Blog | Christopher Taylor Barry, MD, PhD | Transplant and Organ Donation Awareness

Deceased Donor Transplantation in Kerala: An Interview with Dr. Barry

Posted on 09/12/2014 by Chris Barry

Q: The deceased donor organ donation programme in India/Kerala is in a very nascent stage and obviously, a transplant scenario like the one in the US does not seem even remotely possible in the near future. How do you think an organ transplant programme can take off in low-resource settings like ours?

Dr. Barry: I think that India is perfectly capable of building a robust and sustainable National Deceased Donor Transplant Network in which organs from brain dead individuals are allocated fairly and all transplant activity, including long term outcomes, is recorded in a publicly available database. For a national network to succeed, sincere commitments from the Government (both the Centre and States), hospitals, and the private sector are essential. Likely, such a network will first grow organically as successful states like Tamil Nadu and Kerala demonstrate to the rest of the country the best practices necessary for a deceased donor transplant program. The significant resources required can come from the Government, transplant patient self pay and insurance, corporate social responsibility (CSR) funds, and public-private partnerships with transplant NGOs.

For nascent programs to get off the ground, the two most important factors are State Government support and individual transplant champions such as Dr. Noble Gracious, the Nodal Director of the Kerala Network for Organ Sharing. Such leaders work tirelessly and selflessly to inspire, teach, and guide all of the transplant stakeholders to keep the momentum going and the programs growing.

Q: What is your impression of the deceased donor organ donation programme that has been kicked off in Kerala? From your interactions with our transplant surgeons and administrators, are we moving in the right direction?

Dr. Barry: The deceased donor transplant program in Kerala has been remarkably successful with rapid growth and good success in its first two years. In 2012, 22 deceased donor transplants were performed, followed by 88 in 2013, and 102 so far in 2014. Currently, nearly 10% of all deceased donor transplants in India are performed in Kerala and this is likely to grow given the demonstrated commitment of transplant surgeons, hospital administrators, and government officials. An effort is well under way to establish a deceased donor liver transplant program at the Government Medical College Hospital in Trivandrum. Such a program will allow all members of Indian society to benefit from this life saving and highly successful procedure.

Q: Which are the areas where we should be giving more attention to?

Dr. Barry: Perhaps even greater than organ donation public awareness efforts, the main challenges to the program’s success are the attitudes of neurosurgeons and neurologists regarding the declaration of brain death. Understandably, these doctors (and, often, their hospital’s administrators) do not want to be perceived as compromising their care for the sake of organ donation, but this myth must be busted. Of course these doctors work passionately, skillfully, and valiantly to save each and every life. But not everyone can be saved all of the time and, instead of seeing death as a failure, proceeding to organ donation is in fact a miraculous success. Potentially saving eight other people’s lives through organ donation is a remarkable and noble act, isn’t it?

So, much professional education needs to be done, including teaching the ICU doctors how to properly maintain brain dead patients prior to organ recovery, training transplant coordinators how best to counsel grieving families and obtain consent for donation, and teaching surgical teams how best to perform the recovery surgeries and properly preserve the organs prior to transplant. In parallel, public education must continue so that everyone knows the facts about organ donation and that transplantation is very successful.

Q: Logistics and manpower seems to be the key elements that are driving liver transplant programmes — and which we seriously want. Our surgeons also mostly learn transplant procedures while on the job and are not exclusively trained There is an argument that we start the transplant programme and then build on it, rather than wait for the full facilities to arrive. Where do we strike a balance here?

Dr. Barry: While there are certain essential requirements in establishing a viable and sustainable deceased donor transplant program, it is perhaps more realistic to start the program before all of the other highly recommended elements are in place. For example, surgeons, anesthesiologists, critical care doctors, interventional radiologists, pathologists, hepatologists, and transplant coordinators are all absolute requirements to get a deceased donor liver transplant program off the ground. But other positions such as database managers, transplant pharmacists, infectious disease experts, and nutritionists all greatly add value to a quality program. As a program grows and demonstrates continued success, these positions could be added at a later time.

Q: The reluctance of doctors to declare brain death seems to be one of the major impediments in the way of deceased organ donation. What do you think can be done to get them on board? Do we need to work on patient communication of doctors or hand over the job to grief counsellors? Do you face this kind of a situation in the U.S?
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Dr. Barry: Reluctance of neurosurgeons, neurologists, and intensivists to declare brain death is THE major problem in India and is even a problem in the US to a lesser degree. Formal and informal discussions and presentations between transplant doctors and ICU doctors can go a long way to increasing understanding and acceptance, but we really need to identify and cultivate champions of transplant within the ICU and Neurosurgery communities themselves. As I mentioned previously, death should not be regarded as a failure if the ultimate outcome is successful organ donation. This, indeed, is a victory over death that brings profound comfort and closure to the surviving family members and brings new life to the transplant recipients. This is the change in perspective that we hope to achieve.

Q: Kerala has a very morbid population, with a high prevalence of diabetes, hypertension and coronary artery diseases. Don’t you think that this could affect the organ donation programme adversely — for both organ donor as well as potential recipient?

Dr. Barry: In addition to diabetes, hypertension, and cardiac disease, fatty liver disease is also a growing problem in Kerala and throughout India. These chronic diseases can (and do) adversely affect the potential donor pool, especially in the cases of severe disease or longstanding disease. Many of the organ donors in Kerala are young road accident victims in whom these chronic diseases have yet to become manifest, but it would be ideal to recover organs from donors of any age. It is possible to transplant organs from donors with diabetes and fatty liver, but utmost care must be taken by the transplant surgeon to assess these organs (e.g., with laboratory data and biopsy results) to ensure that they will function adequately when transplanted.

With regards to transplant recipients, all of the diseases mentioned above can lead to end stage organ failure requiring transplant. Diabetes and hypertension are the main reasons why kidney transplants are performed. Fatty liver disease is predicted to be the major indication for liver transplant within the next 5 years. When these diseases present in combination, as they almost always do, the transplant procedures become more difficult. For example, a patient needing a liver transplant for fatty liver disease is likely to also have diabetes and heart disease, thus making their surgery much more high risk.

Q: Lifelong supply of immunosuppressant drugs is not an easy proposition for most of our transplant recipients, a chunk of whom come from indigent families. Most of them go into the transplant without realising the recurrent cost that the families would have to bear. How do you tackle this in the U.S?

Dr. Barry: In the US, if a person does not have insurance then s/he cannot have a transplant. Not only are the costs of surgery and postoperative care extremely high, but lifelong immunosuppression to prevent rejection is costly as well. If a patient is uninsurable, then s/he is not even listed for transplant because the precious donor organ would be wasted if immunosuppressant drugs were not taken properly.

In India, transplant doctors must emphasize that the expenses do not stop after the surgery. How to pay for these ongoing costs is an evolving question as the health insurance field is not nearly as developed as in the US. Government schemes and, possibly, assistance from transplant-specific public private partnerships (yet to be established), will be necessary to assist those transplant recipients who cannot afford out of pocket expenses indefinitely.

Q: How do you ensure equity in organ distribution — especially livers — in the U.S? Given the huge number of patients waiting for livers here and the current system of allocating the organs to hospitals on a rota basis, there are genuine concerns here that only the rich patients and corporate hospitals would benefit from the liver transplant programme. Can you comment on this?

Dr. Barry: Allocation of donor livers for transplant in the US is based on severity of illness. An objective score based on three simple blood tests (the MELD score, or Model for End-Stage Liver Disease) is calculated for every patient on the waiting list. The sicker the patient, the higher the MELD score and the higher the patient is on the list. This system assures that the liver goes to the patient who needs it the most. Strict rules are followed including when a super urgent case can override the highest MELD score and when exception points to the MELD score may be granted (for example, in the case of liver cancer). Non-adherence to these rules can result in the closing down of a transplant center by overseeing authorities.

The US system in this regard is quite fair because of its objectivity, transparency and accountability. These principles absolutely must be replicated here in India in order to foster public trust in the system. No one should be able to “jump the list” because they are politically important, rich or famous. I personally think that the rota basis of allocation practiced here in India is problematic, because the liver is offered to the transplant center’s list of patients instead of the next sickest patient who may be listed at a different center. This fact should be seriously debated by the liver transplant community in India and hopefully an allocation system unique to India’s needs will emerge that is as fair as possible.

Posted in organ donation | Tagged #drbarryindia, deceased donor liver transplantation, deceased donor transplant in India, deceased donor transplant in Kerala, Dr. Chris Barry, Dr. Noble Gracious, kerala network for organ sharing, KNOS, MOHAN Foundation, Narendra Modi, organ donation | Leave a comment

The Vital Roles of Nursing in Transplant’s Success

Posted on 23/11/2014 by Chris Barry

A successful deceased donor transplant program entails many elements, but perhaps one of the most vital elements is a well informed and dedicated nursing staff. Transplant nursing expertise must be present on many levels, from the ICU to the Operating Theater to the patient wards to the outpatient clinic.

First and foremost, any nurse involved in the transplant process at whichever point must be devoted to the cause. Transplantation and organ donation are true modern day miracles. People’s lives are saved. People’s lives are improved. People’s lives are transformed. Organ donation brings great meaning and honor to the donor and the donor’s family and loved ones. Nurses who understand these points and honestly believe in them will be the most effective caregivers and patient/family advocates.

Nurses in the ICU and even in the Emergency Rooms can play an important role in the organ donation process by recognizing impending or suspected brain death cases and informing the physicians and other caregivers in a timely fashion. Simple bedside observations, such as an absent gag reflex, absence of spontaneous respirations over ventilator support and fixed and dilated pupils, should prompt further investigations leading to consultation for a formal brain death exam. These clinical triggers can easily be protocolized so that the entire nursing staff is sensitized to calling an early alert. Timely recognition of brain death is important for a number of reasons: it allows for the consideration of organ donation, it can save significantly on hospital costs by avoiding unnecessary and expensive ICU care and, most importantly, it gives time for the healthcare team to engage with and compassionately educate family members on exactly what brain death is.

Once brain death has been declared and clearly explained to the family, the Transplant Coordinator is introduced who counsels the family during their grief and, when appropriate, begins discussion about the possibility of organ donation. If the family consents to organ donation, then the ICU nurses and doctors must work together to keep the potential donor stable before the recovery operation to remove the organs for transplant. This period of time is variable, depending how long it takes to mobilize the various surgical teams to come to recover the different organs, but can last anywhere from a few hours to even a few days. During this time, nurses stay with the patient to maintain the blood pressure, oxygenation and correct any metabolic abnormalities. They also interact with the family and the Transplant Coordinator during this profoundly difficult period of tragedy and loss. This is often when families come to terms with their loss by realizing that their loved one is a true hero, saving other people’s lives and living on in others.

The Liver Transplant Nursing Team in the operating theater must be well versed in the conduct of this difficult surgery and be absolutely devoted to the cause. They, as everyone else involved, are part of something very special. In this critical moment, their skill and attention to detail is every bit as important as the surgeons’ and anesthesiologists’ expertise. By necessity, a core group—the Liver Transplant Nursing Team—needs to be ready at a moment’s notice to devote many challenging hours in the operating theater to ensure that the patient does well and that the patient’s family has a positive experience. Nurses have an innate ability for emotional support and attention to the patient’s comfort and these qualities are just as important as their knowledge of such complicated procedures as liver transplant.

Back in the ICU, the nursing team must pay special attention to the specific needs of the transplant patient. They must understand what was done in the OT so they can look out for potential complications associated with the surgery. They work closely with the rest of the Transplant Team, including Surgeons and Intensivists, Hepatologists. Nurses are usually the first to detect any problems or deviations from a normal postoperative course, so their effective communication skills are valued and respected by the entire team.

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The same level of expertise and attention to detail is required for the Outpatient Transplant Nursing Staff in Clinic. Transplantation is a lifelong commitment, both for the patient and the entire Transplant Team. Successful long term outcomes in transplant are only possible by practicing continuous diligence and attention to the patient’s needs. A basic knowledge of immunosuppression medications (antirejection drugs) and their potential side effects is mandatory for the Transplant Outpatient Nurse to deliver optimal care.

Being a Transplant Nurse is not for everyone. It requires a special dedication to the causes of transplantation and organ donation, additional training on transplant related issues and a willingness to go the extra mile for transplant recipients before, during and long after their actual surgery. But being a nurse who is well informed about transplantation and organ donation is potentially for everyone. Obviously, the support and understanding for transplant even among nurses not directly involved in this miraculous process is essential so that countless lives may be saved and transformed.

Cultural Note

Pronunciation and comprehension are very important in learning a new language. As I start to learn Hindi, I am well aware of this after my friend Dilip ji told me the following story.

A prominent political leader from India (I don’t know exactly whom, but I know it was not Narendra Modi) was preparing for his trip to the United States to meet President Obama. He wanted to learn a little English, so his tutor instructed him that when one says “How are you?” the response is “I’m fine”. Then you should respond “Me too”. So the dignitary arrives and he asks the President “WHO are you?” Mr. Obama responded humbly and jokingly: “I’m the husband of Michelle Obama” to which the dignitary said “Me too”!

Posted in organ donation | Tagged #drbarryindia, bLifeNY, brain death, deceased donor transplant in India, Dr. Chris Barry, Jaipur, MFJCF, MOHAN Foundation, Narendra Modi, organ donation, Priyanka Chopra orga donation, Rajasthan, transplant nurse, vital role of nursing in transplant's success | Leave a comment

Starting a Deceased Donor Liver Transplant Program in India: No Easy Task

Posted on 17/11/2014 by Chris Barry

I finally made it to Jaipur, Rajasthan to begin my task of starting a deceased donor liver transplant program in the Sawai Man Singh (SMS) Government Hospital. The State Government, led by Chief Health Minister Rajindra Rathore and Health Secretary Mukesh Sharma, is 100% behind this mission, issuing all of the necessary Government Orders and dedicating crores of rupees (hundreds of thousands of US dollars) to make things work. The SMS Administration, led by Drs. Subash Nepalia (Principal) and Man Prakash Sharma (Superintendent), and the surgical staff, led by Dr. Sanjay Sharma, are all enthusiastic and eager to start. The local transplant NGO (non governmental organization), the MOHAN Foundation Jaipur Citizen’s Forum (MFJCF), is passionate about this cause with a cadre of devoted volunteers with significant experience and success with the Eye Bank Society of Rajasthan for cornea transplantation.

deceased donor liver transplant in India, Jaipur liver transplant, Rajasthan liver transplant, organ donation in India, Rajindra Rathore, Dr. Christopher Barry, MOHAN Foundation, MFJCF, brain death declaration in India, bLifeNY, #drbarryindia

Dr. Barry with Rajasthan Health Minister Shree Rajindra Rathore

So everything’s in place and we’re ready to rock. Piece of cake, right? Well, consummating this vision will be no easy task.

First of all, liver transplantation is not just about the surgery itself. Of course, we must ensure that all of the necessary equipment, supplies and technical expertise are put in place, but that’s just one of many steps. Ideally, an entire interdisciplinary team that is dedicated to quality patient and family care needs to come together. This includes Surgeons, Hepatologists, Anesthetists, Intensivists, Transplant Nurse Coordinators, Diagnostic Radiologists, Interventional Radiologists, Pathologists, Infectious Disease Specialists, Nurses, Social Workers, Psychiatrists, Pharmacists and Nutritionists.

At its very core, a well functioning liver transplant program requires a dedicated surgical team working closely with Transplant Hepatologists and a Clinical Transplant Coordinator. The surgical team must be well versed in performing organ recovery surgeries, liver transplants, and caring for patients before and after their surgeries. The Transplant Surgeon has to understand the physiology of liver failure, the immunology underlying organ rejection, the complications associated with liver transplant surgery, and all of the antirejection and opportunistic prophylaxis medicines. Primary responsibility for appropriate donor/recipient matching and successful perioperative and immediate postoperative care lies with the surgeon.

The Transplant Hepatologist is absolutely essential, providing patient referrals for transplant consideration, caring for patients while they are waiting on the list, managing both medical and surgical complications postoperatively, and providing long term follow up for all liver transplant recipients. They too, like the surgeon, must be expertly versed in problems associated with liver failure, immunology, opportunistic infections, and liver transplant postoperative complications. The Surgeon and Hepatologist should see all of their patients together on a daily basis and be in constant contact with each other.

The Clinical Transplant Coordinator (CTC) is different from the currently understood role of a Transplant Coordinator (TC) in India. The latter is a legally mandated hospital employee who organizes all aspects of the organ donation procedure, from organ allocation to patient family consent to organ recovery and transport logistics. The CTC is a specialized nurse who works daily with the Transplant Surgeon and Hepatologist to help put liver transplant candidates on the waiting list and know everything about the patients and their families from that point then through the surgery and beyond. This role is necessarily distinct from that of the TC focusing on the organ donation and recovery process.
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Transplant is a life long commitment for the recipient, the recipient’s family, and the Transplant Team. Attention must be paid to all aspects of this process (medical, surgical, social, financial) in order to achieve optimal outcomes. As such, more team members are required. Ideally, a dedicated Transplant Social Worker will know the details of each patient and each family and will be able to assist with issues such as rehabilitation facility placement (if needed) and patient compliance with postoperative medicines and clinic appointments. A Financial Coordinator assures that sufficient funds are available before and after transplant. A Transplant Psychiatrist is often needed to address issues of psychological suitability for transplant and relapse prevention in the case of liver transplantation for alcoholic cirrhosis.

The Hospital Administration must be solidly behind the Liver Transplant Program, with defined Policies and Procedures and commitment to providing sufficient funds for all aspects of the Program. This point cannot be understated. By law, each Transplant Center must have an appointed Brain Death Certifying Committee, a Transplant Coordinator for organ recovery purposes, and must regularly report all aspects of transplant activity–including short term and long term transplant outcomes–to the National Organ and Tissue Transplant Organization (NOTTO) and the Rajasthan Network of Organ Sharing (RNOS). Thus, the Administration must also be willing to invest in an internal transplant database and a Transplant Data Manager.

The cooperation of many other medical specialists is paramount as well. A well trained Nursing Staff—in the Operating Theater, ICU, and ward—is of course a critical necessity. Neurosurgeons, Neurologists, and Critical Care Intensivists must feel comfortable with brain death certification and maintaining potential donors in the ICU to optimize donor organ quality at the time of recovery. Radiologists (both Diagnostic and Interventional) must be available 24/7 to provide services on transplant candidates and transplant recipients. Pathologists should feel comfortable in diagnosing rejection, infection, and fatty liver on biopsies and sometimes be available at odd hours in the case of organ recoveries or patient emergencies. Infectious Disease experts familiar with transplant-associated opportunistic infections should also ideally be available.

A dedicated Transplant Pharmacist who is familiar with immunosuppressive drug dosing and drug-drug interactions should be available to round with the Transplant Surgeon and Hepatologist on a daily basis. Finally, it is often helpful to have the input of a Transplant Nutritionist to advise on dietary recommendations before and after transplant.

Can all of this happen in the context of the Indian Government Health Care System? Many would say absolutely not, given the inherent inefficiencies in any bureaucratically driven endeavor. But I think it is certainly possible. If the right team of professionals devoted to the cause can be assembled, if all of the necessary policies, procedures and protocols can be put in place, and if appropriate measures are taken to properly sensitize and educate other medical professionals about the miracles of transplantation and organ donation, then we can succeed. We must succeed if we are dedicated to saving hundreds of thousands of lives by offering liver transplant to every Indian citizen.

Posted in organ donation | Tagged #drbarryindia, bLifeNY, brain death declaration in India, deceased donor liver transplant in India, Dr. Christopher Barry, Jaipur liver transplant, MFJCF, MOHAN Foundation, organ donation in India, Rajasthan liver transplant, Rajindra Rathore | Leave a comment

Congratulations Mr. Modi and Dr. Harsh Vardhan for Your Progress on NOTTO

Posted on 01/11/2014 by Chris Barry

Dear Esteemed Prime Minister Modi and Minister of Health Dr. Harsh Vardhan: It’s been two years since the Indian Government announced the creation of the National Organ and Tissue Organization (NOTTO) for sharing of deceased donor organs for transplant all across the country. Crores of rupees have been set aside for this ambitious and absolutely essential initiative. It’s ambitious because a real time database containing pertinent details on all potential transplant recipients, donors, recovery surgeries in every donor hospital, transplant surgeries at every transplant center, and long term outcomes needs to be created and sustained. It’s absolutely essential because a world class national deceased donor transplant network needs to be efficient, transparent, and accountable in order to enjoy public trust and participation.

I’m deeply pleased to see the announcement that NOTTO will sign an MOU with the Government of Spain to share vital policies and procedures related to transplant and organ donation. Please note that the MOHAN Foundation (Multi Organ Harvesting Aid Network)—India’s largest transplant NGO—will sign an MOU with the British Government for a similar flow of transplant related information. Also, the Southern states of Tamil Nadu (established) and Kerala (emerging) can serve as valuable models as to how to carry out a national deceased donor transplant program in the Indian style. So, there are many forces in place to allow NOTTO to be created the right way and to flourish.

Hundreds of thousands of Indian citizens—across all socioeconomic boundaries, not just the rich—stand to benefit from deceased donor transplantation. The current volume of transplant (98% of which are from living donors) can be doubled or tripled with the introduction of a well functioning deceased donor transplant program. Heart and lung transplantation could flourish. The illegal organ trade (still, unfortunately, a reality here) can be tempered or even completely eliminated.

India has the talent to create an indigenous deceased donor transplant program, and I know that you both recognize this. IT and medical expertise abounds here. Many from outside of India are willing to help by sharing information and expertise regarding what works in other parts of the world and how these might be applied to India’s unique needs and ways of doing things. It absolutely can be done.

I encourage you both to pool India’s unique resources to create a world class deceased donor transplant program on the national level. NOTTO’s success would be a crowning achievement in Indian Health Care.

Sincerely,

Christopher Taylor Barry, MD, PhD, FACS

Advisory Board Member, MOHAN Foundation

Liver Transplant Surgeon and Organ Donation Advocate

Stanford, UC San Francisco, UC San Diego, University of Rochester

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Cultural note:

A Lovely Day at the Post Office

I could have entitled this essay “An Infuriating Day at the Post Office”, but the more time I spend in India and the more I become accustomed to the Indian way of life, I found my long day quite lovely and not the least bit infuriating.

My mission began at 11 am to send a parcel of gifts back home to the US. Even in the two and a half months that I’ve been here, I’ve accumulated enough gifts to fill a suitcase. I am deeply touched by the Indian sense of hospitality. Surely there will be more gifts to come. So, instead of lugging around my current booty, I decided to send a big box home. I Googled “parcel shop T Nagar” and found an address close by within walking distance (20 minutes). When I arrived, I was disappointed to learn that the ARC Parcel store does not do international deliveries. They directed me to the “Professional Courier” shop opposite the T Nagar Temple on Venkatanaryana Salai. When I arrived there, I was disappointed yet again to learn that the “professional” couriers only shipped documents (not gifts) internationally. So, it was off to the post office now, fortunately just a few blocks away.

I made it to the parcel packaging and shipping counter at the T Nagar main Post Office and began to wait patiently in line. Nothing happened for 30 minutes. I finally realized that I was on the wrong side of the cue (nobody bothered to tell me this but that’s okay, I figured it out myself). Then I stood patiently in my proper place on the “intake” side of the counter. When they saw the contents of my box (a beautiful—and gigantic—Kerala dancing doll with a green face, a plastic gold shrine of Meenakshi and her parrot from Madurai, various silks and toys from all over Southern India, etc.), they immediately asked me to fill out a disclaimer stating that the post office is not responsible for damaged goods as a result of transport. Fair enough. I signed.

Upon filling out the rest of the paperwork, the woman behind the counter taped my box up, covered it in cloth and sewed the cloth tightly to the box. Then I was asked to write the sending and return address on the box with a big blue magic marker. Almost finished right?

So now I was directed back to my original location, the side of the counter where bills were processed and payment accepted. Another long wait. The women working behind the counter finally took time for lunch which they enjoyed sitting on the floor behind the counter. They chatted with the only remaining active employee, the cashier woman in charge of my fate to wait. But I had already realized that it was no use in becoming angry or frustrated with this strangely slow pace. Maybe if I were a V.I.P. (a beloved status among all Indians) I could have paid someone to do this time consuming task, but I want to live like an Indian man as much as possible so this exercise in patience was good for me.

Nine thousand seven hundred rupees ($160 USD) was the total. I thought to myself: more than the cost of the gifts! But I was willing to pay. No credit card is accepted at the post office. I told the woman in my baby Tamil: “Ippo rubaya podumillai” (Now not enough rupees), “Enneku vangi rhomba pakkatil irrukiradu” (My bank is very close by), “Sikiram poituvaren” (Quickly I will go and come back).

When I returned with enough cash to pay my bill, the (new) woman behind the counter told me that the bill was only 5,100 rupees ($83 USD). Now, although this did not instill great confidence in me for the Indian Postal Service (Rs. 9,700 vs Rs. 5,100 which I would have paid the former if I had enough cash on me at the time), I was touched by this woman’s honesty. Maybe they appreciated my patience (it was 4 pm by now), maybe they appreciated my baby Tamil efforts, maybe they just made an accounting mistake and discovered it in time for my benefit, but I was grateful in the end to have accomplished the task and have paid a reasonable price.

Sometimes I wonder how anything gets done here in India with the relaxed pace of life. But I do notice that most everyone is content here (at least in Chennai). I want to join in this state of being content, so I won’t act like an angry American when I have to wait for something to get done. I will try to appreciate the Indian way of life as much as possible. At its best, it can be a comfortable way of life, an honest way of life, and a spiritual way of life. This is why I enjoy India so much.

Posted in organ donation | Tagged #drbarryindia, bLifeNY, Christopher Barry, deceased donor transplant in Inida, Harsh Vardhan, Kerala deceased donor transplant, Modi, MOHAN Foundation, national organ and tissue transplantation organization, NOTTO, organ donation, Tamil Nadu deceased donor transplant | Leave a comment

Paruvathamalai

Posted on 27/10/2014 by Chris Barry

Paruvathamalai is a Hindu temple in Tamil Nadu built 2,000 years ago on top of a mountain 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. Along 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 to 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 the 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 his left fingernails and two toenails bright pink—a simple “fashion statement” for rough kids. Balaji 1 was a beautiful boy but with many scars. These courses are available cialis samples inside the four walls of a formal lecture classroom or they can be availed to keep control over our asthma. Various laboratory methods for diagnosis of erectile dysfunction include an analysis of prostate secretion, blood and seminal fluid to generico viagra on line conclude on the level of hormones. What are the best foods to increase testosterone? You can include foods like potatoes, Brazil nuts, macadamia nuts, parsley, raisins, raw cacao products, ginger, argan oil, eggs, avocados, white button mushrooms, yogurt, pomegranate, blue cheese, grass-fed butter and dark berries in your daily diet to increase erection quality. linked here sildenafil soft You can get free delivery if you order cialis india generic from online. 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 here?” 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 tomorrow. 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.

Posted in Uncategorized | Tagged #drbarryindia, bLifeNY, Dr. Chris Barry, India travel experience, Lord Malikarjunaswamy, MOHAN Foundation, Paruvathamalai, Tamil Nadu Hindu Temple | Leave a comment

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

Posted on 19/10/2014 by Chris Barry

What is the risk of undergoing a living donor hepatectomy (removal of a segment of liver for 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 anywhere 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.

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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 in 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.

Posted in organ donation | Tagged #drbarryindia, AS Soin, deceased donor liver transplant in India, liver transplant outcomes in India, living donor hepatectomy, living donor liver mortality, Living Donor Liver Surgery Risks, Tamil Nadu | Leave a comment

Doctors’ Reluctance to Declare Brain Death in India

Posted on 09/10/2014 by Chris Barry

We are working at the MOHAN Foundation to promote deceased donor transplant and 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 (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 capable 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 economic 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.

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Cultural Note

When I first flew in to Chennai, it was a beautiful sunny morning. From the sky I saw thousands 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 garbage 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.

Posted in organ donation | Tagged #drbarryindia, #victoryoverdeath=#organdonation, bLifeNY, brain death, Chennai trash, deceased donor transplant in India, Doctors’ Reluctance to Declare Brain Death in India, Dr. Chris Barry, MOHAN Foundation, Narendra Modi, organ donation in India, Swachh Bharat | Leave a comment

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

Posted on 30/09/2014 by Chris Barry

The short answer to this question is that it’s going to cost a bomb.

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 include 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 are $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.
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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, that 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!

Posted in organ donation | Tagged #drbarryindia, bLifeNY, corporate social responsibility and transplant, cost of transplant in India, deceased donor transplant in India, Dr Amalorpavanathan Tamil Nadu, Dr. Chris Barry, Dr. Sunil Shroff, Indian Transplant Network, liver transplant in India, MOHAN Foundation | Leave a comment

Healthy Lifestyles for Healthy Organs

Posted on 24/09/2014 by Chris Barry

I would like to thank the Madurai Rotary Club for inviting me to speak this evening. I am 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 importantly, 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. 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 “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 (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 widespread 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.

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, particularly 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 from 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.

A 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.

One such study was undertaken at Cedars-Sinai Medical Center in tadalafil pharmacy LA. Although medical science has introduced several treating methods like vacuum generic levitra devices, ICP, surgery, penile implant, hormone replacement therapy etc., yet people have given preference to erection-helping medicines. You would be able to attain buy cialis professional the desired stiffness of male reproductive organ when you are excited to make love, you will not experience the effect just by taking the pill. A lot of enhancers in the market like purchase cialis. 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.

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!

Posted in organ donation | Tagged #drbarryindia, bLifeNY, deceased donor transplant, diabetes in Indians, Dr. Chris Barry, fatty liver disease in Indians, healthy lifestyles for healthy organs, heart disease in Indians, India, Madurai Rotary Club, MOHAN Foundation, organ donation | Leave a comment

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

Posted on 15/09/2014 by Chris Barry

End of life care is a new concept in India. Unlike Western countries where 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

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.
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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 matter, 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.

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

Christopher Taylor Barry, MD, PhD

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

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