Paruvathamalai

Paruvathamalai is a Hindu temple in Tamil Nadu built 2,000 years ago on top of a Paruvathamalai, Tamil Nadu Hindu Temple, #drbarryindia, Lord Malikarjunaswamy, India travel experience, bLifeNY, MOHAN Foundation, Dr Chris Barrymountain 3,500 feet above sea level. My friend Jango hadn’t been there but he wanted to go with his friends and invited me along. He thought we could leave at 6pm and get back by midnight or 1am so I said sure. Jango didn’t know that Paruvathamali was 300 kilometers from Chennai. Kumar the driver picked us up in T. Nagar and drove us to Palavarum where Jango’s friend Mani and his crew were waiting. So in the truck packed Mani, Logesh, Balaji (1), Amal, Kathi, Balaji (2) and Rajesh along with the original three and off to Thiruvannamali District 3 hours away. We stopped for dinner (400 rupees or $6.55 to heartily feed 10 guys) and stopped to fix a flat tire. We arrived at the base of the mountain at midnight. It was raining a little. Jango said “take off your shoes”. Okay maybe a nice leisurely stroll up to the temple on smoothly paved paths. Or maybe not. How about gravel roads, dirt paths, lots of rocks and boulders? It started out innocently enough with the gravel road at a gentle incline but my feet were killing me with the little stones. It was excruciating at times. Then came the steps. Step after step after step. Then came the rocks. It felt more comfortable to walk on the larger rocks but my feet were killing me. So many rocks going all the way up. Paruvathamalai, Tamil Nadu Hindu Temple, #drbarryindia, Lord Malikarjunaswamy, India travel experience, bLifeNY, MOHAN Foundation, Dr Chris BarryAlong the way were many makeshift huts selling food, water, and junk food. We stopped frequently to rest and smoke. Lots of nicotine and ganja among the young men pilgrims but the many women and children pilgrims did not partake and Mani’s crew hid the ganja when the women passed by. Apparently, Lord Malikarjunaswamy (an avatar of Siva), likes to smoke weed as well, so many people really like him for that. No alcohol though. You can’t go inside a Hindu temple if you’ve been drinking. Thank Siva for that. Alcohol would just make for many broken bones and closed head injuries along the path to Paruvathamalai. No shoes no booze. Higher up, things got downright treacherous but it was too late to turn back. I didn’t want to anyway. Wet rocks giant rocks boulders with little footholds and metal bars Paruvathamalai, Tamil Nadu Hindu Temple, #drbarryindia, Lord Malikarjunaswamy, India travel experience, bLifeNY, MOHAN Foundation, Dr Chris Barryto pull yourself up and up and up. Some of the bars were loose. Logesh kept chanting “Go slow Krish, be careful Krish”. Sometimes Jango would say “Don’t talk Krish” because he was terribly afraid that I would fall down and hurt myself. Mani, Balaji 2, Logesh, and Balaji 1 all followed suit and tried to hold my hand along the way but this was making it hard for me to keep my balance (that and the water bottle they insisted that I carry with me until I said enough and made the crew hold it for me in their backpack). I was unsteady because of the pain in my feet. I told Mani that I’ve climbed many mountains in my youth but always with boots on. “Don’t the shoes make you slip?” I explained big hiking boots like army boots and he understood but we were barefoot as a sign of devotion to god. We were walking up Paruvathamalai, Tamil Nadu Hindu Temple, #drbarryindia, Lord Malikarjunaswamy, India travel experience, bLifeNY, MOHAN Foundation, Dr Chris Barrythe mountain in the middle of the night in the rain as a sign of devotion to God. Barefoot. Mani’s crew included Jango and Mani was in charge (a few years older) of the crew. Jango was the special crew member tonight because he brought along a real white man from America. Apparently, some Indians just want to touch me or speak with me because I’m so different and idealized. The kids in the crew, aged 18-21 (don’t get me wrong: the best way to do interesting and fun things in India is to hang out with young, unmarried men because they have the time), were not upper class. They were a little rugged but so kind. Kathi had some impressive tattoos (no big deal in America but fucking awesome in India). Logesh painted Paruvathamalai, Tamil Nadu Hindu Temple, #drbarryindia, Lord Malikarjunaswamy, India travel experience, bLifeNY, MOHAN Foundation, Dr Chris Barryhis left fingernails and two toenails bright pink—a simple “fashion statement” for rough kids. Balaji 1 was a beautiful boy but with many scars. Rajesh had some East Asian blood in him so his pals teased him about not being able to grow a moustache. Balaji 2, dressed like a movie star, served as my bodyguard on many occasions on the way up the mountain. Amal (“Michael”) was quiet and sophisticated and looked like he didn’t quite belong, but he was there all the way with us. They all took care of me and I stayed with them. Then it got more intense: ladders, both stone and metal, going straight up, up ,up, forever up. I thought at one point we were getting closer but it was just the makeshift hut people entertaining their guests in the distance. Very close to the top it was only one person at a time. Everyone waited patiently for their turn. Scaling the open rocks and looking down oh so far I was never afraid. But this was insanely dangerous! How did I get here? I decided to never mind and focus on the mission: I have to go see Lord Siva at the top of the mountain. We got to the top probably around 3 am (my phone battery died long before) and it was warm inside. Many pilgrims sleeping peacefully on the floors. We snaked our way to the inner sanctum to see God. I am not a Hindu, I am a Buddhist. But I know when I’m in a holy place, so I clasped my hands in front of me in prayer and devotion to the energy of the universe. I didn’t enter every sanctum in the temple because I just don’t know enough yet. Maybe when I come back again (Jango doesn’t want to come back once is enough for him). The Hindus among us entered the inner sanctum and took pooja with the Priest, one by one. The pilgrims made their offerings (one rupee suffices) and in turn were allowed to perform ancient fire prayer rituals after which the Priest donned their foreheads with brightly colored parallel streaks in devotion to Lord Malikarjunaswamy and all the other billion or so Gods in India. Then I thought and asked: “Is there any other way down from Paruvathamalai, Tamil Nadu Hindu Temple, #drbarryindia, Lord Malikarjunaswamy, India travel experience, bLifeNY, MOHAN Foundation, Dr Chris Barryhere?” I was in no mood to go through this again. Or so I thought. We stopped outside the temple to light a fire with petroleum based fire tablets called “karpuram” in Tamil. Such a small, cute fire even with several pellets. But the heat! Jango asked Kathi to ring out my t shirt which was soaking wet with rain and sweat. I thought it wasn’t going to help but between Kathi’s expert wringing and the little karpuram fire, I actually started to get a little dryer and definitely felt warmer. Amazing little fire. So we were ready to go down. The insane stretches of the trail seemed less insane and were easier to negotiate going down. By the time we had gotten to the steps, we were ready to start running. Stopped for breakfast on the trail down including coffee and these amazing deep fried rice cakes with gravy oh my god. We stopped to look at the mountains around and the land below and the sky above. We walked back to Kumar waiting for us in the car. I tried to sleep and maybe got a few minutes here and there out of pure exhaustion, but I couldn’t quite sleep yet. My feet didn’t hurt anymore. My muscles were starting to get stiff I’ll be sore tomParuvathamalai, Tamil Nadu Hindu Temple, #drbarryindia, Lord Malikarjunaswamy, India travel experience, bLifeNY, MOHAN Foundation, Dr Chris Barryorrow. We stopped for lunch just outside of Chennai around 1pm. Another delicious and inexpensive meal for everyone. We dropped Mani and the crew off in Palavarum, one by one school bus style. We all said goodbye and I hoped that I could get my photos to them somehow even though they weren’t on facebook or whatsapp. I thanked Mani especially for his leadership of a kind crew. Jango argued with Kumar on the way back to T. Nagar about his fee. We settled on 6,000 Rupees ($98 USD) and I was prepared to pay him more so I gave him a little tip for his good driving. I still couldn’t quite sleep when I returned to the GLM Meridian Hotel. I had never experienced something quite so different and intense in all my life. And I’ve seen and done a lot of things. The Hindus want to see God. I saw God that night in Paruvathamalai. I saw God in many ways.

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Living Donor Liver Surgery Risks in India: How Can They Be Known?

What is the risk of undergoing a living donor hepatectomy (removal of a segment of liver WLYThomasfor transplant) in India?

No one knows.

India has no centralized repository of transplant donor and recipient information, so it is difficult to say even how many transplants are performed every year, let alone what the outcomes are.

To be perfectly fair, the world literature presents a guess as to the actual mortality risk of living donor hepatectomy due to underreporting and only relatively recently established reporting requirements (such as in the US). So this post is a plea for accurate recording of outcomes internationally, not just India. But India really must start doing this now to catch up to world standards.

Established transplant programs in the West and Far East maintain detailed outcomes databases in real time, so published results are reliable and transparent. For instance, the 1 year graft survival for living donor liver transplant recipients in the US is 81%. For deceased donor transplant, the 1 year, 3 year and 5 year results are 87%, 78% and 73%, respectively. The mortality risk for living donor hepatectomy is anywherLiving Donor Liver Surgery Risks, MOHAN Foundation, #drbarryindia, Dr Chris Barry, Dr. Soin, living donor liver transplant in India, e between 0.2-2.0%. The reasons for such a wide range include vague and unsubstantiated reports of donor deaths, uncertainty of the exact number of transplants performed.

In a 2007 report by Dr. A.S. Soin, the founding father of living donor liver transplant in India, he reported that there were 22 centers in India performing a total of 250 living donor liver transplants and no donor deaths. A recent donor death in 2010 puts the risk at approximately 0.4% (1/250) in India. That is, if all donor deaths have been reported. Two papers from 2004 vaguely mention two donor deaths in India, but did not provide any details.

So, it’s probably fair to say that the risk of donor hepatectomy death is on par with the world literature based on what has been reported, but honestly no one can say for sure.

Nonfatal complications (e.g., wound infections, bile leaks, postoperative infections or cerebrovascular accidents) likely vary from center to center depending on volume and experience, and these morbidity rates probably vary widely. For example, in Dr. Soin’s report, he stated that “success rates” of living donor transplants in India ranged from “0-92%” (exactly what he means by success rate—3 month graft or patient survival? One year graft or patient survival? is not stated clearly in his paper). He reports a “major complication” rate for living donors of 1%. Again, we just don’t know because transplant centers are not obligated to provide this information to any centralized oversight body. In the US, the reported donor complication rate is 38% with two donors requiring emergency transplant for liver failure after donation.

In the United States, the United Network of Organ Sharing (UNOS) oversees proper collection of donor and recipient data, as well as transplant center results. If a center is noncompliant with their reporting or consistently underperforms relative to the national average, they face the threat of transplant accreditation by UNOS. This level of accountability needs to be in place in India so that the public trusts the transplant system. This goes for living donor as well as deceased donor transplantation.

Living donor liver transplantation entails two extremely complicated surgeries that should always involve at least two highly experienced surgeons: one for the donor operation and one for the recipient operation. The donor operation is risky because a perfectly healthy donor could die or suffer surgical or medical complications. The (transplant) recipient operation is risky because a smaller segment of liver with smaller blood vessels and bile ducts needs to be perfectly connected.

Given the high stakes, liver transplant surgeons are ethically obligated to practice evidence based medicine and inform their patients beforehand the known risks based on available (hopefully accurate) data. The hero worship, cult of personality approach to surgery that is so prevalent in this country needs to be replaced with a rational, outcomes based approach for the sake of patient safety and international respect.

 

Cultural Note

Dancing. When I first arrived in T Nagar, Chennai (the bustling commercial district), I

landed on Thomas Road, just off Thyagaraya Avenue. Walking south every day to my gym, I enjoyed the simple life of getting your water from manual pumps and the goats walking around. My Mom likes goats for some reason. I like them too. Not quite a slum, but definitely a low budget neighborhood. This is how most of the people in Chennai live. I liked Thomas Road immediately and made a point to walk up and down even if it was out of my way.

People started to recognize me with my daily pilgrimage to the gym and they were delighted that I knew just a few words in Tamil. But what really got them to like me was when I danced with them.

Take a stroll anywhere, anytime, somewhere in India and you are likely to run into a band of drummers. Almost always teenage boys walking from one street corner to the next then beginning their next jam session for free. There’s something infectious about the Tamil beat, so I found myself on more than one occasion dancing along. And the crowd went wild. They remembered me the next day on Thomas Road and I knew I was inThomasiron with these people.

Dancing seemed to me to be a simple and intimate gesture to express my joy in being with these people. It’s a disarming gesture: how much of a threat can this guy be if he’s dancing to our drums? I never saw it so much as dancing for my safety, but when I told other friends that I like to hang out on Thomas Road, they first say “You should be careful , it’s dangerous there.”

No it’s not. Not when you walk up and down that street all the time, when you get your haircut there for 60 Rupees, when you get your lungi sewn into the proper tube shape and they fix your buttons and iron your shirts for practically nothing and a free cup of coffee to boot. And when you dance with them.

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Doctors’ Reluctance to Declare Brain Death in India

We are working at the MOHAN Foundation to promote deceased donor transplant andDoctors’ Reluctance to Declare Brain Death in India, MOHAN Foundation, #drbarryindia, organ donation in India, deceased donor transplant in India, brain death, #victoryoverdeath=#organdonation, Dr. Chris Barry, bLifeNY, Chennai trash, Swachh Bharat, Narendra Modi organ donation in India. In doing so, we find that the biggest barrier to increasing this activity is not the public’s perception of organ donation (although this too requires constant education to increase awareness), but doctors’ reluctance to declare brain death in India. Apparently, doing so is bad for business.

Organ transplantation has a bad reputation in India. This is mostly due to the thriving kidney black market that was most active in the 80s and 90s, but still exists even to this day. At its height, there were rumblings of kidnappings and murders to keep the supply of organs going and, always, there is exploitation of desperately poor people who would do anything for money. So, not only is there public distrust for transplant professionals, but even many medical subspecialties distrust us.

The reality that most transplants in India are performed at expensive private hospitals (in cash) using living donors does not help transplant’s reputation either. It is something only for the rich; why would a poor family consent to organ donation of their loved one if all of the organs will go to only privileged people?

Finally, many doctors charged with the responsibility of declaring brain death Doctors’ Reluctance to Declare Brain Death in India, MOHAN Foundation, #drbarryindia, organ donation in India, deceased donor transplant in India, brain death, #victoryoverdeath=#organdonation, Dr. Chris Barry, bLifeNY, Chennai trash, Swachh Bharat, Narendra Modi(Neurosurgeons and Neurologists in particular) are loathe to do so. Not only does it take time away from more immediate responsibilities and there is often no professional compensation available, but more importantly, doctors fear for their reputations. The thinking goes that if word gets out in the public that a particular doctor declared brain death, then she or he is more interested in getting the organs than saving a life. Declaring brain death is perceived to be a threat to one’s livelihood.

There needs to be a fundamental shift in perspective. We all die. Sometimes, talented and capable doctors can save the lives of people with critical injuries or catastrophic medical illnesses, but not everyone survives despite heroic efforts. Such a death should not be considered a failure. The good doctor did everything she or he was caDoctors’ Reluctance to Declare Brain Death in India, MOHAN Foundation, #drbarryindia, organ donation in India, deceased donor transplant in India, brain death, #victoryoverdeath=#organdonation, Dr. Chris Barry, bLifeNY, Chennai trash, Swachh Bharat, Narendra Modipable of, but nature took its course. Now, if this death could proceed to organ donation, it would be an incredible victory in that eight lives could be saved through organ donation and up to fifty lives could be improved through tissue donation. This “Victory over death through organ donation” idea needs to be thoughtfully considered by all medical professionals and hospital administrators.

Deceased donor transplantation has the potential to democratize transplant in India, with transplants being offered in select, highly trained Government Hospitals to people regardless of socioeconomic status, as well as continued activity in the private sector. Deceased donor transplant has the potential to eradicate (or at least greatly diminish) the organ black market in India. The potential exists to double or triple the number of transplants performed if systems were in place and attitudes were adjusted to move forward with deceased donor transplant programs. Such an increase in volume would obviate the need for people to sell their organs to shady brokers, because fewer people in need of transplants would seek means outside of a legal and transplant network to achieve their surgery. Also, increasing the number of transplants nationwide is in everyone’s best economic interests, from the hospital administrators, to doctors, to patients, and to society in general. Beyond economic matters, helping people to live fuller, longer lives has spiritual and social benefits as well.

Although hospital administrators may be willing to learn more about the potential Doctors’ Reluctance to Declare Brain Death in India, MOHAN Foundation, #drbarryindia, organ donation in India, deceased donor transplant in India, brain death, #victoryoverdeath=#organdonation, Dr. Chris Barry, bLifeNY, Chennai trash, Swachh Bharat, Narendra Modieconomic benefits of promoting organ donation, many doctors will not even listen to transplant professionals. So the change of perspective needs to come within their own ranks. Hopefully, some Indian Neurosurgeon out there can understand the “victory over death through organ donation” concept and become a champion for this cause. If a thoughtful discussion about organ donation among Neurosurgeons took place on a national level, only then can we move toward a mutual understanding that respects professional autonomy and conveniently allows doctors to participate in the cycle of life by embracing organ donation.

 

Cultural Note

When I first flew in to Chennai, it was a beautiful sunny morning. From the sky I saw Doctors’ Reluctance to Declare Brain Death in India, MOHAN Foundation, #drbarryindia, organ donation in India, deceased donor transplant in India, brain death, #victoryoverdeath=#organdonation, Dr. Chris Barry, bLifeNY, Chennai trash, Swachh Bharat, Narendra Modithousands of brightly colored dots, the wildly technicolor spirit of India (especially Southern India) in all of its glory on so many houses and buildings. “I like this place already” I said to myself. On the ground, however, things were not quite so glamorous. Chennai, alas, is a dirty city.

I make no judgments by saying this, it’s the way it is. But perhaps Chennai could be a little cleaner. Prime Minister Narendra Modi wants all of India to be cleaner, as he recently launched his “Swachh Bharat” (Clean India) on the occasion of Mahatma Gandhi’s birthday. This will be a tall order for many places. Chennai garbage collectors, for instance, haul away 4,500 tons of trash each day (according to a recent Times of India report) and 90% of this goes into landfills. There is no recycling of waste, aside from a few affluent pockets in the city. Chennai generates more plastic waste than Mumbai, a city twice the size. Also, there are no programs to encourage proper disposal of compostable waste. So many streets, waterways, and alleys are clogged with unsightly heaps of trash.

“Source segregation” issues aside, there simply aren’t enough trashcans, dumpsters, and Doctors’ Reluctance to Declare Brain Death in India, MOHAN Foundation, #drbarryindia, organ donation in India, deceased donor transplant in India, brain death, #victoryoverdeath=#organdonation, Dr. Chris Barry, bLifeNY, Chennai trash, Swachh Bharat, Narendra Modigarbage collectors to handle the daily onslaught. A friend lamented that he did not like to litter, but if there is no receptacle around, what can you do? I see the garbage collectors working diligently all the time, but the never ending, seemingly unwinnable battle must wear on their spirits.

Another issue is a complete nonchalance regarding littering among many Indians. This is ironic, given the Indian obsession with purity and cleanliness. The insides of most Indian homes are immaculate. So why do people when they’re outside litter indiscriminately? So many times I’ve seen people trying to throw their trash in a can, miss completely, and just walk away. I’ve even seen people open their newly purchased items and throw the wrappers on the store floors. Is this lack of civic responsibility insurmountable?

I don’t think so. The hotels and malls in Chennai are extremely clean because there are enough receptacles that are regularly tended to by a sufficient number of workers. If Chennai would make the investment to increase the number of receptacles, increase the number of garbage collectors, establish recycling and organic waste management programs, and educate its citizens, then the brightly colored houses and buildings would be all the more enjoyable to experience.

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What Will It Cost to Build and Maintain an Indian National Deceased Donor Transplant Network?

The short answer to this question is that it’s going to cost a bomb.cost of transplant in India, deceased donor transplant in India, liver transplant in India, MOHAN Foundation, Dr Chris Barry, #drbarryindia, corporate social responsibility and transplant, Dr Amalorpavanathan Tamil Nadu, Dr Sunil Shroff, Indian Transplant Network, blifeny

India must (and can) build a National Deceased Donor Transplant Program, including a National Transplant Database and Network for organ sharing. Why? Because hundreds of thousands of Indians are dying each year due to a lack of access to transplant surgeries and a paucity of available donor organs. It is estimated that 500,000 (5 lakh) Indians could benefit from life saving organ transplants, but only 5,500 transplants are performed each year, the vast majority (5,000) being living donor transplants. Only kidney and liver transplants can be performed with live donors and only 500 deceased donor transplants (using organs from consented brain dead individuals) are performed yearly. A deceased donor transplant program would also allow these life saving and highly successful surgeries to be performed on all Indian citizens, regardless of socioeconomic status, and curtail the need for an illegal organ trade.

Organ transplantation is not just a one shot surgery then you’re done. Even before the operation, candidates must be scrupulously evaluated for their medical, surgical, psychosocial, and financial suitability to even be placed on the waiting list for an organ. This preoperative testing and selection costs, on average, $25,400 in the US (Rs. 15.6 lakh). Creating and maintaining a national database that includes information on every waitlisted patient throughout the country so that organ allocation can be fair, transparent, and efficient will cost a pretty penny, but this must be done.  The 2014 budget for the Organ Procurement and Transplantation Network (OPTN) in the US is $44 million (Rs. 271 crore). Since there are some 120,000 people on the transplant waitlist in the US, the amortized cost per patient is only about $370 (Rs. 23,000), but there will be significant upfront costs in building a national computerized database in India, likely reaching several tens of crores.

Then there are the organ recovery costs before the actual transplant. These includecost of transplant in India, deceased donor transplant in India, liver transplant in India, MOHAN Foundation, Dr Chris Barry, #drbarryindia, corporate social responsibility and transplant, Dr Amalorpavanathan Tamil Nadu, Dr Sunil Shroff, Indian Transplant Network, blifeny maintenance of brain dead patients in the ICU so that they remain stable and the organs will be suitable for transplant, surgical costs of operating theater time and resources, associated professional fees from intensivists, transplant surgeons, and pathologists and transplant coordinators, and costs related to preserving and transporting the recovered organs to the transplant centers. A single deceased donor liver recovery procedure costs $71,000 (Rs. 44 lakh) in the US, and a multiorgan recovery procedure costs up to $131,000 (Rs. 81 lakh).

Now, of course medical care and logistical costs will be less in India. For example. according to a 2011 Milliman Research Report, a kidney transplant surgery costs about $91,000 (Rs. 56 lakh) in the US but only between 2-4 lakh in India. In fact, some Government Hospitals are performing kidney transplants free of charge for those who cannot afford to pay. A liver transplant in the US costs $316,000 (Rs. 1.9 crore) but the going rate in Indian private hospitals is only Rs. 27 lakh. I have been told that a liver transplant could costs as little as Rs. 7-10 lakh in a Government hospital (Dr. Amalorpavanathan, Convernor of the Tamil Nadu Network for Organ Sharing, personal communication), so the average cost would be about Rs. 15 lakh if public and private liver transplant volumes were equal.

So, for the sake of argument, let’s say that deceased donor transplant costs across the board in India will be 10% of those in the US. So far, that’s 1.56 lakh for patient selection, Rs. 23,000 for database listing and maintenance, 8 lakh for a multiorgan recovery procedure, and 15 lakh for a liver transplant, or just over Rs. 38 lakh.

But wait, there’s more. Immediate postoperative costs for a liver transplant in the US arecost of transplant in India, deceased donor transplant in India, liver transplant in India, MOHAN Foundation, Dr Chris Barry, #drbarryindia, corporate social responsibility and transplant, Dr Amalorpavanathan Tamil Nadu, Dr Sunil Shroff, Indian Transplant Network, blifeny $93,000 (Rs. 57 lakh but remember our 10% discount to 5.7 lakh) and annual immunosuppression costs are $23,000 (Rs. 14 lakh in US or 1.4 lakh in India). Note that these immunosuppression costs are indefinite until the transplanted organ fails or the patient dies. With a 10 year survival rate of greater than 60% after liver transplant, that’s 14 lakh over 10 years and most people keep on going after that.

Then there are costs associated with program oversight and regulation. In the US, these responsibilities fall upon the United Network for Organ Sharing (UNOS), the Center for Medicare and Medicaid Services (CMS), and the Scientific Registry of Transplant Recipients (SRTR). UNOS and SRTR are public private partnerships funded by the US private sector and the US Government and CMS is a government entity. UNOS charges each Transplant Center $1,000 to list a patient for transplant. These fees help fund their many responsibilities, including database (OPTN) management, policy formation and amendments, and oversight/enforcement of rules and regulations. Both UNOS and CMS have the power to penalize or shut down poor performing or noncompliant transplant centers.

So the cost of a single liver transplant, including administrative and professional fees, as well as medical and logistical costs, might be anywhere between Rs. 60-100 (1 crore), or US$ 162,000. Not bad! But can India afford this?

India is a very rich country and a very poor country at the same time. There is tremendous potential to tap into the private sector, either through Corporate Social Responsibility (CSR), public private partnerships with the Government, private not-for-profit foundations, and good old fashioned philanthropy in order to fund and sustain a national deceased donor transplant program in India. Also, the Government does have significant resources but strongly competing health care priorities. Clear and convincing arguments can be made regarding the cost effectiveness of transplantation and returning thousands of citizens to function productively in society, and the Government will have to decide just how much they’re willing to spend on transplantation. Given the immaturity of the health insurance industry in India, I strongly believe that we must seek understanding, cooperation, and support from Corporate India.

Cultural Note

When I asked my Indian friend a while back “What does the head bob mean?” (you know, cost of transplant in India, deceased donor transplant in India, liver transplant in India, MOHAN Foundation, Dr Chris Barry, #drbarryindia, corporate social responsibility and transplant, Dr Amalorpavanathan Tamil Nadu, Dr Sunil Shroff, Indian Transplant Network, blifenythat peculiarly Indian gesture of wagging your head back and forth kind of in a figure-of-eight pattern), he replied “It depends”. In general it can be a gesture of supplication (i.e., junior to senior) or simple friendliness (“I’m a good guy and I mean you no harm”). It is also a way to say yes, although an up and down nod works too. A side to side nod means no just like in the West. So what did my friend mean when he said “It depends”?

In a previous post, I pointed out that Indians have a hard time saying no. So even the elegant and cute head bob might not always mean yes. I’m still practicing on my bobbing skills and my interpretation of those bobbing at me!

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Healthy Lifestyles for Healthy Organs

I would like to thank the Madurai Rotary Club for inviting me to speak this evening. I am healthy lifestyles for healthy organs, Dr Chris Barry, Madurai Rotary Club, organ donation, transplantation, MOHAN Foundation, Dr Sunil Shroff, deceased donor transplant in India, bLifeNY, #drbarryindia Christopher Barry and I am a liver and kidney transplant surgeon from Rochester, New York, currently serving a one year sabbatical as Advisory Board Member to the MOHAN (Multi Organ Harvesting Aid Network) Foundation based in Chennai. The Mohan Foundation is India’s largest and most productive organ donation NGO and is working with others to establish a National Deceased Donor Transplant Program in India.

Today, I will talk about chronic diseases common to the Indian population such as diabetes, high blood pressure, heart disease, and fatty liver disease. Recognizing the symptoms and knowing the treatments to these diseases and, more imphealthy lifestyles for healthy organs, Dr Chris Barry, Madurai Rotary Club, organ donation, transplantation, MOHAN Foundation, Dr Sunil Shroff, deceased donor transplant in India, bLifeNY, #drbarryindiaortantly, how to avoid them altogether, are important to leading healthy lives and never needing a transplant due to chronic organ failure.

Diabetes is a condition marked by high blood sugar in the body’s circulation. This can be caused by an autoimmune destruction of the insulin-producing cells in the pancreas (Type I Diabetes Mellitus) or a state of “insulin resistance” (Type II Diabetes Mellitus) in which normal amounts of insulin are produced, but the body’s cells do not respond correctly to the insulin signaling. Type II Diabetes is much more common and is quite prevalent among Indians.

Common symptoms of diabetes include excessive thirst, frequent urination, and fatigue. healthy lifestyles for healthy organs, Dr Chris Barry, Madurai Rotary Club, organ donation, transplantation, MOHAN Foundation, Dr Sunil Shroff, deceased donor transplant in India, bLifeNY, #drbarryindiaOther symptoms include always being hungry, sexual problems, sudden weight loss (common in Type I diabetics, but Type II diabetics are usually overweight), poor wound healing, infections, and blurry vision.

Common symptoms of diabetes include excessive thirst, frequent urination, and fatigue. Other symptoms include always being hungry, sexual problems, sudden weight loss (common in Type I diabetics, but Type II diabetics are usually overweight), poor wound healing, infections, and blurry vision.

Complications related to chronic or poorly controlled diabetes include nerve damage (or healthy lifestyles for healthy organs, Dr Chris Barry, Madurai Rotary Club, organ donation, transplantation, MOHAN Foundation, Dr Sunil Shroff, deceased donor transplant in India, bLifeNY, #drbarryindia“peripheral neuropathy”), infections including gangrene, blindness, and kidney failure. The peripheral neuropathy increases the chances of acquiring unrecognized foot injuries (even simple cuts or scrapes) that can progress to sever infections including gangrene. Diabetes is a major cause of amputation, so diabetics need to be particularly careful about caring for their feet. Also, diabetes causes poor circulation, increasing the risks of infections and heart disease. Diabetic coronary artery disease is particularly difficult to treat because multiple blood vessels are often affected. Diabetes is also the leading cause of blindness (“diabetic retinopathy”) and frequent eye exams are necessary to gauge progression of this complication. Finally, kidney failure is common after several decades of poorly controlled diabetes and “diabetic nephropathy” (along with chronic hypertension) are the leading indications for kidney transplant worldwide.

Depending on the severity, diabetes can be treated with dietary modifications alone healthy lifestyles for healthy organs, Dr Chris Barry, Madurai Rotary Club, organ donation, transplantation, MOHAN Foundation, Dr Sunil Shroff, deceased donor transplant in India, bLifeNY, #drbarryindia(avoiding excess sugars and other carbohydrates), oral medicines, or insulin shots. Diabetics need to continually monitor their own blood glucose levels to achieve good blood sugar control and avoid complications. For people progressing to kidney failure from diabetes, dialysis and transplant become necessary and these patients are at higher risk because of their predisposition to infections and their higher incidence of heart disease. Combined kidney and pancreas transplantation is an option for Type I diabetics with kidney failure, but this operation is relatively rare even in Western countries because the risks of surgery and life long immunosuppression drugs often outweighs the risks of remaining on insulin and dialysis. Newer treatments include insulin “pumps” and “islet cell” (purified insulin-producing cells) transplant, but these have yet to be perfected for routine clinical use.

High blood pressure, or “hypertension”, is also quite common among Indians.  Contributing factors, other than genetic predisposition, include a stressful lifestyle, too much salt intake, and inadequate exercise and relaxation (such as meditation). Uncontrolled hypertension leads to stroke, heart attack, and kidney failure. Hypertension can be treated by decreasing the amount of salt in one’s diet and many different oral medications. It is important to choose the right medication(s) for a given individual, because severity of disease and side effects to the medicines differ from one person to the next.

Indians are at particularly high risk for developing heart disease. Studies have shown that the blood vessels supplying the heart (“coronary arteries”) in Indians are actually smaller than other populations and when heart disease does strike, it is more wiHigh blood pressure, or “hypertension”, is also quite common among Indians. Contributing factors, other than genetic predisposition, include a stressful lifestyle, too much salt intake, and inadequate exercise and relaxation (such as meditation). Uncontrolled hypertension leads to stroke, heart attack, and kidney failure. Hypertension can be treated by decreasing the amount of salt in one’s diet and many different oral medications. It is important to choose the right medication(s) for a given individual, because severity of disease and side effects to the medicines differ from one person to the next.despread and severe in Indians. Stressful lifestyles, poor diets (high fat, high cholesterol), physical inactivity, and smoking all increase one’s risk for heart disease. Chronic heart failure or sudden death from a heart attack are leading causes of mortality worldwide. In certain cases, heart transplant is required, but this is a relatively rare operation due to the scarcity of organs available. Implantable heart pumps (“ventricular assist devices”) are becoming more common in the West, but this technology is extremely expensive.High blood pressure, or “hypertension”, is also quite common among Indians. Contributing factors, other than genetic predisposition, include a stressful lifestyle, too much salt intake, and inadequate exercise and relaxation (such as meditation). Uncontrolled hypertension leads to stroke, heart attack, and kidney failure. Hypertension can be treated by decreasing the amount of salt in one’s diet and many different oral medications. It is important to choose the right medication(s) for a given individual, because severity of disease and side effects to the medicines differ from one person to the next.

Unfortunately, obesity is an increasing problem in India. Although morbid obesity is much less common than in Western countries, Indians often have truncal obesity (or “pot-bellies”) and this in and of itself can cause health problems. A diet with too much fat, grease, cholesterol and not enough fruits, vegetables, and whole grains makes it difficult to maintain a healthy weight. But the main culprits for obesity are eating too much and exercising too little. Obesity is strongly associated with diabetes (Type II, or insulin resistance), heart disease, fatty liver disease, and joint problems. Obese people have a shorter lifespan compared to the general population.

Fatty liver disease is now recognized as the major cause of liver dysfunction worldwide, healthy lifestyles for healthy organs, Dr Chris Barry, Madurai Rotary Club, organ donation, transplantation, MOHAN Foundation, Dr Sunil Shroff, deceased donor transplant in India, bLifeNY, #drbarryindiaparticularly in Western countries. Indians have an unfortunate genetic predisposition to fatty liver disease and it is often present even in the absence of obesity (as is more common in the West). Poor diet, overeating, inadequate physical activity, and diabetes are all risk factor. It is actually a spectrum of liver injury starting with simple accumulation of fat droplets in the liver cells. At this stage, liver function is not disturbed and the fat accumulation is actually reversible. In a small minority of people (1-2%) however, unabated fat accumulation can lead to inflammation and scarring of the liver, or NASH (“Non Alcoholic Steato Hepatitis”). NASH is associated with minor to moderate liver dysfunction and can progress to end stage scarring of the liver, or cirrhosis s. Cirrhosis often leads to liver failure and also greatly increases the risk of liver cancer. NASH cirrhosis is becoming the leading indication for liver transplant worldwide.

As I have pointed out in my TEDx talk, all of you almost certainly know someone who has had a transplant or might benefit fromhealthy lifestyles for healthy organs, Dr Chris Barry, Madurai Rotary Club, organ donation, transplantation, MOHAN Foundation, Dr Sunil Shroff, deceased donor transplant in India, bLifeNY, #drbarryindia one. Chronic diseases of the kidneys, liver, heart and lungs are common and transplant is in many cases the best way to cure them. Transplantation is extremely successful these days with the majority of recipients returning to happy, fully functional lives just as they were before they ever got sick. It’s a life transforming endeavor and is one of the most phenomenal successes of modern medicine. In order to receive a transplant, you need an organ donor. Most donor organs come from deceased individuals, but it’s also possible to donate one kidney, part of your liver, or even part of your lung while you’re still alive to someone in need. I’m going to focus on deceased organ donation, but much of what I’m telling you also applies to living donation.

healthy lifestyles for healthy organs, Dr Chris Barry, Madurai Rotary Club, organ donation, transplantation, MOHAN Foundation, Dr Sunil Shroff, deceased donor transplant in India, bLifeNY, #drbarryindiaA single person can potentially save up to 8 people’s lives through organ donation: 1 heart, 2 lungs, 2 kidneys, 1 liver, a pancreas, and intestines. You could even s ave 9 lives, if you split the liver under ideal circumstances.

Through tissue donation such as corneas, bone, tendons, heart valves, blood vessels and skin, up to 50 people’s lives can be dramatically improved by just one donor. If you’re not an organ donor when you die, then you’re taking a lot of people with you.

The act of organ donation can bring profound meaning to the donor’s life because this act touches immediately the lives of the recipients and impacts the lives of the loved ones and family surrounding the recipients and the donor. Donor families often experience a profound sense of comfort and closure knowing that the tragedy of death and deep loss resulted in a renewal of life in many others. And this cycle of giving this incredible gift of life can continue by influencing others to consider donation either while we’re still alive or when we pass.

Throughout the world, there is a huge gap between the number of people needing transplants and the number of organs available to perform transplants. In the US, as many as 30 people die every day while waiting for an organ to become available. In India it’s estimated that 500,000 people could benefit from life saving transplants, but only 5,500 are performed each year. 5,000 of these are living donor transplants (mostly kidneys and some livers) where a family member or loved one donates one kidney or a part of liver to the person in need. Only 500 deceased donor transplants (using organs donated from brain dead accident victims or stroke victims) in India last year.

This discrepancy between donor organs and demand for transplants can lead to bad behavior. Kidney rackets unfortunately continue to this day in India despite their illegality. The possibility exists that increasing the number of deceased donor transplants through organ donation, black market transplant activity would cease because the demand could be met. If the organ donation rate increased in India by 10 fold, there would be enough organs for everyone to have a transplant.

This discrepancy between donor organs and demand for transplants can lead to bad healthy lifestyles for healthy organs, Dr Chris Barry, Madurai Rotary Club, organ donation, transplantation, MOHAN Foundation, Dr Sunil Shroff, deceased donor transplant in India, bLifeNY, #drbarryindiabehavior. Kidney rackets unfortunately continue to this day in India despite their illegality. The possibility exists that increasing the number of deceased donor transplants through organ donation, black market transplant activity would cease because the demand could be met. If the organ donation rate increased in India by 10 fold, there would be enough organs for everyone to have a transplant.

The most common place where organ donation consent is considered is in the hospital at the time of a tragic death. This is not the best environment to thoughtfully consider such a profound decision. I think it’s very important to identify other, more suitable, environments for thoughtful consideration.

Take estate planning for example. Don’t you think that when a client sits down with his or her attorney to discuss such things as living wills, health care proxies, and advanced directives that a thoughtful discussion on organ donation should naturally be included? This isn’t routine practice and I think it should be.

Other suitable environments include primary care physician well visits and when corporations or institutions talk to their employees about health care and retirement benefits. These opportunities will allow people to think about donation, learn more about it, and move towards a decision beforehand. Importantly, this provides an opportunity for people to discuss with their family members and loved ones what they think about organ donation, so that everyone’s intentions perfectly are clear.

So let me challenge 6 common myths with 6 facts on organ donation and suggest what you might consider doing to take action.

Myths regarding organ donation are driven by fear and misinformation. “If I’m an organ donor then the doctors wont take care of me!” This is absolutely false. You must realize that all of those paramedics and nurses and ER docs and ICU docs are devoted to saving lives even in the most extreme circumstances. It’s not just a job for them, it’s a passion, a true calling.

Here is the fact: All people, regardless of their stated intention to be organ donors, receive the same level and quality of care. It’s only after the patient is declared dead that donation takes place. And this process is carried out by a separate team of health care professionals that is completely distinct from the paramedics and health care providers in the ER and ICU.

You’re not necessarily too old or too ill to be an organ donor. People in their 70s and 80s have donated live saving organs. If you have a health problem or had one in the past, you can still register. The decision of whether the organs are suitable for transplant is made by the transplant doctors at the time of donation.

Some aren’t sure that their religions are supportive of organ donation. In fact, all major organized religions support an individual’s decision to be an organ donor. I personally consider donation to be a profoundly spiritual act that honor s the sanctity of life.

Some worry that the process of deciding who receives organs for transplant is somehow unfair. The transplant allocation process—who rises to the top of the waiting list—is inherently fair. Celebrity or political or financial power do not influence this process.

Another fact is that there are no costs incurred to the family or estate of an organ donor. Organ donation is a true gift of life.

And finally, I can tell you from my personal experience as a transplant surgeon that organ donors are treated with the utmost care,,, respect,,,,and dignity. The operation I perform to remove the organs for donation is compassionate and is not disfiguring. The organ donor and the donor’s family is always honored at the time of retrieval.

So learn more about organ donation, talk with your family and loved ones about it, and even consider pledging your organs if you wish to do so.

More importantly, take care of yourself so that you may live a happy and healthy life.

Thank you!

healthy lifestyles for healthy organs, Dr Chris Barry, Madurai Rotary Club, organ donation, transplantation, MOHAN Foundation, Dr Sunil Shroff, deceased donor transplant in India, bLifeNY, #drbarryindia

 

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End of Life Care in India: An Impediment to Organ Donation?

End of life care is a new concept in India. Unlike Western countries end of life care, persistent vegetative state, brain death, coma, organ donation, Aruna Shanbaug, Pinki Virani, Terry Schiavo, Transplantation of Human Organs Act, deceased donor transplant, #drbarryindia, MOHAN Foundation, bLifeNY, Dr Chris Barry, Indiawhere physicians routinely counsel families regarding end of life care, do not resuscitate (“DNR”) orders, and compassionate withdraw of care, these concepts remain controversial and confusing for doctors and patients alike in India. With regards to organ donation, reluctance to declare brain death remains a significant impediment to obtaining family consent for donation.

The differences between reversible coma, persistent vegetative state, and brain death must be clearly understood. Sometimes, a patient meeting with an accident or medical catastrophe (e.g., severe sepsis or stroke) may lapse into a coma. If the brain injury is not too severe, coma can be reversible with time and intensive care support. Support usually requires mechanical ventilation, medicines to maintain blood pressure, nutrition, and antibiotics to treat or prevent infection. Other times, the coma becomes irreversible, known as persistent vegetative state. This is different from brain death, when all blood flow to the brain has ceased. When brain death occurs, the patient has died even though breathing and heart beating can be continued with artificial means via mechanical ventilation and blood pressure support medicines. Brain death can be definitively diagnosed by the doctors with simple bedside tests, thus distinguishing from coma and persistent vegetative state.

The case of Aruna Shanbaug brought to light the controversies surrounding persistent

end of life care, persistent vegetative state, brain death, coma, organ donation, Aruna Shanbaug, Pinki Virani, Terry Schiavo, Transplantation of Human Organs Act, deceased donor transplant, #drbarryindia, MOHAN Foundation, bLifeNY, Dr Chris Barry, India

Aruna Shanbaug

vegetative state, resulting in a Supreme Court ruling regarding end of life care in India. In 1973, Aruna Shanbaug, a nurse at a Mumbai hospital, was brutally sexually assaulted, resulting in a brain injury that caused a persistent vegetative state lasting to this day. Thirty-six years later, in 2009, Aruna’s friend and confidant, author Pinki Virani appealed to the Supreme Court to cease Aruna’s nutritional support, arguing that her ongoing care was futile and that Aruna and others around her were suffering unnecessarily as a result. She stated that withdrawing Aruna’s imposed feeding, the only medical intervention needed to keep her alive, would allow her to die with dignity and finally find peace.

Virani’s plea was initially rejected by the Court in a 2011 ruling and many hospital staff that have been caring for her over the past 3.5 decades expressed strong opposition to the proposed euthanasia. Despite an appeal in which the Court ruled that “involuntary passive euthanasia was allowed in principle but must follow a strict procedure involving clearance by a High Court”, Aruna remains in her persistent vegetative state, being lovingly and passionately cared for by the hospital staff.

This is a true ethical conundrum, with understandable arguments on both sides, much like the Terry Schiavo case in the US. Terry was a young woman in a persistent vegetative state from 1990 to 2005. Her husband pleaded to the US Supreme Court to remove her feeding tube, generating a similar firestorm of controversy as Aruna Shanbaug’s case here in India. Ultimately, the US Supreme Court allowed the removal of Terry Schiavo’s feeding tube and she passed away peacefully shortly thereafter. But there were many lawsuits and counterlawsuits, as well as political and social debates abounding. The case did result in clear guidelines regarding compassionate withdraw of care in the face of futility. Similar guidelines and suggested amendments to the Indian law have been proposed by the Indian Society of Critical Care Medicine in 2012.

When brain death is declared in India, the only viable option is organ donation, as withdrawal of care is, to most doctors, not an option. This makes simply declaring brain death in India an unpalatable option to many doctors, especially when the option of deceased donor transplant does not exist in a given hospital or geographic region. Even though the patient is legally and medically dead, according to the Transplantation of Human Organs Act (THOA) passed back in 1994, withdraw of critical care support is considered to be tantamount to committing euthanasia by many well educated health care professionals. This, in turn, makes it difficult to grow a deceased donor transplant program in India.

Two things, in my mind, absolutely must be done in order to provide clarity regarding end of life care and to increase deceased donor transplant activity. First, the laws regarding compassionate end of life care, specifically withdraw of care in the case of medical futility or the declaration of brain death, need to be strengthened and uniformly followed. These laws need not be so rigid as to preclude the physician’s own final judgment—particularly when in consultation with a patient’s family members—but doctors should not fear retribution if withdraw of care is the best decision in a given situation. Second, doctors need to be educated about these new and constantly evolving concepts. Just because they weren’t taught in medical school doesn’t mean that our learning and our openness to new ideas should stop. Such education can readily be achieved on a large scale through medical professional society pronouncements and specialized educational programs (Continuing Medical Education) presented by interested transplant non-governmental organizations (in the case of declaration of brain death and maintenance of brain dead patients prior to organ recovery for transplant) or the physicians themselves.

With a robust deceased donor transplant program in India, hundreds of thousands of lives can be saved and improved. With clarity of other aspects of end of life care, much emotional suffering among family and loved ones (and even health care workers) can be avoided. India can move forward and implement solutions that are morally and ethically compatible with Indian mores. This can and must be done.

Cultural Note

During the monsoon season in India, or anywhere else there may be monsoons for that end of life care, persistent vegetative state, brain death, coma, organ donation, Aruna Shanbaug, Pinki Virani, Terry Schiavo, Transplantation of Human Organs Act, deceased donor transplant, #drbarryindia, MOHAN Foundation, bLifeNY, Dr Chris Barry, Indiamatter, I found that it is important to always carry with me a small plastic bag for my electronics and other non-waterproof valuables.  I learned this on my second day in Chennai when I got caught in a downpour. I didn’t mind getting soaking wet. In fact, it was quite enjoyable and refreshing at the time, so I didn’t bother to hail an auto or run for cover like everyone else was doing. (The locals must have been quite amused seeing the sopping wet white man slopping merrily through the streets.)

What I did not think about at the time was my phone (fortunately a cheap Nokia I had before I got my iPhone unlocked). The next day, the phone display had condensation underneath the screen and, although somewhat difficult to see the numbers, the good old Nokia worked just fine. When I took my phone to recharge my prepaid wireless, a remarkable event took place.

The young man at the Airtel stand took my order for a 200 Rupee recharge, then he started taking my phone completely apart. He dried off the inside display screen as well as the battery without any request on my part. What an incredible, simple act of genuine kindness! I felt guilty in retrospect for not giving him 10 or 20 Rupees on the spot for his gesture. Then again, he most likely would have refused my “tip” and just smiled.

I experience these simple acts of kindness all of the time in India. Sure, I’m a walking ATM target being an American, but so many people here are genuinely nice and thoughtful. There are many strange and frustrating situations for me here in India, but the pure humanity and friendliness expressed to me on a daily basis by regular Indian people make all those frustrations disappear.

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Paired Donor Exchange Transplantation in India: Already Successful

Paired Donor Exchange Kidney Transplantation (also known as a “kidney swap”) is when a paired donor exchange, #drbarryindia, Al Roth, MOHAN Foundation, non directed donor transplant, orgn donation, kidney transplant, bLifeNY, Dr Chris Barry, India, National Kidney Registry, compatiblepotential transplant recipient exchanges his or her living donor (who is incompatible) with another donor who is compatible. This concept is perhaps the greatest advance in transplantation over the past decade and is being practiced successfully, albeit in very small numbers, here in India.

The simplest example is when two sets of donors and recipients are incompatible by blood group. Say Murugan wants to donate his kidney to his wife Ishita, but Murugan’s blood type is A and Ishita’s blood type is B. If this transplant proceeded, Ishita’s new kidney would immediately reject because of the blood group incompatibility. It is possible to try to overcome this incompatibility with powerful (and expensive) drugs and other special treatments, but the results of this type of “ABO Incompatible” transplant are not very good. Now, say a second couple, Ganesh and Pallavi, face the same situation but donor Ganesh is blood type B and Pallavi is blood type A. If everyone agrees, Murugan (A) can donate to Pallavi (A) and Ganesh (B) can donate to Ishita (B). The chances for success, even after three years, are greater than 90%.

Along similar lines, “chains” of non directed donations can take place in which an altruisticpaired donor exchange, #drbarryindia, Al Roth, MOHAN Foundation, non directed donor transplant, orgn donation, kidney transplant, bLifeNY, Dr Chris Barry, India, National Kidney Registry, compatible donor starts the process by donating to a recipient with an incompatible donor, and then that recipient’s donor is free to donate to another recipient with an incompatible donor, and so on. The longest non directed donor chain in the US (so far) involved 60 people. Both “swaps” and “chains” have resulted in thousands of life saving and life prolonging kidney transplants throughout the world.

For a slightly more comprehensive explanation of these ideas, see my previous blog post.

In fact, the Nobel Prize was just recently awarded to Alvin Roth in 2012, the Stanford economist who described the theory (and the complex computer algorithms necessary) for large scale application of this concept. In addition to overcoming blood group incompatibility, potential recipients who are highly sensitized (i.e., they have many antibodies circulating in their blood against most potential donors) can be successfully transplanted with this approach. Imagine trying to find a one in a million match, then organize simultaneous donor recovery and transplant surgeries as well as donor organ transport (often across great distances), and having it all work out in the end!

India is working toward creating a National Transplant Database that contains information on every registered donor, every potential transplant recipient, and the details of every donor recovery surgery and transplant performed (including data on short term and long term outcomes of the transplants). This database would be of use for both living donor transplant and deceased donor transplant and it will be critical to the success of a national paired donor exchange and non directed donation program for living donor kidney transplantation. As I’ve mentioned previously, such a system will require transparency, efficiency, and accountability so that it works well, is sustainable, and is trusted by the public. It will also require state of the art programming, good data input, and regular auditing of results.

This is no small task, but I am confident that India can do it. The benefit to society in getting thousands of citizens off of dialysis and back to leading productive and healthy lives is incalculable. One estimate by the National Kidney Registry in the US asserts that $100 billion in US healthcare costs could be saved just with a robust paired donor exchange and non directed donation program. India could also enjoy such a masspaired donor exchange, #drbarryindia, Al Roth, MOHAN Foundation, non directed donor transplant, orgn donation, kidney transplant, bLifeNY, Dr Chris Barry, India, National Kidney Registry, compatibleive impact if political wills, medical and technological expertise, and appropriate funding streams align.

Cultural Note

It wasn’t too long ago in America that the only people with their pictures on their business paired donor exchange, #drbarryindia, Al Roth, MOHAN Foundation, non directed donor transplant, orgn donation, kidney transplant, bLifeNY, Dr Chris Barry, India, National Kidney Registry, compatiblecards were real estate agents. There is a growing trend in the US for professionals to place their portraits on their business cards, for example, in the medical community.

In certain sectors of Corporate India, your picture on your card is considered silly and tacky (only politicians give out their own pictures). Your business card should be a prized possession with your abbreviated curriculum vitae on embossed, heavy paper. You must carry your cards around in a special container and deliver them (with both hands) to a highly selective audience.

I’ve been told that my business card picture is okay for NGOs (non governmental organizations) even in India, so I can keep giving those out for now.

But I’m going to get new cards printed so that I can talk with the top echelons of Corporate India about Corporate Social Responsibility (CSR) and organ donation.

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Cultural Barriers to Deceased Donor Transplant in India

As I get to know the Indian way of life more intimately, I notice three potential cultural cultural barriers, India, #drbarryindia, MOHAN Foundation, Tamil Nadu, deceased donor transplant, organ donation, bLifeNY, Dr Chris Barrybarriers to implementing a National Indian Deceased Donor Transplant System. Such a system needs to embrace the values of efficiency, transparency, and accountability. The three peculiarities of Indian culture that I’ve identified may hinder the achievement of such values. Please note that I in no way intend to be judgmental about these deeply ingrained cultural behaviors. They are simply different, not necessarily good or bad.

First of all, the many Indian religious belief systems are NOT cultural barriers to the cultural barriers, #drbarryindia, India, organ donation, Dr Chris Barry, bLifeNY, deceased donor transplantationIndian public’s acceptance of organ donation and deceased donor transplantation. All major religions support an individual’s intention to be an organ donor. India has a strong tradition of eye and blood donation (the latter more recently due to effective education and public relations). Also, in Tamil Nadu the organ donation consent conversion rates (actual # consented/all potential donors) are as high as 65%. The Indian people get it when good education is provided, especially when spoken by religious leaders and other figures of public trust.

Here are the three potential cultural barriers:

1. Indians are systems- and processes-averse.

I’ve been told that Ayurvedic medicine  has floundered because of the absence of strict documentation such as with allopathic medicine. Indeed, the father practitioner teaching his son will not tell him everything that he knows. It’s good to be forced to find your own way, it’s good to be lost, but it is not an efficient way to pass on knowledge of what really works and what doesn’t.

Despite this, things get done (like tiffin system in Mumbai). I believe India is perfectly capable of building an efficient nation-wide transplant network. Success is likely given the spectacular achievements of the Indian Railroad System. Also, there are many smart and capable engineers and computer scientists throughout India, so this is really achievable.

2. The notion of bribery permeates every aspect of Indian society.

If the average Indian citizen expects an incentive to provide any premium service, how do cultural barriers, India, #drbarryindia, MOHAN Foundation, Tamil Nadu, deceased donor transplant, organ donation, bLifeNY, Dr Chris Barryordinary tasks get done, I wonder? Narendra Modi has taken on the Aam Aadmi  anti-corruption theme because he knows a country cannot prosper economically if middlemen are always taking cuts. This is especially true for infrastructure projects like roads and buildings. If 60% of the budget of, say, a road project goes up in bribes, there’s only 40% left to build the road. And it ends up being a crappy road.

There is some reasonable hope that every day corruption will decrease with the digitization of processes (e.g, purchasing online).  Direct business-to-consumer transactions need no middlemen. So, hopefully the amount of blatant corruption will lessen over time. A National Transplant Network must be completely transparent and accountable, otherwise the public will not trust the system.

3. Indians are sometimes too polite.

Indians are taught from a very early age that it is impolite to say no. Politeness, however, can result in ambiguous behavior. In the West, this can be perceived as being duplicitous or flakey. In an efficient, transparent, and accountable National Transplant Network, you have to say what you mean and mean what you say.

Participants can’t be afraid to say no (for example, to requests for exceptions to priority on the transplant waitlist, or if a transplant center needs to be shut down, etc.).

I think that all three of these cultural idiosyncrasies are surmountable with appropriate education and commitment to the values of efficiency, transparency, and accountability.

I understand the “it can’t be done” is an all too often refrain in India. I have great faith in the Indian people that a National Transplant Network can be built and, more importantly, sustained. It is absolutely possible. It will require a herculean effort and appropriate funding from the Centre and State Governments, Transplant Hospitals, and Corporate India, but this can and must be done.

Cultural Notecultural barriers, India, #drbarryindia, MOHAN Foundation, Tamil Nadu, deceased donor transplant, organ donation, bLifeNY, Dr Chris Barry

Although this entire post has been one big cultural note, I’ll throw in one more: Indian hospitality. If you’re invited to a meal at your Indian friend’s home, come hungry. The host takes great pride in being able to offer you more than enough food of many varieties. But don’t eat every last bite; you wouldn’t want them to feel that they did not have enough food to give you. Indians like to treat their guests like kings, or if you’re lucky, gods. So, be sure to return the favor of respect by eating only with your right hand!

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The Transplant Community’s Obligation to Preventive Health

I just returned from the 7th National Annual Transplant Coordinator’s Workshop in preventive health, MK Mani, #drbarryindia, MOHAN Foundation, Hyderabad, Tamil Nadu, deceased donor transplant, organ donation, Ranbir Talwar, bLifeNY, Dr Chris Barry, NATCO, transplant coordinatorHyderabad, India in which Commodore Ranbir Talwar delivered the 3rd Swamy Narayan Memorial Lecture on a critical preventive health issue in India: the “Linkage Between Head Injury & Road Safety”.  He eloquently pointed out that “India has the highest number of officially recorded road accident deaths in the world…” and that 15 people (mostly young men) die hourly in road accidents. (I can tell you from my own personal experience that India is extremely dangerous for pedestrians; you’re safer in a vehicle). This ongoing massive tragedy is causing incalculable emotional and economic suffering for surviving families.

Dr. M.K. Mani, Chief Nephrologist at Apollo Hospital in Chennai, pointed out in 2001 that at least 36% of the Indian population can not afford a kidney transplant, which is the most cost effective treatment for end stage renal disease (a rampant problem given the high incidences of diabetes and hypertension in this country).

In fact, many in India cannot afford to stay on long term dialysis, so decisions are made all too often to forgo treatment and die of kidney failure rather than being a financial burden on the rest of the family.

The incidences of fatty liver disease and alcoholic cirrhosis are high in India (estimated at 9-32% and at least 16%, respectively) , the former as a result of an unfortunate genetic predisposition to fatty liver and diabetes, the sumptuous ghee-infused and carbohydrate rich Indian cuisine, and general lack of physical activity among urban dwellers. These diseases lead to untold morbidity and mortality because, at this point, liver transplant is in large part only available to the well to do in India. The exact impact on society is unknown because proper statistical data are lacking.

So why, as a transplant surgeon and organ donation advocate, should I care about preventive health measures to curb the onset of these diseases and reduce the number of road traffic accidents? Is it not against my best economic interests?

Well, first of all, I am a doctor and I am dedicated to eradicating all human suffering,

preventive health, MK Mani, #drbarryindia, MOHAN Foundation, Hyderabad, Tamil Nadu, deceased donor transplant, organ donation, Ranbir Talwar, bLifeNY, Dr Chris Barry, NATCO, transplant coordinator

Dr. Barry addresses Transplant Coordinators in Hyderabad

especially preventable suffering. As a transplant professional, I know that the demand for donor organs far exceeds the supply and that this problem will continue into the foreseeable future. Also, access to state of the art healthcare is not evenly distributed throughout society, so many untreated people will simply die. And I believe that simple lifestyle changes such as wearing a helmet or getting more exercise are vitally important in preventing so many unnecessary deaths. So, I am ethically obligated to promote preventive health, particularly when it comes to diseases that result in the need for liver or kidney transplantation.

Setting up simple services such as blood pressure readings and fingerstick glucometry, as well as accompanying educational interventions, is not that difficult or expensive. Neither would be participation in road traffic safety education and legislation. It does take our time, which in most cases is extremely valuable. But much of the actual work can be delegated. What is most important is a vocal commitment to preventive health among the transplant community. This doesn’t just go for India, but the entire world.

One important benefit to the transplant community (especially in India) for actively engaging in preventive health measures would be the gaining of trust among the public. We’re not just out to get rich doing transplants, we really care about the health of all human beings and we can provide valuable health services beyond our transplant duties. As I’ve pointed out previously , Indian society is suspicious of transplant. Here especially, our interest in preventing people from ever progressing to end stage organ failure is a profound gesture of good will.

Public relations aside, it’s just the right thing to do, isn’t it?

In India, much of the transplant community’s activity in preventive health will necessarily rest with the Government Hospitals, given the readily available funding streams for such work. But corporate hospitals performing transplants, transplant NGOs, and Corporate India in general all have responsibilities to promote preventive health as well. I did just say that these activities should not be prohibitively expensive but they will cost money and this is where Corporate Social Responsibility  (not only corporate hospitals but all of Corporate India) plays a critical role.

I am confident that the transplant community can rise to this occasion. For many reasons, most importantly for the betterment of our society’s health, we can and must engage in preventive health activity.

Cultural Note

In Tamil Nadu, as well as the rest of India, “please” and “thank you” aren’t often explicitly preventive health, MK Mani, #drbarryindia, MOHAN Foundation, Hyderabad, Tamil Nadu, deceased donor transplant, organ donation, Ranbir Talwar, bLifeNY, Dr Chris Barry, NATCO, transplant coordinatorsaid. Rather, the way in which sentences are phrased, as well as the way in which they’re said (tone of voice, body language), convey courtesy and kindness. More importantly, the topics of conversation imply politeness. This is especially true for food and family. “Have you eaten yet?” or “How are your children?” are essential phrases for me to master in my studies of spoken Tamil and Hindi. I’ve been told that not asking such things could be considered as rude! This makes sense to me. I should always care about the person with whom I’m talking.

 

preventive health, MK Mani, #drbarryindia, MOHAN Foundation, Hyderabad, Tamil Nadu, deceased donor transplant, organ donation, Ranbir Talwar, bLifeNY, Dr Chris Barry, NATCO, transplant coordinator

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Tamil Nadu Leads India in Transplant and Organ Donation Infrastructure

There are many beautiful and amazing things about India, but, alas, infrastructure is not infrastructure, #drbarryindia, MOHAN Foundation, Jayalalithaa, Tamil Nadu, deceased donor transplant, organ donation, Harsh Vardhan, bLifeNYone of India’s strong suits. In order to have a successful deceased donor transplant program throughout India, a strong and well-built infrastructure is of critical importance. Tamil Nadu is leading the way in this regard and can serve as an example for other states that are developing deceased donor transplant programs.

After news of yet another illegal kidney racket surfaced in 2007, the Tamil Nadu government moved to promote deceased donor transplant activity (thus curbing the need for an illicit organ trade) by issuing a number of government orders to supplement and strengthen the Transplantation of Human Organs Act (THOA, originally passed in 1994). A central registry (Tamil Nadu Organ Transplant Registry) was established in 2008 that has facilitated the transplantation of 2,682 organs from deceased donors since its inception.

Although much still needs to be done to increase the number of deceased donor transplants throughout Tamil Nadu, this state leads the country in its transplant and organ donation infrastructure. This success has allowed a deceased donor transplant network to coalesce throughout Southern India, including Tamil Nadu, Kerala, Karnataka, Andhra Pradesh, Telangana, and Puducherry. Lakshadweep plans to create a deceased donor program soon.

Last week, the Tamil Nadu Government announced the establishment of a Cadaver

infrastructure, #drbarryindia, MOHAN Foundation, Jayalalithaa, Tamil Nadu, deceased donor transplant, organ donation, Harsh Vardhan, bLifeNY

Jayalalithaa supports organ donation.

Transplantation Authority “which would have functional and fiscal authority to serve as the State’s nodal agency for all organ transplantations.” Chief Minister J Jayalalithaa will be the Chairperson and the Authority will assist in the functioning of the Regional Center for Organ Transplantation. The regional centre (ROTTO – Regional Organ and Tissue Transplantation Organisation) that is being planned in Chennai would cover Andhra Pradesh, Kerala, Karnataka, Andaman and Nicobar and Lakshadweep islands.

The critical reason for Tamil Nadu’s success in deceased donor transplant activity is the support from the Tamil Nadu State Government. Other forces will need to join in, including public and private hospital administrations and staff, transplant NGOs, Indian business and industry, and the general public, in order to move toward a functional national transplant system.

It is exciting to see that Health Minister Harsh Vardhan supports the establishment of a national transplant registry, but it is a little disappointing that the funds allocated for this by the Centre have yet to be used.

A national transplant registry would be no small task. Ideally, every person awaiting a transplant in India would be known, along with pertinent details such as blood type, Human Leukocyte Antigen (tissue matching) results, age, time and position on the waiting list, just to name a few. In addition, details of every organ recovery surgery and allocation of organs would be collected in real time. Finally, transplant centers would be required to report their outcomes, both short-term and long-term.

Building such an infrastructure will require tremendous commitments from the government, transplant centers and NGOs, as well as the private sector. I mention the private sector because, at this point, almost all of the transplant NGO activity is funded by philanthropy. Although transplant surgeries are profitable and the government is committed to providing health care to all Indians, there is currently not enough money to realistically fund a robust transplant infrastructure in India. The transplant coordinators need to be compensated. The database curators need to be compensated. The doctors and staff participating in organ recovery surgeries need to be compensated. Operating costs will have to be, at least in some part, covered by corporate social responsibility (“CSR”) or good old-fashioned philanthropy.

Also, there has to be accountability built into the infrastructure. Transplant centers that are given the privilege to perform transplants should be required to follow all the rules and submit all necessary data. Failure to do so, or consistently poor outcomes compared to national data, would result in suspension of these transplant privileges. Similarly, the flow of funds, both public and private, needs to be completely transparent. The public needs to trust the system in order to support it and participate in it. There can be no room for corruption or gross inefficiencies. We’re talking about saving many thousands of lives here, so the infrastructure participants must remain honorable and clean.

And, finally, there need to be incentives to encourage all capable hospitals and staff, regardless of whether they are certified transplant centers, to participate in brain death declaration and organ recovery activity. For all government hospitals and some private hospitals, this might come in the form of compensation from government health insurance schemes.

It is indeed an exciting time for deceased donor transplantation and organ donation in India. With Tamil Nadu leading the way, the prospects for developing a world-class transplant infrastructure are very promising.

 

Cultural Note

Be careful when you plan auspicious events in Tamil Nadu. There are blocks of time each infrastructure, #drbarryindia, MOHAN Foundation, Jayalalithaa, Tamil Nadu, deceased donor transplant, organ donation, Harsh Vardhan, bLifeNYday when it is not good to do something important. Monday 7:30-9 am, Tuesday 3-4:30 pm, Wednesday 12-1:30 pm, Thursday 1:30-3 pm, Friday 10:30 am -12 noon, Saturday 9 – 10:30 am, and Sunday 4:30-6. Oh, and in general, Wednesdays and Fridays are good days and Tuesdays and Saturdays are bad days. Makes for an interesting work week, no?

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