A small monument was unveiled across St Rocky’s Church in Poothrakkal, a village not far from Thrissur town in Kerala on August 21. A human figure with one arm stretched towards the sky holds up a falling body. The unusual monument is a tribute to the village’s 2,000 residents who signed up organ donor forms four years ago, setting a national record.
The same day, Mulla Kochunny, a 68-year-old who had signed the Pootharakkal pledge in 2012, collapsed and died after a massive cardiac arrest. In keeping with his wishes, Kochunny’s eyes were harvested for transplant with the long-distance consent of his son in Dubai. For 55-year-old Father Davis Chiramel, Kerala’s best-known organ donation evangelist, it was a moving coincidence. He is the parish priest of Pootharakkal, the place where he began his massive organ donation drive in 2012, which eventually got into that year’s Limca Book of Records. Kochunny’s example showed that Pootharakkal’s pledges went beyond just the thrill of record-breaking impulse.
The day was a reaffirmation of the priest’s belief that Kerala is set to lead the way for organ donation in India, not just in numbers but also in awareness and attitude. As per the latest figures with the state-run Kerala Network for Organ Sharing (KNOS), the state now tops the country in deceased organ donation in terms of per million population. At 2.3 donors per million population, Kerala has even outdone Tamil Nadu, the state which has traditionally done exceptional work in the field and actually mentored Kerala in terms of setting up its registry for organ sharing.
“Over the last five years, the Kerala movement has seen a big boost. People are far more aware, less fearful and less sceptical about the idea. This maybe hard to believe but we actually have long queues of people lining up for live donation of kidneys. Some even ask me to put in a word that they be taken in first,” says Father Chiramel who, along with industrialist Kochouseph Chittilapilly (founder of V-Guard Industries and Wonderla amusement parks), is the most eminent face of organ donation in the state. Both were donors before they became evangelists, and both spoke publicly many times about how the surgery did not impact their health. This went a long way in busting many of the myths around kidney donation.
A year ago, KNOS coordinated the transplant of a three-year old’s kidneys and liver to another child. Anjana, a lively toddler, had died the day after she was diagnosed with a brain tumour. The mother had outright refused to donate the organs, but Anjana’s father finally came around and convinced the family.
Kerala has also seen an almost 95% increase in organ transplants from cadavers in five years. And yet, the demand still far outstrips supply. The medical and volunteer fraternity would like the movement to speed up, but it’s worth pausing to note that Kerala, along with Tamil Nadu’s own outstanding work in cadaveric organ donations, is leading the way in India. The abysmal national average stood at 0.34 two years ago, while Tamil Nadu and Kerala stood highest at 1.9 and 1.7 respectively.
“We are amazed at how rapidly organ donation has gained ground in Kerala,” says Dr Sunil Shroff, founder trustee at Mohan Foundation, the Chennai-based non-profit body that has done pioneering work in the field of organ donation. The foundation has good reasons to feel proud of Kerala’s achievement – it helped KNOS replicate Mohan Foundation’s very effective, internet-driven and transparent organ-sharing registry.
“The biggest challenge is to gain a community’s trust – the assurance that the first on the list will get the priority. This model gained Kerala’s trust. And we are backing that up with massive awareness campaigns across the state,” says Shroff.
What is unique about this organ donation evangelism across the state is that it is not being driven top down, unlike in Tamil Nadu where the medical fraternity is at the forefront of the movement. In Kerala, it is very much a people’s movement led by activists, philanthropists, the church and common people. KNOS organ transplant coordinator PV Aneesh says a big part of the team’s work is holding awareness camps for people across the length and breadth of the state, in colleges, hostels, schools, offices and clubs. This Onam, when there will be organised festivities across the state, he and other coordinators will be seeking more opportunities to address people. “It is a movement in the hands of the people,” says Aneesh.
Abin Thomas, a doctoral candidate at King’s College, London, has travelled across Kerala to study its organ donation campaigns. He says the “cultural, social and economic narratives of organ donation and transplantation” in the state is changing fast with KNOS’ steady and methodical work in hospitals, and the public education drive by charismatic figures like Father Davis Chiramel, Uma Preman and Kochouseph Chittilappily – all kidney donors themselves.
Thomas says that during his interactions with people he was surprised by the levels of popular understanding about organ donation and transplantation. “In my conversations with people, I realised that we underestimate them. They know what the meaning of ‘brain death’ is. This concept was formulated in 1968 in a report by the Harvard Medical School. In some countries, the introduction of the notion of brain death was met with criticism. In Kerala, my research participants were at least aware of the idea. Common people raised questions – ‘Are they really ‘dead’ when you say ‘brain dead’? They may not have the vocabulary to express themselves accurately, but they knew that brain death is the necessary condition for deceased organ donation,” says Thomas.
People are often adamant about who they will donate their organs too – not to a rich patient, and in the case of the liver, not to someone with cirrhosis because of the belief that only alcoholism brings it on. This after all is the ultimate altruism and people think it is deserving of a ‘good’ recipient.
In Kerala of the 1990s, organ harvesting was mostly talked about in terms of crime. “Not all of it was untrue, especially in the tribal belts. But it was always only about exploitation. Kerala witnessed a kidney sale scandal in 2002. The shift in this context came in the late 2000s; the conversation shifted from scepticism and scandals to the idea of giving life,” he says.
Thomas points out that the idea of organ transplant has travelled a long way even in Malayalam cinema – from a creative gimmick to realistic plot material. In the 1992 film, Ayushkalam, a heart transplant allows recipient Mukesh find the killers of his donor Jayaram with the help of his conversations with latter’s ghost. “From that to a film like Traffic that talked of a transplant corridor, which was actually created in Chennai, the organ donation story has matured considerably,” Thomas says.
The pioneer in the field was Uma Preman, who in 1999 became the first known altruistic kidney donor in the state. This was not too long after the passage of the Transplantation of Human Organs Act, 1994. Preman has blazed another trail – she worked on the idea of making medical information freely available to empower people. Her Guruvayoor-based Shanti Medical Centre was the result of this attempt. Such initiatives, along with its high literacy rate, have made Kerala a fertile ground for the energetic organ donation drive it is now witnessing.
Beyond the numbers, though, at the end of the day most cadaveric organ donations are done at inarguably the most traumatising moments of life. And this is where the transplant coordinator steps in with a variety of skills – relevant medical and legal knowledge, counselling skills, a lot of compassion and an equal amount of tact. This is also why KNOS rechristened its organ donation programme Mrithasanjeevani – the act that brings another back from the brink of death.
The state has a healthy network of dedicated coordinators at hospitals that engage in transplants, both public and private. Once a coordinator is informed by a hospital of a ‘suspected’ brain death, work begins on the unenviable task of walking into the bereaved family’s panic and distress. The coordinator slowly builds a rapport with the distressed family without quite mentioning donation. It is only once brain death is officially confirmed that the first overture is made.
“It needs compassion and persistence, a systematic effort. You are faced with anger, grief and sometimes acceptance. ‘Ipozhaano ningal idellaam chodichondu varunnadu? (Is this the time to talk about all this?)’. Sometimes you walk away and don’t press the point, and return later. Sometimes you have to return more than once,” says Aneesh.
Two months ago, Aneesh coordinated the highly publicised transplant of the organs harvested from Vishal, a 15-year-old accident victim in Thiruvananthapuram. “We approached the father for organ donation. The man had actually come to town to visit his son, and only got to see his lifeless body. He didn’t respond, just stood with tears streaming down his face. It was six hours before he would agree, and we created a green corridor to transport his organs with help from the chief minister to bring life to five needy people,” Aneesh recalls.
Back in Pootharakkal, Father Chiramel’s band of volunteers are still working on changing the minds of those who hold out against the campaign, especially the elderly. Will it hurt? Will the aftermath of organ harvesting leave the body distressingly misformed? “We are working on allaying these fears,” says activist Babu Pootharakkal. “It will take time but it will happen.”.
Published in arrangement with GRIST Media