[h=1]The Body Politic[/h][h=3]Kerala’s mass movement for organ donation[/h]By KUSHANAVA CHOUDHURY | 1 March 2016
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COURTSEY LAKESHORE HOSPITAL
Doctors estimate that some 200,000 Indians develop kidney disorders severe enough to require transplants every year, but that only about 8,000 transplants are performed.
UMA PREMAN STOOD UP, pulled aside the pallu of her sari, and showed me a long, sickle-shaped scar on her right abdomen. “32 stitches,” she said. “People say I look young, and I tell them when you lose a kidney you lose ten years.”
Preman is 45 years old, petite and constantly animated. I met her in October, in the office of the Santhi Medical Information Centre—an NGO she founded in 1997, and runs from the ground floor of her house, in a bucolic neighborhood in the temple town of Guruvayur, in central Kerala. She told me her story from behind her desk, reeling off medical facts, sharing jokes, and occasionally breaking tempo to call out to an assistant for a file she wanted me to see. On the walls around us were numerous prize certificates she had received for her social work, including one proclaiming her “Woman of the Year 2014.”
In 1998, in her capacity as a social worker, Preman took an 18-year-old who had fallen from a tree to a hospital in Coimbatore, in Tamil Nadu. Doctors there told her that the patient had suffered “brain death”: he had no electrical function in the brain, but blood was still pumping through his body because he was on life support. In such cases, multiple organs, including the heart, lungs, pancreas, kidneys and liver, can be extracted for transplants. “The neurosurgeon there told me, ‘Uma, why don’t you suggest to the family that he do cadaveric transplantation?’” Preman recalled. The family donated both the young man’s kidneys. “That was my first exposure to transplants.”
A year later, she was back in the same hospital with a kidney patient. Sitting in the waiting room next to her was Salil Balakrishnan. At the time, Balakrishnan, who is also from Guruvayur, was 24 years old, and worked in an automotive workshop in Tamil Nadu. He had a hereditary kidney disorder, which had claimed his mother when he was a teenager. His kidneys were failing, and he was dying. He needed a transplant, and the only choice seemed to be to buy one on the black market. Balakrishnan told Preman his story, and, in an instant, she made a decision. “I said, ‘I will give you,’” Preman recalled, “because I had that cadaveric transplant story in my mind.”
Tests of their blood groups and a number of other biological markers showed that Preman was a matching donor, and she went before a medical board in Chennai to prove that she was not being paid to donate. She and Balakrishnan had surgery—whence the 32 stitches, as this was before today’s less invasive surgical procedures—and the transplant was a success. Preman became, by all accounts that I heard, the first person from Kerala known to have voluntarily donated a kidney to a stranger.
At the time, it was very rare for people to donate kidneys even to close relatives, as doing so was considered dangerous. How could you ask your daughter or sister to put her life at risk to save yours? Freely giving a kidney to a stranger was almost unthinkable. In Guruvayur, Preman became a phenomenon.
“I came back to Guruvayur and suddenly 300 people need my other kidney,” she said, laughing. Preman realised there was an enormous demand for kidneys, so her organisation began going to people’s homes, urging them to donate at least to members of their own families. She and Balakrishnan often met kidney patients’ families together, and theirs proved a powerful example. Over the last decade and a half, Preman told me, they have motivated several hundred donations within families.
In time, Preman’s NGO also started a unit to provide low-cost dialysis. Most kidney patients can live a long time “if they can do ten dialyses a month,” Preman explained, and that way many can also avoid a transplant altogether. A new kidney cannot be the only option, she realised, because post-operation costs, particularly for medicines, can be as high as R10,000 a month, and often there are related health complications.
Balakrishnan suffered complications after the transplant, but he managed to pull through. For a while, he continued to work in Tamil Nadu, but he wanted to move back home to Guruvayur. His parents were dead and his sister was married, so he came to live in Preman’s house. Now, with his brother-in-law away working in the Gulf, his sister and her two children live there too.
People who sell a kidney only get money, Preman told me, but she had received something else. “Everyday my prayer is, ‘Oh God, please take care of Salil.’ He is my brother.”
HUMANS HAVE TWO KIDNEYS, each roughly the size of a mango, located at the bottom of the ribcage and on either side of the spine. These make urine by filtering waste and excess water from the blood, which pumps through them at roughly a litre per minute. When they start to fail, toxins build up in the body, causing nausea, fatigue, muscle cramps, and any of a number of other symptoms. If the dysfunction is untreated, the consequences are fatal. Yet someone with two working kidneys can do perfectly fine with only one. Hence, humans can donate a kidney while still alive. (We can also donate a part of our liver, as it soon grows back.)
Estimates say that about 10 percent of the global population suffers from some degree of kidney dysfunction, often as a consequence of diabetes or high blood pressure. If diagnosed early, in many cases kidney disease can be controlled through diet and medication. But for patients with advanced kidney disease—that is, without a single working kidney—the only way to survive is dialysis. This entails filtering the blood externally, through a machine, three times a week for three to five hours each time. Without this, a patient can survive, at best, for a matter of weeks. But even with dialysis, many patients require a transplant after a time. By some calculations, as many as 90 percent of people with advanced kidney disease die for lack of dialysis or a transplant.
India does not have centralised reporting of figures on kidney disease or organ transplants, and state-by-state data is patchy and often unreliable. But, according to Dr Saudan Singh, the director of the National Organ and Tissue Transplant Organisation—a central government body working to create a coordinated organ-transplant network across India—every year some 200,000 Indians develop kidney disorders severe enough to require transplants, and only about 8,000 kidney transplants are performed.
Of those, a large number—nobody knows just how many—involve donations from close relatives of the recipients. A small but growing fraction of cases involve cadaveric transplants, from brain-dead donors. All other instances involve unrelated donors and recipients, and here a large share of the “donors” are paid. This is illegal. In 1994, India banned all commercial trade in organs, and defined strict rules for both cadaveric and live donations. Yet, at the time, neither the central government nor any state offered a reliable, legal method for getting a kidney, leaving many patients to choose between breaking the law or death.
Legally, donors unrelated to their intended recipient have to go before an authorised medical committee to prove that they are not being paid or coerced. Yet, across India, networks of agents connect willing sellers to patients in need, and coach them in how to convince screening committees that their motives are altruistic. Numerous websites offer listings of people ready to sell kidneys and livers, and listings of people looking to buy them.
The illicit trade in kidneys was long entrenched in Kerala, too, and the state has witnessed several related scandals. For instance, in 2002, investigative journalists unearthed a racket in central Kerala that involved many donors from poor tribal communities supplying kidneys to private hospitals. One tribal woman was pressured into donating by her family, even though she was pregnant at the time and, for that alone, should have been disqualified by a screening committee. A tribal man agreed to sell a kidney for R3 lakh, but later complained that middlemen had duped him out of the money.
Since the late 2000s, though, the situation in Kerala has changed. A popular movement for organ donation has taken hold, propelled in no small part by exemplars such as Preman. Remarkably, the black market is now in retreat. Last autumn, I set out for Kerala to better understand how this unique movement took shape. I tracked down individuals who have been crucial to it, and spoke to numerous experts in the state and beyond. I quickly realised that this is not a story just about kidneys, or organ donation, or medicine. This is also a story about how social change happens. I understood that when it comes to organ transplants, medicine as a technical discipline has now hit hurdles beyond its power. For all the innovations in transplantation over the last decades—including methods that have lowered the rates of rejection of transplanted organs by recipients’ bodies, and so greatly increased the pool of potential donors for each patient—medicine is still powerless to produce organs itself, and so constrained by a lack of donors. Every transplant, inescapably, involves a deeply human, and hence social, interaction between a donor, a recipient, and their loved ones—one which brings into play questions of social organisation and mores. Simply put, how people approach organ transplants tells you a lot about the society they live in. And as all of India confronts the same chronic shortage of legal donors that Kerala is steadily overcoming, there are lessons it could draw from how this society responded when faced with a matter of life or death.
DO YOU KNOW that my father named me after Salil Chowdhury, Salil Balakrishnan asked me when we met in Guruvayur. I knew the Kolkata-born composer and songwriter’s extensive work in Bengali, and some of his Hindi film music too. Every night, I told Balakrishnan, I put my daughter to sleep with one of Chowdhury’s Bengali songs. But I had no idea that Chowdhury was also well known in Kerala, where neither Hindi nor Bengali has great popularity.
Balakrishnan told me that Chowdhury set the music for several hit Malayalam films, including the classic Chemmeen—based on an eponymous novel about a tragic love across religious lines in a fishing village. It was the film’s fiftieth anniversary, and he had recently seen it again on television. What amazed him, he said, is that Chowdhury, in his music, seems to have understood Malayalis’ deepest emotions even without knowing Malayalam.
Balakrishnan is now 40 years old, and runs a workshop where he builds ambulances. He is soft spoken, especially when compared to Preman. I asked about his health, and he said he was fine. Besides a home and a single pair of kidneys, I learnt, he and Preman also share a great love of cinema.
Once in a while, Preman told me, “I’ll call him at the workshop and say, ‘What do you feel like?’ And he’ll say, ‘Let’s go for a movie,’ and I’ll feel like going for a movie.”
- See more at: http://www.caravanmagazine.in/repor...-movement-organ-donation#sthash.MUHaMZKv.dpuf
Previous ImageNext Image
Doctors estimate that some 200,000 Indians develop kidney disorders severe enough to require transplants every year, but that only about 8,000 transplants are performed.
UMA PREMAN STOOD UP, pulled aside the pallu of her sari, and showed me a long, sickle-shaped scar on her right abdomen. “32 stitches,” she said. “People say I look young, and I tell them when you lose a kidney you lose ten years.”
Preman is 45 years old, petite and constantly animated. I met her in October, in the office of the Santhi Medical Information Centre—an NGO she founded in 1997, and runs from the ground floor of her house, in a bucolic neighborhood in the temple town of Guruvayur, in central Kerala. She told me her story from behind her desk, reeling off medical facts, sharing jokes, and occasionally breaking tempo to call out to an assistant for a file she wanted me to see. On the walls around us were numerous prize certificates she had received for her social work, including one proclaiming her “Woman of the Year 2014.”
In 1998, in her capacity as a social worker, Preman took an 18-year-old who had fallen from a tree to a hospital in Coimbatore, in Tamil Nadu. Doctors there told her that the patient had suffered “brain death”: he had no electrical function in the brain, but blood was still pumping through his body because he was on life support. In such cases, multiple organs, including the heart, lungs, pancreas, kidneys and liver, can be extracted for transplants. “The neurosurgeon there told me, ‘Uma, why don’t you suggest to the family that he do cadaveric transplantation?’” Preman recalled. The family donated both the young man’s kidneys. “That was my first exposure to transplants.”
A year later, she was back in the same hospital with a kidney patient. Sitting in the waiting room next to her was Salil Balakrishnan. At the time, Balakrishnan, who is also from Guruvayur, was 24 years old, and worked in an automotive workshop in Tamil Nadu. He had a hereditary kidney disorder, which had claimed his mother when he was a teenager. His kidneys were failing, and he was dying. He needed a transplant, and the only choice seemed to be to buy one on the black market. Balakrishnan told Preman his story, and, in an instant, she made a decision. “I said, ‘I will give you,’” Preman recalled, “because I had that cadaveric transplant story in my mind.”
Tests of their blood groups and a number of other biological markers showed that Preman was a matching donor, and she went before a medical board in Chennai to prove that she was not being paid to donate. She and Balakrishnan had surgery—whence the 32 stitches, as this was before today’s less invasive surgical procedures—and the transplant was a success. Preman became, by all accounts that I heard, the first person from Kerala known to have voluntarily donated a kidney to a stranger.
At the time, it was very rare for people to donate kidneys even to close relatives, as doing so was considered dangerous. How could you ask your daughter or sister to put her life at risk to save yours? Freely giving a kidney to a stranger was almost unthinkable. In Guruvayur, Preman became a phenomenon.
“I came back to Guruvayur and suddenly 300 people need my other kidney,” she said, laughing. Preman realised there was an enormous demand for kidneys, so her organisation began going to people’s homes, urging them to donate at least to members of their own families. She and Balakrishnan often met kidney patients’ families together, and theirs proved a powerful example. Over the last decade and a half, Preman told me, they have motivated several hundred donations within families.
In time, Preman’s NGO also started a unit to provide low-cost dialysis. Most kidney patients can live a long time “if they can do ten dialyses a month,” Preman explained, and that way many can also avoid a transplant altogether. A new kidney cannot be the only option, she realised, because post-operation costs, particularly for medicines, can be as high as R10,000 a month, and often there are related health complications.
Balakrishnan suffered complications after the transplant, but he managed to pull through. For a while, he continued to work in Tamil Nadu, but he wanted to move back home to Guruvayur. His parents were dead and his sister was married, so he came to live in Preman’s house. Now, with his brother-in-law away working in the Gulf, his sister and her two children live there too.
People who sell a kidney only get money, Preman told me, but she had received something else. “Everyday my prayer is, ‘Oh God, please take care of Salil.’ He is my brother.”
HUMANS HAVE TWO KIDNEYS, each roughly the size of a mango, located at the bottom of the ribcage and on either side of the spine. These make urine by filtering waste and excess water from the blood, which pumps through them at roughly a litre per minute. When they start to fail, toxins build up in the body, causing nausea, fatigue, muscle cramps, and any of a number of other symptoms. If the dysfunction is untreated, the consequences are fatal. Yet someone with two working kidneys can do perfectly fine with only one. Hence, humans can donate a kidney while still alive. (We can also donate a part of our liver, as it soon grows back.)
Estimates say that about 10 percent of the global population suffers from some degree of kidney dysfunction, often as a consequence of diabetes or high blood pressure. If diagnosed early, in many cases kidney disease can be controlled through diet and medication. But for patients with advanced kidney disease—that is, without a single working kidney—the only way to survive is dialysis. This entails filtering the blood externally, through a machine, three times a week for three to five hours each time. Without this, a patient can survive, at best, for a matter of weeks. But even with dialysis, many patients require a transplant after a time. By some calculations, as many as 90 percent of people with advanced kidney disease die for lack of dialysis or a transplant.
India does not have centralised reporting of figures on kidney disease or organ transplants, and state-by-state data is patchy and often unreliable. But, according to Dr Saudan Singh, the director of the National Organ and Tissue Transplant Organisation—a central government body working to create a coordinated organ-transplant network across India—every year some 200,000 Indians develop kidney disorders severe enough to require transplants, and only about 8,000 kidney transplants are performed.
Of those, a large number—nobody knows just how many—involve donations from close relatives of the recipients. A small but growing fraction of cases involve cadaveric transplants, from brain-dead donors. All other instances involve unrelated donors and recipients, and here a large share of the “donors” are paid. This is illegal. In 1994, India banned all commercial trade in organs, and defined strict rules for both cadaveric and live donations. Yet, at the time, neither the central government nor any state offered a reliable, legal method for getting a kidney, leaving many patients to choose between breaking the law or death.
Legally, donors unrelated to their intended recipient have to go before an authorised medical committee to prove that they are not being paid or coerced. Yet, across India, networks of agents connect willing sellers to patients in need, and coach them in how to convince screening committees that their motives are altruistic. Numerous websites offer listings of people ready to sell kidneys and livers, and listings of people looking to buy them.
The illicit trade in kidneys was long entrenched in Kerala, too, and the state has witnessed several related scandals. For instance, in 2002, investigative journalists unearthed a racket in central Kerala that involved many donors from poor tribal communities supplying kidneys to private hospitals. One tribal woman was pressured into donating by her family, even though she was pregnant at the time and, for that alone, should have been disqualified by a screening committee. A tribal man agreed to sell a kidney for R3 lakh, but later complained that middlemen had duped him out of the money.
Since the late 2000s, though, the situation in Kerala has changed. A popular movement for organ donation has taken hold, propelled in no small part by exemplars such as Preman. Remarkably, the black market is now in retreat. Last autumn, I set out for Kerala to better understand how this unique movement took shape. I tracked down individuals who have been crucial to it, and spoke to numerous experts in the state and beyond. I quickly realised that this is not a story just about kidneys, or organ donation, or medicine. This is also a story about how social change happens. I understood that when it comes to organ transplants, medicine as a technical discipline has now hit hurdles beyond its power. For all the innovations in transplantation over the last decades—including methods that have lowered the rates of rejection of transplanted organs by recipients’ bodies, and so greatly increased the pool of potential donors for each patient—medicine is still powerless to produce organs itself, and so constrained by a lack of donors. Every transplant, inescapably, involves a deeply human, and hence social, interaction between a donor, a recipient, and their loved ones—one which brings into play questions of social organisation and mores. Simply put, how people approach organ transplants tells you a lot about the society they live in. And as all of India confronts the same chronic shortage of legal donors that Kerala is steadily overcoming, there are lessons it could draw from how this society responded when faced with a matter of life or death.
DO YOU KNOW that my father named me after Salil Chowdhury, Salil Balakrishnan asked me when we met in Guruvayur. I knew the Kolkata-born composer and songwriter’s extensive work in Bengali, and some of his Hindi film music too. Every night, I told Balakrishnan, I put my daughter to sleep with one of Chowdhury’s Bengali songs. But I had no idea that Chowdhury was also well known in Kerala, where neither Hindi nor Bengali has great popularity.
Balakrishnan told me that Chowdhury set the music for several hit Malayalam films, including the classic Chemmeen—based on an eponymous novel about a tragic love across religious lines in a fishing village. It was the film’s fiftieth anniversary, and he had recently seen it again on television. What amazed him, he said, is that Chowdhury, in his music, seems to have understood Malayalis’ deepest emotions even without knowing Malayalam.
Balakrishnan is now 40 years old, and runs a workshop where he builds ambulances. He is soft spoken, especially when compared to Preman. I asked about his health, and he said he was fine. Besides a home and a single pair of kidneys, I learnt, he and Preman also share a great love of cinema.
Once in a while, Preman told me, “I’ll call him at the workshop and say, ‘What do you feel like?’ And he’ll say, ‘Let’s go for a movie,’ and I’ll feel like going for a movie.”
- See more at: http://www.caravanmagazine.in/repor...-movement-organ-donation#sthash.MUHaMZKv.dpuf
