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

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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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Deceased Donor Organ Transplantation in India, Part 1: An Emerging Trend

I just returned from a one month trip to India where I was privileged to witness an

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Dr. Chris Barry attending a MOHAN Foundation conference in Chennai

incredible country’s initial foray into establishing a deceased donor organ transplantation system.  India is the world’s largest democracy, has been experiencing remarkable economic growth in recent decades, and has state of the art medical facilities staffed by world class health care providers. Despite passage of the Transplant of Human Organs Act (THOA) by the government in 1994, organ donation from deceased individuals remains extremely uncommon in India. As is the case in most Asian countries, the vast majority of transplanted organs in India are from living donors.  This is largely because of cultural barriers, particularly the acceptance of brain death as a medical and legal entity, which have only recently begun to be perceived as surmountable.

So if THOA was passed in 1994, why only now is deceased organ donation beginning to take off in India? The answer has to do with: 1) government funding priorities, 2) complacency, and 3) the global human organ trafficking black market.

India is the second most populous country in the world (1.2 billion) with its citizens enjoying a decent life expectancy, but major causes of mortality (in addition to heart and lung disease and traffic accidents) include diarrhea, low birth weight, and infections such as influenza, tuberculosis, and malaria. The Indian Government, which miraculously provides free health care to all in need, has priorities far more important than expensive niche endeavors such as transplant. A number of very high end surgeries, including some liver and heart transplants, have been successfully performed completely free of cost in government hospitals, but the infrastructure (number of adequately equipped operating rooms and intensive care units, as well as trained medical personnel) is lacking to support large scale transplant activities.

On the other side of the Indian health care system is the private pay sector. Private hospital patients pay out of pocket (insurance remains relatively rare in India) to enjoy outstanding state of the art care, including transplantation. Because of the lower cost of health care in India relative to other parts of the world, many foreign nationals come to India for “discount”, yet high quality care. The lucrative nature of self paying Indian citizens and foreign transplant tourists, as well as the more relaxed and predictable nature of elective living donor transplantation, have led to a certain amount of complacency among many private transplant hospitals against moving forward with less remunerative and more logistically challenging deceased donor transplants.

What role has the human organ black market played in shaping deceased organ donor

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Evidence shows that organ selling does not cure poverty.

transplantation in India? (I will discuss this more in my next blog post, but here’s a brief introduction.) Increasing efforts to establish a robust and efficient deceased donor transplant system in India are actually being driven by a desire to curtail illegal transplant activity. Anywhere in the world where there are desperately poor people hoping to rise from the depths of poverty, there will inevitably be some others who will try to take advantage of this desperation for their own benefit. There are also desperately ill people with financial resources to seek care at any cost. Therefore, a black market in human organs for transplantation exists.

THOA was initially passed in hopes of curbing illegal human organ activities in India. Unfortunately, loopholes were found, bribes were paid, and “kidney rackets” flourished. In 2007, after news of yet another organ ring surfaced, the Tamil Nadu Government (a state in Southern India whose capital is Chennai, formerly known as Madras) had enough. Amendments to THOA were formulated to make the processes of deceased organ donation and allocation for transplant much easier and transparent. Since passage in 2009, Tamil Nadu has become the leading state in deceased organ donation with rates 10-15 times higher than the rest of the nation. Other states in Northern and Western India are catching on, and thanks in large part to the efforts of Non Government Organizations (NGOs) such as MOHAN FoundationNational Network for Organ Sharing, Organ India,  Zonal Transplant Coordination Center, and Shatayu (just to name a few), significant momentum is accumulating toward establishing robust systems to support deceased organ donor transplant throughout India.

The challenges for deceased donor organ transplant in India are many and significant. I

Dr. Chris Barry, deceased donor organ transplantation, bLifeNY, MIOT Hospital, Tamil Nadu, Chennai, India, organ donation, transplant

Dr. Chris Barry presenting a gratitude plaque to an organ donor family member at MIOT Hospital in Chennai.

for one, however, have great faith in this remarkable country’s intelligence, resourcefulness, and compassion to make this work. All Indians, regardless of socioeconomic status, could benefit from an efficiently run, non monetized, transparent system of donor organ allocation. All that is really needed is a strong will, hard work, and a big heart.

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Hope and Joy Within the Mourning

This story of hope was written by the daughter of one of our liver transplant recipients. Thank you for sharing! Hope always lives with organ donation and transplant.

“I have told this story at least 1000 times to anyone who would listen yet this is the first time I am putting it on “paper.” Papa contracted Hepatitis C but was never diagnosed until he donated blood for the first time. Within a couple of months of the diagnosis, he was in end stage liver failure. SCARY!!! Well, none of us were sure what that meant so when they asked him if he wanted to be put on the transplant list, he said “no.” He got really sick one time and decided he wanted to live and wanted an opportunity to receive a new liver so he asked to be placed on the list. I am going to spare you the details of how the list works. It can be tedious and I realize not everyone is as interested as I am in the details. To give you perspective, this was all in 2008. At times we thought a call may never come. One very snowy day in 2012 he called and said “They’re transplanting me!” (I love the way he said it!) So we rushed around, called everyone and spent the day at the hospital about 15 hours after the initial call, we were told the liver was not good for transplant. This was tough on everyone. We ran the gamut of emotions that day. We were really shocked when about two months later there was another offer made to him. We tried to contain our excitement this time. That was until the anesthesiologists came in and said “We are 15 minutes away, we are just waiting on the last biopsy result.” We were full of hope! Thirty minutes later a Resident came in and explained the liver was not good for transplant. Our hopes were squashed! Papa said “There will never be a liver.” I encouraged him and prayed that there would be. We lived our lives waiting for phone calls – whether it was to say there was a liver or for my mom to call to say he was not well and she needed help getting him to the hospital – every time the phone rang our hearts stopped.

Well on February 15 at 5 p.m. we received another call, there was a liver. We kept our emotions intact. That is not an easy thing to do for 12 hours. The anesthesiologists came in and said “we are waiting on the final biopsy results, we should know in 15 minutes.” My heart sank. I willed the phone to ring, I paced, I cried a bit and then I gave it to God. I did the same thing three days earlier, I told God I could no longer handle the worry, stress or frustration and I asked Him to handle it. I sat in a chair in a hospital room full of family all feeling the same way – knowing this may be our last few minutes of hope – and I relaxed knowing God’s timing is perfect. The doctors came in and explained it was a go! More than 12 hours after receiving the initial call, he was going into the O.R. I was so full of joy it was coming out of my eyes. I was able to pray with everyone and I asked the doctors if they wanted to join us – they did!

I prayed for the family of the donor. See, organ donation is a personal choice and I respect your decision regardless. However, this family will always be heroes in my eyes. They made the decision to donate the organs of their 20 year old family member. They provided hope and joy for nearly 50 people all in the midst of their mourning. I cannot imagine what that took. You see, I am an organ donor, my family knows and they do not have to make that decision when I pass but I don’t know this persons story and I pray for their family regularly.

My daughter hugged one of the surgeons and told them “Please take care of my papa.” She was able to thank that same surgeon 13.5 hours later when he came to tell us the surgery was a success. She then told the surgeon “No one should ever have to wait this long.”

Papa is doing well since his transplant. The liver was working and making bile before he left the O.R. He has had some setbacks which is to be expected but overall he is making progress and we are thankful for each and every step forward. He is still in the hospital and we do not know when he will be ready to come home but they are making sure he is on the right path. We could not be more thankful to our heroes, for without them we would not have the hope of many more years with Papa.

I won’t bore you with statistics and how organ donations work but please know the need is real. If you are interested in learning more, looking at how many people await organs or if you want to sign up to be an organ donor – please consider visiting one of the websites below. I believe it is about education and conversation. I do not believe this decision should have to be made at the DMV, ICU or the Emergency Room.

“but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:31 – The verse that got me through.

Finger Lakes Donor Recovery Network

Donate Life NYS

U.S. Department of Health & Human Services

bLifeNY”

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Cultural Taboos Surrounding Organ Donation

Taboos are “…vehement prohibition(s) of an action based on the belief that such behavior is either too sacred or too accursed for ordinary individuals to undertake, under threat of supernatural punishment” (Wikipedia). Of the reasons why some people are opposed to becoming organ donors, few are actual real taboos. The ideal of wholeness of self is particularly important in most Asian cultures and this real taboo is perhaps the major reason why deceased organ donation is not well accepted in most Asian countries.

I did a little informal research on this subject by asking my Asian friends about this taboo.

Alex replied: “You’re right that there is a reluctance to donate among the Taiwanese/Chinese community due to cultural barriers. Many Chinese think the body needs to be ‘whole’ to go to heaven. Also, myths persist that doctors will not try very hard to save you if you are an organ donor—though this belief is not specific to Chinese or Asians in general.”

Sally said: “Regarding the cultural barriers and taboos about organ donation, it is definitely not one of the best ideas/concepts that the Asian population harbor. (However, the idea of being a live donor is beginning to be more positively accepted.) To the Asian population, they normally think of organ donation as a means of removing organs from a body after death. In Asian customs/culture, many take into consideration bodily integrity in which was brought up in their beliefs. Also, this action is deemed as invasive and almost ‘rude’ to have organs removed from a body after death. The Asian population are very careful and respect the body after death and the concept of keeping the body ‘whole’ because the body also takes part in traditional ceremonial funerals that places emphasis on the ‘wholeness’ of the body. Therefore they do not particularly like the idea of organ donation.”

Wendy adds: “Yes, in China, organ donation is a sensitive topic that people would not like to discuss unless there is a very close relative involving. In Chinese culture, a person’s body should be interred intact, because people believe there is afterlife. Today, the organ donation system is relatively new for Chinese, and signing up for  organ donation is generally not favored by the parents. However, if a family member needs organ transplantation, his/her relatives would consider living organ donation such as bone marrow, liver or kidney. “

Finally, Sarah’s perspective: “Personally, I support organ donation and am a registered donor. I was also born and raised in mainland China which holds a belief that death is far from a pleasant cultural topic. In 2011, a person who donated his organ made to the national news…Organ donation is culturally unusual to majority of Chinese.

Buddhism had been and still is a dominant religion in mainland China and Taiwan. Buddhists believe that a person who died would enter into a cycle to have a second life only if that person had done good things and died in one piece. Because of this death philosophy, many elderly Chinese are strong believers of that being unable to die in one piece is a serious punishment.

Secondly, it is culturally common for Chinese to believe that death is only final when the person stops breathing and the heart stops beating, so the concepts of Ventilation and other life supports and brain death are very controversial. China enacted its first organ donation law in 2007, in which there was no legislation on the definition of brain death. This just tells us culture can be a strong influence on raising public willingness to become an organ donor. “

Sarah also sent me this picture for our bLifeNY “We love you for signing up to be an organ bLifeNY, #WLY, organ donation, FaceBook, Chinese organ donation, taboos, Dr. Chris Barry, Jade Ribbon Campaigndonor” Facebook campaign (thanks to David Omdahl, Chunkit Fung , and Google Translate for the translation). All of her friends in this pic were born and raised in China and all are registered organ donors. So cultural beliefs can change not only from one generation to the other, but (I believe with appropriate education) within generations.

Things aren’t always so simple, however. Audrey and Derek are registered organ donors, Taboos, We Love You, bLifeNY, organ donation, Dr. Chris Barry, Ronny Edry, Jade Ribbon Campaign, Peace Factory, Chinese organ donationbut Audrey’s parents are vehemently opposed to donation. They actually had language inserted into their living wills and powers of attorney stating their desire to be organ donors when they pass!

This taboo is not confined to Asian cultures. Only 5% of Orthodox Jews are registered organ donors despite the fact that most rabbinical authorities permit and encourage organ donation. The concerns are that two aspects of Jewish law might be violated: Kavod Ha-met (honor of the dead) and Nivul Ha-met (disgrace of the dead). These concerns, however, are largely a matter of perspective and Jews who are uncertain if donation would honor God’s name are encouraged to discuss this with their own rabbi. As Mishnah Sanhedrin 4:6 says, “Whoever saves one life, it is as if he saved the entire world.”

African Americans and Hispanics often cite a distrust of established authority as a reason for not wanting to register to become an organ donor. And we Americans in general don’t like to think about or talk about death. But these really aren’t taboos in the strictest sense. Similar to taboos, though, these perceptions can soften or change.

We all need to understand and respect these taboos and cultural barriers. They are potentially surmountable if we respectfully and compassionately educate our youth, engage our religious and cultural leaders, encourage family conversations, and emphasize the goodness of donation. Languages change. Cultures change. Individuals can change. It’s a simple matter of perspective. Simple yet oh so challenging!

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HIV+ Transplantation: Allow + To +

In an essay I posted a while back, I wrote of how HIV+ transplantation is approaching

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Dr. Chris Barry

standard of care. The remarkable, even unbelievable, successes of highly effective antiretroviral therapy to manage HIV, advances in opportunistic infectious disease prophylaxis and treatment, and current immunosuppressive regimens for transplant, all have come together to make successful HIV+ transplantation a reality.

People with HIV are living long, relatively normal lives and, as such, are increasingly experiencing other chronic diseases such as end stage organ failure. Before the advent of Highly Active Retroviral Therapy (HAART), the results of HIV+ transplantation were dismal.  But in the post HAART era, as demonstrated by a multi-institution study led by Dr. Peter Stock at the University of California San Francisco and reported in the New England Journal of Medicine, people with well controlled HIV fare nearly as well after kidney transplantation as does the general population.

When I say HIV+ transplantation, I mean HIV+ recipients receiving organs from HIV- donors. Ever since 1984, it has been illegal to transplant organs from HIV+ donors.  The absolute exclusion of HIV+ donors by the National Organ Transplant Act was initially meant to protect recipients from contracting HIV. But there is increasing evidence that HIV+ to HIV+ transplantation is possible with good outcomes, so there is an effort to modify the law in this regard.

In South Africa, HIV+ people are not allowed to undergo dialysis as a matter of public health policy and so they are left to die of end stage renal disease. Dr. Elmi Muller, a transplant surgeon, and her colleagues lobbied the Hospital Ethics Boards and the Government Health Agency to allow a pilot experiment of kidney transplantation between HIV+ donors and HIV+ recipients beginning in 2009. Their first four patients did very well, as reported in a letter to the New England Journal of Medicine, with all patients surviving past one year without rejection or the need for dialysis after transplant. Since then, Muller’s group has reported six more successes, with 100% survival and only one patient suffering a rejection episode that was successfully reversed.

In 2011, Dr. Dorry Segev of Johns Hopkins published a study in the American Journal of Transplantation estimating that 500-600 HIV+ donors could become available each year for transplantation to HIV+ recipients if the ban on HIV+ donors was lifted. There remain concerns about different HIV strains acting more aggressively in HIV+ recipients and the remote possibility of accidentally transplanting an HIV+ organ into an HIV- recipient, but there is a growing consensus that allowing HIV+ donation to HIV+ recipients would benefit the public good. Donor organs are precious resources, and any intervention that would allow potential recipients to be removed from long waiting lists should be welcomed.

On June 17th, 2013, The US Senate passed the HIV Organ Policy Equity (HOPE) Act by a unanimous vote.  The HOPE Act would permit HIV+ donor organs to be transplanted into HIV+ recipients. It also amends federal criminal law regarding HIV transmission, thereby clarifying that HIV+ donation to HIV+ recipient transplants should no longer be banned. The House bill, H.R. 698, is sponsored by Congresswoman Lois Capps (D-CA) and Congressman Dr. Michael Burgess (R-TX).

Passage of the HOPE Act would benefit thousands of transplant candidates awaiting transplant, both HIV+ people who could receive HIV+ donor organs and HIV- people who would enjoy shorter waiting times for HIV- donor organs. In addition, passage of HOPE would demonstrate that our society is a dynamic and intelligent one, responding to medical advances and appropriately amending legislation to maximally benefit our citizenry.

Please consider contacting your Congressional Representative (the House of Representatives’ switchboard is (202) 225-3121) to encourage support for H.R. 698, The HIV Organ Policy Equity (HOPE) Act.

blifeny, organ donation

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We Love You for Signing Up to Be an Organ Donor

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bLifeUR University of Rochester students promoting organ donation

“We Love You for Signing Up to Be an Organ Donor”! This bLifeNY campaign on FaceBook came about after I attended TEDxFlourCity 2013 a few weeks ago and saw the inspiring story of Ronny Edry. He is an Israeli graphic artist who started posting pictographics on FB with pictures of everyday people and the message “Iran We will never bomb your country We love you”. This heartwarmingly viral campaign is described in his amazing TED talk.

 

We’ve noticed that images posted on our FB page always get many more views than text

We Love You, bLifeNY, organ donor, Chris Barry, WLY, #WeLoveYou

(alas, wish more people would read my blog!). So we designed a template based on Ronny Edry’s “We Love You” campaign and asked people to send in their photos for posting on the bLifeNY FB page and tweeting via @bLifeNY.

We invite not just organ donors, organ donor families, and transplant recipients to participate, but also anyone interested in and supportive of organ donation. #WeLoveYou is about encouraging the conversation, increasing visibility in our every day lives, and “normalizing” the idea of organ donation. It’s okay to talk about and think about organ donation. It’s important to talk about and think about organ donation.

This post will serve as a repository for our “We Love You” campaign. Every time we drop a We Love You, #WeLoveYou, bLifeNY, organ donor, Chris Barry, WLYpictograph on FB, I will add it here as well. We invite you, your friends and loved ones, and anyone who is inspired to support the noble, challenging, and life saving cause of organ donation to participate. Email me you pics (chris_barry@urmc.rochester.edu) or send to our FB page.

We love you for supporting organ donation awareness! Register to be a donor in New York State or in your own state.

And thank you Ronny Edry! Your brilliant campaign for peace is saving lives in unanticipated ways. We Love You…

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Dr. Tom Starzl, father of liver transplantation, supports bLifeNY!

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Being an organ donor increases everyone’s luck to live on!

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Youth and Organ Donation Awareness: the Kids Get It

There is increasing evidence in the scientific literature that youth and organ donation awareness is a good combination. That is, young people are particularly receptive to learning about organ donation and overwhelmingly have positive attitudes about this challenging subject. A recent study by Cantarovich, et al., was discussed in an editorial in the journal Pediatric Transplantation. A global forum was convened to suggest best practices for organ donation education to teens at school, particularly addressing fears and misconceptions around the organ recovery process and religious beliefs. Instituting these practices is predicted to succeed in creating a more educated society concerning donation. A large scale international survey of studies (including the US) supports organ donation education efforts directed at adolescents, noting that participants become more knowledgeable about the subject and are more likely to discuss donation with their parents.

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bLifeNY at RIT

We at bLifeNY know from personal experience that young people get it. They are open minded and they want to make the world a better place. They are also energetic and social media savvy. We are delighted to have been successful in engaging youth, with the formation of college student groups (“bLifeUR” at the University of Rochester, “bLifeNY at RIT” at the Rochester Institute of Technology, and coming soon: “bLifeSJF” at St. John

Fischer College and “bLifeGeneseo” at SUNY Geneseo) as well as the participation of high school students and medical students in our efforts. Other very successful programs across the country exist, including the University of Michigan Wolverines for Life and the University of Wisconsin social media project.

And just look at the success of more broadly based organizations like Do Something, “the largest organization for teens a social cause”. We can and should “do something” with youth and organ donation awareness.

When properly approached and engaged, young people can easily move beyond fears and misunderstandings surrounding organ donation. My favorite response from an initially hesitant young man I talked to at a campus event was “Well, I really don’t see a downside, how do I sign up?” During these conversations, it’s very important to encourage young people to talk with their family members about what they’ve learned, what they may or may not have decided to do about it, and why. Everyone needs to be aware, and we older folk tend to be set in our ways. Maybe the kids can teach us a thing or two.

Beyond just having student organizations and putting on cool and meaningful events,

bLifeNY, youth and organ donation

bLifeUR paperdoll display

there are opportunities to embed organ donation awareness into our popular conscience. Why not routinely include this subject into high school, college, and professional school (medical, nursing, allied health professional) curricula? Why not include a question in college class registration or orientation materials: “Are you a registered organ donor? ‘Yes’ or ‘skip this question’”? Why not make it a “normal” thing to talk about?

Well, there are barriers. There’s only so much time. Time and effort cost money. There are competing “causes”. There are people in charge of these processes who may find organ donation “icky” or fear that their students may be made to feel uncomfortable (this is an important one—those adults again!). Or worse yet, these efforts may come across as a form of indoctrination or making people who say no to registering for donation feel bad.

These are all very real concerns and need to be addressed carefully and compassionately. We can make these interventions efficient and easy to implement. We can delegate responsibilities to enthusiastic volunteers to raise the appropriate funds for this worthy cause. We can educate, educate, educate, and show evidence with studies and surveys that young people really aren’t necessarily so grossed out by organ donation. We should always emphasize that the decision to become an organ donor is a highly personal choice and that no one is going to dis you for saying no.

So let’s get to it! Youth and Organ Donation Awareness: the Kids Get It.

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Linking Estate Planning with Organ Donation Registration

blifeny, organ donation, estate planningWe at bLifeNY believe strongly in creating appropriate environments for thoughtful consideration of organ donation. Think of the two most common places where organ donation is considered: the DMV and the ICU. Neither is the best place or circumstance to make such a serious and highly personal decision, right? Linking estate planning with consideration of organ donation creates an ideal environment on many levels.

Most importantly, when you visit your attorney or financial planner to discuss such things as living wills, powers of attorney, and health care proxies, you’re already in a serious state of mind about what you want to happen when you’re gone. You’re thinking about your family’s future, your wishes regarding end of life care, and your legacy. Why not also contemplate whether you would gift your heart, liver, kidneys, lungs, pancreas, corneas, or other tissues to someone in need after you pass? You may decide no. You may decide yes. Simply considering this issue is an act of profound compassion and maturity.

Another benefit to this environment is that you’re discussing donation with someone you trust and respect. Your estate professional doesn’t need to be an expert on transplantation and organ donation. She or he need only introduce this option and emphasize that by consenting to donation, the lives of many others could be favorably impacted. Links to other more in depth and authoritative resources could be shared with those who are interested in learning more.

An estate planning organ donation awareness environment also provides an opportunity for one to take definitive action. Register right then and there if you like. Put it in writing in your will so that your family and other beneficiaries have clear instructions. Or both. Although the vast majority of Americans favor organ donation, only about 40% nationwide are registered to become donors. Providing an immediate opportunity to register when the contemplative environment is ideal easily transforms intent into action.

Most of the estate planning attorneys and financial planners we have spoken with are very enthusiastic about routinely incorporating a brief discussion on organ donation into their conversations with clients. It makes sense. It’s a chance to do a good thing over and over again. But we might be too busy. We might feel uncomfortable. We might be afraid. An alternative to a heartfelt conversation would be simply providing an information sheet in the literature folder distributed to all clients. Here is an example of bLifeNY’s educational intervention that we hope to distribute widely to our local estate planning professionals: Estate Planning Organ Donation. Key elements to this document include introducing the idea and important facts about organ donation, links to deeper sources of information, and a registration form for those who are moved to act immediately.

Why not try something like this in your town?

This estate planning organ donation educational intervention will not reach everyone bLifeny, organ donation, transplant, estate planning(only one in four Americans has a living will), but global acceptance of the “1. Living will 2. Power of attorney 3. Organ donation” concept would have a significant impact in our society. Entire families would know an individual’s intention. Others might be favorably influenced to act similarly or at least learn more about donation. Discussions on organ donation would become more embedded and “normalized” into our culture.

Oh, and yes, people’s lives would be saved.

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Search and Social in Organ Donation Awareness

I just finished reading Rob Garner’sSearch and Social: The Definitive Guide to Real-Time Dr. Chris Barry Western NY Physician talks search and socialContent Marketing” and was impressed how applicable the information presented can be to organ donation awareness efforts. The basic tenet presented is that to effectively market anything these days, one must strive to be “always on”. Through coordination of traditional web SEO (search engine optimization) principles and newer social media tools and practices, one can and should engage in real-time conversations with followers, consumers, and broader audiences.

This is exactly what’s needed in organ donation education and advocacy. Despite the many effective efforts by established organizations such as Donate Life America, organdonor.gov, and every organ procurement organization (OPO) nationwide, as well as smaller grassroots efforts such as bLifeNY and Recycle Yourself, the topic of organ donation remains decidedly non-sticky. People are naturally averse to thinking about what happens when they die. Those interested in transplantation and organ donation have many resources for high quality content, but the general public seems not so interested. My TEDx talk on organ donation has saturated the donation “industry”, but gets little play in the real world. Mark Zuckerberg’s initiative to encourage FaceBookers to post their organ donation registration status and drum up conversations made a big media splash last April, but interest did not persist. Heart warming stories of celebrities (Steve Jobs, Phil Lesh, Natalie Cole), athletes (Chris Klug, Alonzo Mourning, Sean Elliot), politicians (Dick Cheney, Prince Daniel of Sweden, and Robert Casey), and everyday people receiving life saving transplants regularly appear in the media, but peak attention lasts at best a few days. Again, illness and death, even when averted by a miraculous gift, is apparently a real downer.

We need to normalize organ donation. This noble intention needs to be embedded into our cultural psyche. Yes, becoming an organ donor is a good deed and you should at least consider the possibility after learning the facts. Search and social techniques can help ensure daily conversations, or at least exposure to educational and inspirational content, so that we can achieve the tipping point where everyone realizes that it’s okay to learn about organ donation, talk about it, and even considering taking action if one wishes.

Mr. Garner’s book provides countless valuable tips on how to engage your audience and attract new followers by optimizing your website for search engines, maximizing your “digital asset” (text, videos, images, podcasts, etc.) visibility, and hard wiring your other social media platforms (FaceBook, Twitter, Google+, LinkedIn, YouTube, etc.) to your website(s) and blog(s). I am not a coder, but I am able to implement many of these suggestions on my own. And when I need help from more knowledgeable folk, I’ll know what I want. It does take time, but much of it is upfront time and I am convinced that the outcome is well worth the effort.

What does seem to take an impossible amount of time is the ideal of being “always on”. Responding to comments in real-time is best practice for search and social. Being a busy transplant surgeon with an active research lab, the best I can strive for is being “near” real time. Mr. Garner has motivated me to post on my blog weekly and to respond to my readers as quickly as possible, but there’s only so much I can do as an individual despite my passion for organ donation awareness. So what about “elves”? Our little organization, bLifeNY, has many members with administrative privileges for our FB and Twitter accounts, so I can definitely spend some time teaching them about the principles behind search and social. I can continue to invite guest bloggers to share content. I will optimize RSS feeds of our content to the outside as Mr. Garner instructs.

One key tenet we have identified to increase organ donation awareness is to provide different environments for contemplation (other than the DMV and ICU). Such environments include estate planning meetings, primary care physician well visits, company retirement and benefits seminars, and college orientations and class registrations. It’s simple enough to provide content for these environments (a one page information and link sheet plus a donor registration form), but search and social principles will be required to really make these efforts work. People need to know that these efforts are happening, they need to feel comfortable in reaching out to authoritative information sources, they need to feel free to ask personal and difficult questions, and they need to be able to easily take action when they’re ready. Marrying well-maintained and authoritative websites and blogs with social media spaces is essential in embedding organ donation awareness into our popular conscience.

Thanks Rob!bLifeNY: Recycle Yourself and employ Search and Social

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Opt In, Opt Out, and (Modified) Mandated Choice

The phenomenal success of organ transplantation has created an ever-growing disparity between the number of people waiting for life saving transplants and the number of donors available. The Organ Procurement and Transplant Network (OPTN) and Scientific Registry of Transplant Recipients (SRTR) report current graft survival rates for most organs at 3 years greater than 70-80%. According to Donate Life America, as of 2011, 120,000 people were awaiting transplants but only 28,000 transplants were performed. Every day, 19 people die on the transplant waitlist because there are not enough donor organs. Efforts to increase the donor pool, such as performing more transplants from living donors and encouraging organ donor “swaps”, accepting organs from elderly donors or from donors with chronic diseases (e.g., high blood pressure or—in special cases—hepatitis C or hepatitis B), and “splitting” organs in the case of liver and lung, have proved insufficient to close the gap. Fundamental changes in organ donation technology, including mechanical devices, organ engineering, and revitalization of organs from sudden death victims, are on the horizon (more on this later), but the donor organ shortage problem remains acute here and now. There is more that we as a society can and should do.

The United States practices an organ donor registration policy referred to as “Opt In”. Anopt out individual voluntarily registers to become a donor in the future if he or she wishes. Certain European countries including Spain, Portugal, and France, practice an “Opt Out” system, whereby every citizen is presumed to be a donor unless they specifically say that they do not want to do so. Effective consent rates range from 98-100% in these Opt Out countries compared to 4% (Denmark) to 40% (US) in Opt In countries. I frequently get asked the question, particularly by young people, why we don’t practice an Opt Out organ donation system here?

Well, this turns out to be an extremely emotionally charged topic.

There are many passionate and often logical arguments against an Opt Out system here in the US. The most persuasive argument, in terms of swaying public opinion, is that the decision to register one’s intent to become an organ donor upon one’s death is a highly personal one and that governmental “presumption” of one’s wishes would be an unspeakable encroachment on personal liberty.

Fair enough, but I don’t quite buy it.

Opt Out still allows an individual to make a choice. They just have to choose “no” if they wish. Although the vast majority of Americans favor organ donation, too few take the effort to register their good intentions. Why not acknowledge public opinion by allowing everyone to be donors and make it easy for those who do not want to donate by simply clicking “no”? As I’ve said before in my TEDx talk, I’m perfectly fine with someone’s decision not to be a donor. I respect your decision either way. I do think, however, that it needs to be an informed decision.

Some predict that initiating Opt Out would actually decrease current registration rates because so many people would be offended by being “forced” to do something without their permission. This could be the case if adequate and unbiased information is not provided and the point that the individual has a choice is not adequately and sensitively stressed. People need to know that they could make a difference in many others’ lives after they die. They need to appreciate that their decision has meaning beyond their own personal interests, fears, and misunderstandings. They need to know that it is their own, highly personal choice. No one is forcing them to do anything. Just say no if you don’t want to donate.

A more compelling argument against Opt Out is that it wouldn’t make much of a opt outdifference here in the US because our transplant and donation infrastructure is so highly developed and efficient. Organ donor rates per million population are not too different between Spain (32) and the US (25), and the US outperforms several other Opt Out countries in this regard. A corollary to this is the reality that even if everyone were a registered organ donor, this would still not solve the organ donor shortage problem.  Thousands of patients still die on the waitlist even in Opt Out countries with 99% registration rates.

But are these really good reasons to not increase the number of potential donors? We may not be able to completely solve the problem, but thousands of lives could still be saved.

I predict that we will ultimately be able to solve the donor shortage problem with a combination of mechanical devices, biomedical engineering, and revitalization of organs from sudden death victims. “Ventricular Assist Device” (heart pump) technology has advanced dramatically and sufficiently such that implantation of these machines has surpassed the number of heart transplants performed and may offer a long lasting alternative. Research in “growing” organs in the lab with a combination of bioartificial (or organic) scaffolds and stem cell repopulation is coming along and, although nowhere near ready for primetime, will one day result in a viable solution. Closer to reality is the idea of recovering organs from sudden death victims (most people, 16 million per year, die suddenly of strokes, heart attacks, and trauma as opposed to progressing to brain death in the ICU, only 1% of deaths) and “nursing” them back to health in the lab with a combination of artificial perfusion and infusion of growth factors and other protective molecules. This is already being practiced to some extent in lung transplant, where select centers recover the lungs and bring them back to the lab to perform quality checks on a mechanical ventilator to determine which organs are suitable for transplant. The future is bright, but what do we do right now?

I have to admit that I am on the fence about Opt Out simply because I don’t think our culture is ready to accept this noble notion. We need to continue educational efforts and wait for the younger generation to come of age. At this point, I favor “Modified Mandated Choice”. This an embeddable “nudge” to get people to consider the idea of organ donation without forcing an actual decision. New York State recently passed “Lauren’s Law” that requires visitors to the Department of Motor Vehicles to answer the question “Would you like to register to be an organ donor?” before they receive their driver’s license (or renewal). The answer choices are “Yes” and “Skip this question”. Similar legislation exists in other states and implementation has resulted in increased registration rates. This type of nudge could be incorporated into other environments such as college class registration materials, primary care well visit questionnaires, estate planning documents, and employee benefits forms.

Just ask the question. Think about it. Learn more about it. Talk with your loved ones and friends about it. Registering to become an organ donor is an incredibly kind intention. It’s okay to give it your thoughtful consideration.

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