that now." In the same way, she says, organ donation will also be embraced by more people over time. She mentions how awareness is far better in the south than in north India, and that many states in the area have their own state registries for donor and recipient requirements and availabilities. In the north, where hospitals do have their own registries, a unified state registry is absent, although plans are in place to implement one in Rajasthan.

As recently as the first week of the new year, five lives were saved and two persons' eyesight restored after a 24-year-old accident victim was pronounced brain dead and his organs were donated with the consent given by his two brothers and father. The transplant was executed at AIIMS, New Delhi, coordinated by the Organ Retreival and Banking Organisation (ORBO), an organisation affiliated with the institute that has been very active in this sphere. In another incident, a 30-year-old male was declared brain dead by doctors at Fortis Memorial Research Institute in Gurgaon, which led to a frantic dash wherein the Delhi and Gurgaon police created a 32-km "Green Corridor", halting traffic and allowing the ambulance to transport the deceased's heart to Fortis Escorts Heart Institute of Okhla within a mere 29 minutes. (Dry runs were executed over the past year.) The "Green Corridor", Dr Sahi tells us, is a concept devised mainly for heart transplants, since the human heart can be preserved only for a period of four hours; the time period for different organs varies. In Karnataka, the State Transport Department, after discussions with the NGO Gift Your Organ Foundation and other departments, started an initiative where anyone applying for a driver's licence can also register as an organ donor.

She also mentions the formation of a central registry, to be set up within the next six months, under the purview of the government-run National Organ and Tissue Transplant Organisation (NOTTO), consolidating all the data within the regional (ROTTO) and state (SOTTO) organisations. This registry will monitor all transplantation activities and maintain a data bank, compiling and publishing all registry data from states and regions, thus creating a far more organised and methodical system for organ donation and transplantation in India.

Sometime last year, within the boundless realm of social media, this little trend began cropping up on Facebook, wherein users could add a new "Major Life Event" to their timeline; they could alert their friends about the fact that they had become registered organ donors. It slowly began gaining traction, as more and more people on this writer's timeline (and plenty of others, no doubt) started to add this little tidbit to their Facebook accounts. It was a matter of pride, and led to a considerable buzz (and, thereby, awareness) about organ donation. This entire exercise was part of an initiative that Facebook worked on with the national daily newspaper The Times of India called the Organ Donor Campaign.

A 30-year-old male was declared brain dead by doctors at Fortis Memorial Research Institute in Gurgaon, which led to a frantic dash wherein the Delhi and Gurgaon police created a 32-km ‘Green Corridor’, halting traffic and allowing the ambulance to transport the deceased’s heart to Fortis Escorts Heart Institute of Okhla within a mere 29 minutes. 

Separately, there was a different campaign that had people posting self-portraits ("selfies") of themselves posing with their donor cards. Again, this encouraged a lot of talk on Facebook, acting as another way of encouraging discourse about organ donation within the educated, internet-savvy demographic. This particular campaign was called EternaLife, an initiative by Sonali Singh from New Delhi. "This worked for a while," she says. "At first, people felt embarrassed when I asked them to post their own photos; they were being shy about it. But it's something you should be proud of. It's an important thing." She cites the example of the much-discussed ice bucket challenge, which raised awareness about ALS, and highlights the importance of roping in recognisable names in the public domain to promote a cause, since that's something that the masses can instantly connect with and be inspired by.

The EternaLife campaign included registered organ donors sharing “selfies” with their cards on Facebook to raise awareness. With EternaLife, which she runs along with four partners, Singh wants to expand the scope of the people she can reach out to — social media can only appeal to educated, reasonably well-off, technologically savvy people, but the critical mass of the country resides elsewhere. Singh emphasises the importance of the visual medium as a way of reaching out to people, making films in both Hindi and English that would resonate with people; connecting with schools and local Resident Welfare Associations (RWAs) is also part of the agenda.

There is a lack of sensitisation," says Dr Sahi, delineating some of the challenges facing the rise of organ donation in India. Singh also talks about how the general apathy of people too lazy or unconcerned to register as donors should not be the reason for another individual's chance for life. "There is a lot of misinformation that people have, many misconceptions and myths surrounding organ donation," Singh adds. Dr Sahi speaks highly about the quality of transplant surgeons in the country, and how qualifications are not a problem. There are questions about the abuse of the waiting list of recipients by rich or influential people, but she asserts that a transparent process is followed in all cases, as per the waiting list.

The organs are removed from the brain-dead individual surgically, and the donor family is not provided with any information about the recipient family. "If the donor family wants to know about the recipient, we'll write to them to tell that, for example, the liver went to a 26-year-old male suffering from this condition. But we don't encourage any interaction between the two families because it can be overwhelming. There is also the possibility of misuse," says Dr Sahi.

In undergraduate medical college, students are taught the basics of organ donation in terms of theoretical knowledge — what organs can be transplanted, how long they can be preserved, what preexisting conditions need to be looked at, the chances of success, different reactions and medicines. Dr Jindal (name changed), from Max Super Speciality Hospital, Patparganj, reveals that grief counselling isn't taught in many colleges: "That's something we learn about practically, during internships, in hospitals while dealing with patients and families. It's something that's passed down from senior doctors."

Grief counselling is an element that plays a key role in cadaver donation. MOHAN Foundation has tie-ups with many hospitals across the country, and they have a trained transplant coordinator available at these hospitals. "We come into the picture once the attendant doctors tell the patient's family about the patient's brain-dead status. We explain to the family what brain death stands for, how it is irreversible, how the law recognises it. We give them time. We do not talk about brain death and organ donation in one go; we decouple it. If we're able to convince them, then the whole process takes about 18-24 hours, and we're with them throughout, until the body is handed over.

"We attend the prayer ceremonies, we also give them a small token of our appreciation in the form of a certificate. We remain in touch with all donor families, writing to them frequently, and we also sometimes have programmes for donor families — the impact is great, and people come and speak about their experience."

Mumbai's Zonal Transplant Coordination Centre, a governmental organisation that coordinates between hospitals and donors and recipients — with 31 affiliated city hospitals — also focuses a great deal of its efforts toward awareness. An official with the organisation, who did not wish to be named, reveals that the number of cadaver transplants has increased substantially in the last couple of years. "We conduct CMEs, train and work with hospital staff and doctors. In addition, we also hold awareness camps, setting up stalls across Mumbai, especially during religious festivals such as Ganpati, where we can reach out to a large number of people. We put up a stall, we distribute pamphlets there, we even get them to fill up donor cards on the spot."

Discussing awareness campaigns undertaken by the MOHAN Foundation, which has been instrumental on the ground, Dr Sahi talks about working with the youth through college events — they've introduced a peer educator programme in Delhi — and at social events such as corporate marathons. Stalls at the annual International Trade Fair and CMEs, workshops for medical professionals, seminars, even concerts — Dr Sahi talks about a performance by the band Indian Ocean, which saw a healthy turnout — are also incorporated.

However, a large percentage of India's population remains uneducated, especially in rural areas. Dr Sahi admits that there are considerable challenges in increasing awareness in these parts of the country, and that it's difficult to reach out to them. "There are many religious myths within certain communities. Many times, people agree with the idea of donation, they admit that it's a good thing, but that their family or the community wouldn't allow it. Peer education becomes essential in such a case. I can go there and flaunt my intelligence, but that won't make an impact. It has to be somebody who belongs there, who speaks the language, whom they trust."

As for the notion of ethical malpractice or conflict of interest, the Hippocratic Oath serves to dispel any such impressions. Dr Jindal also asserts that the condition of the patient takes precedence over all else: "We're trying everything to make sure that [brain death] doesn't happen. You're going full tilt to resuscitate the patient — putting them on the ventilator, using cardiac and respiratory support. Our concern is to always save the patient."

The technical expertise and skill-set is in place, the infrastructure is being developed over time and things seem to be heading in the right direction with strong initiatives undertaken by both government and nongovernment agencies. The need of the hour, then, is to spread awareness about the value of organ donation, with on ground campaigns and peer education the key.

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