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.

 

Posted in Uncategorized | Leave a comment

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

 

Posted in organ donation | Tagged , , , , , , , | Leave a comment

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

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.

Posted in organ donation | Tagged , , , , , , , , | 1 Comment

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

Dr. deceased donor organ transplantation, Chris Barry, bLifeNY, organ donation, MOHAN Foundation, Dr. Sunil Shroff, Tamil Nadu, Chennai, India, transplantation

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

human organ black market, kidney racket, deceased donor organ transplantation, Dr. Chris Barry, bLifeNY, India, illegal kidney transplant

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.

Posted in organ donation | Tagged , , , , , , , , , , | 1 Comment

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”

hope, bLifeNY, organ donation awareness, Dr. Chris Barry, transplant, New York State organ donation

Posted in organ donation | 1 Comment

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!

blifeny, organ donation, taboos, Dr. Chris Barry

Posted in organ donation | Tagged , , , , , , , | Leave a comment

HIV+ Transplantation: Allow + To +

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

HIV+ transplantation, bLifeNY, URMC, transplant surgeon, organ donation, UCSF, Peter Stock, Elmi Muller, liver transplant, kidney transplant, HIV transplant

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

Posted in Uncategorized | Leave a comment

We Love You for Signing Up to Be an Organ Donor

bLifeUR, bLife NY, Dr. Chris Barry, organ donation, transplantation, #WeLoveYou, Ronny Edry, NYAD, NYODN, university of rochester

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…

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

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

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

#WeLoveYou, WLY, bLifeNY, Chris Barry, organ donation, transplant, Ronny Edry, We Love You,

#WeLoveYou, bLifeNY, Dr Chris Barry, organ donation, transplant, Peace Factory, We Love You,

#WeLoveYou...!, bLifeNY, Dr Chris Barry, organ donation, transplant, Ronny Edry, We Love You

#WeLoveYou, organ donation, bLifeNY, BecauseICanProject, organ donor registration, Ronny Edry, Peace Factory, Dr. Chris Barry,We Love You

We Love You, #WeLoveYou, bLifeNY, @bLifeNY, organ donation, organ donation registration, Ronny Edry, Peace Factory, Dr. Chris Barry

We Love You, TEDxFlourCity, bLifeNY, @bLifeNY, Chris Barry, Ronny Edry, Peace Factory, organ donation, #WeLoveYou...!, transplant, organ donation awareness

We Love You, bLifeNY.org, @bLifeNY, Chris Barry, Ronny Edry, Peace Factory, organ donation, #WeLoveYou...!, transplant, kidney transplant, living donor transplant, Tobey-Lennox Families

We Love You, liver transplant, living donor liver transplant, organ donation, bLifeNY, Chris Barry, Ronny Edry, Peace Factory, @bLifeNY, #WeLoveYou...!

We Love You, organ donation, bLifeNY.org, @bLifeNY, Chris Barry, Ronny Edry, Peace Factory

We Love You,, bLifeNY, organ donation, Doug Baker, Dr. Chris Barry, WeLoveYou, WLY

We Love You, Chuck Lundeen, John Williams, Dr. Chris Barry, bLifeNY, Ronny Edry, organ donation, Peace Factory, WLY, organ donation equality

Tina Carstensen de Lopez, bLifeNY, WLY, We Love You, Dr. Chris Barry, organ donation, donadores de organos, Ronny Edry, Mexico

Mike Stelljes, Michael Stelljes, Dr. Chris Barry, We Love You, Ronny Edry, WLY, organ donation, bLifeNY, liver transplant, living donor liver

Carol Kirkham Topi, We Love You, bLifeNY, WLY, organ donation, lung transplant, Ronny Edry, Dr. Chris Barry

We Love You, bLifeNY, organ donation, Dr. Chris Barry, Ronny Edry, Peace Factory, URMC Transplant, Priyanka Chopra

We Love You, bLifeNY, organ donation, Dr. Chris Barry, Ronny Edry, Peace Factory, living kidney donation

We Love You, bLifeNY, organ donation, Dr. Chris Barry, Ronny Edry, Peace Factory, liver transplant

We Love You, bLifeNY, organ donation, Dr. Chris Barry, Ronny Edry, Peace Factory, Chinese organ donation

We Love You, Pam Sherman, bLifeNY, Dr. Chris Barry, WLY, organ donation, the suburban outlaw, Ronny Edry, Peace Factory

We Love You, #WLY, organ donation, bLifeNY, Dr. Chris Barry, Ronny Edry, Peace Factory, liver transplant

We Love You, #WLY, organ donation, bLifeNY, Dr. Chris Barry, Ronny Edry, Peace Factory, living donor transplant

We Love You, #WLY, organ donation, bLifeNY, Dr. Chris Barry, Ronny Edry, Peace Factory, #DonaVida

We Love You, #WLY, organ donation, bLifeNY, Dr. Chris Barry, Ronny Edry, Peace Factory

We Love You, #WLY, organ donation, bLifeNY, Dr. Chris Barry, Ronny Edry, Peace Factory

We Love You, #WLY, organ donation, bLifeNY, Dr. Chris Barry, Ronny Edry, Peace Factory

We Love You, #WLY, organ donation, bLifeNY, Dr. Chris Barry, Ronny Edry, Peace Factory, UCSD, Philippines

We Love You, #WLY, organ donation, bLifeNY, Dr. Chris Barry, Ronny Edry, Peace Factory, youth

We Love You, #WLY, organ donation, bLifeNY, Dr. Chris Barry, Ronny Edry, Peace Factory, Chris Klug, liver transplant

We Love You, #WLY, organ donation, bLifeNY, Dr. Chris Barry, Ronny Edry, Peace Factory, youth, Provincetown

We Love You, #WLY, organ donation, bLifeNY, Dr. Chris Barry, Ronny Edry, Peace Factory, St. John Fischer, nursing, Peru, recycle yourself

We Love You, #WLY, organ donation, kidney transplant, bLifeNY, Dr. Chris Barry, Ronny Edry, Peace Factory, Finger Lakes Community College, Peru, recycle yourself

We Love You, #WLY, organ donation, bLifeNY, Dr. Chris Barry, Ronny Edry, Peace Factory, recycle yourself

We Love You, #WLY, organ donation, bLifeNY, Dr. Chris Barry, Ronny Edry, Peace Factory, recycle yourself, URMC transplant nurse, transplant

We Love You, #WLY, organ donation, bLifeNY, Dr. Chris Barry, Ronny Edry, Peace Factory, recycle yourself

We Love You, #WLY, organ donation, bLifeNY, Dr. Chris Barry, Ronny Edry, Peace Factory, recycle yourself, kidney transplant, living donor transplant

We Love You, #WLY, organ donation, bLifeNY, Dr. Chris Barry, Ronny Edry, Peace Factory, recycle yourself, Matt Haag, Rochester NY, Rochester City CouncilWe Love You, #WLY, organ donation, bLifeNY, Dr. Chris Barry, Ronny Edry, Peace Factory, recycle yourself, Andrew Sigond, CDTN, organ donation educationY

We Love You, #WLY, organ donation, bLifeNY, Dr. Chris Barry, Ronny Edry, Peace Factory, recycle yourself, living donor transplant

We Love You, #WLY, organ donation, bLifeNY, Dr. Chris Barry, Ronny Edry, Peace Factory, recycle yourself, Michael Philipson, Lewis Stess, Philipson Group

We Love You, #WLY, organ donation, bLifeNY, Dr. Chris Barry, Ronny Edry, Peace Factory, recycle yourself, liver transplantation

bLifeNY, we love you, organ donation, #WLY, Banksy, Dr. Chris Barry, Ronny Edry, Peace Factory, organ donation registration

Priyanka Chopra, we love you, Bollywood, India, Exotic, In My City, Disney's Planes, bLifeNY, organ donation, #WLY, Dr. Chris Barry, Ronny Edry, Peace Factory, organ donation registration

bLifeNY, we love you, organ donation, Dr. Chris Barry, Ronny Edry, living kidney donor, living donor transplantation, kidney transplantation

Priyanka Chopra, we love you, Bollywood, India, Exotic, In My City, Disney's Planes, bLifeNY, organ donation, #WLY, Dr. Chris Barry, Ronny Edry, Peace Factory, organ donation registration

bLifeNY, we love you, bLifeUR, organ donation, University of Rochester, Dr. Chris Barry, Ronny Edry, transplantation, #WLY, We love you for signing up to be an organ donor

bLifeNY, we love you, organ donation, Dr. Chris Barry, Randy Weiss, altruistic donor, kidey transplant, living donor transplant, We love you for signing up to be an organ donor

bLifeNY, we love you, organ donation, Indian youth, Priyanka Chopra, #WLY

bLifeNY, we love you, organ donation, Kidney Cares of Western NY, kidney transplantation, Dr. Chris Barry, living donor transplantation, #WLY, Ronny EdrybLifeNY, we love you, organ donation, Chinese organ donation, Dr. Chris Barry, transplantation, organ donation awareness

bLifeNY, we love you, organ donation awareness, bollywood, Priyanka Chopra, Dr. Chris Barry, Hindi, liver transplant, India, #WLY

bLifeNY, we love you, organ donation, living donor kidney transplant, Dr. Chris Barry, #WLY

bLifeNY, organ donation awareness, organ donor registry, Dr. Chris Barry, #WLY, Kidney Cares of Western NY

bLifeNY, Chris Klug, organ donation, liver transplant, Dr. Chris Barry, #WLY, Facebook

bLifeNY, we love you, organ donation, Dr. Chris Barry, #WLY, Albany, Center for Donation and Transplant, cdtny

bLifeNY, organ donation, #WLY, FaceBook, Dr. Chris Barry, organ donor registry

bLifeNY, we love you, organ donation, Dr. Chris Barry, #WLY!, organ donation registration

bLifeNY, we love you, #WLY!, organ donation, world transplant games, South African Organ Donor Foundation, Dr. Chris Barry

bLifeNY, we love you, organ donation, #WLY, New York State organ donation registration, Dr. Chris Barry

bLifeNY, organ donation, We love you for signing up to be an organ donor, #WLY, Dr. Chris Barry, URMC transplant, liver transplant

bLifeNY, organ donation, we love you, #WLY!, living donor kidney transplant, Dr. Chris Barry

bLifeNY, organ donation, we love you, #WLY, Stanford, Asian Liver Center, Dr. Sam So, Dr. Chris Barry, organ donation awareness

bLifeNY, we love you, #WLY!, organ donation, organ donation registration, Dr. Chris Barry

bLifeNY, organ donation, #WLY!, we love you, UC San Diego transplant, Dr. Chris Barry

bLifeNY, we love you, #WLY, Randy Weiss, altrusitic donor, organ donation, Dr. Chris Barry, living donor kidney transplantkidney transplant

bLifeNY, we love you, #WLY, organ donation, DonateLifeCDT, Dr. Chris Barry

bLifeNY, organ donation, Dr. Chris Barry, Ronny Edry, #WeLoveYou, transplantation, MOHAN foundation, NYAD, NYODN

MOHAN Foundation, Dr. Chris Barry, Dr. Sunil Shroff, organ donation, India, Tamil Nadu, Chennai, transplantation, NNOS, #drbarryindia

Support organ donation in India!

MOHAN Foundation, Dr Chris Barry, organ donation, transplantation, Dr Sunil Shroff, India, Chennai, bLifeNY, #drbarryindia

MOHAN Foundation, Dr Chris Barry, organ donation, transplantation, Dr Sunil Shroff, bLifeNY, India, Chennai, Tamil Nadu, #drbarryindia

Support MOHAN Foundation

MOHAN Foundation, Dr Chris Barry, organ donation, transplantation, Dr Sunil Shroff, bLifeNY, India, Chennai, Tamil Nadu, #drbarryindia

Dr. Barry with MOHAN Foundation, Gurgoan 2014

 

MOHAN Foundation, Dr Chris Barry, organ donation, transplantation, Dr Sunil Shroff, bLifeNY, India, Chennai, Tamil Nadu, #drbarryindia

We Love You in Telugu!

MOHAN Foundation, Dr Chris Barry, organ donation, transplantation, Dr Sunil Shroff, bLifeNY, India, Chennai, Tamil Nadu, #drbarryindia

 

bLifeNY, Dr Tom Starzl, Dr Chris Barry, organ donation, transplantation, Ronny Edry, #WeLoveYou, NYAD, NYODN

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

Dr. Mabel Bodell, Dr. Chris Barry, organ donation, bLifeNY, transplantation, kidney transplant, Ronny Edry, #WeLoveYou

Dr. Mabel Bodell of Johns Hopkins University supports organ donation

bLifeNY, organ donation, liver transplant, Dr. Chris Barry, Ronny Edry, #WeLoveYou, Mohan Foundation, NYAD, NYODN

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

#We Love You, organ donation, Dr Chrsi Barry, bLifeNY, Dr Mabel Bodell, Johns Hopkins, transplantation, ronny edry, mohan foundation, nyodn, dyad

True love at Niagra Falls

Posted in organ donation | Tagged , , , , , , , , , , , , , , , , | 3 Comments

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.

ImagineRIT, bLifeNY, organ donation, youth

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.

bLifeNY, youth and organ donation

Posted in organ donation | Tagged , , , , , , , , , | Leave a comment

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.

Posted in organ donation | Tagged , , , , , , , , , , | Leave a comment