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

Hope and Joy Within the Mourning

Posted on 11/08/2013 by Chris Barry

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.
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“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”

Posted in organ donation | 1 Comment

Cultural Taboos Surrounding Organ Donation

Posted on 21/07/2013 by Chris Barry

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.

As researchers have shown that men suffering from diabetes has blood sugar levels that are high because the insulin produced in the body is inadequate and thus glucose cannot enter sildenafil samples frankkrauseautomotive.com the bloodstream and be changed into energy. Doctors from all around the world recommend these medicines levitra in canada frankkrauseautomotive.com every year. It’s a pill viagra Tar that gives cigarettes smoke its smell and color. If the allergic tendencies get detected then you should not give up. prescription cialis 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 donor” 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, but 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!

HIV+ Transplantation: Allow + To +

Posted on 30/06/2013 by Chris Barry

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.
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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 17^th, 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.

Posted in Uncategorized | Leave a comment

We Love You for Signing Up to Be an Organ Donor

Posted on 15/06/2013 by Chris Barry

#drbarryindia, 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

(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 pictograph 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 (cbarrymdphd@gmail.com) 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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Support organ donation in India!

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

Support MOHAN Foundation

Dr. Barry with MOHAN Foundation, Gurgoan 2014

We Love You in Telugu!

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

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

#drbarryindia, #NarendraModi, 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

#drbarryindia, #NarendraModi, 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!

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True love at Niagra Falls

Posted in organ donation | Tagged #drbarryindia, #NarendraModi, #organdonation, #WeLoveYou, bLifeNY.org, Chris Barry TEDx, Christopher Taylor Barry MD PhD, deceased donor transplant in India, Dr. Chris Barry, Israel-Loves-Iran, kidney transplant, liver transplant, living donor transplantation, MOHAN Foundation, organ donation, organ donation awareness, organ donation in India, organ donor registry, Peace Factory, Ronny Edry, TEDxFlourCity, transplantation, WLY | 4 Comments

Youth and Organ Donation Awareness: the Kids Get It

Posted on 09/06/2013 by Chris Barry

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,
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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.

Posted in organ donation | Tagged bLifeNY, bLifeNY.org, bLifeRIT, bLifeUR, Chris Barry, Chris Barry TEDx, Christopher Taylor Barry MD PhD, do something, organ donation, youth and organ donation | Leave a comment

Linking Estate Planning with Organ Donation Registration

Posted on 03/06/2013 by Chris Barry

We 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.

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Why not try something like this in your town?

This estate planning organ donation educational intervention will not reach everyone (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 bLifeNY, bLifeNY.org, Chris Barry TEDx, Christopher Taylor Barry MD PhD, Donate Life America, estate planning, living will, organ donation, organ donation education, organ donation registration, organ donor register | 1 Comment

Search and Social in Organ Donation Awareness

Posted on 27/05/2013 by Chris Barry

I just finished reading Rob Garner’s “Search and Social: The Definitive Guide to Real-Time Content 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.

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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!

Posted in organ donation | Tagged bLifeNY, bLifeNY.org, Chris Barry TEDx, Dr. Christopher Barry, organ donation awareness, organ donation education, organ donation facts, Rob Garner, search and social, tipping point | 2 Comments

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

Posted on 19/05/2013 by Chris Barry

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”. An 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 difference 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.

Some people refer to the Hogan Development sildenafil generic cheap Survey as identifying the ‘Dark Side’ of a personality. Source from? You cheap tadalafil pills probably have not seen the primary collection or read the manga, haven’t any fear. As the woman is a passive partner, she may not say it out aloud viagra in for the fear of being ridiculed. They found that men with chronic disease such as diabetes, high cholesterol and high blood robertrobb.com sildenafil canada pharmacy pressure. 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.

Posted in organ donation | Tagged bLifeNY, bLifeNY.org, Chris Barry, Christopher Taylor Barry MD PhD, Donate Life America, Dr. Christopher Barry, Lauren's Law, living donor transplantation, mandated choice, nudge, Opt In, Opt Out, OPTN, organ donation, organ donation registration, SRTR, TEDxFlourCity | Leave a comment

Support NY Bill S.5046 to Improve the NY Donate Life Registry

Posted on 09/05/2013 by Chris Barry

The New York Alliance for Donation (NYAD) is a not-for-profit organization dedicated to increasing organ donation rates in New York State (just like bLifeNY!). New York is currently 48th lowest in the nation in terms of eligible citizens registered to be organ and tissue donors (only 20%), but it has the 3rd highest need for transplantable organs. Every 13 hours, one New Yorker dies on the list while waiting for a transplant. A major reason for this abysmally low registration rate is that it is difficult to actually register here. You need to go to the NY State Donate Life Registry, find the form, print it out, fill it out, then mail it back to them! Why not sign up online via an electronic registry?

Why not indeed. New York Bill S.5046 was recently introduced by Senator Kemp Hannon (hannon@nysenate.gov) that proposes a not-for-profit contractor (i.e., NYAD) to take over administration of the NY Donate Life Registry and facilitate enrollment through its website using an electronic signature. NYAD would also be charged with stepping up the education about and promotion of organ and tissue donation to the general public. NY State Assemblyman Dick Gottfried (GottfriedR@assembly.state.ny.us) will introduce the legislation to the Assembly next week (13 May 2013).

Most of the states with the highest registration rates (60-75%) employ not-for-profit agencies to manage their donor registries. When Texas turned over its registry to Donate Life Texas Inc. in 2012, registration rates skyrocketed. They predict 8 million new registrants within 5 years and will soon surpass New York (in 2011, they had the 49th lowest registration rate at 7%, but no longer).
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New Yorkers are good people. The vast majority of New Yorkers support organ donation. Yes we need more education and socially embedded “nudges” such as Lauren’s Law (you will soon have to be asked if you want to register to be a donor when you renew your license at the DMV in NY), but we also need it to be easy to sign up. Please consider writing Senator Hannon and Assemblyman Gottfried a brief note to express your support of Bill S.5046. I’m getting ready to do so myself and I will copy Governor Cuomo, Lieutenant Governor Duffy, Congresswoman Louise Slaughter, and Assemblyman Harry Bronson.

Does anyone see a downside to trying to save lives?

Posted in organ donation | Tagged Assemblyman Gottfried, Assemblyman Harry Bronson, bLifeNY, bLifeNY.org, Christopher Taylor Barry MD PhD, Congresswoman Louise Slaughter, Donate Life Registry, Dr. Chris Barry, electronic registry, Governor Cuomo, Lauren's Law, Lietenant Governor Duffy, New York State, NYAD, organ donation, Senator Hannon | Leave a comment

Gifts of Life in India

Posted on 02/05/2013 by Chris Barry

Deceased donor organ transplant is a nascent endeavor in India. Most liver and kidney transplants in this country are from living donors. bLifeNY applauds the efforts of organizations such as Shatayu to educate the public about the incredible gifts given when one becomes an organ donor. See this heartwarming story below as well as their wonderful video. Thank you Niksha. Thank you Shatayu. Thank you India.

Brain Dead teacher donates organs, helps 5 live longer

Late Smt. Niksha Talsaniya

Setting an example while undergoing a personal loss, the family members of a deceased school teacher, who was declared brain death after a brain hemorrhage, have donated her organs.

On the 19^th of April, while doing her regular household chores, Niksha suddenly started feeling dizzy and fell down unconscious. She was immediately rushed to V.S. Hospital. Despite a surgery to save her, she suffered a hemorrhage and was declared brain dead on 23^rd of April.

Mrs. Niksha Talsaniya, 47, a primary school teacher at R.M. Advaryu School in Vasna, gave a new lease of life to five others on Tuesday. Her only dream was to give her son higher education and help him secure an MBA degree. His son Mr.Gunjan recently got a job in Divya Bhaskar 5 days back. She was elated with her son’s achievement.

Her son, Mr. Gunjan says, “I will dearly miss my mother. She was the centre of my life. But I find solace in the fact that she will continue to live on through others who have received her organs”.
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The relatives were recovering from the shock when they chanced upon Shatayu’s poster on organ donation in the hospital. They instantly decided to donate Niksha’s organs and called up Shatayu’s helpline number. The counselors Mr. Maulik Shah and Mr. Kaushal Shah rushed to the hospital and explained the relatives about organ donation, brain death and the entire process of donating organs. The relatives readily agreed and Niksha was immediately shifted to IKDRC, where her two kidneys, liver and corneas were retrieved. The kidneys were given to two people of ages 25 and 52 respectively.. The liver was given to 52years old lady. According to doctors, the cornea retrieved from Niksha’s brain-dead body has been used in two blind patients, and it had positive results.

Her husband, Mr. Akshay Talsaniya says that his wife has given the best gift to humanity by donating her organs.

Always the first to arrive and last to leave, she was known for her punctuality and discipline and had a deep affection for her students. Mr. Natwarlal Talsania her father in law says, Niksha had a heart of gold and was always willing to lend a helping hand to the needy.

“Shatayu”, a non profit organization, is an organ donation awareness initiative by Govindbhai C. Patel Foundation, which is supported by Ganesh Housing Corporation. The organization works to dispel all the doubts and myths regarding organ and tissue donation, through awareness and educational campaigns.

Posted in organ donation | Tagged #drbarryindia, bLifeNY, bLifeNY.org, Chris Barry, Christopher Taylor Barry MD PhD, Dr. Christopher Barry, kidney transplant, liver transplant, organ donation, Priyanka Chopra, University of Rochester Medical Center, URMC | Leave a comment

Christopher Taylor Barry, MD, PhD