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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Transplant in India: Is it All About the Money?

all about the money, #drbarryindia, blifeny, mohan foundation, dr chris barry, organ donation, deceased donor transplant, IndiaRecently, a spectacular transplant story came out of Chennai, India. A 21 year old woman from Mumbai received a heart transplant from a government hospital in Chennai. The story made national and international press and was a heartwarming triumph of modern medicine and human spirit coming together. There was even a little jealousy from the home of Bollywood that the transplant was not done there.

But a less publicized controversy arose over this case because the recipient’s name was published in the news the same day as the donor’s name. This used to be a big no-no in the United States and remains a big no-no in India. In the US, there was a fear for the privacy of both donor families and recipients, so all correspondences were kept anonymous. It has only been recently that many donor families and transplant recipients have come to know each other in person, and the often amazing bonds that are formed are questioning the rationale for total anonymity.

In India, the two reasons for strict anonymity between donor families and recipients are emotional and financial. The emotional argument is to prevent any overly strong or unrealistic expectations between donors and recipients. The financial argument is to prevent the donor family from attempting to extort money from the recipient or recipient’s family.

This has in fact, so I’m told, happened on at least one occasion. Is it really all about the money?

In order to build a respectable, efficient and powerful transplant system in India, both a transparent organ sharing system and reliable recipient outcome system need to be developed. But how do you pay for the establishment and maintenance of such an ambitious, albeit necessary, system?

Here’s one idea: corporate funding.

India recently passed a law that requires “qualifying” corporations to spend at least 2% of its average net profits on Corporate Social Responsibility (“CSR”). Don’t ask me what a qualifying corporation is, but we’re talking about $2 billion US dollars (yes, that’s billion with a “B”).

The US spends 17% of its Gross Domestic Product on health care. India spends 4% of its all about the money, #drbarryindia, MOHAN Foundation, organ donation, Dr Chris Barry, blifeny, organ donation, deceased donor transplant, IndiaGDP on healthcare. So what if the Indian corporate world spent just 2% of its Corporate Social Responsibility money on health care throughout India? That would be $40 million USD. Now, what if 2% of that allocation is dedicated to transplant and donation in India? That would be $800,000 USD. The transplant community in India has the obligation to approach transplant-specific corporations such as Astellas, Roche, Genzyme, Wyeth, Baxter, and Davida, but also ask for at least 2% of 2% CSR across the board.

Is $800,000 per year enough to sustain a world-class transplant system in India? Almost certainly not. The Government needs to chip in, we need to develop more formal public-private partnerships, and we will continue to need to rely on volunteerism and philanthropy.

But is it really all about the money?

I don’t think so. We’re talking about saving lives and giving meaning to the lives of people who’ve died and have given one of the most miraculous gifts imaginable: a human organ or tissue that allows the cycle of life to continue.

But if you catch me at just the wrong moment, I may just say: “yeah, it’s all about the money”. Life’s a balance between surviving and helping others. I don’t know about you, but for me, I’m happiest when circumstances in my life allow me to help others.

CULTURAL NOTE

#drbarryindia, Dr Chris Barry, organ donation, deceased donor transplant, MOHAN Foundation, blifeny, IndiaThe word for water in Tamil is “tahneer”. Easy! Great! Now you know a word in Tamil! Well, I spent longer than I needed ordering a bottle of water because the guy could not understand what I was saying. Turns out that the “n” in “tahneer” is pronounced by putting your tongue in the middle of your upper palate, a sound not known to the English language. Also, the “r” is pronounced as a trilled r in formal Tamil or not at all in colloquial Tamil. Learning to make new sounds in order to communicate. This is so cool.

#drbarryindia, MOHAN Foundation, deceased donor transplantation, India, Tamil Nadu, Dr. Sunil Shroff, Dr. Chris Barry, bLifeNY, organ trade, transplant tourism, #drbarryindia

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Deceased Donor Transplant Programs in India, Part 3: The Way Forward

MOHAN Foundation, #drbarryindia, bLifeNY, organ donation, deceased donor transplant, India, Dr. Chris Barry, #WeLoveYou..So the clock is ticking down and I’m almost ready to embark on my great adventure: a year-long sabbatical volunteering for the MOHAN Foundation to help increase deceased donor transplant activity throughout India. No small task, right? So before I launch in to what I think I should be doing there, I have to say a few words about my decision to crowdfund my trip.

I had always been reticent to engage in crowdfunding from the get-go. “Vanity begging” it seemed to me. But realizing that my salary would decrease to $0 for an entire year and that the opportunity existed to raise funds for the noble cause of transplant and organ donation awareness in India, I thought “why not?”

I am so grateful that my friends have donated so much. Not only will I be able to travel to and from India (economy class), but I will have a roof over my head and plenty to eat (food is not only delicious in India—it’s cheap!). In addition, thanks to the generosity of everyone, MOHAN Foundation will have hard cash to spend on professional education and public outreach specifically related to increasing deceased donor transplant activity throughout India.

For deceased donor transplantation programs in India to become viable and robust, much work needs to be done. However, many of the critical elements for success are already in place. The reasons for promoting deceased donor transplantation programs include increasing the opportunities for transplant to all Indians regardless of socioeconomic status and decreasing the need for exploitative and illegal organ trafficking. The challenges include overcoming negative attitudes toward transplantation among the Indian public, educating medical professionals about the efficacy of transplantation and how to manage potential deceased organ donors, and how to fund such programs given the constraints of Indian medical economics.

Most kidney and liver transplants in India are performed using organs from living donors (hearts, lungs, corneas, and pancreata must come from deceased donors). For living donor transplantation, the Transplantation of Human Organ Act (THOA) mandates that donors be close relatives or those having  “affection and attachment” to the recipient. In general, strict policies and procedures are followed to assure that organs are not being purchased by the recipients, but even to this day, news of illegal kidney trafficking in India emerges. The Indian public, therefore, looks upon transplantation in general with suspicion.

Even if such illegal activity did not exist, most Indians perceive transplantation as being available to only those who can afford it. In the United States, the transplant recipient’s insurance pays for the donor’s surgery and medical expenses. So if you have insurance, regardless of your socioeconomic status, you can get a transplant (note, however, that those who can not afford insurance are shut out of this system). In India, the recipient also pays for the donor’s expenses, but this is usually out of the recipient’s pocket, given the relative paucity of medical insurance in India. So the perception is that the recipient is buying the donor organ even when everything is above board and legal.

I think the two biggest challenges to acceptance of deceased donor transplantation in India are economic and social barriers.  The basic economic question is how to fund an infrastructure that allows nationwide sharing of organs, equitable allocation of organs, and transparent measurements of performance for all participating institutions that lead to a culture of accountability for outcomes. The social challenge lies in assuring the Indian public that a national transplant system—once established—is as fair as possible, engages in no favoritism, and effectively polices any illegal activities related to the field.

India needs to build a transplant infrastructure in which all hospitals engaging in transplant and donor organ recovery cooperate to achieve maximum efficiency of deceased donor organ allocation and outcomes tabulation. In the US, we have the United Network of Organ Sharing (UNOS), a non-profit established in 1984 whose mission is to “to advance organ availability and transplantation by uniting and supporting its communities for the benefit of patients through education, technology and policy development.” UNOS administers the only Organ Procurement and Transplant Network (OPTN) in the US and maintains the national transplant waitlist. Among its members is every Organ Procurement Organization (OPO) and hospital that performs transplants throughout the country. OPOs are independent organizations that oversee regions of transplant activity, coordinating organ offers and allocation to individual transplant centers according to UNOS rules. For instance, New York State has four OPOs, each servicing between two to ten transplant centers. In addition, there is Donate Life America, an independent offshoot of UNOS devoted to transplant and organ donation advocacy.

All of this activity in the US is funded by transplant recipients’ insurance, government support, private industry partnerships, and philanthropy. The funding stream in India will necessarily have to be different. Currently, all organ donation advocacy efforts are run by volunteers and private philanthropy. Transplants and organ recoveries are paid for by the transplant recipients and, to a lesser extent, the Indian Government, which provides free or low cost health care to all citizens. Increased governmental support, robust  public-private partnerships, and more generous philanthropy will all be needed in order to fund a viable transplant system in India. Quite a challenge indeed.

There are a number of organ donation advocacy non-governmental organizations (NGOs) in India that also assist with organ allocation, but there is no unified entity. Assembling a national transplant infrastructure will be a major challenge for the government and all interested parties. Likely, the systems will start locally depending on transplant centers and hopefully will organically coalesce over time. This will take a lot of cooperation between transplant hospitals and NGOs, but will also require commitments from local governments to assure that organ recovery surgeries can be performed at hospitals other than the transplant centers themselves.

My impression of the Indian public’s perception of transplantation and donation is that the idea is noble but the system is currently not entirely fair. As far as public acceptance of the idea of organ donation, this appears not to be such a problem. Most Indians embrace the notion of donation when appropriate education is provided. The real challenge is getting people to trust the system. This can only happen with the establishment of an efficient and transparent organ allocation system in which all interested parties are required to participate and all are held accountable for following agreed upon policies and procedures. In tech-savvy India, it should be entirely possible to quickly build a national database that tracks all transplants, organ recoveries and allocation, and transplant center outcomes.

This is all easier said than done, but it can and must be done. Well, I hope that I will be able to help in some small way. I’m ready!

MOHAN Foundation, deceased donor transplantation, India, Tamil Nadu, Dr. Sunil Shroff, Dr. Chris Barry, bLifeNY, organ trade, transplant tourism, #drbarryindia

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Dr. Barry’s Donate Life America Speech

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationI would like to begin by saying that it is an incredible honor for me to be speaking with you all today at the 2014 Donate Life America Conference in Maryland. I would like to specifically thank Libby Wolf of Donate Life Maryland, and Melissa Devenny and David Fleming of Donate Life America for inviting me to your conference. Today, I want to give you an update on my TEDx talk and to discuss our challenges as well as to suggest ways forward.

13 planes crashin, Donate Life America, David Fleming, blifeny, organ donation, Dr. Chris Barry, TEDx, #drbarryindia, OPTN, waitlistWhen I gave my 2012 TEDx talk, I presented the analogy of 13 jumbo jets crashing every year to emphasize the number of people dying on the transplant list while waiting for a donor organ to become available. That statistic, between 18 and 19 people dying on the list every day because there are far more people waiting than there are available organs, has remained constant since 1999.

 

13 planes crashin, Donate Life America, David Fleming, blifeny, organ donation, Dr. Chris Barry, TEDx, #drbarryindia, OPTN, waitlist

OPTN Database Wait List Removals

As I prepared for my address at today’s meeting, Donate Life America’s CEO David Fleming mentioned to me that there is something curious about this statistic (a point actually brought to David’s attention by his 12 year old son): how can it be that more people don’t die each year waiting if every year more and more people are added to the transplant waiting list but the number of transplants performed remains relatively flat?

According to the Organ Procurement and Transplantation Network (OPTN) database, 16,922 transplants (from both living and deceased donors) were performed in 1995 and 27,577 were performed in 2013. The waiting list over that same time span grew from 33,167 to 122,949. Looking at the “Waitlist Removal” report, we see that the number of people who died on the waitlist while waiting for an organ increased from 3,510 in 1995 to 6,222 in 2013—roughly a 2-fold increase. And this number has remained flat since 1999. But the number of people who were removed from the waiting list because they were “too sick to transplant” has increased 7-fold over the same period of time (686 in 1995 to 4,919 in 2013).

Now, being removed from the list because you are “too sick to transplant” is generally not a good sign. For people with end-stage liver, heart, or lung failure, it usually means that they will die in a short period of time. For kidney failure patients, even though the option of continued dialysis exists, life expectancy is considerably reduced. There are certainly some people who can get back on the list because they are no longer “too sick” (for instance, they recover from a urinary tract infection or a bout of bacterial peritonitis) but they are in the minority.

13 planes crashin, Donate Life America, David Fleming, blifeny, organ donation, Dr. Chris Barry, TEDx, #drbarryindia, OPTN, waitlistThe point is that the number of people who die each year before they can have a transplant is really closer to 11,141. That’s 30 people dying every day while waiting. That’s 22 jumbo jets crashing every year and there are no survivors.

 

 

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationWe’re talking about a simple signature to help prevent these deaths.

 

 

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationOf course, we need to emphasize to the public that we need to take action!

 

 

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationWe started bLifeNY specifically because there is a problem in NYS: only 21% of eligible New Yorkers are registered organ donors. I saw this problem every day when we had 1-2 ICU deaths every month or when we regularly have to recommend to our candidates that they seek care elsewhere in order to increase their chances for getting a transplant!

 

Here’s an interesting, if not unfortunate story. Tom Feeley of the University of Buffalo recently published an exit poll survey of New York State DMV customers, asking why or why not did they consider registering to become donors. Do you know what the most common reason for declining to become a donor was?

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantation“I don’t know”

Really?!

Does this mean that we humans are in general a blank slate? Or do we have a visceral reaction against the idea of organ donation? Or, do we not want to come out publically about our particular reservations? That is, do we not want to say what we really feel for fear of public condemnation?

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationYes, okay, we all know that organ donation is “icky”.

 

 

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationWhy don’t we just all do a run around and not even mention organ donation? Why don’t we ask “Join the Registry” as opposed to “Be an Organ Donor”?

 

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationDeath is a hard sell. Insurance companies know this. They talk about the economic benefits rather than what happens when you die. They call it “life insurance” as opposed to “death insurance”.

 

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationI am a firm believer that we need to emphasize the miracle of transplantation. We are helping to save lives, transform lives, to put life in perspective.  Why not just talk about what our real end game is? DJ playing lacrosse with his buddies 3 months after his kidney transplant?

 

 

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationTim loving life on Lake Tahoe 7 years after his liver transplant?

 

 

 

 

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationI think that we absolutely must celebrate the fact that we land 56 jumbo jets every year! 28,000 transplants, the vast majority which are immediately successful and most of which are successful in the long term. These are incredible gifts to humanity. And every single person in this room is contributing to this noble cause. We’re all saving countless lives here and we should celebrate this fact.

 

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationNow, having said that, we have challenges and problems. Our problems mostly have to do with human nature. There is a supply and demand problem that involves human lives.

 

 

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationFirst of all, I’m sure that all of you have experienced resistance to organ donation consent due to a certain sense of tribalism. “I’m not going to register because that other kind of person may get my organs”. Of course, these same tribes would not think twice about receiving an organ from an outsider, but the reality is that a certain percentage of the population is simply not going to sign up. I think it’s anywhere from 20-40% depending on the demographic.

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationThen there are class issues. Even in our amazing country the US, we celebrate equitable access to donor organs, but economic issues remain. Uninsureability due to low socioeconomic status is an absolute contraindication to transplant in our country. Poorer Americans are less likely to register to become donors in our country because they assume that their organs will go to wealthier people. Very rich Americans have the option to completely bypass the equitable and transparent organ donation system in the US by going elsewhere and engaging in “transplant tourism”.

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationThis brings up the organ trade black market. The organ black market is a reality because there are desperately poor people, desperately rich people, and a market shortage of “goods”. The illegal organ trade is thriving to this day in relatively poor or politically unstable countries.

 

 

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationBut please don’t deny that this activity doesn’t affect economically privileged countries. This man was arrested in New Jersey and sent to jail for 2.5 years back in 2009 for brokering illegal organ transplant transactions in major medical centers in the US. He was teaching “donors” (actually desperate people wanting to sell their own organ in order to escape poverty or debt) how to lie to legitimate US transplant psychosocial advocates so that they would be accepted as donor candidates.

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationThe real problem we face is a technical and scientific issue. Of the 16 million people who die every year in the US, only about 1% of them progress to the state of brain death. Of those 160,000 deaths, less than half will be suitable organ donors just based on medical and psychosocial reasons alone. Then there is the donor consent issue, which further constricts the prospects. Now, we all hear about the promise of stem cells and tissue/organ engineering, but I think we’re a ways off in that regard. Not to say that we shouldn’t actively support these types of research endeavors, but I sincerely believe that the answer to the organ shortage problem within our lifetime will be organ revitalization. Specifically, there is very promising research in warm perfusion technology (I have no financial concerns here). I envision “organ farms” in which organs from sudden death victims are kept perfused with body temperature oxygenated blood in order to give each organ a chance to recover from the initial ischemic insult. Not all organs will make it, but even a 1% success rate would immediately solve the organ donor shortage crisis in the US. Of course, such an endeavor would still require widespread organ donation consent by the majority of the population.

So what’s currently working in terms of organ donation awareness?

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationJust curious, how many of you think that altruism really exists?  How many of you think that we humans are capable of helping another human, even if we will stand to have no benefit or even if it means a potential threat to our own well being or survival? And how many of you think that “altruism” always involves some sort of selfish or self-preserving motive? Don’t be afraid to raise your hands! Most opinion polls would indicate that the human race is equally divided on this question.

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationThis brings up interesting and challenging questions regarding the organ donation mission. Organ donation in the US is completely driven by the notion of altruism. This is a noble perspective, but if only 50% of humans actually believe in altruism, then perhaps expanding our notions of human motivations may help us increase the organ donor pool. For example (and believe me, I don’t want to spend too much time stirring up this hornet’s nest), “presumed consent”, or considering any medically suitable organ donor to be willing to donate unless specifically stated otherwise, addresses both the pro-altruistic and anti-altruistic lobbies in that people who believe in freely giving to others would say “why not?” and that people who believe that only selfish reasoning would lead to voluntary donor designation would at least be conceptually okay with an opt-out process.

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationWhat about appealing to one’s notion of legacy? Many of us think about our legacies or even immortality in a conceptual sense. This message has the potential to especially resonate with middle aged to older donors. As you know, this is a critically important population to reach because most organ donors in the US these days are between 40-60 and they are the least likely to have first person consent or consent from their adult children.

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationKarma, the notion that every action has a consequence that somehow resonates equally in the spiritual or physical world, can be understood figuratively or literally. The former understanding, that is, the religious or spiritual understanding, can be effectively incorporated into culturally sensitive organ donation education. There is no reason why Hindus, Buddhists, Jains, etc., should not embrace the idea of donation. And from a practical standpoint, don’t you all believe that a kind and noble act has the potential to influence others to do the same?

 

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationThe notion of utility seems to resonate strongly with young people and forward thinking people these days. “Why not?” the kids say.

“Recycle Yourself” has proven to be an extremely popular meme in organ donation (bLifeNY in no way claims credit for this idea, we just ran with it). People smile, they laugh, it changes the perspective, it reinforces the message that donation is good, worthy, and utilitarian.

 

 

I’ve said enough about presumed consent for now, however I do want to warn everyone that there is a cultDonate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationural shift coming soon, much like what happened with gay marriage recently. A strongly emotionally polarized topic will one day, rather suddenly and unexpectedly, become a non-issue among the public majority. Young people are already asking me regularly “why don’t we have an opt-out system”? It’s just a matter of time for public opinion to shift.

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantation, Lauren's LawHow about nudges instead of big brother mandates?  Well, I wish I could report that Lauren’s Law in NYS (where the DMV has to ask if you would like to be a donor) has been a smashing success, but so far the data are not as encouraging as when Michigan passed a similar law a few years back. All I can say is whatever legislation we can get passed that is favorable to organ donation registry enrollment is fine by me.

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationAs far as financial incentives go for organ donation, I personally feel that it is fair to offer travel expenses and time off work expenses to living donors and that it would not be unreasonable to offer some sort of insurance benefits or funeral cost reimbursements to the families of deceased donors.

 

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationBut I do recognize that there is a slippery slope toward commercialization or commoditization. One question I do ask myself as a transplant surgeon is how purely emotional is my aversion to incentivizing donation? After all, we’re not as pure and fair as we would like to believe we are in our own minds and in the minds of others.

 

Here are soDonate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationme things that I know do work in terms of organ donation awareness.

Storytelling. Now, it’s nice that we can blog about our thoughts on organ donation and I try to do this as often as I can. But I can tell you that it was only when I spoke of my personal Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationexperience as a donor family member that I received my most heart-warming responses.

So I’m sure that you all realize that engaging grateful recipients and donor family members is the most powerful tool that we have to capture the minds and hearts of the lay public. Especially when it comes to face-to-face contact, Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationwhether it be at an awareness fair or electronically.

 

 

 

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationThe other concept that we must all embrace is the drumbeat. Every day, every minute, every second, we have to get our message out. In our modern “search and social” times, we have to strive to be “always on”. Think of all the wonderful media stories of celebrities or even every day folk that make a splash then die within minutes of our short attention spans!

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationHere’s a simple Facebook campaign that bLifeNY launched last year after I was inspired by a TED talk by Israeli graphic artist Ronny Edry. His message was basically “We Love You Iran, We Do Not Want to Bomb Your Country”. Our message was “We Love You for Signing Up to Be an Organ Donor”. We asked recipients, donor families, and donation supporters to send in their photos and we added the pictograph. We posted a new message every day and had a phenomenal response.

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationKids loved it. And you know that kids talk to their parents. Recipients and their families joined in and we experienced a thousand fold increase in our “likes”.  People from all over the world started participating including Mexico, South Africa, and the Philippines (by way of Southern California).

 

Donate Life America. bLifeNY, Dr Tom Starzl, Dr Chris Barry, organ donation, transplantation, Ronny Edry, #WeLoveYou, NYAD, NYODNEven Tom Starzl and Chris Klug liked what we were doing. People were literally waiting each morning for a new post. And the campaign was extremely easy to implement.

 

 

 

Donate Life America, Priyanka Chopra, Bollywood, India, Exotic, In My City, Disney's Planes, bLifeNY, organ donation, #WLY, Dr. Chris Barry, Ronny Edry, Peace Factory, organ donation registration, #drbarryindiaI’m not sure how many of you recognize this woman, but she is one of the biggest film stars in Bollywood, former Miss World Priyanka Chopra. bLifeNY is actually huge in India, touching millions of lives.

 

 

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationWhat we really need to strive for is a “normalization” of the idea of organ donation. Of course donation is a good and noble act, right? It’s the right thing to do.

 

Although we should continue to optimize our current portals for donation consent (the DMV and the ICU), we absolutely must expand our portals. Estate and financial planning, voter registration, college class registration, blood donation, grocery store pharmacy checkout, primary care physician offices, OMG the list is endless!

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationResearch shows that it takes two generations for a cultural change to take place. I think that we’re at less than 1.5 generations before organ donation becomes “first thought, best thought”.

The promise lies in engaging our youth, with an eye on us older Donate Life America, #drbarryindia, bLifeUR, bLife NY, Dr. Chris Barry, organ donation, transplantation, #WeLoveYou, Ronny Edry, NYAD, NYODN, university of rochesterfolk. The kids get it. They can teach their parents well. If all else fails, time will march on and as long as we are constantly sending out the right messages, change will happen on its own.

Yes, we need to encourage everyone to take action. But there are so many things we can do. I’m frustrated that good ideas are out there but we don’t have the bandwidth to carry them out. Also, think about all the big grants awarded to us and we don’t follow through with consistent practice.

Donate Life America, Dr Chris Barry, bLifeNY, organ donation, David Fleming, Melissa Devenny, Libby Wolf, transplantationDonate Life America has a responsibility to identify “best practices” and we all must do everything possible to implement these on a consistent and national level.  We, as a social movement, cannot afford to be selfish or shortsighted.

 

Yes, we’re all doing amazing work and saving lives every minute, but we can’t sit here and say “hooray for everything”. Think: “always better”, “cooperation and efficiency”, “maybe a new or different way works too”. I congratulate all of you for being here and it brings me great joy to be a part of your mission. Thank you.

 

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More Than 13 Planes Crashing Every Year?

In my 2012 TEDx talk on organ donation awareness, I presented the analogy of 13 jumbo jets crashing every year to emphasize the number of people dying on the transplant list 13 planes crashin, Donate Life America, David Fleming, blifeny, organ donation, Dr. Chris Barry, TEDx, #drbarryindia, OPTN, waitlistwhile waiting for a donor organ to become available. That statistic, between 18 and 19 people dying on the list every day because there are far more people waiting than there are available organs, has remained constant since 1999. As I prepared for my keynote address at Donate Life America’s Annual Meeting this year, Donate Life America’s CEO David Fleming mentioned to me that there is something curious about this statistic (a point actually brought to David’s attention by his 12 year old son): how can it be that more people don’t die each year waiting if every year more and more people are added to the transplant waiting list but the number of transplants performed remains relatively flat?

According to the Organ Procurement and Transplantation Network (OPTN) database, 16,922 transplants (from both living and deceased donors) were performed in 1995 and 27,577 were performed in 2013. The waiting list over that same time span grew from 33,167 to 122,949. Looking at the “Waitlist Removal” report (see figure), we see that the number of people who died on the waitlist while waiting for an organ increased from 3,510 in 1995 to 6,222 in 2013—roughly a 2 fold increase. But the number of people who were removed from the waiting list because they were “too sick to transplant” has increase 7 fold over the same period of time (686 in 1995 to 4,919 in 2013).

13 planes crashin, Donate Life America, David Fleming, blifeny, organ donation, Dr. Chris Barry, TEDx, #drbarryindia, OPTN, waitlist

OPTN Database Wait List Removals

Now, being removed from the list because you are “too sick to transplant” is generally not a good sign. For people with end-stage liver, heart, or lung failure, it usually means that they will die in a short period of time. For kidney failure patients, even though the option of continued dialysis exists, life expectancy is considerably reduced. There are certainly some people who can get back on the list because they are no longer “too sick” (for instance, they recover from a urinary tract infection or a bout of bacterial peritonitis) but they are in the minority.

The point is that the number of people who die each year before they can have a transplant is really closer to 11,141. That’s 30 people dying every day while waiting. That’s 22 jumbo jets crashing every year and there are no survivors. 13 planes crashin, Donate Life America, David Fleming, blifeny, organ donation, Dr. Chris Barry, TEDx, #drbarryindia, OPTN, waitlistThere are so many things we can do and that we are doing right now to make this situation better, from encouraging participation in organ donor registries to supporting preventive health initiatives to supporting research in donor organ preservation, revitalization, and engineering. It’s important to realize that 56 jumbo jets land safely and successfully each year (28,000 transplants), which is a remarkable achievement. We should, however, always strive to do better!

13 planes crashin, Donate Life America, David Fleming, blifeny, organ donation, Dr. Chris Barry, TEDx, #drbarryindia, OPTN, waitlist

 

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Deceased Donor Transplantation in India, Part 2: Indigenous Rackets and Transplant Tourism

In my last post, I introduced the factors influencing the emergence of deceased donor

Dr. Chris Barry, MOHAN Foundation, Dr. Sunil Shroff, organ donation, deceased donor transplantation, transplant tourism, organ trade, kidney rackets, THOA, NNOS, Tamil Nadu, India, kidney transplant, #drbarryindia

Dr. Barry addresses the MOHAN Foundation in Chennai

transplantation in India, a major one being the illicit organ trade. Before I delve in to the story from India, however, let me state that human organ trafficking is not limited to economically disadvantaged countries. Indeed, I once personally took care of a woman who needed a transplant who went to her homeland to fetch her “cousin” to became her donor. Our well established and respected transplant center followed all of our policies and procedures, including in depth psychological and social work interviews of both donor and recipient to make sure that there was no coercion (financial or emotional), but I always wondered about my patient’s cousin. It was so easy for me not to care too much. After all, everyone was engaging in a life prolonging and life transforming endeavor, right? Well, when Levy Izhak Rosenbaum was indicted for running a world wide kidney selling racket involving premier transplant centers in the United States, I realized that the realities of humanity can often trump our ideals.

I do not endorse the selling of body parts, but I understand that when there are desperately ill people with money and desperately poor people with decent health, the opportunity arises for a transaction. If illegal, then such transactions can become grossly unfair, treacherous, and immoral. While there are strong, albeit controversial, economic arguments in favor of monetizing organ donation (or at least providing non cash incentives), another way to dampen abusive organ trafficking is to increase the activity of deceased donor transplantation performed throughout the world.

In the late 1980s and early 1990s, India became a hotbed of living donor kidney transplant activity. Advances in antirejection medications, opportunistic infection prophylaxis, surgical techniques and medical care transformed transplantation from an experimental therapy to a highly effective, routine standard of care treatment for end stage organ failure. Highly skilled Indian surgeons and physicians returned home from their training in North America and Europe to offer this state of the art therapy to those who could afford it. It turns out that not only could wealthy Indians afford to afford to pay cash, but foreign nationals were drawn to India because the overall price of healthcare was (and is) much lower. Where did all the donors come from? Most of them were women and most of them were poor.

For about $1,600 US dollars (100,000 rupees), you can sell your kidney. You may be able to negotiate a slightly higher price if you are young, but there is the possibility that you won’t get paid at all or less than you were promised. Maybe you’ll be able to pay off some immediate debts, but evidence shows that you are unlikely to be able to rise out of poverty. Oh, and postoperative care? Never mind.

The rich supply of desperately poor people “willing” (and sometimes not) to sell their kidneys quickly led to a flourishing indigenous organ trade as well as a booming “transplant tourism” market in India. This highly lucrative scenario (recipients paying cash for their own transplant surgery and surgery for their donors/sellers) effectively stifled any serious efforts to organize a deceased donor transplantation system in India. In 1994, the Transplantation of Human Organ Act (THOA) was passed in India. This legislation legally defined brain death and outlawed the sale of human organs. Unfortunately, either through loose interpretation of a THOA clause allowing donation from biologically unrelated but those having “affection and attachment” or through good old fashioned fraud and forgery, the illegal kidney trade continued to boom in India.

It was not until 2008, after yet another “kidney scandal” surfaced, that the southern Indian state of Tamil Nadu decided to get serious about deceased donor transplantation. A number of government orders were issued to clarify the intent and workings of THOA and existing collaborations with transplant and donation advocacy NGOs (such as MOHAN MOHAN Foundation, deceased donor transplantation, India, Tamil Nadu, Dr. Sunil Shroff, Dr. Chris Barry, bLifeNY, organ trade, transplant tourismFoundation and NNOS) were intensified. The result was a remarkable increase in deceased donor transplantation in Tamil Nadu that has inspired other regions of the country to follow suit. Although this earnest effort is still in its infancy and “kidney rackets” continue to exist to this day, the hope remains that establishment of an efficient and robust deceased organ donor transplant system in India will obviate the need for an illegal organ trade.

In my next post, I’ll discuss the way forward in increasing deceased donor transplantation in India, with an emphasis on government hospital training and possible funding solutions.

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